EDEN: Evaluating the development and impact of Early Intervention

Transcription

EDEN: Evaluating the Development and Impact of Early Intervention Services
(EISs) in the West Midlands
EDEN: Evaluating the
development and impact of
Early Intervention Services
A Report for the NHS Service Delivery and
Organisation National R & D Programme
July 2006
Prepared by
Professor Max Birchwood
Professor Stirling Bryan
Mrs Nicola Jones-Morris
Mr Billingsley Kaambwa
Professor Helen Lester
Ms Julie Richards
Dr Helen Rogers
Ms Namita Sirvastava
Dr Effy Tzemou
Address for correspondence
Professor Helen Lester
National Primary Care Research and Development Centre
5th Floor Williamson Building
Oxford Road
Manchester
M139PL
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Contents
Acknowledgements
6
Abbreviations
6
Executive summary
Introduction
Aims and objectives
Methodology
8
8
8
Conceptual framework
8
Location
8
Data collection and analysis
8
Formative aspect
8
Summative aspect
8
Findings and discussion
Objective 1: To provide information on key aspects of EIS
development and delivery to maximise the effectiveness of
emerging services
9
9
Aims and visions of the services
9
Issues of access
9
Youth sensitivity and engagement
9
Issues of stigma and stereotyping
9
Usefulness of EISs from the perspectives of users and carers 10
Objective 2: To identify key components of successful service
configurations and their adaptation in different geographical and
socio-economic settings and understand how local factors
facilitate or hinder EIS development
10
Hindrances
10
Facilitators
11
Objective 3: To understand effect of structural relationships between
Primary Care Trusts, Mental Health Trusts and Social Care Trusts
on commissioning and/or providing EISs and identify lessons for
future development of EISs within a whole- systems approach to
mental health
11
Objective 4: To provide information on the relationship between
different service configurations, fidelity to national EIS guidance
and key pre-defined outcomes such as duration of untreated
psychosis (DUP)
12
DUP model
13
Sectioning model
13
Objective 5: To explore reasons for variation in the costs associated
with the delivery of EISs
13
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Implications
13
The Report
1
Introduction
1.1 Introduction
16
1.1.1 Background
16
1.1.2 The economic costs of psychosis
16
1.2 The policy context
1.2.1 Rationale for developing bespoke EISs
1.3 Aims and objectives
2
16
Methodology
17
19
21
22
2.1 Conceptual framework
22
2.2 Location
23
2.3 Data collection and analysis
24
2.3.1 Data collection: formative aspect
24
2.3.2 Data analysis: formative aspect
26
2.3.3 Data collection: summative aspect
26
2.3.4 Data analyses: summative aspect
27
2.4 Development and use of the fidelity scale
30
2.5 Data handling and management
33
2.5.1 SHA, PCT, Mental Health Trust senior managers and EIS
Team Leads and members
33
2.5.2 Service users and carers
33
2.5.3 Audit data collection
34
2.5.4 General administration
34
2.6 Deviations from the protocol
34
2.7 Research governance
36
2.8 Study monitoring group
36
3
Findings
3.1 Formative evaluation
37
37
3.1.1 Strategic Health Authority and PCT executives and senior
managers (Mental Health Trusts)
37
3.1.2 Commissioner experience
37
3.1.3 EIS Team Leads' and team members' experience
44
3.1.4 Service user experience
83
3.1.5 Carer perspectives
90
3.1.6 Links with other organisations
98
3.2 Summative evaluation
3.2.1 Audit data
4
103
3.2.2 Comparisons with previous work
106
3.2.3 Fidelity scale
108
3.2.4 Regression results
113
Discussion
4.1 Limitations of the study
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115
115
3
4.1.1 User and carer interviews
115
4.1.2 Limitation of descriptive statistics
115
116
4.1.4 Limitations of statistical models
116
4.2 Objective 1: To provide information on key aspects of EIS
development and delivery to maximise the effectiveness of
emerging services
116
4.2.1 Aims and visions of the services
117
4.2.2 Issues of access
118
4.2.3 Youth sensitivity and engagement
119
4.2.4 Issues of stigma and stereotyping
120
4.2.5 Service user and family involvement in care
121
4.2.6 Service users’ and carers’ experience of initial treatment121
4.2.7 Perceived utility of EISs from the perspectives of users
and carers
121
4.2.8 Availability of psychological interventions
122
4.2.9 Treatment of co-morbidity
122
4.2.10
Professional roles and responsibilities
123
4.2.11
Financial management
123
4.3 Objective 2: To identify key components of successful service
configurations and their adaptation in different geographical and
socio-economic settings and understand how local factors
facilitate or hinder EIS development
123
4.3.1 Hindrances
124
4.3.2 Facilitators
125
4.4 Objective 3: To understand the importance of the effect of
structural relationships between Primary Care Trusts, Mental
Health Trusts and Social Care Trusts on commissioning and /or
providing EISs and identify lessons for future development of
EISs within a whole systems approach to mental health
127
127
4.4.2 Organisational culture
128
4.4.3 The depth and quality of organisational relationships and
their impact on the commissioners’ role
128
4.4.4 Structural relationships between organisations and
implementation issues
128
4.4.5 Strategies to overcome barriers to relationship
development
129
4.5 Objective 4: To provide information on the relationship between
different service configurations, fidelity to national EIS guidance
and key pre-defined outcomes such as duration of untreated
psychosis (DUP)
129
4.5.1 DUP model
129
4.5.2 Sectioning model
130
4.6 Objective 5: To explore reasons for variation in the costs
associated with the delivery of EISs
131
4.7 Implications for Local and National Policy
131
4.7.1 Implications at a local level
131
4.7.2 Implications at a national level
133
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4.8 Conclusions
134
4.9 Dissemination and communication
134
4.9.1 Conference presentations
134
4.9.2 Publications
135
4.10
Recommendations for Future Research
136
4.10.1
Fidelity scale
136
4.10.2
Cost effectiveness studies
136
4.10.3
Service user and carer perspectives
136
4.10.4
Quantitative outcomes
136
4.10.5
The National Eden study
136
References
137
Appendix 1: Letter of contact for PCT and
commissioning leads
144
Appendix 2: Study information sheet for PCT and
commissioning leads
146
Appendix 3: Interview topic guide for PCT and
commissioning leads
148
Appendix 4: Final EIS Team Lead interview
schedule
154
Appendix 5: Formative interview tables
156
Appendix 6: Service user and carer interview
schedules
162
Appendix 7: Summative data collection sheet
181
Appendix 8: Summative evaluation tables
186
Appendix 9: Fidelity scale
232
Appendix 10: Health professional information
sheet and consent form
255
Appendix 11: Service user information sheets and
consent forms
260
Appendix 12: Carer and sibling information sheets
and consent forms
278
Appendix 13: Publication policy
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1. Introduction
284
2. Types of publications
284
3. Process
285
4. Authorship criteria
284
5
Acknowledgements
This study was funded by the NHS Service Delivery and Organisation (SDO)
Research and Development Programme (SDO/42/2003).
We would like to thank all of the EIS team members and leads, service users
and carers, as well as Mental Health Trust (MHT) and Primary Care Trust
(PCT) commissioners and leads for their contribution to this study. They have
given their time generously and provided the information that has made this
study possible. We are also grateful for the assistance provided by Renew
Service User Group, Suresearch and the Rethink Carers Group for providing
advice during the development of the service user and carer interview
schedules. The authors would also like to thank Helen Duffy and Siobhan
Conroy for their splendid work in supporting the research team and in the
organisation of transcriptions.
Abbreviations
AESOP
Aetiology and Ethnicity in Schizophrenia and Other Psychosis
AMHS
Adult Mental Health Services
BFT
Behavioural Family Therapy
BME
Black and Minority Ethnic
BNF
British National Formulary
CAB
Citizens Advice Bureau
CAMHS
Child and Adolescent Mental Health Services
CBT
Cognitive Behaviour Therapy
CMHT
Community Mental Health Team
CPA
Care Programme Approach
CPN
Community Psychiatric Nurse
DH
Department of Health
DOH
Department of Health
DUP
Duration of Untreated Psychosis
EDT
Early Detection Team
EI
Early Intervention
EIS
Early Intervention Service
FBT
Family Behaviour Therapy
FEP
First Episode Psychosis
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FERN
First Episode Research Network
FT
Full Time
GP
General Practitioner
IRIS
Initiative to Reduce the Impact of Schizophrenia
IQR
Inter Quartile Range
LEO
Lambeth Early Onset Team
MHA
Mental Health Act (1983)
MHS
Mental Health Services
MHT
Mental Health Trust
MH PIG
Mental Health Policy Implementation Guide
MI
Multiple Imputation
MP
Member of Parliament
NSF
National Service Framework
LIT
Local Implementation Team
NICE
National Institute for Health and Clinical Excellence
NIMHE
National Institute of Mental Health in England
NHS
National Health Service
OCD
Obsessive Compulsive Disorder
OT
Occupational Therapist
PANSS
Positive and Negative Symptom Scale
PCT
Primary Care Trust
PIG
Policy Implementation Guide
PTSD
Post Traumatic Stress Disorder
SD
Standard Deviation
SHA
Strategic Health Authority
STaR
Support Time and Recovery Worker
UK
United Kingdom
VCS
Voluntary and Community Sector
VSSS-54
Verona Service Satisfaction Scale
WTE
Whole Time Equivalent
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Executive summary
Introduction
The EDEN study was funded by the NCCSDO Programme of Research on
Models of Service Delivery and Organisation. It ran for three years from July
2003 with data collection active from March 2004 to February 2006.
Aims and objectives
EDEN aimed to evaluate the implementation and impact of EISs across the
West Midlands with diverse socio-demographic, geographical and National
Health Service (NHS) structures and provide important information to help
ensure services are effective and sensitive to the needs of young people.
Methodology
Conceptual framework
This study adopted both a formative and summative evaluation framework
within a multi-case study methodology that included qualitative and
quantitative data collection and analysis.
Location
Each of the 14 EISs in the West Midlands decided to participate. Twelve
services actively incepted service users during the study time frame.
Data collection and analysis
Formative aspect
Semi-structured interviews were undertaken with 42 Strategic Health
Authority, Primary Care Trust and Mental Health Trust executives and 50
service users and carers, and 162 interviews were conducted during the twoyear study period with EIS Leads and team members.
Summative aspect
Audit data were collected from the case notes of 479 service users incepted
into 12 active EISs during the period from 1st September 2003 until 31st
August 2005. The data collection start date was six months prior to the
collection of formative data in recognition of the time it can take to engage
service users into the EIS. Regression modelling was used to explore the
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variability in duration of untreated psychosis (DUP) and use of a section of the
Mental Health Act (1983).
Findings and discussion
Objective 1: To provide information on key aspects of
EIS development and delivery to maximise the
effectiveness of emerging services
Aims and visions of the services
There was little variation between the teams in terms of their overall aims
and objectives since all EISs delivered an holistic approach to first episode
psychosis (FEP) which focused on the need to work with service users using a
bio-psycho-social approach.
There was, however, less consistency in terms of referral pathways into the
teams. Most adopted an ‘open system’, accepting referrals from virtually any
source, but a significant minority took a more restricted approach where the
source was either another mental health team or primary care.
Issues of access
Access was a key issue and encompassed a number of different but related
concepts such as geographical and temporal access. The influence of stigma
was also noted as important.
Youth sensitivity and engagement
Engagement was perceived as critical. All services achieved high levels of
sustained service user engagement. At 12 months, 434 (90.6%) of people
were still engaged. Service accessibility, team members’ perseverance,
creativity and youth sensitivity were considered to be the key factors that
facilitated engagement. For a minority of services, the significant youth focus
led to the employment of specific Youth and Community Workers.
Considerable emphasis was placed on combating issues of stigma,
stereotyping and prejudice.
Many service users had preconceived ideas about mental health problems and
their treatment which, more often than not, had been fuelled by inappropriate
media reporting. Dealing which such feelings and concerns was said to be an
integral part of the work undertaken with the service user as part of the
recovery strategy.
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Usefulness of EISs from the perspectives of users and carers
All service users reported that EIS involvement had been positive. They spoke
of help with medication, relapse prevention, the provision of good support
and consequently, strong relationships with their key workers, help with
motivation in order to facilitate a return to education and employment, and
support to re-establish self-esteem and self-confidence.
The majority of carers reported high degrees of satisfaction with the services
provided. Key aspects for them included the availability of staff, levels of
reassurance, comprehensive support and a strong focus on building the
confidence and self-esteem of service users.
Objective 2: To identify key components of successful
service configurations and their adaptation in
different geographical and socio-economic settings
and understand how local factors facilitate or hinder
EIS development
Ten of the 12 EISs adopted a stand-alone service configuration and there was
good evidence to suggest that this was the preferred configuration of EIS
team members. However, the degree to which this has been feasible was said
to be dependant on the willingness of commissioners to invest the level of
resources needed to fund a stand-alone service, particularly in rural or semirural areas.
Alongside geographic location, a number of other demographic factors,
notably cultural characteristics, relative deprivation and gender, were said to
present challenges within the context of service development and delivery.
Hindrances
There was strong evidence to suggest that under-funding was a key factor in
determining the stability and suitability of EISs. In a minority of services,
where funding was secure, a predominantly proactive rather reactive service
had developed. However, for the majority of EISs, funding was perceived as
insecure which meant that planned activities were governed by a 'stop-start'
approach that gave rise to feelings of frustration and low staff morale.
Furthermore, several EISs experienced delays in receiving confirmation (or
otherwise) of increased funding which made strategic planning more difficult.
Under-resourcing placed great pressure on EISs and their staff and many
reached capacity within their first year, compromising the aim of EISs to
provide all young people with a FEP with consistent support over three years.
In some cases, waiting lists developed thus leading to later intervention.
Second, for the minority of relatively well-financed services, developmental
and promotional work had been identified as an integral part of establishing
an effective EIS. However, for the majority of EISs, this was not taken into
account in the initial budget setting stage, which led to teams having to
prioritise what little time they had for developmental work in a way that
ensured positive outcomes. Wider developmental work in the community or
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with user and carer groups was not possible for most EISs because of staff
capacity issues and tensions created by the need to manage case load and hit
targets to secure future funding.
Third, the majority of EISs experienced problems in recruiting or retaining
team members, particularly Social Workers.
Fourth, a perceived hindrance was the lack of a dedicated psychiatrist in most
of the teams. Only five teams had a dedicated post. This was described as
exacerbated by delays in securing agreement on the content of the job
description, a lack of funding and an apparent disinterest in vacant posts.
Fifth, not all teams felt that their office base was conducive to engaging with
young people during their first experience of mental health services. There
was a strong sense that, from the outset, little thought had gone into
identifying suitable accommodation that was non-stigmatising, welcoming and
accessible.
Facilitators
Five key facilitators were identified. Ownership and understanding of the role
and purpose of EISs by those involved in strategic and operational decisionmaking within the locality was considered important.
Second, at a team or peer level, two significant facilitators were identified the experience and attitudes of individual team members and the
development of a collaborative and cohesive team ethos. Personal attributes
of team members or potential team members were rated more highly than
qualifications since cohesiveness and dedication to the principles of EISs were
thought to be borne out by employing the ‘right people for the job’, ‘having a
wide-range of experiences and skills’ and ‘the energy to make something you
believe in work’.
Third, the presence of ‘local champions’ in terms of EI Leads was considered
to be a significant factor during the early stage of development. There was a
strong sense that such individuals had both the knowledge and skills to
influence those who occupied senior management positions and were thus
instrumental and active in strategic decision-making processes. However, as
time went on, the dependence on ‘local champions’ appeared to change or in
some respects diminish since team members, themselves, felt equipped to
take on this role as their confidence in working with FEP increased.
Fourth, all the EISs found the opportunity to network with colleagues
extremely beneficial.
Fifth, there was a strong sense that working with other agencies and
organisations both within and outside of the mental health domain had
generated positive outcomes, not just for the team members in terms of skill
or knowledge development, but also for service users.
Objective 3: To understand the effect of structural
relationships between Primary Care Trusts, Mental
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Health Trusts and Social Care Trusts on
commissioning and/or providing EISs and identify
lessons for future development of EISs within a
whole-systems approach to mental health
Four key themes emerged. Less experienced commissioners seemed unable
to engage fully with other potentially key groups such as service users and
carers and other statutory and non-statutory organisations.
Organisational culture also appeared important. A number of PCT
commissioners suggested that poor relationships between different agencies
involved in developing EISs were due to differences in organisational culture
and structure and a lack of commitment to partnership working. However,
such difficulties were said to be frequently underpinned by insufficient
resources or recent organisational restructuring.
A significant number of the PCT commissioners described how they felt that
there was a degree of stigma attached to their roles as commissioners for
mental health. This had an effect on their ability to carry out their
commissioning role by reducing their potential to develop intra- and interorganisational relationships.
Structural relationships between organisations and implementation issues also
had an impact on commissioning EISs. Generally the relationship between the
SHAs, PCTs, Mental Health Trusts or Social Care Trusts was perceived as
hierarchical; policies were formulated at a national level, interpreted at the
PCT level and implemented by the EISs at ‘ground level’. Some PCT
executives reflected that in their opinion this was the most satisfactory way of
introducing new policy since they felt that the top-down approach gave them
the element of control required for successful implementation of the new and
potentially complex policy. Tensions however, occasionally arose with the ‘top
down’ approach. Some PCT commissioners were trying to develop EI policy
from the ‘bottom up’, adapting and responding to their local environment and
patients’ ideas, which were not always in concordance with national policy.
Objective 4: To provide information on the
relationship between different service configurations,
fidelity to national EIS guidance and key pre-defined
outcomes such as duration of untreated psychosis
(DUP)
Regression modelling was used to explore the variability in DUP and use of a
section of the Mental Health Act (1983). Since all but two of the teams were
stand-alone in nature, and neither of these returned the fidelity scale that
was a key part of the model, we were unable to explore the relationship
between service configuration and key outcomes.
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DUP model
Our results showed no significant association between age and gender and
DUP or with employment status, however the trend in the employment
variable does show that longer DUP was associated with unemployment, in
line with results from other studies.
Sectioning model
In variance with other studies we found a significant positive relationship
between being sectioned and the involvement of a GP or primary care team.
These results should, however, be viewed in the context of only 13% of
service users entering EISs via this route. This proportion is much smaller and
may therefore not be as representative as that in other studies.
Objective 5: To explore reasons for variation in the
costs associated with the delivery of EISs
Throughout the four rounds of data collection, availability of resources was
consistently mentioned as the greatest challenge to implementing EISs. This
led to sensitively in providing information to the research team about
resources. During the final round of data collection, when we had expected to
collect detailed cost data, all of the EISs were engaged in what was frequently
described as ‘delicate negotiations’ with their respective Trusts and PCTs and
were therefore reluctant to disclose any information about their actual or
proposed budgets.
Implications
Implications at a local level
1. There needs to be greater clarity and transparency over funding
mechanisms
Perhaps the most important implication both locally and indeed nationally is
the need for greater clarity and transparency over funding mechanisms for
EISs. There is also a need for services to be assured about the recurring
nature of funding to help plan service development at a strategic level and
the balance of case work and developmental work.
2. PCT expectations need to be clear and linked to funding streams
There appears to be a significant emphasis by PCTs and SHAs on achieving
targets, particularly in terms of caseloads. This, however, can create tensions
at a team level between the quality of the service and the quantity (number)
of young people accepted into the service. Clarity over the expectations of all
parties, linked to clear funding streams, is required to enable EISs to pursue
both clinical and developmental work.
3. Service user and carer involvement needs to be encouraged more
proactively
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There is little evidence of service user or carer involvement in most of the
EISs. This is related to lack of time for developmental work and also to some
extent by service users’ desire to recover and move on rather than
necessarily making a 'career' as a mental health service user. However, a
minority of teams have successfully engaged a service user as a team
member and this appeared to have a positive effect on team ethos.
4. Tensions of genericism within a specialist services need to be
recognised
All except one team were multi-disciplinary in nature. Teams were therefore
able to provide a range of skills to service users and carers. However there is
a need to recognise tensions that can occur when encouraging genericism
within the team yet also valuing the specialist skills that all team members
bring.
5. Better communication strategies are required between teams
Good communication strategies with local mental health teams appear to be
key. This is important in terms of developing entry and exit strategies into
EISs and also for developing good relationships between different parts of the
wider mental health system.
6. PCT commissioners need a more in depth understanding of EISs
At a PCT level, commissioners need to develop a greater understanding of
how EISs work. This requires greater stability at a PCT level in terms of
personnel and the appointment of commissioners who understand the
intricacies of mental health
7. PCT commissioners need to understand the intricacies of
partnership working
The significant policy emphasis on joint working between different sectors
within the NHS (e.g. CAMHS and EIS), health and social care, health and the
voluntary sector and on greater public involvement in service design and
delivery mean that understanding partnership working issues will become
more important in commissioning EISs in future.
8. PCT commissioners need to recognise the stigma of mental illness
The stigma of mental health may affect PCT opinions on the importance of
commissioning good quality mental health services.
9. Clearer lines of communication are required between EISs and
CAMHSs
Greater clarity is required about the relationship, roles and responsibilities
between CAMHSs and EISs, particularly as some of the services move
towards developing a much stronger youth focus through employing specific
youth workers.
10.Excellent service engagement strategies could be generalised
across England
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Service engagement was uniformly excellent across all services. This suggests
that other EISs could learn from the experience in the West Midlands in terms
of developing successful engagement strategies.
11.Developmental work in the community requires greater focus and
funding
The mean DUP across services in the West Midlands is 16 weeks. Although
teams frequently said that they had a little time for developmental work, the
fact that the DUP is so much lower than many other reported DUPs suggests
that the developmental work and community connections described by teams
may be having an influence in raising awareness of early symptoms and signs
of psychosis.
Implications at a national level
These recommendations need to be tempered by the knowledge that they are
based on data collected from one geographical area of England.
1. Better communication about the value of EISs is required at a
national level
There is a need to communicate the value of EISs at a national level so that
the wider mental health community understands their roles, responsibilities
and value.
2. Flexibility to the PIG is required to take different locality needs
into account
Slavish adherence to the Policy Implementation Guide at a national level may
not fit the increasing move towards a youth service in some areas. Although
the mean score on the fidelity scale was 200, suggesting a good fit with PIG
for most services, flexibility may be required in future as services reshape in
response to funding constraints, user preference and the emerging evidence
base.
3. Funding for EISs needs to take into account local needs
Service commissioners need to appreciate the flexibility required in terms of
EIS shape, form and function to enable the development of locally sensitive
and appropriate EISs depending on whether the EIS is an a rural area, the
availability of voluntary and community sector services and the socioeconomic characteristics of the client group.
4. The EIS recovery focus needs to be championed beyond the
immediate service
The importance of a recovery focus was an important issue in interviews with
EIS team members, users and carers.
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EDEN: Evaluating the Development and Impact of Early Intervention Services (EISs) in
the West Midlands
The Report
1 Introduction
‘There is one thing stronger than all the armies in the world; and that it is an idea
whose time has come.’
(Victor Hugo, Histoire d'un crime, 1862)
1.1 Introduction
1.1.1 Background
Four per 1,000 adults aged 16 – 64 years of age, or approximately 190,000 people
in the UK have a functional psychosis (Meltzer, Baljit & Petticrew, 1995). The term
‘psychosis’ covers a range of mental illnesses, the most common of which is
schizophrenia. The mean age of onset of psychotic symptoms is 22 years for
women and 19 years for men, with 80% of first episodes occurring between the
ages 16 and 30 years.
First episode psychosis (FEP) is usually preceded by months or sometimes years of
‘prodromal symptoms’. These are often non-specific, particularly in the early
stages, and are commonly mistaken as part of normal adolescent behaviour.
Prodromal symptoms include attenuated positive symptoms such as illusions, ideas
of reference and magical thinking; mood symptoms such as anxiety, mood lability
and irritability; cognitive symptoms such as difficulty in concentrating; social
withdrawal, sleep disturbance and obsessive behaviours (Yung & McGorry, 1996).
Patients who go on to develop a first episode of psychosis may experience a
number of ‘positive’ and/or ‘negative’ symptoms including hallucinations,
particularly hearing voices, delusions (that is, firmly held ideas that are usually
false and not shared by others in the patient’s social, cultural or ethnic group), loss
of motivation, depression or blunting of emotions. Suicide is also a significant risk.
One in ten people with psychosis commit suicide, with two thirds of deaths
occurring within the first five years of diagnosis (Tanney, 2000).
1.1.2 The economic costs of psychosis
Knapp (1997) suggests that the annual identifiable direct and indirect financial
consequences of schizophrenia are £2.6 billion. This figure is derived from costs
falling on the National Health Service (NHS), local authorities, charities and the
criminal justice system and does not include the personal costs to the individual
and their carers. More recent figures from the Sainsbury Centre for Mental Health
that do include these figures estimate the total annual cost of both common mental
health problems and serious mental illness in England at £77.4 billion (The
Sainsbury Centre for Mental Health, 2003).
© NCCSDO 2007
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the West Midlands
1.2 The policy context
Priority setting is a concern for governments throughout the world. The
development of Early Intervention Services (EISs) has become a priority in the UK
for a number of different and inter–related reasons, including the rise of community
care, the move towards control as well as care in the community, user and carer
concerns, the increasing evidence of unacceptably long durations of untreated
psychosis (DUP) and the benefits of early diagnosis and treatment.
Modern psychiatric care has evolved largely out of the context of the psychiatric
hospitals built in the nineteenth century to protect and care for ‘poor communities'
(Weller & Muijen, 1993). However from the 1950s onwards, the development of
neuroleptic medication, the cost inflation of mental hospitals (Scull, 1977) and new
ways of thinking about healthcare, including the growing importance of social
networks (Prior, 1991), led to an increasing move away from hospital-based care
towards community care (Rogers & Pilgrim, 2001). In 1954, there were 154,000
residents in UK mental hospitals. By 1982, this figure had fallen to 100,000 and by
1998 to 40,000.
In the later part of the 1980s and early 1990s there was also significant media
coverage of a small number of untoward incidents involving people with severe
mental illness, for example the killing of Jonathan Zito by Christopher Clunis.
Although much of this was alarmist, a net result was a growing public concern
about safety and a change in both Tory and New Labour policy towards control as
well as care in the community. This included the introduction of supervision
registers to identify and provide information on service users ‘who are liable to be
at risk of committing serious violence or suicide or serious self neglect’ (NHS
Executive, 1994). At a macro level, therefore, decisions were being taken to
prioritise people with serious mental illness rather than those with common mental
health problems.
Users and carers have also been instrumental in effecting change. Organisations
such as the National Schizophrenia Fellowship (now Rethink) and the Initiative to
Reduce the Impact of Schizophrenia (IRIS) were key to raising awareness of poor
services for young people with first episode psychosis, and acted both as pressure
groups and think tanks for redesigning services.
At the same time, during the 1990s, evidence began to emerge of the long duration
of untreated illness prior to receiving treatment, and the benefits of intervening
early in terms of recovery. Studies across the world on first episode psychosis have
consistently found an average of one to two years between the onset of psychotic
symptoms and the start of treatment (McGlashan, 1999) with long DUP linked to
male gender, poor pre-morbid functioning, poor psychosocial support (Larsen,
Johannessen & Opjordsmoen, 1998) and an insidious presentation with
predominantly negative symptoms (Larsen, McGlashen, Johannessen & VibeHanson, 1996; Drake, Clifford, Akhtar & Lewis, 2000). Long DUP can also be
caused by stigma and fear (Lincoln & McGorry, 1995), a lack of knowledge about
mental illness and mental health services in the general community, methods of
health care delivery and the educational system (Lincoln, Harrigan & McGorry,
1998). Such delays would be unacceptable in physical illness, where two-week
waits for suspected cancer referrals and two-hour ‘pain to needle’ thrombolysis
targets in suspected myocardial infarction are part of standard care in the UK.
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The first EIS in the UK started in Birmingham in 1990. Since 1995, the Early
Intervention Beacon service has developed into a service exclusively for people
experiencing first episode psychosis and the Birmingham model of care has
significantly influenced national policy in this area.
In 1998, the Government announced in Modernising Mental Health Services that
EISs for young people in the early phase of psychosis would form part of the new
structure of services for the severely mentally ill.
‘Early intervention matters to prevent relapse, reduce the risk of suicide and ensure
public safety... professionals in primary care and in specialist services need the
proper education and training to recognise early symptoms and risk and to take
appropriate action.’
(Department of Health, 1998:35)
The National Service Framework for Mental Health stressed the necessity for
prompt assessment of young people at the first sign of a psychotic illness in light of
‘the growing evidence that early assessment and treatment can reduce levels of
morbidity.'
(Department of Health, 1999:44)
The National Plan for the NHS further stated that:
‘Fifty early intervention teams will be established by 2004 so that …all young people
who experience a first episode of psychosis, such as schizophrenia will receive the
early and intensive support they need.’
(Department of Health, 2000a: 119)
Recent and emerging guidance on treatment of schizophrenia from the National
Institute for Health and Clinical Excellence (NICE) has also recommended that:
‘early intervention services are developed so as to provide the correct mix of
specialist pharmacological, psychological, social, occupational and educational
intervention at the earliest opportunity.’
(National Institute for Clinical Excellence, 2002)
A range of Policy Implementation Guides (PIGs) (Department of Health, 2001a)
have further developed the ideas encapsulated in the National Service Framework
for Mental Health and National Plan (see Figure 1).
Figure 1. The Policy Implementation Guidance on Early Intervention
The Policy Implementation Guidance on Early Intervention suggests that early
intervention service should be able to:
reduce the stigma associated with psychosis and improve professional
and lay awareness of the symptoms of psychosis and the need for
early assessment
reduce the length of time young people remain undiagnosed and
untreated
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develop meaningful engagement, provide evidence-based interventions
and aid recovery during the early phase of illness
facilitate development and provide opportunities for personal fulfilment
including social life and employment and training opportunities
provide a user-centred service that is a seamless service available for
those from 14–35 years of age
at the end of the treatment period (up to three years), ensure that the
care is transferred thoughtfully and effectively.
1.2.1 Rationale for developing bespoke EISs
There are many arguments for developing EISs rather than continuing with the
status quo of young people being referred to and treated by community mental
health teams or in patient units.
Young people surveyed by Rethink (www.rethink.org/reaching) found current
services stigmatising, therapeutically pessimistic and youth-insensitive. Users and
carers expressed significant levels of dissatisfaction with current mental health
service response to first episode including unhappiness with the lack of streamed
acute wards for first episode, a lack of wider age-specific psychosocial opportunities
in recovery such as access to work training and education and use of sub-optimal
medication doses often connected to the use of older style neuroleptics. Users are
less likely to stay engaged with services they feel are un-therapeutic.
Services for younger teenagers were particularly criticised, with young people aged
between 14 and 18 years of age deemed too young to access adult services and
referred to Child and Adolescent Mental Health Services (CAMHSs) with little if any
experience of treating psychosis. The 14-35 year age range of the new EISs may
therefore help to address these specific issues and overcome the traditional
problems of continuity of care between CAMHSs and adult mental health services.
In addition to user and carer concerns, bespoke EISs were suggested as part of the
response to the association between DUP and longer-term outcomes. Although still
disputed (Ho & Andreasen, 2001), it is highly likely that an association exists
between DUP and outcome in first episode psychosis, particularly functional and
symptomatic outcome at 12 months and symptom reduction once treatment begins
(Drake et al, 2000; McGlashen, 1999; Larsen, Moel, Hans en, Johannessen, 2000;
Norman & Malla 2001; Harrigan, McGorry & Kirstev 2003). Long-term follow up
studies also demonstrate that outcome at two years strongly predicts outcomes 15
years later (Harrison, Hopper, Craig et al, 2001). Long DUP is also associated with
increasing behavioural disturbance and family difficulty (often involving multiple
failed attempts to access care), life threatening behaviour (Power, 1999) and
increased use of the Mental Health Act (Humphreys, Johnstone, Macmillan & Taylor,
1992).
The relationship between DUP and outcome is potentially confounded by other
predictors of outcome such as pre-morbid adjustment, family psychiatric history,
level of education, mode of onset and gender. However, a recent study of 354 FEP
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patients followed up 12 months after remission of psychotic symptoms found that
DUP remained a significant predictor of outcome after adjusting for the effects of
other variables (Harrigan et al, 2003).
A further rationale for intervening intensively and early in first episode is the
concept of a ‘critical period’ in the early phase of psychosis, with major implications
for secondary prevention of impairments and disabilities. Many health professionals
have been educated within a mental health system that still perceives the
management of schizophrenia in Kraepelinian terms as ‘the orderly management of
decline.’ (Harding, Zubin & Strauss, 1992). Indeed, the phrase Kraepelin coined,
‘dementia praecox,’ reflects the perceived relentless, downward, deteriorating
course and uniformly poor outcome of psychotic illness. However Birchwood, Todd
and Jackson (1998) challenge this mindset, arguing that deterioration occurs in the
pre-psychotic period and early in the course of psychosis, but that this often
stabilises after two to five years and may even relent. They suggest that
intervention targeted in the early years after onset, particularly the first three
years, is likely to have a disproportionate impact relative to later interventions.
Early intervention is also more than simply intervening early to try and reduce DUP.
The content as well as the timing of the treatment is important. Cognitive
behavioural therapy and low dose drug regimes are associated with improved
longer-term outcomes (McGorry et al, 1996; Lewis, Tarrier, Haddock et al, 2002).
Evidence suggests that patients’ needs during the early phases of the illness differ
from those of individuals with longer-standing illness (Norman & Townsend, 1999).
The former are generally younger, living with their families, attempting to negotiate
the normal developmental phases of late adolescence and young adulthood and
using alcohol and drugs socially or excessively. They are often still dealing with the
initial personal trauma of psychosis, have strong hopes of returning to a normal
level of functioning and are more likely to reject a paternalistic approach to medical
interventions. Engagement or the formation of a ‘therapeutic alliance’ is crucial and
indeed is an independent predictor of treatment retention rates and of good
symptomatic and functional outcomes in psychosis (Birchwood, Fowler & Jackson,
2000). Engagement can be fostered by searching for common ground, avoiding
premature confrontation of their explanatory model of illness and delivering
treatment in as flexible a manner as possible through home visits, short waiting
lists and frequent contact with a single worker.
Early intervention services also include a specific focus on the prevention of relapse
that involves working with the patient and their family to identify their unique early
warning signs of psychotic relapse and to prepare and rehearse a response
(Birchwood, Todd & Jackson, 1998). Recent evidence, published during the EDEN
study data collection period, suggests that EISs delivering specialised care are
superior to standard care for not only maintaining contact with professionals but
also for reducing readmissions (Craig et al, 2004).
It was against this evidence base and policy context that the EDEN project was
devised and developed by a multidisciplinary group of clinicians and academics
involved with setting up and evaluating EISs in Birmingham. It represents the first
large-scale evaluation of EISs in the UK.
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1.3 Aims and objectives
EDEN aimed to evaluate the implementation and impact of Early Intervention
Services (EISs) across the West Midlands with diverse socio-demographic,
geographical and National Health Service (NHS) structures.
The specific objectives of the study were:
to provide information on key aspects of EIS development and delivery
to maximise the effectiveness of emerging services
to identify key components of successful service configurations and their
adaptation in different geographical and socio-economic settings and
understand how local factors facilitate or hinder EIS development
to understand the importance of the effect of structural relationships
between Primary Care Trusts (PCTs), Mental Health Trusts and Social
Care Trusts on commissioning and/or providing EISs and identify
lessons for future development of EISs within a whole systems
approach to mental health
to provide information on the relationship between different service
configurations, fidelity to national EIS guidance and key pre-defined
outcomes such as DUP
to explore reasons for variation in the costs associated with the delivery
of EISs.
The extent to which these aims and objectives were met is discussed towards the
end of the report in section 4.
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2 Methodology
2.1 Conceptual framework
This study adopted both a formative and summative evaluation framework within a
multi-case study methodology that included qualitative and quantitative data
collection and analysis techniques.
The formative evaluation used predominantly qualitative methodologies and
included an information-providing function as a means of enabling feedback to be
given to individuals involved in the development and delivery of EISs. This was
achieved in two ways.
First, a workshop was held at the mid-point of the evaluation where interim findings
were shared with key stakeholders. The focus of this event was to highlight general
themes, considerations and challenges emerging from preliminary data collection
and analysis.
Second, following the completion of data collection and analysis in each location at
four time intervals (spring and autumn in 2004 and 2005), individual case study
reports were prepared and distributed to members of staff within each location. The
purpose of this was to enable the respective EISs to develop an overall sense of
whether their services were developing in the way that was intended.
The decision to provide access to or the sharing of the contents of each other's
case study reports was made by the individual EIS rather than by the research
team. In this respect, it was not the intention of the research team to assess the
relative merits of local services per se, nor indeed to use the case study reports
as a means of directly comparing different EISs with each other, but to describe
the characteristics, factors and local context within which services were developed
and delivered.
To this end, cross-comparative case study reports, based on the contents of each of
the individual case study reports, were prepared at the four time intervals noted
above. These enabled the mapping of themes that were explored during
subsequent periods of data collection.
The principle purpose of the summative aspect of the research project was to
evaluate new users’ care pathways over a 12-month period within services during
the 24 months of the study. In addition to collecting routine demographic data such
as age, gender, and entry point into services, we aimed to map individual pathways
with particular reference to:
DUP
service engagement
use of the Mental Health Act (1983)
employment/education status
major adverse events such as suicide
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satisfaction with mental health services measured by the Verona Service
Satisfaction Scale (VSSS-54) (Ruggeri & Dall’Agnola, 1993)
costs of service provision, calculated using both scheme and userspecific resource use data
2.2 Location
During the planning stages of the project, it was anticipated that the research team
would work with five EISs across the West Midlands. However, following the
success of an initial workshop held in November 2003 to raise awareness and
encourage participation in EDEN, all 14 EISs in the West Midlands opted to take
part:
1. Birmingham (Highgate)
2. Birmingham (Harry Watton)
3. South Warwickshire
4. North Warwickshire
5. Herefordshire
6. Sandwell
7. Walsall
8. Wolverhampton
9. Coventry
10. South Staffordshire
11. North Staffordshire
12. Worcester
13. Shropshire (including Telford and Wrekin)
14. Gloucestershire
Two changes occurred within the sample during the lifetime of the project. North
Staffordshire EIS was reconfigured to form two teams – Stoke and Newcastle
Moorlands – both of these teams were included in the study. This is why the
number of sites increased from 14 to 15 between the first and second data
collection rounds. The number of interview sites decreased to 14 for the final round
of data collection because North Warwickshire withdrew just prior to the last round
of data collection due to staffing difficulties.
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2.3 Data collection and analysis
2.3.1 Data collection: formative aspect
Strategic Health Authority, PCT and Mental HealthTrust executives
Mental Health Leads for each of the four Strategic Health Authorities (SHAs), PCTs
and Mental Health and Social Care Trusts within the geographical remit of the
project in the West Midlands, were contacted. Initial contact was by letter or email
(see appendix 1) and then by a follow-up telephone call, one week later. Individuals
who agreed to participate were then sent a copy of the study information sheet
(appendix 2) and invited to participate in an interview at a date, time and location
of their choosing.
Letters and study information sheets sent to all those participating prior to the
interview or focus group were individually constructed for each different group as it
was felt that each group might place a different emphasis on certain aspects of the
interview. A total of 42 interviews were undertaken.
A semi-structured interview schedule was developed on the basis of the contents in
the original protocol. The key topic areas are summarised below, while a complete
set of topic guides are located in appendix 3:
role and responsibilities relating to the EIS and on a wider level
involvement in the strategic planning of the EIS
challenges associated with implementing and establishing the EIS
budgetary issues and finances
commissioning issues
challenges associated with implementing and establishing the EIS
partnership working and network development
operational issues
future development of EISs
In addition to the semi-structured interviews, three focus groups were also
undertaken in three case study locations. The purpose of using a multi-method
approach was used to ensure a more thorough and holistic evaluation of the data.
Each interview and focus group was audio taped and fully transcribed and field
notes were taken.
EIS Team Leads and team members
Each of the EIS Team Leads who had registered an interest in participating in the
research project at the 2003 workshop was contacted to confirm their interest.
Subsequently, either one of the principle investigators or the project manager
attended team meetings in each of the case study sites and engaged in more
detailed discussions relating to the aims and objectives of the research, expected
time commitments from the perspective of the EISs and anticipated outcomes.
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A draft semi-structured interview schedule was developed from the emergent
literature and project team members’ ideas consisting of the following topics:
strategic decision-making and processes (including budget setting and
management)
service development strategy
aims and objectives of EIS
operational issues (including accessibility, youth sensitivity, involvement
of users and carers, availability of psychological interventions,
treatment of co-morbidity, professional roles and responsibilities)
the development of links and/or partnership arrangements with other
statutory and non-statutory organisations both within and outside of
the mental health domain
perceived facilitators and hindrances that had an impact on the
development and delivery of EISs
This draft schedule was then piloted in a relatively new, but fully staffed, EIS
subsequent to data collection, which began in the spring of 2004.
In order to elicit a wide range of views held by EIS team members, an average of
50 interviews were undertaken during the first three rounds of data collection.
However, it should be noted that some of these teams were in their early stage of
development, usually with only the Team Lead in place.
During the final round of data collection (autumn 2005), only Team Leads were
interviewed. The reason for this was two-fold: first, to enable the Team Leads to
reflect on the development of their respective services and second, to enable the
research team to test out some of the themes in depth that had emerged during
the previous rounds of data collection (see appendix 4 for a copy of the final
schedule).
The total number of interviews undertaken was 162 (see appendix 5 for a
breakdown by staff group). Each interview was audio-taped and transcribed
verbatim.
Users and carers
During the autumn of 2005 and the spring of 2006, 32 service users and 18 carers
were interviewed. Contact was made with service users through their respective
key workers to ensure that they were both comfortable with being involved in a
research project and well enough to take part.
Within the sampling frame of all EIS users who key workers felt were well enough
to be interviewed, we also sought to purposefully interview those with a range of
demographic characteristics including gender and ethnicity. Consented service
users were contacted by a member of the research team and asked if they would
take part in a confidential tape-recorded interview. To maintain service user
confidentiality, efforts were made to only speak to the service user and not to leave
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any messages with family members or others who may have answered the
telephone. The service user was telephoned up to maximum of three times or until
contact was made. Once this had been achieved, the service user was asked
whether they were prepared nominate a carer who would subsequently be
interviewed. No approach to carers was made without the consent of the service
user. EIS teams were not told who the EDEN Project team had interviewed, but the
service user was free to tell their care co-ordinator if they wished.
The research team wanted to explore a number of themes with both users and
carers including their assessment of the EIS’s accessibility, level of engagement,
their experience of initial treatment, ways in which stigma may be reduced and the
perceived usefulness of the service. These themes were refined into more detailed
questions and prompts by working closely with two established mental health users
and one carers' group (Renew, Suresearch and Carers in Partnership).
We led a facilitated group session with each of these groups on two occasions to go
through the interview schedules and ensure that they included issues that users
and carers felt were key to service development and delivery from their
perspectives. Each interview was audio-taped and transcribed verbatim. (See
appendix 6 for a copy of the interview schedules).
2.3.2 Data analysis: formative aspect
Constant comparison analysis was used to interpret the data. Data collection and
analysis for all data sets were concurrent and proceeded in an iterative manner that
allowed progressive focussing on key themes. Disconfirming evidence was actively
sought throughout and all interviewees were sent a copy of the preliminary analysis
for comment. This was subsequently refined to take into account interviewees’
views in order to produce an individual case study report in respect of each of the
sites', users' and carers' and PCT/Trust's views at a single point in time.
Each team was sent a copy of its own case study report. Following on from this, the
research team produced a cross-comparative case study report based on the
contents of the individual case study reports in order to map developments at four
points.
The final report represents a synthesis of the findings from each of the four crosscomparative case study reports, reflecting overarching themes that have continued
to be important throughout the duration of the study. All quotations have been
chosen on the grounds of representativeness. All are anonymised to preserve team
member confidentiality, an issue that was raised by many individual interviewees,
particularly in EISs where they were the only representative of a particular
professional discipline.
2.3.3 Data collection: summative aspect
Audit data were collected from the case notes of 479 service users incepted into 12
active EISs during the period from 1st September 2003 until 31st August 2005 (see
appendix 7 for a copy of the data collection sheet). The data collection start date
was six months prior to the collection of formative data in recognition of the time it
can take to engage service users into the EIS. All service user notes were reviewed,
unless the notes were missing as a result of the service user moving and therefore
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being referred to another service. Data was collected at 12 months after inception
into the EIS.
Note keeping varied considerably across the services, although the majority was of
a high quality. This resulted in some variance in the quality of the audit data
collected particularly in relation to the use of the Mental Health Act (1983),
medication history, inpatient stays and referral source.
Once collected, the data was entered into an SPSS spreadsheet for each case study
site. A small number of teams requested and were sent copies of their own audit
data.
2.3.4 Data analyses: summative aspect
Descriptive statistics
In order to provide a description of the sample of EISs for which audit data were
available, descriptive summary statistics were generated for each of the main
variables. Tables and box plots reporting frequencies, mean and median were
produced (see appendix 8). Standard deviations (SD) and the interquartile ranges
(IQR) for the mean and median, respectively, were also calculated. Further, the
data were stratified according to three main variables of interest: gender, ethnicity
and EIS. All 479 observations in the audit data were used in this analysis.
Regression models
We employed regression modelling to explore the variability in DUP and use of a
section of the Mental Health Act (1983). Specifically, it was used to investigate the
extent of variation in DUP and sections across different EIS episodes, and whether
DUP and sectioning varied systematically in line with model variables such as EIS
service user characteristics (e.g. do older patients tend to be associated with longer
DUP?).
Three sets of econometric models were developed, the first relating to DUP, the
second relating to use of sectioning and the third to service engagement. Three
EISs did not complete the EI used in the model. Consequently, these EISs were not
included in the analysis. A maximum of 378 observations from the audit data were
therefore used in this analysis.
Duration of untreated psychosis - generalized linear model
DUP, as is the case with most health outcomes, has been shown to have a skewed
distribution (Johannessen et al, 2005; Norman & Malla, 2001). This leads to
consideration of different alternative econometric estimation modelling approaches
for these outcomes (Manning & Mullahy, 2001). Therefore, any model chosen has
to incorporate ways of removing interpretation biases that would result if the
normality assumption were ignored. Blough et al (1999); Manning and Mullahy
(2001) have suggested the use of the Generalised Linear Model (GLM) as it
explicitly takes into account non-constant variance (heteroscedasticity) and nonnormality of the error terms while at the same retaining the original scale of the
data.
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Given below is the relationship between dependent variable (DUP) and the
explanatory variables:
DUPi =
∑
β
xij
+
ε
j
j
where DUPi denotes the DUP for the ith individual and x is a vector of explanatory
variables. β is a vector of regression coefficients and ε is the residual error.
The generalised linear model can be broken down into three parts (Blough et al,
1999): the linear component, a differentiable link function and a variance function.
Decomposition of generalized linear model
The linear component:
α i = xi β
(1)
where x is a set of covariates for the ith client and
coefficients.
β
is the vector unknown
The link function:
g{(E(yi)} = xi β
(2)
This shows the relationship between the expected value of yi (DUP for the ith
patient) and the linear predictor.
The variance function depicting the relationship between the variance and the
mean:
Var(yi) =
α
δ
i
2
=
α f{E((yi)}
(3)
is the dispersion factor
In order to choose an estimator, Manning and Mullahy (2001) suggested an
algorithm to select from among the generalised linear models or exponential
conditional mean models. To do this a squared raw scale residual in a modified Park
test is used to determine the appropriate family (distribution) to employ from
among the generalised linear model alternatives. This is determined by regressing
the log of the raw scale residual on the predictions of the linear OLS regression
model. The value of the coefficient can be used as an estimate of λ .
Characterizing the class of variance functions by:
Var (y/x) =
δ
i
2
=
α [E(y/x)] λ = α [ µ ( xβ )] λ
Provided that λ is finite and non-negative, then our choice of generalised linear
model distribution will be guided by:
λ = 0 - usual non-linear least squares estimator
λ = 1 - Poisson like class
λ = 2 - Gamma, Homoscedastic Log-normal, Weibull distribution
λ = 3 - Inverse Gaussian (Wald) distribution
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Blough et al (1999) propose use of a measure of goodness-of-fit in terms of the
scaled deviance to decide on the best generalized linear model to use.
Though generalised linear model provides estimates in original metric that do not
require any retransformation before interpretation, we have chosen to use
exponentiated coefficients for ease of interpretation.
The tests for heteroscedasticity of the error terms after running the OLS on log
(DUP) for all five multiply imputed datasets (see section below for a discussion of
multiple imputation) were significant (range of p value: 0.003 - 0.032) suggesting
that use of an OLS regression model with log (DUP) would be inappropriate. The
modified Park tests run on all five multiply imputed datasets indicated the gamma
distribution as the right choice of distributional family of the generalised linear
model gamma (range of coefficients: 1.70 – 1.83). A log link function was used. In
general, the deviance and the log-likelihood statistic are used to estimate the
overall fit of a GLM. In our models, we use the more familiar R2 which can be
computed as the square of the correlation between DUP (our dependent variable)
and the predicted value of DUP as suggested by Zheng and Agresti (2000).
Use of sectioning – logistic model
We were also interested in understanding which factors are associated with whether
or not a patient is sectioned. We created a dummy variable, which was defined as
follows:
1 = If an individual was sectioned, and
Whether sectioned
0 = If an individual was not sectioned
A logistic model was used to model this dummy variable (Hosmer & Lemeshow,
1989). In addition to the odds ratios, marginal effects, with their respective
standard errors and Z scores were calculated from the models.
A full list of variables used in the modelling is given in appendix 8 with an indication
of the completeness of the data for each variable (table 35). The variables have
been divided into three parts; baseline patient characteristics, process measures
and outcome measures of an EIS episode.
Engagement status at 12 months – logistic model
We also explored which variables were important in explaining whether or not one
was still engaged to an EIS service at 12 months. Another dummy variable was
created and this one was defined as follows:
1 = If an individual was still engaged, and
Engagement status at 12 months
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Multiple imputations for the regression models
Because of non-response or complete lack of information, some missing data were
encountered. By far the most common approach to dealing with missing data is
simply to omit those cases with missing data and to run analyses on what remains
(“complete-case analysis”). This approach can lead to very misleading and, often,
biased results and so should be avoided when one wishes to make inferences about
the total population. Methods that ensure that missing data are part of the analysis
are generally more appropriate than complete-case analysis. Multiple Imputation
(MI) has been suggested as a superior technique for handling missing data (Schafer
1997; Briggs at al, 2003). In our analysis we used MI in order to generate five
datasets and the regression coefficients obtained from each of these datasets were
combined using rules for MI inference as set out in Schafer and Olsen (1998) and
Schafer (1997). MI was only carried out for services that had some missing
observations and not for those that routinely did not collect the data.
According to Schafer and Olsen (1998) and Patrician (2000), MI is appealing for a
number of reasons. First, it works in conjunction with standard complete-data
methods and statistical software. In addition, the same set of m imputations is
amenable to an array of analyses without the need to re-impute. The inferences
(standard errors, p-values, etc.) obtained from MI are generally valid because they
incorporate uncertainty due to missing data. The fact that there is high efficiency
even for small values of m is another attraction.
Representing the maximum fraction of missing observations by λ, the relative
efficiency of an estimate based on m imputations compared to one based on an
infinite number can be approximated by (1+λ/m)-1 (Schafer, 1997). We chose m =
5 imputations for our analysis which lead to point estimates that were (1+0.02/5)-1
= 99.6% as efficient as one with m = ∞. MIs were performed using NORM version
2.02 (Schaffer, 2001). The regression analyses reported in this paper are those
using multiply imputed datasets. We used STATA version 8.2 (StataCorp LP, 2004)
for all statistical analyses.
2.4 Development and use of the fidelity scale
In the original EDEN study protocol, we stated that we would use an early
intervention fidelity scale which had been developed by Max Birchwood and the
national EIS policy group, to assess and describe four potentially key domains of
EISs; client group, human resources, organisational requirements and engagement.
Each item within a domain was rated from 1-4 with the higher score representing
greater fidelity to national policy guidance (Figure 2).
Figure 2. Domains and questions in the original EDEN protocol
Domain 1. Client group
Client focus. A score of 4 = treatment during the first three years of psychosis.
Catchment area. 4 = population greater than 350,000.
Specific age group covered by the EIS. 4 = 14-30 years.
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Domain 2. Human resources
Client-staff ratio. 4 = 10-15:1.
Team size. 4 = at least 10 FT members of staff per 100 clients.
Service users on staff. 4 = more than two wte service users on the staff.
Domain 3. Organisational requirements
Intake rate. 4 = no more than six new clients per month.
Responsibility for crisis care and 24-hour cover. 4 = services provide 24-hour
coverage and take full responsibility for crisis management.
Service coverage. 4 = a 365 day service is offered to clients.
Domain 4. Engagement
Contact frequency. 4 = on average clients are seen more than twice a week.
Intensity of service. 4 = more than 90 minutes of service time per week per client.
Community settings. 4 = more than 80% of service time is spent in the community.
We had intended that each scale would be completed by the Team Leader in each
EIS site at 6/12/18 and 24-month points in the project. However, once the study
had started, and we were better able to judge the variable implementation of EISs
across the West Midlands and also the considerable complexity and differences
between emerging services, we decided that the scale we had already developed
and described in the proposal was insufficient to capture this complexity. Certainly
experience with other specialised psychiatric teams has shown that teams with
similar labels and philosophies often exhibit profound differences in structure and
function (Burns et al, 1999; Marshall & Creed, 1999). To avoid confusion in
research and clinical practice, we felt it was essential to be clear about the essential
elements of an EIS and to develop a standardised way of assessing the degree to
which these elements are present in any particular team.
In summer 2003, we therefore approached Professor Max Marshall at the University
of Manchester who had recently completed a Delphi exercise with EI professionals
(Marshall et al, 2004) for help in developing and refining our scale.
Marshall’s group developed a list of 100 key structural and functional elements from
the two sets of UK guidelines that describe how to set up Early Intervention teams
(Department of Health, 2000b) and Initiative to Reduce the Impact of
Schizophrenia (http://www.iris-initiative.org.uk/guidelines.htm). The aim of their
study was to determine the extent of expert consensus on these elements.
Similar Delphi exercises have been used to: clarify the concept of relapse in
schizophrenia (Burns et al, 2000); identify the key components of schizophrenia
care (Fiander & Burns, 1998); and delineate the practice model of a community
mental health team (Fiander & Burns, 2000).
Twenty-one EI expert clinicians were invited to rate the items and also add their
own ideas about essential ingredients. At the end of stage one of the Delphi
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process, the list consisted of 151 elements, highlighting the complexity of EISs.
These elements fell into 10 broad categories: the client group (11 elements), team
structure and ethos (10), membership of the team (15), referral and assessment
procedures (34), engaging and maintaining contact (10), non-pharmaceutical
interventions (23), pharmaceutical interventions (15), relatives and significant
others (12), admission to hospital or crisis care (10) and community connections
(11).
All 21 experts returned the completed stage two and stage three questionnaires.
Fifty-two items were rated essential with strong consensus. Fifty-four items were
rated essential with good consensus; 25 items were very important with good
consensus. Overall strong or good consensus was present for 136 (90%) elements,
of which 106 (70%) were rated as essential.
By way of comparison, a similar exercise conducted with clinical experts in assertive
outreach identified 73 elements, of which 54 (74%) were rated very important
(McGrew & Bond, 1995). Thus, in the judgement of clinical experts, an EI team
appeared to be considerably more complex that an assertive outreach team, which
in itself is an entity of some intricacy.
In the EDEN study, we used the 106 items rated as ‘essential’ with either strong or
good consensus as the basis for our scale. We further reduced the items to 59
through a consensus process involving Max Birchwood, Helen Lester (study PIs),
Peter Lavelle (an MSc student with a primary care background) and Max Marshall.
Twenty-eight of these items had been rated as ‘essential strong’ and 31 as
‘essential good’ in the Delphi exercise. Two additional questions that were not part
of the Delphi exercise but were felt to be important by Max Birchwood, Max
Marshall and Helen Lester and were based on the EIS Policy Implementation Guide
were added; (1:15 case load; fewer than 10% clients commit an act of deliberate
self harm [DSH] each year). Three additional questions were also added by the
EDEN team; that clients should be monitored for 12 months if assessed but not
accepted; that validated measures of symptoms, distress, social and occupational
functioning should be used and that 95% of clients would still be engaged at 12
months. These were seen as examples of a ‘gold standard’ service.
We attached criterion and anchors to each of the final 64 items, using a 1-4 scale
as described in the protocol, with a higher score representing greater fidelity to
issues deemed important by both national policy guidance and professionals
working in the field (see appendix 9).
The items in the scale derived from the Delphi exercise fell into the following
categories:
Client group
4
Team structure and ethos
4
Membership of the team
7
Referral and assessment
procedures
10
Engaging and maintaining
4
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contact
Non-pharmaceutical
interventions
11
Pharmaceutical
interventions
4
Relatives and significant
others
4
Admission to hospital or
crisis care
6
Community connections
5
The fidelity scale was sent to each of the 12 active EISs in the EDEN study in spring
2006 at the end of the study. Since all services had then been in place for at least
24 months, they felt in a position to comment and rate themselves against this
relatively in-depth scale. Nine of the 12 EISs (75%) returned the scale. The total
scale score for each of these nine services was included as a possible explanatory
variable in the logistic regression models.
2.5 Data handling and management
2.5.1 SHA, PCT, Mental Health Trust senior managers and EIS
Team Leads and members
During the first round of data collection, each interviewee was asked to read the
health professional information sheet (which contained information regarding the
EDEN Project; see appendix 10) and was given the opportunity to ask questions
about any aspect of the research project. They were then asked to sign two copies
of the health professional consent form, one for the participant to retain and one for
the research team. The signed consent forms were kept in a locked filing cabinet
together with the tape-recorded interviews and verbatim transcripts. Each case
study site had its own section within the filing system and the contents were
accessible only to EDEN research team members. The verbatim quotations used in
the case study reports were anonymised. EISs were only given copies of their own
case study report. The cross-comparative case study reports, which were produced
at each stage of data collection, were also anonymised.
2.5.2 Service users and carers
EISs were asked to gain consent from service users for the EDEN Project. They
were provided with a supply of service user information sheets and consent forms
(appendix 11). Two consent forms were signed, one returned to the EDEN Project
team and one retained by the service user, along with the information sheet. A
demographics form containing information such as gender, ethnicity and contact
details was also completed and returned with the signed consent form. Service
users were asked to give permission for the research team to approach their carer
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for an interview. All carers approached in this way were provided with a carer
information sheet and consent form (see appendix 12).
The signed consent forms were kept in a site-specific file in a locked filing cabinet.
When the individual had been incepted in the EIS for six months a VSSS-54, with a
reply-paid envelope, was forwarded to the service user. Returned VSSS-54s were
only identifiable by EIS and not by the individual who had returned them. All of the
VSSS-54s were kept in a locked filing cabinet.
2.5.3 Audit data collection
Audit data was collected from service user files using the summative data collection
sheet. It was then added to an SPSS database for each EIS location. All the
summative data collection sheets were stored in a locked filing cabinet.
2.5.4 General administration
Any supporting documentation relating to the EDEN Project including hard copies of
correspondence, e-mails, letters and confidential reports were stored in a locked
filing cabinets and, where appropriate, confidential information was shredded.
2.6 Deviations from the protocol
From the perspective of the research team, there were both positive and negative
deviations form the protocol. It had been anticipated that five EISs would
participate in this study, but as noted above, 14 actually took part. This led to a
considerable increase in the quantity of qualitative data that was collected which
enabled a much more in-depth understanding of the challenges faced by different
teams.
Unfortunately, the research team faced three unexpected difficulties, two of which
related to the involvement of users and carers. First, it had originally been
anticipated that audit data would be collected on 1500 service users. However it
became clear, soon after the commencement of the project that this figure was
overly optimistic and the SDO was advised of this in the first year report. The
original estimate had been based on the assumption that all of the EISs would be
implemented according to Department of Health guidance (Department of Health,
2000a) and thus would be incepting service users by the time the research project
began. However, during the first round of data collection, the presence of a
significant implementation lag was noted. For example, when data collection began
in 2004, of the 14 EISs that agreed to take in this research project, seven were
either still at the point of considering which EIS model would best meet the needs
of prospective users, or had only recently appointed an EI Lead, or were in the
process of identifying and securing resources, or a combination of one or more of
these factors. A further five teams had been operational since either April 2003 or
December 2003, while the remaining two teams had been established for a number
of years. Between the spring of 2004 and the final round of data collection in the
autumn of 2005, all but one of the EISs were operational in terms of incepting
individuals into the service.
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An associated second challenge concerning the relatively low number of inceptees
was the limited use of the VSSS-54. In the protocol, it had been anticipated that if
60% of service users completed the VSSS-54, and if 50% of these returned the
questionnaire, we would have 450 VSSS-54 returned. However, only 75 individuals
consented to fill in the questionnaire and 21 (28%) people returned them (see
Figure 3).
Figure 3. Returned VSSS-54 by EIS
EIS
VSSS-54 returned
Birmingham Harry
Watton
0
Birmingham Highgate
1
Walsall
1
South Warwickshire
5
Gloucester
3
South Staffordshire
7
Herefordshire
0
Newcastle &
Moorlands
0
Stoke City
0
Sandwell
0
Wolverhampton
0
Worcester
0
Unidentified
4
The fact that the team members had been explicitly asked not to assist in the
completion of the questionnaire may have had an impact on the response rate. We
decided that the EDEN study staff time was better spent in engaging EIS Team
Leads and members in help with the ongoing interviews and in recruiting service
users for in depth interviews than in constantly reminding them about the VSSS-54,
which was seen as an 'add-on' and to some extent threatening to some EIS staff.
We therefore stopped asking EISs to consent service users for VSSS-54 in spring
2005.
The third challenge was the inability to collect comprehensive costs data. None of
the EISs were prepared to share the contents or outcomes of discussions relating to
their respective PCTs in terms of budget setting or their service expenditure in spite
of representation by the PIs to Team Leads and assurances of anonymity. This
disappointing outcome is contextualised by the qualitative data.
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2.7 Research governance
Comprehensive ethical approval was granted by South West MREC (03/6/54). This
enabled the research team to collect data from service users (including access to
case notes), carers and siblings.
In accordance with the Research Governance Framework, all of the team members
had Honorary Contracts with each of the NHS Trusts or PCTS for the duration of the
project.
2.8 Study monitoring group
The EDEN study monitoring group met every six months during the three years of
the study.
It consisted of:
Professor Helen Lester, Joint PI, University of Birmingham
Professor Max Birchwood, Joint PI, University of Birmingham
Professor Stirling Bryan, Health Services Management Centre, University
of Birmingham
Mr Steve Garlick and Mr Stuart Hendry, user representatives,
Birmingham and Wolverhampton
Professor Fiona MacMillan, Consultant Psychiatrist, South Staffordshire
Mr Mark Rayne, National Institute of Mental Health in England (NIMHE)
West Midlands EI Lead
Dr Helen Rogers, Project Manager, University of Birmingham
Ms Alexa Sidwell, EIS Team Lead, South Staffordshire
Dr Jo Smith, Consultant Psychologist, Worcester EIS
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3 Findings
3.1 Formative evaluation
3.1.1 Strategic Health Authority and PCT executives and senior
managers (Mental Health Trusts)
The findings of this study suggest that there are a number of issues related to the
structural relationships between PCTs, Mental Health Trusts and Social Care Trusts,
which have a significant impact on the planning, commissioning and development
of EISs.
The experience and background of the commissioner, organisational culture, the
financial status of the organisation, organisational change and organisational
stigma all appear to influence organisational relationships. Organisational
relationships subsequently influence service development and planning through
their impact on policy implementation and the influence of individual
commissioners.
The majority of commissioners generally viewed their inexperience in the role,
particularly if taking up a newly created post, as having a negative impact on their
ability to develop relationships both within their own organisation and on a wider
inter-agency basis. Less experienced commissioners in particular seemed unable to
fully engage with other important groups who could have been involved in the
planning and development of EISs such as service users and carers and Voluntary
and Community Sector (VCS) organisations. In contrast, more experienced
commissioners were uncomfortable with involving a wide range of stakeholders:
‘One of the things we’re working on is how we support service users and carers to
be more involved and at earlier stages of planning early intervention services now.’
‘So I am involved with adult mental health commissioning and I liaise with the
commissioners for older adult mental health and so on. It means decisions we
make are made in a more joined up way, trying to involve others in planning.’
‘I don’t find it’s the lack of mental health that’s the problem, it’s the number of
different agencies I have to engage with. Coming from a provider unit, I’m not used
to the degree of inter-agency working that’s required at this level.’
Greater commissioning experience was beneficial in a number of ways, particularly
when setting up a new, relatively complex service such as early intervention. Some
commissioners were also able to draw on their past experience and links made in
previous roles.
‘There’s an awful lot of negotiating in setting up new services like early
intervention. I think my background helps there because it means we often talk in
the same language and understand the same jargon which all helps.’
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‘I suppose they have been involved in the original mental health strategy, which
we wrote at the start of the National Service Framework and then it sort of changed
role from being a strategy writing group into a sort of a local implementation team.
So all those links were already there and we just sort of transposed them into the
new system.’
‘There have been a lot of changes within the PCT, people weren’t sure what had
been agreed and I was handed over a pile of paperwork with letters an budgets
which is all extremely confusing. Some of it has become clearer but I can’t say that
the early intervention is one of those areas.’
‘I think from a professional viewpoint it worries me that I don’t have a mentor for
this new role as it is a responsible position. I have plenty of experience in clinical
things, as a provider, albeit none in mental health but I’m actually doing this as a
commissioner which is totally different.’
In relation to the Sainsbury Centre Guidance on EISs (SCMH, 2003), a fairly
inexperienced commissioner (by his/her own assessment) said:
‘And the Sainsbury’s document, I must say it was very helpful. Opening windows or
something like that? For somebody like me, it was very helpful, I mean it was like a
manual I used almost like a template, superimposing our audit findings onto it.’
Organisational culture
In general, PCT commissioners reported poor quality relationships between the
different agencies involved in developing EISs. A number of commissioners
suggested several reasons for the poor state of relationships, including differences
in organisational culture and structure and a lack of commitment on the part of
their organisations in drawing individuals together.
‘There are a lot of issues - for example we are on different pay scales, we have
different career trajectories and so on. We all tend to get a different deal, which
doesn’t actually bode well for a coherent and cohesive team! It’s not just social care
and health that are different; it’s complicated by the other groups such as
education that we have to liaise with.’
‘There’s still an issue about getting social services involved. Some of the problems
are that they’re funded differently from us and some of the medical focus and
terminology doesn’t endear us to them.’
‘There are all these issues around the use of language, which is also reflected,
when we are trying to write up protocol strategy and documents.’
‘There’s no commitment in our organisations to drawing the areas together but it’s
more likely social services and education will be pooled together because they’re
county council, they will come together first.’
‘We should have an integrated multi-disciplinary team but this is influenced by
organisational cultures. Even when you overcome this and you get the two
organisations to share their philosophy, they’re (social services) so stretched for
resources it creates problems. If a strategy is to be devised to integrate social
services more into early intervention, it has to be an inclusive endeavour. It has to
be worked out jointly otherwise they will not commit the funding.’
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‘We had an initial meeting with our CAMHS representative but they were almost
talking in the third person, detached. And I know CAMHS did have some money as
well so I was really trying to say “Let’s pull some thoughts together…” but their
response was “Well you’re developing a specialist service which’s fine but isn’t
going to impact on us.’’’
‘I didn’t think it would take as long as it has. It’s because we couldn’t agree on who
would deal with 14-16 year olds in crisis. It’s taken so many meetings with
commissioners from childcare services, EDT and it’s just been going round and
round.’
Financial status and organisational resources
The majority of commissioners felt the financial status of the organisations had a
significant impact on relationship development and the ability of organisations to
work together effectively.
‘We have had real difficulties with social services and accessing them and working
alongside them is nigh on impossible because they are so over budget to the point
where they can’t even manage the basics…’
Pan (area name removed) CAMHS planning officer:
‘We’re not at that stage yet. I mean we have to be very secure in our finances
when we go down that road and there is still a lot of financial pressure within the
children’s services in (area name removed).’
‘We’ve tried to develop input from CAMHS but they’ve said “It’s not a priority for us
- so we’re not going to put money in, we know it’s a good service so we’ll give you
some people to help out but we’re not putting money in.’’’
Organisational change
Some of the commissioners also identified recent organisational changes as
important and felt poor relationships between organisations were a reaction to
change and also reflected the level of maturity within the different organisations:
‘I think there are issues with particular people who don’t want to engage with us. I
think it’s kind of a defence mechanism.’
‘It’s hard - the principles are there but I don’t think the structure is ready especially
in a place like (name removed) which has four PCTs and one local authority. The
local authority doesn’t seem to have the structures, which can relate to four PCTs.
So there’s been a huge change, a raft of changes which have happened too
quickly.’
Three commissioners identified how more immature organisations had less ability
to influence the planning process of EISs, which had an impact on their ability to
commission services:
‘I think I can also say that the local planning group in this area haven’t been
particularly pro-active, particularly because of the large number of organisational
changes that have taken place recently. So it’s (referring to mental health planning
for children) been left in a void for a while.’
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‘Our LIT is quite junior and doesn’t really have that much power or influence over
mental health development in this locality at the moment.’
‘The more mature LITs say in (name removed) have got really good engagement
with local services and all of the different elements of the community tend to be
well represented. Perhaps the processes of the less established LITs aren’t quite up
to that yet and so that reflects on their ability to develop effective early
intervention services amongst others.’
Organisational stigma
A significant proportion of the PCT commissioners described how they felt the PCT
placed low priority on mental health and that there was a degree of stigma
attached to their roles as commissioners for mental health. This had an effect on
their ability to carry out their commissioning role by reducing their potential to
develop intra and inter organisational relationships.
‘There was a gap of about eighteen months before I started, which the PCT didn’t
seem either in a hurry to fill or perhaps weren’t able to fill. That meant the role was
care-taken by different people in that time.’
‘I’m not convinced the PCT places huge priority on mental health. When I first
started in this role there were four people in our ‘team’ working on mental health.
There was (name removed) an external consultant, (name removed) my line
manager, myself and (name removed) who had a lead role in mental health at a
higher level. All that has changed now. (Name removed) has finished, the PCT
decided (name removed) should take a step back from mental health and I’m
leaving next week and have no replacement.’
‘There’s an issue within this PCT that mental health services haven’t so far been
commissioned seriously. There was a dedicated post and it was just vacant. They
had trouble recruiting to it so it’s been vacant for about a year. I think someone
was retiring and they offered that person the caretaker job for two days a week.’
Other individuals felt they experienced stigma related to their role from colleagues
across different organisations:
‘I see mental health as a challenging area to commission in compared to some
other areas. Mental health still has this stigma of the institution and the clinical
model is still alive and kicking and recovery being very weak. The commissioning
population itself is fairly small and I find there is stigma across organisations. Even
within the university organisation, for example, people hold attitudes of what
mental health or illness is.’
‘I think what I’ve found within NHS organisations is that it (mental health
commissioning) doesn’t seem to be everybody’s business and you have to work
really hard to get it profiled onto other people’s agendas’
‘I have come across NHS managers that still don’t want to have to attend to, or
prefer not to be involved with mental health. They just don’t want to know.’
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‘I get a feeling I don’t get the same things as some of my other colleagues, but I
don’t know if that’s the truth. It’s interesting; a remark somebody made when I
started on the first day and somebody said, “You’re brave!”’
The depth and quality of organisational relationships and their impact on
the commissioners’ role
The quality of relationships between different organisations appeared to be an
important factor influencing commissioners’ ability to carry out their role effectively.
The development of ‘quality relationships’ between different agencies appeared to
be significant at a number of levels, with both within and between organisations.
A number of commissioners reported that good quality relationships within their
organisation particularly with more senior executives within the organisation, which
facilitated their role and enabled more effective commissioning:
‘I think the strength here is in the grouping - there is peer support - people can
more easily swap ideas and support each other so the Director and Deputy Director
have an awareness of early intervention which is quite high level.’
An Executive Director for Commissioning and Service Development said, in relation
to communication:
‘I generally would feed back to the LITs on a monthly basis but I have regular one
to ones with (name removed) and will update her about what is happening at the
meetings that I’ve been at and she will update me about what she has been doing,
which helps make it work.’
Conversely, poor quality relationships and communication between individuals
within an organisation appeared to have a negative impact on the commissioners’
ability to undertake effective service planning and development:
‘I do feel there is a tremendous lack of communication and so a lot of meetings
have been going on above my level and I don’t always know what has been
decided. People in those meetings don’t necessarily know as much about the early
intervention model and principles so it doesn’t fit together within the PCT.’
Structural relationships between organisations and implementation issues
One area where inter-organisational relationships appeared particularly important
was the interface between the SHA and PCTs, Mental Health Trusts or Social Care
Trusts. Generally, the relationship between these organisations was perceived as
hierarchical. A small number of commissioners considered that this arrangement of
a top-down hierarchy, with the policy formulated at a national level, interpreted at
the PCT level and implemented by the early intervention team members at the
‘ground level’, was the most satisfactory way of introducing new policy. They felt
that the top-down approach gave them an appropriate element of control required
for successful implementation of the new and potentially complex early intervention
policy.
‘It is very clear at the top and it filters down - you know. I find the Strategic Health
Authority very, very supportive. I mean not just in advice and that sort of
facilitating role but also in practical ways - they found some one-off development
monies to help us implement small projects, you know as part of this programme.’
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SHA Mental Health Lead perspective:
‘Partly to monitor, partly to lead development and to facilitate that development. I
can think well this is the target and this is a good service to develop so let’s move
in this direction and I guide and steer in that way.’
One SHA executive felt the value in having a top-down approach benefited certain
areas like mental health, which might not otherwise be considered for funding:
‘Look I know it’s tough but you’ve got to put mental health alongside children,
chronic disease, diabetes, otherwise you’re going to get it in the neck. That’s my
job to make sure that happens.’
On occasion, the top-down approach led to problems particularly in terms of
balancing issues of monitoring and performance management and strategic
development. A number of commissioners felt that their relationship with the SHA
was not facilitative but more censorial in nature, particularly in relation to targets.
SHA executive:
‘Yes I think having the two functions (performance management and supportive
developmental strategy role) causes tensions. I try and treat it fairly light heartedly
really and defuse it but…’
PCT executive talking about targets and SHA:
‘If you don’t comply you get battered. I think that’s the negative side of targets but
this means you sometimes totally miss the point.’
PCT executive talking about SHA:
‘I think it depends on which bits of the SHA you talk about. (Name removed)
perspective is to try and be as facilitative and argue things through with the
Department (of Health) where it doesn’t make sense.’
A PCT commissioner:
‘The Strategic Health Authority’s role seems to be around - “Are you hitting your
targets? Are you hitting the financial balance? Are you ticking off all the things you
need to do?” So it’s very much performance monitoring rather than saying, “We
think the strategic direction for early intervention or mental health should be this
way.’’’
Only one SHA executive expressed the opinion that his role was purely censorial:
‘I’m keen that they are hitting targets and that’s about it.…I know what they are
and I know what I expect from them. …Have you got one? Does it meet the criteria
set out in the MH PIG? Is it delivering what it should do?’
At the opposite end of the spectrum, some PCT commissioners were trying to
develop the policy from the bottom up, adapting and responding to their local
environment and patients’ requirements. This occasionally conflicted with national
policy and caused some tensions.
‘There’s something about the staffing profile (of the early intervention team) that’s
problematic. PCTs are responsible for the provider organisation and it’s our role to
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ensure that services reflect the communities they serve. How do they interact with
those communities if they do not reflect them?’
‘I mean (name removed) has got a huge population of young people because of the
two universities and I think if I was going to sit down and look at designing an early
intervention service I would want there to be more ownership from the localities as
opposed to a sense of it being proscribed from the top.’
‘For example in (name of PCT removed), they’ve got a bigger population and a
greater incidence. The DH are wanting us to have a whole dedicated team of our
own which we don’t necessarily feel is right for us given the prevalence on our
patch. The model that is being touted around might be gold standard but we should
still be able to tailor it to local situations be that financial, incidence, pathways,
whatever.’
Talking about the MH PIG:
‘I felt the level of detail didn’t really necessarily always relate to us. I felt I needed
to challenge some of that - you don’t necessarily need a clinical psychologist to do
some of the stuff they’re saying. That’s the benefit of interpreting it with a mental
health background.’
‘But the new system of the NHS appears to work to a blue print which is nationally
created but that doesn’t work for local development and us trying to use our
resources effectively.’
Strategies to overcome barriers to relationship development
Most of the commissioners interviewed had good insight into the nature and quality
of the relationships between the different agencies they were involved with.
Suggestions how to overcome these barriers to the development of relationships
included simple measures such as protocol creation and inter- and intraorganisational meeting attendance:
‘There are certainly benefits in sharing opportunities in learning where other places
have done it first, which you get to learn about if you go to the different group
meetings. Also you can gain some economies of scale by sharing.’
‘The way I think - it’s a traditional way I respond to how you deal with those things.
If you’ve got a structural gulf what you do is write a protocol to bridge that gulf.’
‘What I did do, when we had this issue about the 14-16 year olds, I did email a few
of them to get their views on what’s happening in their area and basically it was the
same really. We’re all singing from the same hymn sheet, no one has solved the
problem. That’s the only contact I’ve had with other commissioners in the area but
it was useful.’
One commissioner felt all that was needed was time for the organisation to mature:
‘The sort of things we are doing this year is to try and focus on things with a more
local flavour - say trying to get the voluntary and independent sector to engage
more with services (EIS), get all those organisations involved. We couldn’t have
done that in the first year, with the PCT forming, we needed to get structures and
basic processes in place first.’
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Others discussed the importance of systematic changes to the ways organisations
interact within the NHS and on a wider level, such as the creation of Joint Health
and Social Care commissioning posts, merging organisations together to reduce
bureaucracy and the need for significant investment:
‘Now the three PCTs are about to merge, I think that will help us in planning and
developing our service because we’ll only have one health body to negotiate with
rather than three. And hopefully if one person is put in charge rather than two
then….’
‘With a joint position, the principle is that you link to both organisations so you are
the conduit for both.’
A Director of Mental Health (responsible for commissioning for Adult and Child
Mental Health Services) talking about CAMHS engagement with EISs suggested:
‘I suppose if you look at (name removed) CAMHS then it’s only been in the last
year that we’ve started putting any investment into the service. It’s under
significant pressure and I don’t think we’re going to get sensible engagement with
colleagues in CAMHS until I’ve been able to help them get some of their problems
under control.’
However, many of the joint commissioners, whose role had been created to
facilitate joint working between health and social services, reported difficulties in
interfacing with the social service aspect of their role. They described a medical
focus to their job, which affected service development by prioritising medical
issues:
‘Well you see I’m supposed to be in a joint role. My post is half funded by health
and half, social care. I’ve felt though that all my work has been for the PCT
although I have been to a couple of meetings with a couple of other joint
commissioners but when I’ve tried to discuss early intervention there I’ve been told
it’s not a social issue.’
‘Well it is a joint commissioning role, but how far it is joint is another issue. In
terms of the PCT I have responsibility for the entire budget but in terms of the local
authority it’s very different. The Assistant Director has the final say in terms of the
budget there.’
‘The whole point of the joint commissioner role was to integrate health and social
services but I don’t think you’d find many people within social care, higher up, who
would actually be able to tell you much about early intervention because they’ve
handed it all over to the medical model, to the PCTs.’
3.1.3 EIS Team Leads' and team members' experience
This section details the key themes that emerged during the four stages of data
collection.
Team structure and staffing
The most commonly adopted model for the EISs was that of a stand-alone,
functional team where team members worked solely with individuals with FEP. Two
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of the 12 active EISs worked on the basis of a Hub and Spoke1 approach. The
significant factors which appeared to determine which approach or model was
adopted, were the level and permanency of funding and the geography of the
locality, particularly the degree of rurality. However, both of these services would
have preferred to adopt a stand-alone approach had sufficient resources been made
available.
With the exception of one team, the majority of EISs were multi-disciplinary in
terms of their staff structure and even where services were described as being in
their ‘infancy’, it was anticipated that Youth Worker, Social Worker and/or
community development posts would eventually be established. However, there
was a strong sense that the establishment and appointment to such posts was
hindered by two inter-linked factors: the lack of resources to fund non-NHS staff
and, where resources were available, apparent difficulties in recruitment. The first
of these factors may be understood within the context of strategic decision-making
in that there was an apparent lack of robust partnership working between health
and social services at a senior management level. This reflects the comments of the
PCT commissioners. This was said to have led to a lack of commitment by decisionmakers to develop an holistic service. The second appeared to be related to
perceived isolation of non-NHS staff within a predominantly health-orientated
working environment. The consequence of this, for some team members, had been
problems in accessing appropriate staff training and development opportunities
and, in certain circumstances, supervision.
In response to problems associated with recruitment, one EIS had moved away
from advertising for particular professional groups (for example Social Workers and
Occupational Therapists) emphasising the need for capabilities rather than
disciplinary backgrounds. The intention was that the presence of demarcations
between the professional groups would ultimately diminish as the following point
illustrates:
‘What I’m going to do, which is what I did in my last post, is the post will be
advertised as case managers, care support workers, they won’t be advertised as a
nurse, as an OT, as a Social Worker. They will have a broad remit and we’re going
to use a very broad person specification pulling in the Capabilities Framework. This
will hopefully appeal to people coming from a variety of backgrounds and gender
and ethnicity. We can try and skill mix from a variety of backgrounds.’
Inevitably, there had been a movement of staff within each of the sites but with
one exception, all ‘leavers’ remained within mental health services either joining
other teams as clinicians or practitioners (Crisis Teams, for example) or by securing
promotion to management positions. Another significant development had been a
noticeable increase in the number of Support Time and Recovery (STaR) workers
within the teams between 2004 and 2006. The reasons given for this included the
need to employ individuals with ‘life skills and experience rather than professional
health and social care qualifications’ and to ‘encourage skills diversity within the
teams.’ There was a strong sense that the role of these individuals was invaluable
particularly in terms of initial engagement and also in providing on-going support to
service users.
1
Attached EI workers within a generic mental health team such as a community mental
health team
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Although we will explore this in more detail later in the report, lack of resources or
the ‘disappearance’ of committed expenditure, remained a major concern. By the
final round of data collection, this concern manifested in a number of ways
particularly in terms of uncertainty in relation to the future of some EISs, low
morale and frustration at ‘not being able to fully develop the service’, as the
following comments demonstrate:
‘…Apart from the morale and retention and those issues, I think clinically we will
have to fold. I think we will have to disperse into separate community mental
health teams because we can’t continue absorbing acutely ill people and having 1216 of them on caseloads…’
‘…we will go the extra mile, but we seem to be going the extra ten miles at the
moment and I know none of us complain about that, but in realistic terms we can
only do that for so long before we burn out. And that’s my biggest worry. Because
we so want to help young people and do what we can when we can, and we will
just burn out.’
‘The funding was lost last year. It’s restricted this year; it’s half of what we
expected. And half of what is in the development plan proposal I put in – two staff
a year over a three year period to get a team of six.’
Strategic issues
With the exception of the two well-established EISs, proposals to establish the
‘newer teams’ were initially discussed within Local Implementation Team (LIT)
meetings. Following these discussions, steering groups were established in most
localities with a remit to determine the operational aspects of service development
and delivery. Whilst, in the main, the membership of steering groups seemed to be
both comprehensive (in as far as there is a wider representation of local
organisations and agencies) and useful, in the respect that they are perceived as
having some influence with the funders, their effectiveness appeared to vary
considerably between different localities. In some localities, for example, the
steering group had not met for some time or the membership had dwindled or was
described as ‘having outlived its purpose.’ In others, steering groups were seen as
a positive vehicle for ‘pushing ideas up to the LIT.’
There was an apparent void between strategic and operational decision-making,
which was evidenced by views that implied that commissioners of services had little
understanding of the actual development and delivery of services ‘on the ground’.
This was perceived as resulting in ‘misunderstandings’, ‘lengthy delays in decisionmaking’ and ‘burdensome monitoring.’ Moreover, it was perceived by EISs that
commissioners were more concerned with ‘quantity over quality – the numbers
game’ and that such a focus promoted a ‘target-orientated approach’ to service
delivery that had two significant negative consequences.
First, teams described the feeling of constantly having to work at capacity or
beyond for lengthy periods of time in order to demonstrate that targets had been
met before additional (or indeed pre-planned and ‘committed’) resources were
made available. This was said to be the case for both established and emerging
teams but was seen as more significant for the latter since providing demonstrable
evidence in relation to ‘need’ was construed as a key determinant in securing
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continued funding. The EISs whose development was relatively late in terms of the
time-scale set out in the NHS Plan, appeared to have to justify their funding and
demonstrate their value more clearly against other competing priorities within their
respective PCTs. However, in contrast to the early experience of relatively more
established teams, four ‘newer’ teams resisted pressure to incept individuals into
the EIS who had previously had contact with another mental health team (usually a
Community Mental Health Team - CMHT). One team in particular, felt that the
decision whether to move from a CMHT to the EIS must be guided by the views of
the service users experiencing FEP rather than complying with pre-set targets:
‘I think it needs service users to be involved in that process. It might be that they
are given the option that their carer or care co-ordinator might go and say ‘look
there’s a new service that’s established, it’s an intervention service, it can offer
this, it will cater for your type of needs, how would you feel about that service
taking over your care?’ It might be that the service user is given the choice or an
option in that process. … they may have developed that trust, that relationship,
that rapport, be working well, be engaged with the service (CMHT), know the
doctors, there’s continuity there, whereas if they come across to a new service, it’s
about getting known again, people may have to go over the history again and they
may not want to do that, so there’s lots of other factors that you need to take
account of.’
There was also a palpable sense of frustration within some of the EISs in relation to
their inability to undertake developmental work because of the apparent overemphasis on ‘numbers of inceptees’:
‘…We need to go out to schools, colleges and to youth clubs raising the profile of
early intervention and the awareness of problems. We could even write an article in
the local paper and things. All these will bring people forward at least for an
assessment or screening in terms of early psychosis. We know that we need to do it
at some point but it’s about getting the balance right. I’m not sure that the PCT
understands how much time developmental work takes.’
Mirroring the belief that some commissioners had little understanding of operational
issues, the majority of EI leads acknowledged that they had little or no idea of
strategic issues, in particular, decision-making and resource allocation, suggesting
a mutual lack of understanding between strategic and operational managers.
During the third round of data collection (spring 2005), there was an emerging
sense that the enthusiasm, drive and momentum to establish and maintain EISs,
particularly from a commissioners’ perspective, appeared to be diminishing. The
impact this appeared to have on EISs was the delayed or thwarted implementation
of their next planned phase:
‘We were supposed to be moving into phase 2 – there was going to be a whole new
recruitment drive with that and that incorporated a lot of professionals – OTs etc.
As it stands there is no phase 2 investment, but we are waiting to see. There is talk
between the PCT and the Trust around what minimal investment would be required
to manage caseload targets so I think there is still potential that we might get
another care co-ordinator but it’s very uncertain.’
‘…it’s happening to other services, we have to work innovatively to make the best
we can with the client – I guess that the practicalities are beyond that – we might
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have to think about how we work with the service and operate a different model,
but until we know exactly where we stand we just carry on. I think we are
uncertain as to how to take things forward because if we are going to impact on
DUP we should be doing a lot more of the early signs, but if we do that then there’s
the potential we could be overwhelmed.’
‘I think we will have to review how things are going – obviously we are not getting
the team that was originally in the business plan – we are not really in line with the
PIG and we are going to have to wait and see what happens and with what we get
now…we are a dedicated EI team, a stand-alone, but whether that will come under
threat …we just don’t know.’
A number of teams noted at this time that they would probably need to review the
way in which services were delivered as a result of limited resources and suggested
that a pragmatic response would be to adopt a ‘hub and spoke’ approach, rather
than a ‘stand-alone’ service. While such a move would continue to be seen as being
PIG-compliant, there was a strong sense that this would offer a less comprehensive
and, thus less satisfactory, service to individuals and/or carers.
During the final round of data collection, it was clear that only one service had
tightened its eligibility criteria on a permanent basis while others had temporarily
imposed waiting lists or reduced the length of time made available to services, with
discharges taking place earlier than the intended three year period. While there was
a degree of uncertainty in respect of the long-term position of EISs, most services
did not feel that their future lay as an ‘add-on’ to, or a ‘take-over’ by CMHTs,
particularly if their client group or target numbers could be sustained.
‘I think your power lies with your clients and basically the bigger your number of
clients the much harder it is to get sucked in anywhere else or merge with anyone
else.’
And:
‘I couldn’t see early intervention becoming part and parcel of a CMHT type set up. I
don’t think it would work, there’re too many risk factors, suicide risk, which we
manage to keep down, but nationally is quite high. The risk of people not getting
that extra support to get back into work, that sort of thing. I don’t think it’s as
available in a CMHT. So I think it will carry on as a functionalised service.’
Despite this, most of the EISs acknowledged that there was a risk that early
intervention could fall off the political agenda and actions planned to safeguard
against this included:
‘What we have to do now is to demonstrate how, what difference we are making to
people’s lives and how we are engaging with the whole range of services out there,
what service users and carers are saying about us.’
‘I don’t see demand shrinking and I don’t see the service necessarily growing
either. I think the way we deal with that is trying to be strict about our entrance
criteria and also I think we’re going to have to be quite strict about not hanging
onto patients once their three years are up, because there is a temptation to think
‘oh because we’ve done so well it’s a shame to discharge them now’ particularly if
you feel you may be discharging them to an inferior service.’
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Two rather more sceptical views cited insufficient funding as a reason, why, in
some areas, services may be disbanded:
‘I think they haven’t (the Government) done it justice for that very reason because
the resources haven’t been there so things have been set up to fail. It doesn’t
surprise me that some intervention services are closing down in some areas and it
wouldn’t surprise me if something similar were to happen here. In many respects,
had I had my time again, I certainly would have done things differently and would
have pushed for things to be done differently than the way that they have been. I
certainly believe in early intervention services and think that they should be
championed, that they should be allowed to develop and they should be the future
of mental health services, but whether that will be allowed to happen or not, I
really couldn’t say.’
‘Once it (the service) was established we were forgotten about and some of our
money was taken away to spend in other areas, and it does feel a little bit like
we’ve been forgotten about.’
Decision-making and networking fora
As discussed in the previous section, there appeared to be little understanding of
the mechanisms supporting strategic decision-making and/or budget allocation at a
team level. Examples of this are provided by the following comments from two
different EISs:
‘I think it’s the Director of the service that makes the decision…but really the
decisions come from him and trickle down to us. I don’t think I’ve got anymore of
an awareness than I had six months ago.’
‘…I think the decisions are made at Trust level. We don’t really have a say and it
feels that, given the state of the Trust, even people at senior level, say in
psychology, don’t have much of a say in decisions that are being made at Trust
level.’
However, individuals were conscious that, irrespective of how decisions were made,
compliance with them, particularly in terms of targets, had a direct impact on EISs.
‘They (the PCTs) lay down the guidelines as to what they hope could be achieved
within the various stages of development. If we achieve the targets they set, then
additional funding is made available to us.’
Some members of EISs were unsure how their targets were set and queried the
evidence-based nature of the decision-making process.
‘You know we have target numbers and I’m not sure that these are particularly
helpful because I think services should be developing, taking people in their first
episode and building from there rather than taking people who say, have been in
contact with services for two and a half years just to fulfil the targets. Despite the
days of evidence-based medicine, I can’t find any evidence for where the targets
come from.’
Furthermore, it was suggested that on occasions, operational decisions needed to
be ratified and thus strengthened by respective steering groups:
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‘…I think the team was really struggling with referral criteria, deciding who was
appropriate for the team, and I think there wasn’t a very clear referral criteria, it
was difficult to say no to people. If a very powerful referrer, say a Consultant
Psychiatrist, wanted to refer even if it wasn’t really appropriate, it was very difficult
for individuals to actually say no but I think the team has changed. The Steering
Group has been able to be clearer about what the criteria are, but I would say we
are taking more decisions as a team, saying the responsibility is shared and I think
we’ve got much better at shaping referrals, so that’s quite positive.’
A significant change noted during the final round of data collection was the
apparent change in emphasis placed on the value of the regional network meetings.
Previously, these were construed as providing important opportunities for peer
support and learning, particularly for the emerging teams. However, while they
remained ‘regular diaried meetings’ their focus tended to lean towards financial
difficulties and what may be understood as succession planning, particularly in
teams that were facing a potential dismantling of existing provision.
There was a strong sense that the low profile of the network meetings was
attributed to the departure or lesser involvement of a number of ‘local champions’.
These individuals were seen as shaping EISs both in their respective localities and
also across the West Midlands, thus creating a shared ownership of the principles of
early intervention at a regional level. Indeed, by the autumn of 2005, the
significance of ‘local champions’ had changed considerably.
Six EISs expressed the view that no ‘local champion’ had existed within their
locality, but four of these felt that as their service develops the team members will
themselves take on this role:
‘From the Trust I get no interest in this whatsoever. There is no support, you know,
either interest-wise or monetarily, you know, and there is no support. So, I am
trying to engage others to get this. So, I suppose, you know, I am championing for
trying to get sort of services that we need for us, but I really don’t know. I think
the early detection... the way that some teams and some areas have developed are
pretty poor really. You know, the Trust has just sort of wanted to tick the box and
at least, you know, give (name removed) its due. It set the money up. It may not
have been the full, you know, the full whack, but it was definitely a good start
compared to other areas.’
‘I think it’s down to us that are in post, … to champion EI within the Trust.’
‘Our service manager is supportive and is trying to sort of supports us in meeting
our targets. We’ve not really got a (name removed) or a (name removed), we’ve
got nobody like that within the Trust at that sort of high profile. It would be nice if
we had even a consultant or a psychologist in the higher structures that was
supporting our cause and advocating at a high level.’
‘Each of the team are champions, because they cover a patch. They’re on their
own, they’ve got one Youth Worker and CPN in an area and each of those have a
significant role in being local champions. The Youth Workers are champions in the
youth agencies. We’ve had a letter back from Connexions commending the work
they’ve been doing, you know we’re getting lots of good feedback … so they’re
champions in the wider organisation.’
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Four services noted that ‘local champions’ had been influential, particularly during
the developmental phase but that since then, they had moved onto other posts.
The need for high profile advocates and continued support was viewed to be
unnecessary within their respective Trusts because they were described as being
‘receptive and supportive, not only of EI but also the development of other
functional team’.
As a result:
‘In many ways we’re pushing at open doors, we want to do much, much more, and
now we’re seeing more resources.’
The remaining four services were aware that the profile of their respective EISs had
been raised by the presence of ‘local champions’ but alongside the advantages that
this had yielded there were corresponding disadvantages. The following points from
each of these teams demonstrate these:
‘So many people come to (name removed) and want to spend days or weeks with
the team that it’s just, people think that early intervention is going to magically
cure everyone … sometimes people say ‘can I spend a couple of days with you’,
‘can I shadow you for a couple of days’, and I’m just thinking ‘God I’ve got so much
work to do!’ just like any other team. I don’t want people trailing round after me
because I’ve got, a lot of the work I do is just getting on with things that I have to
do.’
‘Sometimes it’s a mixed blessing, because sometimes perhaps people feel (name
removed) must have a fantastic early intervention service because we’ve got (name
removed). They may be surprised to see that we have a little dingy office and we’ve
only actually got up until recently, only got four case managers covering the whole
of (name removed), and we aren’t actually as well resourced as people might think.
… it can also create a burden on the team because it brings the spotlight onto the
service, everyone wants to visit, everyone wants to visit here because we are a
fantastic service, because we’re associated with (name removed).’
‘Giving interviews, we had journalists from the Health Service Journal came to visit
us the other day because the Trust has just got three stars and the Trust thought
who can we show off, and they thought ‘I know, the Early Intervention Team’, the
‘leading light of the Trust’, so we end up giving interviews to journalists of national
magazines, when sometimes you feel, no, actually I need to go and see some
patients. I’ve got a lot of paperwork to do.’
‘The request for visits was becoming unmanageable so now we have a site visit day
a few times a year. Saying that, people still want to come on placements so we
have our quota of student nurses and there’s others that want to come on
placement as well. Last Friday for instance, we had a group of people from Finland
and a group of people from Sunderland, both down for the day. It actually takes a
day out of someone’s clinical time.’
Competing priorities
All of the EISs had identified a number of competing priorities at both strategic and
operational levels, which were felt to have had an impact on the development and
delivery of the service. At a strategic level, organisational restructuring of either the
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Mental Health Trusts, the PCTs and or the Social Services Department was
construed as a major hindrance primarily because considerable time was perceived
to be taken up with bedding in their own processes and structures without any
consideration of the impact this was having on the EIS. This left members of some
EISs feeling that they were being ‘sidelined’ and that this inevitably caused delays
in what, for them, were crucial issues – budget setting and decisions relating to
continued funding. This apparent frustration was compounded by the notion that
while the strategic processes were being ‘sorted out’, the EISs were expected to
continue to provide services and monitoring data for more than one organisation
(which invariably required slightly different information) and attempt to strike a
balance between developmental work and direct service provision.
At an operational level, six competing priorities were identified by the EISs, which
were seen to have varying degrees of significance during the data collection.
1. A number of EISs had adopted a more socially rather than medically-orientated
approach to service development and delivery and while this decision was seen, by
many, as being Policy Implementation Guide (PIG) compliant, it was also seen as a
potential source of conflict by some Consultant Psychiatrists. Striking a balance
between encouraging psychiatrists to ‘get on board’ yet remaining true to EIS
principles was construed as a tension for some services. See the EDEN Plus report
for further details
2. Some of the EISs identified implicit competition with other emerging teams
within the adult mental health domain such as Assertive Outreach and Home
Treatment teams. This manifested as perceived competition for funding within tight
fiscal constraints, competition for staff and, in some EISs, a belief that other teams
perceived EISs as elitist and under-used. This competitive spirit was difficult to
manage within the broader context of mental health services since there was a
need to work with other teams to develop and implement entry and exit strategies
and liaison regarding out of hours cover.
‘I suppose, at the moment, the priority in the Trust is Home Treatment and Crisis
Resolution so we’ve recently had a day with probably 60-80 people there looking at
these issues. One of my priorities is to ensure that EI is flagged up and this needs
to be done in conjunction with Home Treatment and not in isolation.’
‘We’ve had a low priority this year. Once they got me in post and got the proposal
sorted then literally that was it for early intervention. It was forgotten about and
put on the back burner. Part of that was down to not having a star rating or a Crisis
Team so they have put a lot of effort into that. There is the danger that unless we
get a national profile and some pressure to develop, we’re going to be in trouble I
think. I read an article recently that said that every area has to have an early
intervention team and that’s the line that the Government’s pushing and that’s the
line a lot of people believe. Unless we get some pressure to actually develop and
continue to develop, we’re in great danger because the money is tight.’
3. The use of the Care Programme Approach (CPA) documentation was seen as
‘laborious and time-consuming’ in as far as it directed time and energy away from
effective engagement of people into the service. Moreover, it was suggested by
several EISs that neither the documentation nor the degree of formality associated
with its use was youth sensitive, which detracted from the basic principles of EISs.
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4. Developmental work was seen as an integral part of an emerging service, yet
justifying time spent on activities and establishing links that take time to come to
fruition was often described as problematic. The tension between developmental
work with, for example, youth and community services and, at the same time,
providing a good quality clinical service, was a recurrent theme.
5. There was a strong sense that the imposition of targets, particularly in terms of
‘client numbers’, had led to the creation of a ‘catch 22’ situation with teams having
to demonstrate that specified targets had been met before additional, or indeed
previously agreed funding, was released. This manifested as an ‘operational
nightmare’ for many services where a careful balance had to be established
between making the service accessible without ‘opening the floodgates’ to new
clients. In this respect, the extent to which promotional work was undertaken with
potential referrers had to be monitored carefully. Furthermore, several Team Leads
questioned the validity of some targets and implied that some commissioners
appeared to have little understanding of what they meant in practice. The following
two comments demonstrate these concerns:
‘It (the PIG) is a hindrance really because if you slavishly follow the guidelines you
will end up with a number of people on your caseload that shouldn’t be there – they
don’t really need three years of our service. At the same time, if you keep people
on unnecessarily they are blocking places that other people may need.’
‘Targets are not always achievable because they are not practice based. (…) There
is an awful lot of pressure about meeting targets especially DUP and we’re not
resourced to even try to target DUP…We just have to let it go because otherwise it
gets in the way of doing the job. I think it’s a bit unfair that in developing EI
services, they put in a target affecting DUP…We need to work through care
pathways and through education, which are both more subtle that meeting targets.’
Where teams had met their targets in terms of client numbers, it was suggested
that the quality of the service was being compromised because individuals were
working at full capacity. The following comments were made by team members in
different case study sites:
‘Yes there’s money and we should be developing, we should be rolling out this
service countywide now developing the service, developing training courses and the
like, but you can’t do that when you’ve got a caseload of 30.’
‘At the moment we spend a whole morning going through cases. More people will
be unmanageable. We have already prioritised (green, amber and red) but still we
spend too much time in team meetings. Higher number will compromise the quality
of the service. We will have to find other ways of working to maintain the quality,
but the anxiety is as the numbers go up, the quality will go down.’
In addition, one Team Lead suggested that although they were aware that some
service users ‘needed to be exited from the service’, the Care Co-ordinators had
said that they had insufficient time to undertake a detailed review of their caseloads
in order to effect discharge. A reactive and short-term solution to this problem was
described as:
‘Having to keep hassling the Care Co-ordinators for the paperwork so this
(discharge) can be done, but because they’ve got so many clients to deal with at
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the moment, they’re having difficulty doing it. I’ve actually organised for them to
have a day or two at a time, taking themselves off to another part of the building,
booking a room, doing no clinical work and just dedicating time to paperwork. I
know it makes more work for the team as a whole, but it’s the only way that seems
possible to do it. The priority is really, to get the caseload down.’
6. A newly emerging example of a competing priority was said to be the
implementation of the ‘Agenda for Change.’2 The process of writing job descriptions
and ‘re-aligning members of staff’ was described as very time-consuming and
distracted attention away from the day-to-day management responsibilities of the
EI Lead, such as compliance with the Clinical Governance Framework, supervision
and staff training and development.
Operational issues
Aims and objectives
Throughout the four stages of data collection, the aims and objectives of the EISs
remained constant, regardless of stage of development. Furthermore, there was
considerable consistency in the type of approach adhered to by all the EISs in
terms of service availability, ‘out of hours’, crisis cover, the implementation of an
holistic approach to FEP and the need to work with service users in an holistic way.
The importance of a recovery-focussed approach was also stressed within almost all
EISs.
‘We try to engage people after the first onset of psychosis, to promote recovery,
promote self management of their illness, minimise relapse and really promote and
enhance psychological well-being and social well-being and generally improve social
functioning.’
By disaggregating the three elements of a bio-psycho-social approach, it was clear
that the biological aspect focused on the need to treat presenting psychotic
symptoms promptly and effectively through the use of atypical anti-psychotic
medication.
From a psychological perspective, the overarching aims were to provide individuals
with the skills needed to help them live with and understand their psychosis and to
gain insight into early behavioural, cognitive and physiological signs of relapse.
Finally, from a social perspective, the aims included the need to offer support to
individuals in order minimise the impact of FEP on their lives. By so doing, the
teams’ role was to help service users maintain social stability and social growth as
well as attaining or regaining their social networks in terms of appropriate
accommodation, accessing welfare benefits and vocational and social activities.
EISs viewed a recovery focus as an important element of care, and worked with
service users and carers to promote this. This also included information to correct
negative stereotypes of people with psychosis (see section 3.4) and thinking ahead,
where possible, about exit strategies from the EIS.
2
Agenda for Change is a new pay and reward system within secondary and community care
introduced in December 2004. It aims to provide equal pay for work of equal value for all NHS
staff and to modernise national terms and conditions for virtually all the non-medical staff in
the NHS.
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All services recognised the importance of working with the service user’s family and
significant others, not only to increase engagement with the service user but to
equip family members with knowledge of the illness and their role in providing
support and aiding recovery.
An integral element of delivering an holistic approach was described as being
‘needs-lead and client-centred’.
‘I would hope that it’s about the recovery approach and … normalising models, very
non-medical and led by service users. And I would hope there is something in there
about valuing people as being human beings and that people are experts by their
own experience, that kind of stuff, that people often think is kind of unimportant.’
Furthermore, throughout the data collection, there was a growing awareness of the
benefit of working with non-statutory (and often generic) voluntary organisations in
terms of providing further support to an individual’s recovery. See the EDEN Plus
report for further details.
‘(joint working) is the key to the management of psychosis particularly for young
people. Being active, involving other agencies, but friendly agencies from the
voluntary sectors where there is just so much appropriate stuff that is there for us
to, to access and people to work with … It’s also really good for clients, good for
them to access services outside of the Trust or social services. We’ve made a lot of
progress in developing relationships that are mutual – we can help them with
information about mental health and they can help us in terms of what else is
around in the voluntary sector.’
Demographic factors
A number of demographic factors, notably cultural characteristics, relative
deprivation, geographic location and gender, were said to present challenges to
varying degrees within the context of service development and delivery.
Where cultural, and attendant language factors were construed as key
determinants of a responsive service, several EISs reported difficulty in accessing
reliable translators. The notion of reliability was not always related to working with
particular translators at specified times but was more concerned with their
knowledge of mental health problems.
‘Language is a problem and so is the provision of good interpreters … when you
find a good interpreter it’s amazing. We have a large ethnic population but not one
ethnic group … so we need to have a very comprehensive list of people who are
both skilled in interpreting and knowledgeable about mental health.’
In this respect, it was noted that because of the complex nature of the presentation
of an individual’s symptoms and experiences, subtleties were often literally ‘lost in
translation.'
Furthermore, it was suggested that care needed to be exercised in terms of the
translator’s links or perceived links with particular communities in terms of
potential, albeit inadvertent, breaches of confidentiality. One example given to
demonstrate this point was the stated preference of a minority of Black and
Minority Ethnic (BME) service users and their families to work with an EIS team
member from a different cultural background in order to minimise such concerns.
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‘One problem that came up this morning was with a Bengali family. Because it’s
such a small community they don’t like outsiders coming in because they might
know the family which makes it rather difficult.’
Several EISs noted an increase in the number of people from Poland, Bosnia and
other Eastern European countries who were, in the main, economic migrants and
who were invariably employed on a casual basis. Alongside the difficulty of
accessing appropriate interpreters, many of these individuals were either not
registered with a GP or they, or their ‘significant others’, had little awareness of
mental health services which led to a delay in diagnosis and ultimately involvement
with the EIS.
Issues associated with the concept of relative deprivation were noted in each of the
case study sites. Whilst the impact on service users can be described as similar
(poor housing, unemployment, low income etc), the factors affecting the
development and delivery of EISs within the wider context - establishing links with
employment services, youth counselling, substance misuse services and so on was said to be additionally dependant on the geography of an area. In particular,
those EISs which served predominantly rural areas, found that apart from the
difficulty in establishing links with VCS organisations, distance between centres of
population and indeed between service user’s homes, meant that considerable time
was spent travelling.
‘We’re travelling an awful lot of miles … we can spend more time travelling than we
do with clients sometimes.’
And:
‘Because it’s a rural county and the population is quite scattered, that can be
difficult. You know if you are going to see people in different parts of the county,
it’s the travelling time, and it’s difficult for people to travel as well … if you want
somebody who wants to go to a group, you have to pick them up and it takes a lot
of time, and most things that happen tend to be in (Town A) which is a little bit
difficult for some people.’
And:
‘The geography of (name removed) causes me problems because it can be 90 miles
to get to somebody sometimes. Also I don’t necessarily know if the resources that
would help are available in a little village.’
Confidentiality in rural areas was also raised as an issue:
‘Because of the ethos of early intervention in terms of accessing less stigmatising
services, the rural make up of our area makes this difficult and impractical. But if
you have a locally based group, say in (name removed) for example, people
become very visible, you know like everybody will know that they have a mental
health problem and that’s not good for confidentiality.’
And:
‘(Name of location removed) has got a young man who has developed a psychotic
illness. He is so talked about, so stigmatised, stands out so much that the
demographic of the area causes huge problems for him and cuts off a lot of
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resources that might be available to him, as well being stereotyped as a drug user
or as an odd person or whatever.’
Another issue relating to confidentiality in rural areas concerned EI workers
knowing the parents of, and living in the same area as, one of their service users.
‘I know the parents of a young person who has been referred to me. Because I am
the only worker in the area, inevitably it was going to happen at some point. When
I arrived, his parents said, ‘Your son went to school with my son.’ It’s odd though
that they saw this as a problem and I suppose I do in some respects. But his GP
lives four or five doors away in the same village and they have no problems about
going to him.’
Conversely, EISs based in inner city areas meant that they had relatively good
access to various community and voluntary organisations. Some teams had not
been able to reflect the cultural diversity within the make up of the team, but had
been proactive in developing close links with relevant agencies:
‘There’s a lot of services offered for different cultures that have a specific
understanding of cultural needs which is very important and we do a lot of joint
work with different services. I think that the area is rich with voluntary sector stuff
which is better at offering a more holistic approach and again, is better at accessing
things that aren’t mental health.’
And:
‘There is a whole range of voluntary groups and organisations that people can
access that are either in the same street as us or not far away. And because most
of them are generic, if one of our clients is seen going into them, no one will know
that they have a mental health problem. They could be going in for all sorts of
reasons.’
A small number of case study sites noted that there was a gender imbalance within
their respective teams, which in some instances was construed as being
problematic, particularly where the team was managing relatively high levels of
risk.
‘I prefer to have more male staff on the team, because there are more males than
females with psychosis. What tends to happen is that people with a pretty big risk
history go to the male workers, and I just think that the male staff then end up
doing all the risky work…and I think that’s unfair to them really.’
Alongside such difficulties, a number of case study sites noted that there were
issues regarding vulnerable females who, in two instances had made allegations
against male nurses. Where possible, young women were not allocated to male
workers, however, this was not always possible because of staff shortages.
Referral criteria – age range
A small number of EISs worked with service users aged 16 years and above in
contrast to a relatively larger number that had extended the age range to
incorporate young people aged between 14 - 16 years. In the latter case, close
links had been established with the CAMHS as a means of ensuring a smooth
transition into the EIS. During the first round of data collection, several EISs noted
that they were uncomfortable working with a younger age range for two reasons.
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First, the majority of staff within EISs had a background in working with adults,
rather than young people, with mental health problems and this invariably
highlighted training needs. Second, a number of team members across the case
study sites felt that engaging with and incepting young people into mental health
services contradicted their philosophy of, where possible, steering people away
from statutory services. However, such concerns dissipated as the research project
progressed, as EISs formalised working arrangements with CAMHSs and youthcentred voluntary organisations. Where vacancies within teams arose, they also
began to attract people with experience of working with young people.
Two services worked with individuals aged between 16-30 although one of these
was considering expanding this to 14-30. However, it was suggested that this was
unlikely to occur because of disagreements at a Trust level:
‘…At the moment there is still little agreement at a Trust level about managing
people aged 14-16. In fact, we sometimes run into problems with 16 year and 17
year olds in the sense that if people need hospital admission the Trust believes that
16 and 17 years olds should be managed on an Admission Ward so they have to be
managed slightly differently. I think until we’ve got this cracked, it would be hard to
incorporate 14-16 year olds. There’s mainly political issues really that have been
left unresolved like provisions with Home Treatment and the normal back-up
services that are not prepared to take them.’
One team, which originally provided services to individuals aged between 14-35
had reduced the upper end of the age range to 25 years. This adaptation was said
to have been prompted as a result of an audit, which demonstrated that the
majority of referrals related to those at the younger end of the age spectrum.
Individuals over the age of 25 were subsequently referred to one of the CMHTs.
According to one person:
‘They (the CMHTs) are quiet eager to work with the upper age range (over 25). It
wasn’t the psychosis that was putting them off, it was the younger people who they
weren’t confident dealing with. …So we maintain that end of the market and the
CMHTs are going to pick up the older ones.’
Whilst no other EISs followed this course of action, it was noted that by the end of
the data collection, all the case study sites were reporting that the heaviest demand
was from young males between the ages of 17-25. This perception was confirmed
by the audit data.
Referral and assessment process
Referral pathways into the teams varied from those which adopted an ‘open
system’, accepting referrals from virtually any source (see Figure 4), to a more
restricted approach where the source was either another mental health team or
from Primary Care.
Advantages of a more flexible ‘open system’ of referrals included the ability to offer
a specialist EIS early in the illness. Some teams did, however, mention that such an
approach led to an increase in referrals, not all of which were appropriate, but
acknowledged that it was preferable to receive a phone call from a concerned
agency about an individual rather than not hear at all. Offering education and
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training to potential referring agencies in relation to referral criteria was seen as
one means of overcoming this.
Figure 4. Referral pathways according to EIS
Mental Health Services:
Home Treatment Teams
Community Mental Health Teams
Crisis Resolution Teams
Assertive Outreach
Forensic Services
In-patient Units
Out-patient services
CAMHS
Wider Health and Social Care
Services
Primary Care
Public Sector and Voluntary
Organisations
Police
Emergency Duty Teams
Youth Justice
Schools and colleges
Connexions
Youth Agencies
YMCA
Housing and Homeless Agencies
Non-organisational sources
Self referrals
Family members and carers
The on-going challenge for recently developed teams was the need to ensure that
their services were promoted sufficiently to encourage appropriate referrals whilst
harnessing and controlling ‘over-enthusiasm’ and the consequent risk of being ‘all
things to all people’. In this regard, it was suggested by team members that, during
the early days (invariably the first six months of operation), limiting referrals to
those received from other mental health services was a pragmatic method of
addressing this tension.
‘We had a fair amount of confusion about who we should be targeting, really. In the
first week we talked about the issue of whether we should be targeting GPs,
whether we should be targeting colleges and services like Connexions, youth
services etc, or whether we should stay with secondary services to begin with. And
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the way in which it’s panned out is that we will stay with secondary services and
the Consultants.’
It became apparent midway through the data collection in 2005 that referral
pathways were temporarily and partially closed down as a means of limiting referral
rates to EISs. While this was seen as being less than desirable, it was said to
reduce the number of individuals requiring initial assessments. Assessments were
described as being extremely time-consuming and often the outcome indicated that
the services provided by the EIS would be inappropriate for some individuals’ needs
and therefore they were signposted to other agencies. If, as one person suggested,
‘all mental health services were properly financed’, then such assessments would
not be a problem since:
‘…People would be put in touch with services that could respond more appropriately
and probably more timely since people would not have to be shunted around
services hearing the message, ‘sorry we can’t help you but may be so-and-so can’.
Perhaps we should revert back to the old intake teams.’
A further consequence of temporarily restricting access to EISs was that individuals
were not being ‘picked up’ as early as they should be.
‘Most of them (referrals) are coming through secondary care – we are not catching
people as early as we would like – so there needs to be some work done there and
that’s what, as a team, we’ve been talking about recently. But there’s the constant
problem of trying to juggle the clients we’ve already got with the ones we know are
out there. It just comes down to money and staff time.’
‘I don’t think we’re catching people early enough and I think we’re in a catch 22
position because what I’d like to do is to go out and speak to colleges again and
(name removed) and those kind of organisations. But there seems little point in
doing that if we haven’t got the staff to deal with the clients when they come
through, because all you do is end up knocking people – you know – not offering
them a service and they end up in the usual system. Hopefully with more staff we
will be in a position to go out there and advertise ourselves a bit more and try to
encourage people to come through those agencies.’
Allocation and assessment process
There was considerable consistency, across the case study sites, in terms of
allocation and assessment processes. New referrals were discussed at weekly
meetings and where the referral was accepted by the team, it was allocated to a
Care Co-ordinator on the basis of geographical location, caseload, individual skills,
areas of expertise and service user needs.
Initial assessments tended to be undertaken by two people; one from the EIS and
one from the referring agency. The purpose of this approach was twofold: first, to
ensure a smooth transition between the services (or teams) and second, to guard
against a break in continuity should the service user not be incepted into the EIS.
‘It means that we’re not leaving anyone without support. It also means that we
move people fairly quickly. If it isn’t psychosis, teams then take people back. That’s
happened on several occasions when I’ve gone out and done joint assessments
with link workers in the team and it’s turned out that the person isn’t psychotic but
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has other problems. There’s nothing detrimental to the person, it means that
they’ve probably been assessed quicker that they would normally have been
assessed if they’d just gone to the community team and they still have access to
the community team.’
Professional duties
Within most of the teams, the role of Care Co-ordinator was primarily undertaken
by the psychiatric nurses or Social Workers, with psychiatrists and other medical
colleagues providing medical and other input as and when required. Occupational
Therapists and psychologists were considered as ‘valuable commodities’ providing a
different input within EISs. Psychologists, in particular, were seen as offering
planned and structured therapeutic intervention for service users. This made it
inappropriate for them to also work within the context of crisis resolution with
inevitable cancellation of sessions, creation of a waiting list and, ultimately, a less
responsive service.
An interesting tension was highlighted around the roles and responsibilities of the
psychiatrists in each of the EISs. Only five of the 14 teams had dedicated medical
input. The other services adopted an ad hoc system of requesting involvement from
local ‘patch based’ psychiatrists when medical cover when needed. This meant that
these EISs were largely run without direct psychiatrist/medical input or influence,
and that at times, psychiatrists were asked to provide advice and help in a context
outside of their core expertise. This often led to conflict in terms of the
predominantly biomedical ethos of psychiatrists and bio-psycho-social ethos of
EISs.
Consultant Psychiatrists were, however, viewed as having a significant role in
dealing with, what were described as, ‘complex cases’ and ‘giving support to team
members in terms of diagnosis’.
‘It would be different I suppose if we had people in the team that hadn’t got as
much experience as we’ve got, because may be then they would need more
support from psychiatrists. Whereas, we go out and assess people and we know
whether they are psychotic or not – that person may then come into the clinic and
see the doctor who will confirm that and they will start them on some medication.
And then we tend to do the rest. We would only bring them back to clinic if they
need it or there are other issues. So it’s only when you’ve got the more complex
issues – drug use, forensic issues, and because of the presentation, a complex
background, then you would be wanting more from a psychiatrist.’
There was also a strong sense from most teams that it was the approach of the
Consultant that was important rather than necessarily their medical expertise and
knowledge.
‘Some of them are more amenable to taking on board an holistic approach and
working in a multi-disciplinary team…In some way they want to hold the reins and
take control and come in from a very particular medical angle. This sort of devalues
other people’s contributions. They are necessary but they have to realise that a
client needs more than medication. I think the younger doctors are taking this on
board.’
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The increasing emphasis given to the role of nurse prescribing was seen as a
welcome development both in terms of the skills available within the teams and
quality and responsiveness offered to service users.
‘I think that the increased flexibility that nurse prescribing gives you is really
helpful. I think it would be really helpful to discuss medication with clients rather
than offering them out-patient appointments where basically they discuss their
medication. Clients aren’t always honest with doctors whereas in nursing you tend
to talk about it (medication) as part of the conversation. It’s not just the whole
focus and people tend to be more honest and I think there’s a lot of value in that in
terms of adherence to the care plan and continued engagement.’
The issue of the role of psychiatrists in EISs is explored in more depth in the SDO
funded EDEN Plus Project.
Co-morbidity
The most common co-morbidity across all of the case study sites and noted during
each period of data collection was substance misuse (drugs and/or alcohol). Links
were made with other agencies to help service users with these issues, and in some
EISs one or more members of the team had either previously had or developed
specialist substance misuse skills.
Anxiety and depression, which were often associated with the psychosis itself, were
also commonplace and managed within the team. Other co-morbidities mentioned
less commonly included eating disorders, learning disabilities and developmental
disorders such as Aspergers’s Syndrome. These were either managed within the
team or, for more complex issues, links were made with specialist agencies.
Drug and alcohol misuse
All EISs noted a high prevalence of substance misuse, particularly drugs classified
as Class A, B and C under the Misuse of Drugs Act (1971), particularly within the
younger age group of their service population. As a result, close working
relationships had been established with local drug agencies in each of the case
study sites. Such relationships ranged from formal co-working arrangements to a
member of the Substance Misuse Team attending weekly meetings on an ad hoc
basis when information or advice was needed. However, in the latter, this was
understood to be a pragmatic and hopefully, short term arrangement, since this
particular Drug Team was described as being ‘rather stretched at the moment’.
There was strong evidence to suggest that regular contact with substance misuse
agencies, either in response to an individual service user’s needs or as a result of
training sessions, had increased the confidence of EI team members working with
drug and alcohol issues. Moreover, there was a widespread recognition and
acknowledgement that service users actively chose to take drugs as a means of
self-medicating to control symptoms, as the following comments illustrate:
‘You get some cases where people are using substances to self-medicate, so you
might find out if that is the reason, then look for alternatives. We do get quite a lot
of people with possible drug induced psychosis as well as very often, it’s just
making sure that people are aware of the risks.’
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‘…We’ve had some clients that were self-medicating with amphetamines, using
cocaine or whatever and when we actually get their medication sorted out they say
that they don’t need the (illegal) drugs because it works.’
‘Drug and alcohol use, we find, is secondary to the underlying psychosis so we try
to certainly not be judgmental about it; we don’t lecture people. Education is
helpful, giving information about the detrimental effects of drugs and I think
understanding, asking the young person about their reasons for using substances
and what benefits they get. Then we’d probably use a sort of motivational
interviewing approach to drug and alcohol issues and offer help in terms of harm
reduction strategies. We work quite closely with the drug team and young person
drug counsellors.’
Anxiety and depression
Services generally expected service users to experience periods of anxiety and
depression as a result of their psychosis. This was dealt with within the team with
use of cognitive behavioural therapy (CBT), psychotherapy or other psychological
methods as well as medication where necessary. A small number of teams had
developed anxiety and depression packs for service users to encourage a ‘self-help’
approach.
Learning disabilities
Although the number of people with FEP and learning disabilities was relatively low,
the prevalence was across all the case study sites and had prompted the need for
joint working arrangements to be established with appropriate services. The two
following descriptions explain how these were implemented.
‘This (joint working) has improved over the last six months because we’ve had
someone from the (name removed) Project who’ve been here every week and also
somebody from the Learning Disability Service and they’re willing to work with us
and us with them.’
And:
‘…We also come across co-morbidity and learning disability and I think that is an
area that is far more difficult than it appears at first. I’ve tried to make some links
with Connexions workers around young 15, 16 year olds who are statemented, who
have had difficult times at school and are now showing odd behaviour coming out.
We’re trying to set out some plans about how we might deal with these. Other
people who have come to me as referrals, often have other issues – Aspergers …
people who are not sure either what’s developing, what’s evolving. If we are going
to work with these young people at an early stage, then we have to be prepared to
at least make contact with them and with other professional workers. It doesn’t
mean to say that we are going to bring them in and label them psychotic, but we
perhaps just need to be aware of them and involved in the development of the case
over a period of time.’
Access to psychological therapies
During the early stages in the research project, it was apparent that the majority of
EISs had access to specialist psychological interventions provided either by the
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psychologist based with the team or by the Psychology Department within the
Mental Health Trust. Likewise, both CBT and Behavioural Family Therapy (BFT)
were also considered, in principle, to be widely available. However, in practice, a
number of issues limited the availability and efficacy of the therapies. For example,
although psychologists were not expected to undertake the role of Care Coordinator because of their commitment to planned and structured interventions,
Community Psychiatric Nurses (CPNs) and Social Workers who were trained (to
various levels) in BFT and CBT were required to also undertake casework with
service users and therefore needed to balance their dual roles. This led to a degree
of frustration when caseload commitments and a consequent a lack of time
prevented them from offering psychological therapies as frequently as they wanted.
Whilst BFT training had been made available to CPNs and Social Workers on a
rolling programme, there were insufficient opportunities for joint working with
colleagues who had also attended the training. Some felt that they would lose
momentum and impetus and skills if the time lag between their training and the
opportunity to implement it was too lengthy.
Group therapy was generally available, but there were issues surrounding the
location of such activities particularly for people with FEP.
‘Groups for people with depression or anxiety and such like are run at the day
hospital in (name removed). The (name removed) offers groups for service users to
attend such as Hearing Voices and Dealing with Delusional Beliefs. Ideally we’d like
to have a resource centre for Early Intervention. The main problem with the day
hospital and (name removed) is that the chronically ill attend these groups and this
is not the best environment for young people to attend and they may find it offputting’.
Similarly, where the need to access a group took time to facilitate, there was
concern that service users would lose the motivation to participate.
‘We could refer there (psychology) but we often don’t, because just think you know,
people are going to be on the waiting list for six months, nine months you know,
and they need to be seen. Not now as in today but you know once they’ve made
their minds up about it, you need people to be seen quite quickly before they go off
the idea, or think ‘I don’t need it anymore.’
In addition to individual work, a number of different types of therapy groups
operated or were in the process of being planned.
‘Groups are tried to be developed all the time. We’ve been developing sort of social
confidence groups…and I want to build on these a bit more. There’s a great need
for young people to build up friends and relationships and that’s one thing they
usually identify as being quite important for them.’
By the end of the data collection, the most significant change noted in terms of
psychological therapies was an overall reduction in the type and level of service
offered across all the EISs. This was said to have resulted either from the departure
of psychologists or a general lack of time on the part of the care co-ordinators to
undertake pre-planned and structured interventions, or a combination of these.
‘I’ve had training in CBT, but at the moment I’m not offering it formally to people
from the Early Intervention Service, because I just don’t have time. I might use
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little bits of it in the course of seeing them otherwise, but not formally. We do offer
BFT although we’ve had quite a low uptake for that actually. … I think families like
to see somebody but I think they are a bit put off by the commitment required to
this formal programme of – you know the idea of weekly meetings for a number of
weeks – I think they just find it a bit daunting. Also I think they feel a bit
threatened that we will be assessing the family – well I suppose it does involve
some element of assessing the family and I think they worry that they will be
judged.’
Engagement
Service accessibility, team members’ perseverance and youth sensitivity were
considered by EISs to be the key that facilitated engagement. For some EISs,
accessibility was equated with being located in a convenient position within a town
or city centre, which invariably benefited from regular and reliable public transport.
For others, it was the notion of user-friendliness; being based in non-health service
premises and/or within close proximately to non-statutory organisations (both
mental health orientated and more those which were described as being more
generic).
Engagement was perceived by all EISs as ‘the most crucial aspect of an EIS.’ This
is reinforced by the high level of service engagement (90.5%) at 12 months found
across the EISs. Team members said that they used a variety of techniques, based
on their own knowledge and experience, to develop relationships with young
people. However, it was recognised that often, dogged determination was needed.
‘In my view engagement is one of the most crucial things that we do. I think we are
often working with young people who traditionally have been very difficult to
engage and continue to be difficult to engage which means that as a service we
have to rethink how we work with these young people. Engagement is something
that I think we continually strive for – for some young people it’s a continuous issue
– it isn’t that you’ve achieved it and there it is and that’s it – for some young
people it’s a continual process of engagement and people disengage and trying to
re-engage again, and we try to do this very actively, which means we have to work
out of the box in many ways.’
And:
‘…Engagement to me is about availability as much as anything, making myself
available. OK, if you’re going out to the person’s house, they don’t let me in, but
leave a note saying you’ve called, put your telephone number on, perhaps you can
speak to them on the phone initially, things like that. Perhaps you can get someone
they know to come along. OK they might reject you, but you keep going back,
really, not pestering, just showing that you are available, that you are genuinely
concerned. A person that you have a good rapport with and then the rapport
wanes, you stick with it through thick and thin really, consistency. When they don’t
want help that’s fine just let them know that you’re still there and then when
they’re ready to come back to you, they often do, really. Initially engagement to
me is about posing as little threat as possible.’
A significant number of team members felt that the willingness of service users to
engage was determined by what the EIS could offer. In this respect, it was
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suggested that rather than focusing on symptoms and illness, it was preferable to
consider the wider context within which young people found themselves.
‘… You look more at the practical aspects, you know, what can’t you do, ‘I want a
job’ and ‘I don’t see my friends any more’, so you work on that, stuff that matters.
I’m not saying the illness isn’t important, but that person doesn’t need to know all
the ins and outs if they are not asking for them.’
‘…Engagement for young people is often if you can be useful to them you know if
you’ve got a practical use, if you can help them with college, or help them with
benefits or help them with something.’
‘…If we can offer something that is going to add value to them – obviously it’s got
to be something practical, then they can see more of a reason for us being around
and visiting them and supporting them and I think often people, once they feel that
they are being listened to, that makes a big difference.
However, where it was appropriate to talk about medication, it was done in a way
that was felt to be less threatening:
‘It’s keeping them in control of their illness. … taking away a lot of the fear for
them, … there’s self-medicating through the use of drugs, that sort of stuff and it’s
all that sort of culture and it’s going in without this preconceived almost statutory
type of approach where ‘we know best and we are going to take you out of this
situation’. … It’s that control, it’s about empowerment, it’s trying to, within your
limits, to allow them to engage with us, to realise that we are not a service that
they need to be scared of. … We will be responsive; we will be there when they
need us. Sometimes that may mean that we need to back off a little bit, but just
make sure that we’ve got a safety sort of boundary, so should things start getting a
bit out of hand that we can be contacted and that we respond immediately.’
Irrespective of the methods used to engage with service users, there was a strong
sense that they had to be sensitive to the needs of young people and delivered in a
manner which was seen to be responsive. This meant that, on occasions, team
members had needed to adapt their practices:
‘…may be it’s a case of changing the way that you would ordinarily practice, that
when you go out you think ‘I’ve got this assessment to do’, whereas you may go
out and you might chat about hobbies to start with and although you might be
getting some information, you might not be getting all the information you want,
but that might take time, so you build up that trust, that rapport and then you are
able to perhaps proceed with your assessment in more depth, so it’s being creative,
thinking outside the box and may be not practising in the traditional way.’
‘Thinking outside the box’ was also a phrase used by a number of EISs in relation to
choosing suitable venues for meetings. In this respect, visiting a person in their
own home was not always viewed as the most appropriate meeting place and
invariably options including McDonald’s, the local park, youth centres, cafes and the
like, were seen as preferable.
The time taken to engage a service user was said to vary considerably and was
dependant on their needs and presenting difficulties. One person said:
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‘…it’s (engagement) like a piece of string, it will vary, … a lot of people the first time
you meet them will engage fairly well, certainly within the first couple of meetings.
OK sometimes it will take a little bit longer and again it will depend on how and
where they are. So if they are referred to us, if they have already hit hospital and
they are very poorly, then that might take a little longer because they are very
acutely psychotic.’
Another person suggested that early contact, particularly in terms of undertaking
the groundwork, was useful:
‘I used to pop in to see her (service user on an inpatient ward) and just literally say
hello and have a brief chat with her … she was … really not well at all and she
couldn’t tolerate me any more than about a five minute chat, … keeping in touch
and at the same time putting in a lot of work with her parents. So I did all the
carers stuff with them and gave them lots of information and met up with them and
went into ward rounds whenever I could, so by the time she did start to feel better,
she knew who I was…’
Service user needs and youth focus
All services recognised the importance of treating the service users as individuals
and consequently, the need to help them understand their own lived experience of
FEP. By taking an holistic approach, there was a recognition that EISs needed to go
beyond the presenting mental health problem by seeking and addressing wider
psychosocial needs.
These points are evidenced by the following comments, which, although lengthy,
provide a palpable sense of the feelings of different workers within different EISs.
The first three comments were made within the context of treatment plans and
reviews:
‘It’s an important part of what we do, but it isn’t going to really grab them as an
area of interest, so it’s what we add on to that in recognising that people may want
to be at college, want good housing, want to be able to develop a social network,
develop something they can do in the community, which is their own and separate
from their mental health at times.’
‘We don’t obviously go in and talk about their symptoms straight away. It might be
just getting them to warm up a bit. We try to help them out with practical stuff.
That is another good way of engaging people …I’ve learnt over the years about
things not to do (…) about everyone storming in and just doing nothing but
assessments and things like that you know, just taking a very gentle approach.’
‘With all young people, it’s about understanding what interests them. We don’t, or
at least I don’t think, we go in banging on about illness and medication because you
find that both the person and their family are in denial, in the early stages at leas.’
Further comments reflected the ways in which EISs should be open to
recommendations and suggestions from service users themselves in developing
their own care plan:
‘Hopefully (the clients) will be giving us the ideas…that is something that they can
bring to us as well and give ideas about what they want from the service. We don’t
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want to prescribe everything. I think that it should be a two-way service so they
can give us some feedback about how we can be working as well.’
‘It’s really about responding to the needs of young people. You know, if they feel
that they would benefit from some kind of support then we try and find a group
that will provide it.’
Working with service users and finding out what their needs are appeared to have
been a change in culture for a minority of team members. One team member
commented that working with service users and allowing them a say in their care
was working against traditional mental health approaches:
‘Coming from inpatient forensic background as well where I’ve been used to
drumming it into them about medication and the implications of what happens if
you don’t take your medication, that’s something that I have to take a step back
now and allow them to make their own decisions about their medication. I’ve been
seeing one (service user) since before Christmas, and they’re still not on
medication. Now the Consultant say he needs to go on meds. They tell him this and
he backs off and then it takes me even longer to engage him, because he thinks all
I’m going to do is enforce what the docs are doing. But luckily I think I’ve got
through to him now, that this is not what I’m about, I’m not going to talk about
medication when I go and see him, it’s purely about how he’s feeling and I won’t
make decisions about whether he wants to try medication or not. At the minute it
seems to be working.’
The holistic way of approaching engagement was summed up by one individual
team member, who talked about empowering service users:
‘I think that we try to respond to their (service user) needs so we’re looking at what
it is they want from us, what do they want for themselves. Trying to get them to
think about their mental health, think about how they can take responsibility for
their mental health. Sometimes it’s about helping them to work through what’s
actually happened to them, what things have caused them to become unwell and
what can they do in the future to help themselves. There’s a lot of listening, really
trying to understand what’s going on for them. Being patient really that’s kind of
like a big thing because we might want them to progress at a certain pace and their
pace might be a lot slower than what we would like for them. So it’s trying to
motivate them but trying to be patient with them at the same time. Trying to show
them that you know that there’s opportunities for them in different things and that
because they’ve become unwell that does not necessarily mean that there’s no
opportunities to do anything and that their life’s over. So I think that’s kind of like
the key message really in all of this and trying to help them to be positive about the
future. Looking at what their basic needs are in terms of finance, benefits, housing
and supporting them with that. Erm that’s the main thing really you know. In terms
of working with young people, it’s trying to be relaxed I suppose and be flexible
with them and you know, able to compromise, meeting them on their own terms.’
For a minority of services, the significance of a youth focus had led to the
employment of Youth and Community Workers who had limited experience of
working within formal mental health settings but significant expertise in working
with young people.
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While this initiative was limited to two case study sites, the feedback from their
colleagues within these teams was positive. In EISs where no similar posts had
been established, links developed with Youth Workers based in other organisations
were said to be extremely positive, particularly in terms of these services’
knowledge of allied agencies such as Connexions, schools, colleges, youth offending
teams and youth orientated activities. The final comment in this section describes
the way in which a Youth Worker had gone beyond the usual parameters associated
with mental health services:
‘So the things that (name removed) has been involved in include setting up a
sports group, and a social group that does things like bowling and watching videos,
eating pizzas, listening to music, and so on. These are things that are not
stereotypical services like going to a day centre and doing things that are just not
meaningful to young people.’
There was a strong sense that EISs needed to get away from ‘traditional
institutional mental health provision’ and work jointly with less stigmatising services
either by using their facilities or developing group work activities. For example, one
person suggested that mental health day services were not appropriate for an EIS
client group:
‘I think sometimes, things that are currently run like day services, might find that
the service users there may have been in services for quite a long time, and that
might be off-putting for a younger person who might feel like ‘Oh God, is that going
to be me in 20 or 30 years time?’ Things might not have a youth focus and so they
may not appeal.’
Another service described how they had linked with a local CMHT and local college,
the latter of which provided outdoor pursuit weekends where members of staff and
service users had equal status in terms of tasks they undertook. This was said to be
‘a great way of working on self-esteem and self-confidence issues for all
concerned.’
Furthermore, several EISs reported that instead of adopting the usual method of
contacting service users – by writing to them – new technology had offered
alternative means:
‘Certainly, my experience is that I have lots and lots of texts and telephone contact
from my clients. Because they all have my work mobile, they call me lots, which is
a mixed blessing but I think it’s good for engagement’.
Early on during the data collection, it was noted that a number of team members
from different EISs expressed concern about their respective knowledge and skills
in relation to working with individuals at the lower end of 14-16 years age range.
While in some instances this remained an issue that was being addressed through
staff training and development, for many, confidence in this area had improved.
‘I suppose it’s just becoming more easier. At the start of the service I was quite
alarmed really, by having to engage with 14-year old children or young people…I’ve
now assessed and engaged quite a few of them and it doesn’t seem such a big
problem anymore. And obviously we do sort of link up with CAMHSs more readily
now and get advice from say organisations like Connexions. We get a lot of help
from them. But it gets easier as you become more experienced.
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‘I’m still learning this. Because I’m an adult psychiatrist, I tend to approach them in
a similar way as I would a young adult, and so far, that seems to have worked
fairly well. They seem to prefer being treated like a young adult rather than a child.
I have to remind myself always that I’m dealing with someone who is only 16, and
they don’t have as much capability of looking after themselves.’
Although relationships with CAMHSs were said to have ‘matured’ during the last
twelve months of data collection, there remained some issues relating to their more
structured and formal working practices, which were described as being ‘a potential
source of conflict in terms of the aims and objectives of EI’.
‘It (CAMHS) is very structured. You have to attend appointments, you have to do
this and do that. There are no follow-ups, there is less social stuff, you know all the
stuff that we’re used to doing. That concerns me.’
Service location and accessibility
One of the key factors said to influence, and thus facilitate, the engagement
process was the extent to which the EIS was perceived as being accessible.
Accessibility in this context not only related to the hours of availability but whether
the service was based in ‘ordinary’, rather than NHS mental health,
accommodation. The following comment demonstrates this point:
‘We are specifically available because we aren’t based in an institutional building in
the middle of nowhere. We are in the town centre, easy to find and I think this is a
key thing. We can either meet people here or there is a shop around the corner
that the PCT runs as a Youth Information Shop and we can meet people there if
they prefer or meet them anywhere that they prefer. So we don’t insist that we
meet in a formal setting.’
Another service, based in a predominantly rural area highlighted the way in which
link workers provide drop-in sessions in schools or youth centres, in order to
maintain contact in the least stigmatising environment possible.
Core working hours of the services tended to be Monday to Friday, 9.00 am to 5.00
pm. Yet, all services offered flexibility outside of these hours to accommodate any
family work (BFT, for example) undertaken. Even though all services were prepared
to work flexibly to accommodate service users and their families, it was considered
important to make sure boundaries were also in place so service users knew when
the team members were not available.
‘We give people information, we give them leaflets and contact details and we
describe where we are, where the office is based, so that people can phone us or
call in. We also give out our mobile phone numbers but we make it clear that we
are not a twenty-four hour service so we can’t be contacted in the middle of the
night. I think that it is really important for people to know when we are and aren’t
available so they are not confused.’
It was noticeable that towards to the end of the data collection there had been an
increase in the number of evening appointments which, it was said, resulted from
significant improvements in the mental health of a number of service users which
enabled them to attend structured courses at local colleges, take up part-time
employment or return to work. Whilst the need for evening working was informally
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recognised, one EIS felt that core hours should be formally extended to more
appropriately meet the needs of its users:
‘To my mind, services are not user-friendly unless they are flexible and if we are
talking about getting people back into full-time education or work, then how can
they see us at 10 o’clock Monday to Friday. They need to be able to see us in the
evenings or weekends.’
One service had discussed extending its hours to 24 hours a day, seven days a
week but lack of PCT investment and a fear that a 24 hour service would encourage
service users to rely too heavily on the EIS rather than use their own resources and
support networks were strong disincentives.
Outside of the usual working hours, service users were encouraged to contact a
range of people if they needed immediate assistance. These included their GP, the
duty psychiatrist, the ward if they had recently received in-patient treatment, the
Crisis Team, Out of Hours Duty Social Work or any other agency listed in their care
plan. In instances where a Care Co-ordinator or other team member recognised a
deterioration in a person’s mental health that was likely to require some type of
intervention ‘out of hours’, then contingency plans were put in place. One person
described this process in their particular team:
‘What we do first is to try to work more assertively with a person. So for example,
we might increase the frequency of visits. We’d do some careful CBT relapse
prevention work, review medication, we’d look for stresses and strains that are out
there with the family or in the environment. If someone was slipping or there was
an element of risk that we felt was becoming too much, then we’d be looking for a
planned admission. It’s been quite rare that we’ve had anybody going onto the
wards in crisis, which, I think, shows our approach work well. We’ve got a caseload
of around thirty, some of whom have been very unwell.’
Case load and capacity
During the initial round of data collection, the consensus across the EISs was that
the capacity and, therefore, an acceptable caseload for each of the Care Coordinators, was 15 users. This is in line with the Policy Implementation Guidance.
However, allowances were made for newly qualified members of staff and for
approved Social Workers who had additional responsibilities resulting from the
Mental Health Act (1983).
One of the tensions experienced at this time by a number of teams was the need to
address the issue of demand for the service outstripping supply (or in this case,
capacity). There was a strong sense that, in principle, an increase in the number of
service users needed to be accompanied by a corresponding increase in staffing
levels. At best, where this did occur, there were substantial delays in budgets being
made available and members of staff being appointed. At worst, where no
additional resources were forthcoming, some teams were forced into a position of
discussing the viability and practicality of instituting waiting lists; a contradiction in
terms for an EIS. Yet implementing this was seen as both a temporary and
pragmatic response to transient over-capacity brought about by ‘a flood of
referrals’, the freezing of posts or long-term sickness. The following examples
demonstrate how these teams dealt with the situation.
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‘We’ve got a waiting list at the moment which defeats the objective of EI. We’re
trying to avoid it. I think we’ve only got two or three people and we’re maintaining
contact with the teams that are supporting them and we’re still screening people. If
you don’t screen people, they get lost. They might have been referred but if we
haven’t at least made an effort to go and look at their notes, get the details…well,
you know, we just don’t want them falling through the net.’
And:
‘Well, we had to have a waiting list earlier this year when we were shut to referrals
and we will have to do the same this year. What we did…was not to take any
referrals from secondary services on the basis that they would at least be able to
get some form of service. But we still continued to filter and signpost people and to
assess anyone that was from non-statutory services or self referrals who were not
in contact with anyone else.’
Whilst within the more established teams, the introduction of a waiting list was
construed as a pragmatic, albeit unwelcome, decision, in the emerging teams, it
was viewed as ‘completely unacceptable’. Not wishing to be faced with such a
dilemma, several teams had taken pre-emptive action by discharging clients when
it was clinically ‘safe’ to do so.
‘We have a young girl at the moment. For her, it’s possibly a brief and transient
episode, which had a rapid onset to an otherwise highly functioning individual. She
will probably be poorly for a few months and then hopefully can pick her life up
again within a relatively short period of time. Our goal is to ensure that happens
relatively quickly.’
And, in relation to people opting to distance or discharge themselves from services:
‘I think that you can’t have a rigid system of cutting people off at the ‘discharge
point’, you’ve got to be flexible because of the age group we’re dealing with and the
unpredictability of what’s going on for them. We have to be open and accessible. I
think that you need pathways that actually let people into services, that are friendly
and sensitive and that’s what we try to do.’
Implicit in the above examples was that the PIG advice that EISs should remain in
touch on a continuous basis with service users was not always appropriate. If there
was a need for a ‘watching brief’ during both the early stages and the ‘recovery’
period, then it was considered prudent to remove that person from the caseload
whilst ensuring they had immediate access should any crisis occur or re-occur.
Where it was more appropriate for a service user to be referred to a CMHT rather
than be incepted by the EIS or indeed where, following a period of intensive work
undertaken by the EIS the person needed to be discharged to a CMHT, some
difficulties were reported. It was suggested that part of the problem in terms of
capacity issues for EISs was compounded by a lack of capacity within the adjoining
teams who were reluctant to accept a new referral unless they were in a position to
allocate a key worker.
During the final round of data collection, each of the EISs variously noted that they
were ‘approaching capacity’, ‘at capacity’ or were ‘exceeding capacity’. Whilst at
differing times during the previous six months, over half the teams had initiated a
waiting list, only two of these remained at this point in time.
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‘I think we’ve got a slight waiting list. I think it’s going down with (name removed)
starting. I think it’s just the fact that (name removed) has just started and we
didn’t want to overload them. Actually I think there is one person on the waiting list
and we’ve got four or five assessments but a couple of those look as if they’re not
coming our way because we don’t think that they are appropriate.’
As a means of dealing with a general lack of time, the following approach appeared
to be followed by most of the EISs:
‘…We prioritise the assessments of people that we take on. We tend to take on
people who haven’t got any community support. If someone was in an in-patient
unit we wouldn’t prioritise them because they’ve already got some support, possibly
not the support that they think they need or want, but at least it’s something.’
Working with a full caseload was said to have arisen due to vacancies (staff moving
on to other posts), resource issues (withdrawal of committed expenditure or
reduced budgets) or an influx of unexpected referrals. These, in particular, tended
now to be seen as enquiries rather than referrals but nonetheless still took
considerable time to deal with.
‘I’ve stopped calling them referrals and started to call them enquiries because it is
almost an enquiry into – you know people want either us to see people but some
people just want some information – they want to know what we can do and if it’s
appropriate. All of them result in some work because we always try and gather
information and also it’s useful to gather from different sources, … just raise the
issue that people are concerned and to see what their concerns, if there are
concerns from other areas and then if you start to get three or four different people
who are saying they are concerned in different ways, … it becomes more obvious
that you need to do something.’
None of the EISs had robust plans in place at any time during the data collection for
dealing with constant over-capacity, rather, it was managed on a ‘day to day basis’.
Exit strategies
The majority of EISs had no formal, written exit strategy, but there was a strong
sense that once a person’s mental health had ‘stabilised’, discussions began to
focus on interventions needed to assist recovery and ultimately on plans for
discharge. Discharge was understood by the EISs as either referring a person on to
other mental health services (usually CMHTs), back to their GP or complete
discharge from health services as the following comment demonstrates:
‘We aim to start looking at discharge between six months to year prior to the
person leaving the service. Sometimes it’s longer, it just depends on the needs of
the person. Some people will naturally float out at the end of the three years
because they’ve got a job and they’re doing their own thing. For more complex
cases, it can be difficult and calls for careful planning.’
However, a number of instances were cited where people had been completely
discharged but unexpected life events had caused a relapse.
‘…The person we discharged early in December. She – her partner phoned us at the
beginning of April … there were some stressful events that triggered off another
episode but – so even though we had discharged her in December, when she
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phoned in April, we re-registered her straight away and she’s now back on the
books. So it’s reasonable – even if we discharge someone, to keep direct access for
twelve months afterwards.’
Given that EISs acknowledged that other services within the mental health domain
faced similar capacity issues, referring onto CMHTs, for example, was described as
‘never easy’:
‘There have been some difficulties, not quite as bad as you hear from other teams
but they are real enough for us. I think the CMHTs are very stretched, so taking on
new people is difficult for them. I think the worst thing for the client is the level of
input they will have after they leave us. There is no way that CMHTs can offer the
same level of service as we do. Also if there is a relapse they don’t have the
capacity to respond as quickly as us – like the same day or the one after.’
The consensus of opinion from EISs suggested that while service users could stay
with the team for a period of up to three years, this was not always necessary or
desirable.
‘…if we are doing our job right and get in early enough, may be more people will
recover earlier. They won’t have got used to being in mental health services or they
won’t have huge involvement two years, three years down the line. There will be
some people who I can see will probably need that two, three years down the line
and that’s OK too.’
‘…although we’ve got this three year window, it’s not automatic that people will
stay with us for three years, that’s almost like ‘up to three years’ as opposed to
‘you will be with us for three years’. So again it gives the client that optimism …
‘Once you have recovered and everything is going ok, we will back off from you, we
don’t want to impose ourselves on your life if we are not needed’. So as I say pretty
much from the onset, how people are going to get out of our service, we don’t want
to lock people in that don’t need to be.’
Recruitment and staff training and development
Recruitment
Throughout the research project, it was apparent that EISs experienced a number
of challenges in relation to staff recruitment. These challenges may be loosely
grouped into four areas – the impact on the local mental health economy,
recruitment difficulties, the use of flexibility in appointing staff from different
disciplinary backgrounds and the implications of Agenda for Change policy.
First, while the movement of staff within local mental health services (in-patient
units, CMHTs, CAMHSs and so on) was expected and occurred, it was acknowledged
by EI leads that appointing staff from these areas would inevitably have an impact
on their ability to deliver services within the local health economy. It was
anticipated that this situation would be exacerbated as new teams developed and,
what was described as ‘mass recruitment’, occurred.
Second, some urban or inner-city based EISs said that they felt the geographical
location of the service deterred potential candidates. Whether this is indeed the
case across all mental health services or specific to EISs remained subject to
conjecture since data in relation to this was not collected.
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Third, the recruitment of OTs and Social Workers remained a problem. There was a
strong sense, from the perspectives of nursing staff based in teams that Social
Workers preferred to work within a mainly social services, rather than a healthdominated environment. The fact that relatively low numbers of Social Workers
were employed in EISs compared to nurses may support this. However, on the
other hand, most teams only had one Social Worker post and it was assumed that
the post holder would undertake assessments and other duties contained within the
Mental Health Act (1983). Clearly not all Social Workers wish to work within this
context.
Fourth, some EISs noted difficulties in appointing Grade G nurses. Indeed, one site
noted that they had received ‘literally hundreds of applications for the post of
Assistant Psychologist’ while a Grade G vacancy had only attracted three responses.
It was suggested that ‘Agenda for Change’ had an impact on the willingness of staff
to move between posts while the ‘banding process’ was taking place.
‘… There are not as many people out there as we need. I think the Agenda for
Change that we’re going through is causing uncertainty. People are either still
waiting to see if they fit, … or if they have been banded and graded and they’re
happy with it and are scared to move in case they go somewhere that’s not as
secure.’
Furthermore, it was suggested that despite initial interest shown in posts, some
nurses were put off particularly if they were currently employed as a Grade E
because of the skills required to fulfil Grade G roles and responsibilities. A number
of EI Leads said that they would rather appoint an existing Grade E nurse to a
Grade F post and then, with a limited case load, good support and supervision,
would encourage their development towards the skills required for a Grade G post.
Moreover, it was suggested that it was more important to find people with the right
qualities and skills who may be at a lower grade rather than to employ a Grade G
who did not share the team’s ethos.
A small number of EISs were addressing recruitment difficulties through a more
creative and flexible approach. In particular, they were being proactive in recruiting
‘unqualified’ staff (psychology graduates and individuals from the voluntary sector,
for example) as Assistant Care Co-ordinators.
‘…I think we need more of a type of support worker …personnel akin to or those on
the Graduate Workers programme who are desperately looking for experience. The
main thing for any worker is that they have the right attitude. With support workers
you can look towards more mature people that have got the right attitude and
could work well with young people. It’s about taking the opportunity really.’
Recruitment of ‘unqualified’ staff was generally seen as a positive development by
teams:
‘Why we want to bring staff in from the voluntary sector is because they have got a
huge range of skills. What we’ve learned from (name removed) is that her
experiences of knowing how to link into the local community has been hugely
beneficial. She’s got a different way of working, a different mindset that’s out of the
NHS as it were. I think it will bring in other strengths that we hadn’t even thought
of.’
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Staff training and development
There was considerable evidence to suggest that continual professional
development is seen as important. In well-established teams, individual training
and developmental issues were routinely discussed during formal appraisals while
identification of skills and knowledge gaps at a team level were discussed in team
meetings. Addressing training needs within these teams was not particularly
problematic, however limited resources and capacity issues made releasing staff for
long-term commitments such as Masters Degrees, more difficult.
In emerging teams, where recently appointed members of staff had limited
knowledge of EISs, structured induction training was seen as ‘absolutely necessary’.
‘For two weeks, they wouldn’t be doing any clinical work as such, they would be
meeting other team members, discussing roles and visiting resources, the ones that
we use, perhaps spending a day with Home Treatment just to get the gist of it.
They’d also be reading operational policies and protocols and that sort of thing.’
Each of the EISs took the opportunity to invite ‘speakers’ or colleagues from
different parts of the mental health service to give a presentation on their particular
area of work. These opportunities were seen as ‘taster sessions’ and, where queries
could not be addressed or there was insufficient time for a structured discussion
relating to a specific issue, a longer session was planned for a future date. This was
particularly evident in cases of child protection and substance misuse.
Apart from statutory in–house training (including risk assessment, health and
safety and so on), some EIS team members attended short courses facilitated by
the training departments based either in the Trust or local social services
departments. These tended to focus on subjects such as ‘an introduction to mental
health’, ‘multi-disciplinary working’ and ‘relapse prevention.’
Where individuals had been able to take advantage of opportunities to attend
conferences or external courses, there was an expectation that their acquired
knowledge and skills would be shared with the rest of the team.
‘I’ve just completed an MSc …so information that I’ve got I’ve handed down to the
team. This helps to build up knowledge for everybody.’
This type of approach was considered to be a valuable contribution to practice
based learning for less experienced members of staff.
‘Everyday we learn something new, either from colleagues in the team or through
contact with other agencies who we work with. It’s good because we can build up a
network of people with skills that perhaps at the moment we don’t have.’
Monitoring and evaluation
Each of the EISs had undertaken some form of monitoring and evaluation primarily
relating to the level and extent of referral activity, care pathways, medication
compliance and the use of the Mental Health Act (1983). Information relating to the
extent to which targets set by either the PCT or Trust had been met was provided
on a quarterly basis. The subsequent findings or results from this type of work was
said to be reported to either the local Steering Group or to the Local Development
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Planning Group or both. One example of the content of a routine audit is outlined
below:
‘We have three-monthly audits and we’re just coming up for our big year audit and
we look at things within our own team such as, how fast we answer our referrals,
how quickly do they get discussed, how quickly do they get seen. In our year audit,
we’re going to look at things like bed days, levels of engagement, quality of life and
those kind of more general measures, which overall, hopefully look at the impact
that the service has had and consumer satisfaction.’
Four EISs mentioned that they were members of FERN (First Episode Research
Network) although the value of this was questioned in a number of instances. For
example, one person commenting on the volume of questionnaires involved in
FERN said:
‘I think that there’s a lot of pitfalls for service users. Tick boxes and reading
questionnaires is OK but they don’t engage people or get the relationship going.
They are a very difficult group to engage with and we have done a really good job,
but I’m not sure that pushing questionnaires at them, particularly in the first six
weeks, is the best way to go. We are here to provide a clinical service to people, we
are not here just to be audited.’
While it was acknowledged by virtually all the teams that the reduction of DUP was
an integral part of the overall aims and objectives of EISs nationally, regionally and
locally, it tended to be given a low priority. Indeed for the majority, the formal
measuring and reduction of DUP had been ‘sidelined’ because of capacity and
ultimately resource implications.
‘We’ve acknowledged the fact that we aren’t going to have any impact of DUP
because we can’t go and do health promotion and that sort of stuff which is what
you need to do if you want to reduce DUP. So I guess we’ve changed our focus to
being a bit more realistic in terms of what we can and can’t do with the money
we’ve got.’
Where DUP was measured it was through the use of the PANSS Scale (Positive and
Negative Symptom Scale) although this was not thought to be a particularly
accurate tool by the majority of teams.
‘It’s not an accurate measure and I don’t know if it’s a particularly helpful measure
and I wonder if in the years to come we would be able to challenge whether DUP is
really that good a predictor of outcome and may be it’s the duration of illness that
we should be looking at. You’ve got say, a bright young person starts to fail their O’
levels and have negative symptoms that don’t really come out in the PANSS scale
DUP, but surely if we get those people early and help keep them engaged then we
could do some work around those.’
However, there was a strong sense that:
‘PANSS was better than nothing and if we had more time to devote to developing
measures then that would be great.’
Internal monitoring or evaluation was said to take place on an informal basis during
team meetings or through a more structured approach during ‘away days’ or ‘bimonthly team days’. Team members used these to discuss the extent to which their
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actual service delivery complied with their operational policy and overarching
philosophy or whether working practices needed to be adapted.
Regular case note audits were also undertaken primarily for three reasons. First,
ensuring that case notes are regularly updated is part of Clinical Governance
requirements. Second, and allied to the first point, in some Trusts, the presence of
comprehensive case notes (including details relating to face to face contact and
type and level of intervention) is a contributory factor in the star rating process’.
This is the process by which Trusts are judged in terms of meeting national quality
standards and where deemed ‘successful’ are awarded additional funds. Third, it
provided an opportunity to ensure that action plans agreed between the Care Coordinator and the service user and indeed the needs of carers (through Carers
Assessments) were being addressed.
Service user and carer involvement
Service user and carer involvement in strategic and operational decision-making
There was little evidence to suggest that either service users or carers were
involved in a strategic level decision-making capacity within the development of
EISs. Where individuals had had an input, it was during the initial developmental
stages and primarily on an ad hoc basis. Moreover, it was suggested that where
service users and carers had been involved, their lived experience tended to be in
relation to other aspects of mental health service development and delivery rather
than in early intervention.
Only one EIS demonstrated a clear commitment to user involvement, not just in
respect of the EIS but also within mental health services generally. Here, the PCT
funded a Service Development Co-ordinator, an ex-service user, who managed a
formal and established network of service users. This individual had administrative
support and a budget, which in part, funded service user involvement at all levels
of staff recruitment and service development:
‘If you’re recruiting staff right up to Director level, there will always be two service
users on the panel. So you ring up (name withheld) and say ‘can you find me two
users to a such and such interview and I would prefer them not to be living in the
patch or I would prefer then to be living in the patch or whatever’, then he’ll send a
note around to see who’s interested. If he gets too many volunteers then he meets
with them and they make a decision about who’s best placed to do the work. It’s all
quite democratic really. And it seems to be quite sophisticated.’
‘Every single major group or policy committee has got two service users. There are
two on the Divisional Management Team, two on the Mental Health Act Committee,
everything has got service users on them. Nothing is done without them. Even the
(Director of Mental Health’s) weekly meeting has got them. In fact three attend
that.’
The majority of EISs did not share such an inclusive approach. For example, a small
number of EISs noted that it was neither practical nor feasible to engage with
service users in a strategic decision-making capacity. This was evidenced by the
following comments from different EISs:
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‘I find it sometimes difficult in a meeting, thinking this is a different language here.
So you know for service users, who may not be familiar with the system, it’ll be
more difficult.’
‘…What stands out for me is that we have only been set up for about a year and we
are working with a lot of people who are quite early on in their illness. I wonder if
they have the confidence to go into a committee meeting for example. I suspect
that on a one-to-one basis it wouldn’t be a problem for them but I don’t think they
would like to be dragged into that sort of forum at the moment.’
‘It’s difficult to think about how you engage people meaningfully where they are
trying to represent a group when they are actually going through the experiences
themselves.’
The most common ways of eliciting the thoughts and experiences of service users
in terms of service developments was through either stimulating discussions in user
groups (although these may not be exclusively EI focused), audits and local
evaluations of EISs or by encouraging participation on interview panels during staff
recruitment processes.
‘At the moment there’s quite a big user forum …and we’re trying to get the lady, I
think she’s the Voluntary Co-ordinator, we’re trying to get her involved in setting up
groups in order to get service users involved. I suppose it’s about how they want us
to work and what we’re doing for them and to try to get them involved in the day
to day running of the service.’
‘Prior to us getting off the ground, we did a very extensive bit of research, which
actually looked at what service users and carers said they actually wanted and what
they needed and we tried very hard to design the service around the needs of users
and carers. So we took those comments on board, we tried to respond accordingly.
By and large I think we’ve done a reasonable job at that but, you know, we’ll carry
on being receptive and responsive to feedback.’
‘There’s more of a push at getting users on interview panels for instance…and that’s
building up a pace. I believe really that it’s something we’ve been aware of over the
past few months. Getting them in on the process from the beginning, not just on
the interview panels, but on the selection, short-listing. It’s an initiative that has
come down from above, so that’s why people are more aware of it.’
Individual care plans and carers assessments
There was an apparent consensus across the EISs that in terms of individual care
plans and indeed crisis plans, both service user and, where appropriate, carer
involvement was seen as an essential part of the care pathway. However, the
extent to which carers were involved depended entirely on the wishes of the service
user.
‘Our approach is client-centred and needs-led so it’s actually up to the service user
what they want and who they want to be involved. We always try and listen to the
client, to get to know what it is they want.’
The process developed by the teams in terms of assessing the needs of service
users was said to be flexible enough to enable adaptations to be made as the
individual recovered. In this respect, additional resources and community-based
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facilities tended to be identified on an ‘as and when basis’ and often included selfhelp groups or organisations that the service users had themselves identified.
‘We actively encourage them to use anything that they feel will be helpful to them.
So we encourage them to go out and find out about things and because they’ve
done it they seem to be more motivated than if we had made the suggestion in the
first place. For instance, they might find out information about a resource centre
that we wouldn’t necessarily use, but if they’re willing to go and they like it, well it’s
up to them really.’
A small number of EISs had, or were in the process of delivering structured psychoeducation sessions to carers to enable them to continue to provide support for
service users.
‘We’ve got the first few sessions planned and then we’re going to just kind of give
them a ‘pick and mix’ list to choose from for the remaining sessions. But there will
be a lot of emphasis on them supporting each other and using other groups to role
play, problem solve and hopefully everyone will chip in. Hopefully the last one we’re
going to do something nice like go out for a meal…and giving them a lot of
literature. I’m putting together some packs which we are going to pilot with this
group and get them to evaluate it.’
On an individual basis, carers’ needs were said to be formally assessed and
addressed by the Carers Assessment Team based in the Social Services
Departments. Where these teams were operational, they were deemed as making a
valuable contribution.
‘Fortunately, we have an excellent Carers Team here. It’s a major plus for (locality
name removed) and they do all the carers assessments…They are only a small
team but they are very good.’
Although the involvement of carers within the terms of the service user’s care plan
was broadly welcomed, it was only encouraged when express agreement had been
given by the service user.
‘In this area, it seems that families are very close. They all seem to live within the
same area. So that in some ways, is a positive thing because they are very
supportive of the young person.’
However, such agreement was not always given:
‘We do have one service user who won’t allow us to go to his house. His family
doesn’t know he’s been ill. When he was on home treatment he attended here, and
we’ve not been able to access his family and I’m not really happy about it. Well I’m
sure they’ve got an inkling that he’s been poorly but he won’t let us tell them and
that’s his right.’
Use of self-help groups
There were three clear interpretations by team members as to what constituted a
self-help group. First, there were mental health groups ran by statutory mental
health groups and usually facilitated by Day Centre Staff. Generally, these were not
deemed to be appropriate for the needs of relatively younger people with FEP since
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their regular attendees experienced long-term and enduring mental health
problems:
‘…If it’s right at the beginning of their illness, you have to be careful what you
encourage them to become part of because of the potential stereotypes that people
might see there or any sort of negative images and the language that some of the
groups use like severe mental health…and we feel that this isn’t appropriate for our
service users.’
For some EISs this meant that they had to explain diplomatically why they would
not be referring their service users to them:
‘… Some of the local services had an expectation that we would be using them,
particularly day services and we were, in the beginning we were having to be very
polite and say ‘that’s very kind of you, no offence, but we would prefer not to use
you’.’
Second, was the interpretation that self-help groups could be part of the service
offered by EISs. Invariably the responsibility for developing such groups tended to
fall to Youth Workers or those with more experience of facilitating related activities.
However, while they remained within the remit of the EISs, the content of the
‘sessions’ tended to be guided by the ideas and needs of the service users rather
than team members:
‘… We didn’t want to run a group which was with professionals saying ‘we know
what you want and this is what we are going to cover’, because we don’t.’
And, as a result,
‘…We got someone from the unemployment support service to come in. We looked
at writing application forms, we did short listing, so they understood about short
listing. There were dummy applications and the service users would short-list those
applications against a person’s specifications, job descriptions. So the idea was that
they were involved in the process instead of us saying ‘this is an application form,
this is what you need to put in’. So they could get an idea of what was involved…’
The third interpretation was based upon any community activity or organised
programme of events, which had nothing to do with mental health ‘in any shape of
form’.
‘…We discuss what’s helpful – it might not be anything to do with psychosis – with
one fellow we have been exploring tai chi and karate and those sorts of things so I
think we’ve got to be a bit more flexible… if that’s seen as a negative for the team –
we are not referring to or using self help, then I think we need to re-think what
Early Intervention is about…’
Another service recognised that it was important for some people to seek support
through their religious beliefs:
‘A lot of people I look after are Muslim and go to a spiritual leader or a mosque for
help.’
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Considerable emphasis was given to the notions of stigma, stereotyping and
prejudice. From one perspective, it was suggested that EISs fulfilled an important
role in minimising the impact of these factors on service users by steering them
away from mainstream mental health services and into organisations that were
described as being more generic and community based.
‘I think because these organisations, the ones that are geared up to deal with
young people, because they work with young people who have got a lot of social
and behavioural problems anyway, our client group isn’t particularly different from
them, … we’ve been pleasantly surprised as to how open and, particularly with
employment and training people, we’ve had no problem at all.’
Another view highlighted the stereotyping of mental health services from the users’
perspective. Here, it was suggested that service users held preconceived ideas
relating to mental health problems and their treatment, which, more often than
not, had been fuelled by inappropriate reporting through different media outlets.
This was said to be particularly evident where terms such as ‘schizophrenia’ and
‘psychosis’ were used leaving service users believing that ultimately they would
become ‘knife-wielding lunatics’ which only added to their distress. Dealing which
such feelings and concerns was said to be an integral part of the work undertaken
with the service user as part of the recovery strategy.
‘…a lot of people don’t like the diagnosis Schizophrenia understandably, a lot of
people associate the word ‘Psychosis’ with Psychopath and other inappropriate
things, which obviously is quite worrying for them. So I guess what we do generally
is just educate and talk about the fact that it is quite common, that there’s a lot of
people who have experienced the same things that they are experiencing…’
A third perspective involved raising the awareness of this and educating people
within a service users’ wider network. One aspect of this was using psychoeducational material as a means of addressing discriminatory behaviour by those in
Primary Care, educational establishments and workplaces. Three EISs noted that
they had hosted an ‘On The Edge’ theatre production, which looked specifically at
the challenges faced by people experiencing FEP.
‘We went to a school and we did the ‘On the Edge’ play – we brought that to the
school to reduce stigma in psychosis and I’ve been to both – the feedback has
helped and they all realise that if someone is suffering with psychosis it doesn’t
mean that they are a mad axe man or anything like that – which a lot of them did
think was true. And anybody suffering with mental health – the ‘weird’ people.’
Three different EISs noted that they had been invited to workplaces to address
particular issues, as the following comments demonstrate:
‘… I’m supporting someone who’s getting bullied at work because someone has
picked up that they (the service user) were in hospital and has become aware
through whatever, that they’ve (the service user) got a mental health problem. The
manager of the place has been getting hold of us saying ‘how we can work through
this, it’s a valued member of staff, our service user, who I think is getting bullied …
I don’t want to loose him, but how do I manage it?’ That can be part of what we
do.’
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‘…A man at the older end of the spectrum has been out of work…got a job but then
has been off sick for ten months now. He’s had hospital admissions through that
time and is very unwell. There were signs that his employer was looking to retire
him on long- term sick so I’ve become involved with the occupational health
department. I’ve referred him into ‘work step’ because I don’t know all the
employment legislation to prevent discrimination taking place. He’s starting back to
work on a graded return at two and a half days a week. This will be closely
monitored by ‘workstep’ staff in case his employer tends to discriminate against
him.’
‘…I am aware that some members of the team have been working with employers
to try and overcome some of these obstacles – people who were actually employed
and then became ill – and then we’ve done some work with employers to try and
break that down a bit. We do a lot of work in reducing the stigma of psychosis, but
that’s more for the general public and other agencies rather than specifically with
cases really.’
3.1.4 Service user experience
This section focuses on the experiences of users and carers both in relation to FEP
and also the role of the EIS and the impact these have had on their lives.
A total of 32 interviews were undertaken with service users from 11 of the active
EIS during autumn 2005 and spring 2006. Of these, twelve were female, twenty
were male and their ages ranged from 15 to 34 years. Interviewees described their
ethnicity in the following ways (see Figure 5 below).
Figure 5. Breakdown of service users interviewed by ethnicity
Ethnicity
Frequency
White British
20
British
1
Pakistani
4
Pakistani Muslim
1
Mixed
1
Indian
1
Black Caribbean
1
Black
Caribbean/British
1
Mixed (other)
1
Declined to answer
1
Service users were therefore broadly representative of the wider group of 479
service users in terms of gender, age and ethnicity. Most service users lived at
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home with their parents while 10 lived outside the family either independently, in
supported accommodation (n=2) or in university accommodation (n=1). Few
service users could identify ‘triggers’ that had caused them to become unwell. Of
those who did, these included job loss, relationship breakdown, bereavement, exam
pressure, bullying at school and stress at work. The majority of users disclosed that
they had been drinking heavily or were regular users of illicit drugs or both, prior to
the onset of their psychosis.
Referral pathways and initial response
Nearly half of the users (n=14) were referred to the EIS following a formal
admission to hospital under the Mental Health Act (1983). For the remainder,
pathways varied from referrals made by Primary Care, the Probation Service, drug
and alcohol agencies, individuals themselves or their carers (family members or
partners). Two service users considered that they had experienced a substantial
delay between feeling unwell and being referred to the EIS. One of these related to
a person recently discharged from custody and the other, a young student who had
experienced bullying at school. Until the impact of the latter manifested as violence
towards his father and brother, his family members assumed that his behaviour
was ‘normal for a teenager’.
The majority of service users felt anxious at the prospect of being involved with a
mental health service although this tended to be short-lived. Examples of their
experiences and initial perceptions of individuals, included:
‘I was quite impressed. I went to (name removed) to see Dr (name removed) …
and she chatted with me about my illness and prescribed Risperidone, then I met
(name removed). On my next visit which was three days after that, he became my
key worker and he’s visited me ever since.’
‘Really nice people really, they were good, professional, and their approach was
very nice. They took me out to places, parks and talking about my health. One of
the nurses was affected as well, she had psychosis before. … Yes (name removed)
she was suffering from psychosis and she knew what it was like.’
‘When I first saw them I thought it was great because they could help me, and talk
to me, and help me get through things and that…When I was 17, when I had
depression I fought it, I was embarrassed and I didn’t get any help since last year.’
‘Well, it helped me. I thought it was like encouraging for someone to be there to
like you know, if I need someone, there’ll be someone there for me, so it’s
encouraging.’
Some of the users reported that they were unsure of what to expect and
consequently were a little ‘suspicious’ to begin with.
‘I was a bit worried, because I didn’t know what was happening but then they told
me they were there for support and I felt better and they told me about the
psychosis and stuff.’
‘I did feel a bit bewildered; I didn’t really know why these people were coming
round. But they did explain to me, I did sort of understand a bit more.’
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Often service users who had been inpatients, experienced the greatest fears which
were said to have been generated by less than desirable treatment within the
hospital environment. One service user felt that he was not listened to in hospital:
‘I didn’t know whom I was going to meet; I thought they was going to think that I
was some sort of mad man. That’s partly because I thought they were taking no
notice of what I was saying and thinking whatever they were thinking and making
decisions without me. … Sometimes it made me really angry and I was thinking ‘I
know what I am saying and doing. They don’t listen to me’. I was developing this
sensitive hearing and wouldn’t listen to what I was saying and not dealing with my
situation properly.’
Another felt unhappy in respect of a lack of continuity with the medical staff:
‘Well I weren’t too happy because what I found is the doctors keep leaving and we
keep getting new ones, so you have to start from the beginning. I actually did a
letter of complaint and they wrote saying they were looking into it.’
Experience of the EIS
All service users reported that involvement with the respective EISs had been
positive. They spoke of help with medication, relapse prevention, the provision of
good support and consequently, strong relationships with their key workers, help
with motivation in order to facilitate a return to education and employment, and
support to re-establish self-esteem and self-confidence. The following comments
provide evidence for this:
‘They done everything they can and the medication gives me the best quality of life
that I have had and almost normal quality of life. But I still get voices they haven’t
stopped completely. I still suffer from voices. The other things that I have done
have helped me to grow confidence and to manage and cope with the voices and
visions.’
‘It has helped me to understand my illness, to develop an action plan, to highlight
any problems or issues I’ve had to prevent a relapse.’
‘Well, we did the early warning signs course, which was very good. We also did the
voices group which was helpful because it helped raise my awareness of the
psychosis and ways of dealing with it and strategies.’
‘I guess it’s like a safety net. We did work about early warning signs so you can
spot little characters of your behaviour and then you can get in contact with (EIS)
and many come and see me. If it wasn’t normal behaviour then (EIS) would be the
only people who would recognise if you were unwell, because the person that’s
unwell, you can’t realise, it doesn’t work like that.’
‘Everything I have asked about I have found out about. So it’s been good.’
‘Nothing but praise for the service…Basically, it’s a brilliant service. I couldn’t ask
for anything more really. The advantages were that I got my help when I needed,
the medication they provided was brilliant. I got all the advice I needed, like the
relapse plan, all the different cognitive behavioural therapy sessions, changing the
way I thought about things, it was all really, really good.’
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‘I think just knowing that they were there and that they had helped other people
and can support you and they’re effective and can help people get over the illness
and medication and stuff.’
‘First of all I saw them as primarily just giving me kind of medical help if you like. I
didn’t see them as kind of offering just like a supportive relationship as far
as…more of a social relationship. I think I have a social relationship and it’s just a
chat with her and talk about…my experiences of the week and problems I have
encountered and any anxieties I have had. Just having someone there to just ask
questions whether it is being discriminated against when I go for jobs or how I
should cope with certain anxieties. It isn’t just…we will see you next week and see
if it is working. They offer a lot more support than that.’
Furthermore, all service users reported that they were given options in relation to
where to meet with the key worker and a considerable degree of flexibility in terms
of what activities (both structured and unstructured) were available.
‘(name removed) takes me to McDonalds sometimes, and (name removed), we
went for a walk with (name removed)’s dog.’
‘Getting me out of the house … bowling, talking, Pizza Hut and snooker … Not
things I like doing, I done it because I got my mind off things.’
‘They helped me towards employment, they helped me towards getting out and
about and getting more active. … I used to go to martial arts club, it was very
difficult for me to continue. Just exercising is difficult.’
‘What was brilliant was I didn’t have to go into hospital. My mum rang the EIS and
I got seen straight away and a psychiatric nurse came out to see me and she was
really, really good. She put me at ease, made me feel calm and reassured that
everything was going to be alright and she just asked me lots of questions and then
told me a lot about the service as well and just really helped me work through
everything. And they were really good because I started going to the gym with
them, getting out of the house, because at one point, I just, at the start, I wouldn’t
get out of bed. I’d just be in bed all day long. I was nervous about everybody and
everything, so I wouldn’t go out of my house. I just stayed in. I was like a hermit
for about three to four months and then they started taking me bowling, taking me
to the gym, doing things with me.’
This section focuses of the perceptions and experiences from the point of view of
the service users. In this respect, users talked of the stigma they felt from using
the service, particularly in the early stages:
‘I weren’t really worried about my family because I knew they would understand
because of my brother (who has schizophrenia) but some of my friends changed
their opinion of me really.’
One user felt most stigmatised when she first came out of hospital but felt that the
EIS helped her with this:
‘I guess they helped me because they made me think you’re more of a person
because they’ve dealt with people like that and they can say you’ve got better and
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it’s an illness and not you. And just things like saying ‘don’t be afraid to not
mention it to an employer if you’re wanting a job you can say you’ve been ill and
leave it at that.’’’
Another user talked about how the service had helped him deal with the
‘embarrassment’ and problems caused by the illness:
‘I found it very helpful looking at my psychotic periods and just general mental
health problems over the 18 months prior to being here. I came away with an
understanding in the last month where I have wrote down my experiences again.
I’ve used (key worker) to talk over things and feel less ashamed which is
something that I was feeling. You know, it’s difficult when you have a mental health
problems and it’s something very shameful and embarrassing but talking about it
has given me a bit more confidence.’
In this particular case, the individual’s key worker accompanied him to a local
theatre production that focused on the experiences of young people with FEP, which
was said to have been ‘very helpful.’
‘He (key worker) booked a travel and theatre company at several sixth forms and
colleges across (area) who are doing a play on mental health which is a half an
hour play on this guy having his first psychotic episode and the reaction of his
friends and family and then the second part was a questioning of the actors and
character by the audience. He took me to one of those and I got to talk to the
people involved and see how the students will react and so on. So I talked to him
about that and understanding and talking about the environmental versus the brain
chemistry debate and I understand more about mental health and I feel slightly
affronted that there is such a stigma attached to it. As a result of which, I feel
much more confident.’
Whilst the EIS teams worked with the users’ families, only a handful of the users
recalled the offer of ‘formal’ family therapy. Nonetheless, any involvement was said
to have had beneficial outcomes.
‘Their work with my Mum made a difference. It made her understand a hell of a lot
more even though she’d been on the internet researching and everything. It’s really
made her understand a lot more.’
Impact on personal circumstances
Five service users reflected that their relationships with friends and family had
remained the same since the illness began while the remainder noted various
changes. For example, several users felt that some of their old friendships had not
lasted, sometimes because they believed they were part of the ‘wrong crowd’
previously, or because friends had not stood by them through difficult periods.
Some users described the awkwardness of socialising with their friends and
consequences of the illness on their friendships:
‘It has been really a problem and conscious that they talk about me, and what I
found is that because I spend a lot of my time talking about my illness with my
CPN, then I am in that routine and I am out of the routine of talking about other
things. … sometimes they don’t know what to say and then the usual things like
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what have you been up to, then I say I’ve not been up to much and then it gets a
bit awkward sometimes. ’
Another person said:
‘I had one friend when I worked at the (name removed) who was a good friend and
I was supposed to be her bridesmaid … when I went into hospital and I was
depressed I rang her after a couple of months … she just said ‘I don’t want
anything to do with you, this is my wedding and you haven’t phoned’ and I said
‘I’ve been in hospital’ and she said ‘pull yourself together, there’s nothing wrong
with you.’ … she was quite aggressive.’
Others felt that if friends had not stood by them, they were ‘not worth having’:
‘Well it just made me feel, well they’re not worth having as friends really.’
‘Friends - you just find out who is a friend and who’s not because some people go
away and some people stay and support you.’
Many of the users described how relationships with family members had become
closer and stronger as a result of the illness. One user felt this was because they
had accepted some responsibility for his problems:
‘Sort of everything started to change after the hospital. I think my family realised
that they were part of the problem as well.’
Another said that her relationship with her mother had strengthened:
‘Me and my Mum have always had a very close relationship but this has brought us
even closer together and I was beginning to feel like if there was one person I could
tell about my illness it was my Mum and I just think it’s such a shame for people
who haven’t got understanding parents and I just don’t know how they
manage…We were very close, but I wouldn’t let her get too emotionally close. I
never cried, never cried in front of her and I just think we’re a lot closer now
because of what happened.’
Similarly, her relationship with her elder brother had improved:
‘He’s got a lot stronger as well. He’s a lot more protective of me sort of thing and
we’re a lot closer now.’
And, with her father:
‘And what’s come out of all of this is I wasn’t speaking to my Dad for three years
cos like we had a fall out and he beat me up. We’ve started speaking again because
when I became ill I just felt like I needed my Dad…My Dad found out that I was ill
and he wanted to see me. So now me and my dad have got our relationship back
after three years, so a lot of good’s come out of it really.’
Others, too, suggested that relationships with parents and siblings had improved:
‘I am closer than I was before. I was on drugs and I see my Mum a lot now. She
looks after me.’
‘I think I have become closer to my mother, because she has kind of looked after
me whilst I have been ill. So I have got a lot closer to my mother…I think I have
talked to her more about things. Having just discussed the illness with her,
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discussed what I have been experiencing. I think I have felt a bond through that.
More of a bond. I think she has become very motherly because I have suffered
from it. So I think my relationship with my mother has improved.’
A number of service users recognised that their illness had put a strain on their
parents or other family members:
‘It’s difficult for my mum now, if I have a bad day, I don’t think my mum finds it
very easy to cope with. … I think my mum was so close to it and so close to me
that now I think sometimes we, our relationship is a bit more strained sometimes
now. I think it’s just because she’s been really worried about me.’
‘It’s been stressful, because she has to see me go through this. Just overlooking
things like, to make sure I take my meds, it’s been stressful.’
One young man noted that while family relationships were ‘good’, he did not want
to continue to be a ‘burden.’
‘My family are very good…The Early Intervention team has sat down with my mum
as well and talked to her and given her information and asked if she had any
questions. I try very hard not to make them feel like they have to look after me. I
don’t like being a burden on anybody but I know that they care and if I need them,
all I have to do is call…They are there if I need them, but I try to manage on my
own without them. I think I put them through enough.’
Some service users suggested that they had noticed some changes since being
involved with the service, often regaining confidence or indeed gaining a new
approach to life. One user described how he had gradually become more positive:
‘I was sick obviously, I wish I wasn’t sick, that’s the only negative about it. Apart
from that, I’m positive myself I am getting better hopefully. Hopefully I am getting
better.’
Others describe how they felt differently about themselves:
‘Difficult questions, you look at life and think ‘what is important to me?’ I do hope
to have my own family and to settle down and get my own house. I realised when I
was ill these things that I thought were out of reach and I couldn’t do then, but now
I see that they are achievable.’
Another felt that she ‘has grown up fast’ and contextualised this by adding:
‘Because when you’ve been through something like that, everything is brilliant once
you’re over that and it’s like little problems don’t seem like problems any more,
after what I went through. It’s been the longest six months of my life, but I think
it’s taught me a lot of lessons. I mean I was very mature for my age anyway, but I
think it sort of made me grow up so fast. It’s made me see things a lot differently.’
Other comments included:
‘I think I appreciate life much more and freedom and just civil liberties and not
being sectioned and possibly I’m more confident because I’ve come through that
and come out the other side. Hopefully it won’t happen again…I do have black
moods still when I look back on it and just really regret what happened and hope it
won’t happen again. It’s been more positive and just been getting better steadily.’
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‘I feel there is hope again. At one time, you know, I wanted to die. I didn’t see any
point in carrying on. When I was back here, I felt like I was in a prison and
everybody was trying to get at me and thinking that nothing was safe. But now I
have hope again. I am not as scared as what I was used to be. I am not as sad. I
am not hearing voices that are not there, telling me…I’m doing OK. It will get even
better.’
‘I just look at the bigger picture of life. There is more out there than just sitting
round and taking drugs. You can do anything and go for anything.’
‘At the moment the last three months have been really great and I’ve never been
someone who has great confidence and I have had a lot of insecurities and as I’ve
explained initially the mental health problems don’t really help at all. But now I am
with this change of medication I am starting to get my brain working at the right
speed again.’
Despite these positive elements, some service users felt that they continued to
have ‘bad days’ where their confidence was at a low ebb, for example:
‘It just makes you feel like you’re a failure and I get very down at the moment. I
haven’t got much confidence. I lost all that. I just feel like there’s a stigma and
stuff like that.’
Others questioned whether a state of ‘well being’ would ever be achieved:
‘How will I know? I don’t know what normal is? Do you know what I mean? I quite
often sit here and I wonder if other people think how I think. You know as if I am
separate to the rest of the world. They say that is part of my illness. So I still feel
that I must be slightly ill.’
Involvement in service development
Only five of the service users interviewed had been involved in planning or
development of the service; one by filling in a questionnaire and two by attending
planning meetings, two by helping with recruitment of staff. Two different users
had been asked to become involved in planning but had declined. This reflects the
lack service user involvement described by the EI teams.
3.1.5 Carer perspectives
Within these eighteen interviewees, fourteen participants were female, and all were
the mothers of service users. Four participants were male and all were the fathers
of the service users. The age range was 35 to 72 years. Fifteen described
themselves as White British, one as British, one African-Caribbean and one as
Muslim.
Personal background
Most of the carers (14) lived with their sons or daughters (the service users), in the
family home. Two of the service users had moved into their own flats, although
these were nearby. One of the service users, the daughter of two carers (a husband
and wife couple) interviewed, was at university in a different town. Time as a carer
ranged from six months to four years. Eight of the carers had had caring
responsibilities for a year or less, while the remainder had been a carer for longer.
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Fifteen had other children besides the service user; for at least seven of the carers,
these siblings did not now live at home.
Two of the carers were retired, but undertook voluntary work; one was semiretired. Six of the carers ceased work when the illness began, one of them due to
their own ill-health and disability. Six carers worked part-time, while the remaining
three carers worked full-time. Of those that worked, four had not changed their
working arrangements as a result of the illness, although one of these said that she
had ‘been lucky’ to work flexi-time. Another got up at 4am to prepare for work and
to enable her to continue her caring responsibilities. Three had needed to take
additional (and often unpaid) leave in order to take their son or daughter to
appointments and negotiate the NHS, but had subsequently returned to their usual
work pattern.
Roles and responsibilities
The caring role was described as having a number of different facets. For example,
one carer described it as providing emotional and practical support in order to
prevent relapse:
‘Well we provide for her basic needs, food and shelter and surround her with
assurance and love, but also I see my role as a challenging role because she
slipped into a pit and needs to scramble out and I find that she wants to get out, so
I have to encourage her. … We keep an eye on her. She’s had three relapses at
least, probably all due to carelessness and not taking her medication. … In the past
we let her get on with it, but now we take a much more direct interest in making
sure she takes her medication. … she’s recognised that it’s absolutely vital to her
recovery.’
And where possible, to prompt and sustain motivation:
‘Well lying in bed is one of the great temptations, because life is difficult and it is
easier to opt out, and I am sure she’ll tell you that, that I do my best to get her out
of bed in the morning, but now she gets up early and goes jogging with me. … Even
then she does go back to bed for a while, but not for the whole morning. She goes
back for an hour and then gets up. And so there is a new determination in her. …
We need to continually remind ourselves that she is under medication and this will
have its side effects.’
Talking and listening was construed as a significant aspect of the caring role:
‘For her to talk to me if there are any problems, because she can withdraw herself
into her shell, and I can tell when she is going to do that. … I sit her down and tell
her to talk to me. I deal with the emotional side and the wife, she does all the
shopping for her and takes her out and that. … There is a bond between us and it is
very, very strong.’
‘Listen a lot, especially when he is on his own. I phone him up a lot, there is also a
lot of friction between us sometimes, but generally I look out for him, if he has got
any problems, I try to sort it.’
Monitoring medication was often seen as part of the carers’ role although it was
noted that service users would assume some degree of responsibility.
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‘The pills are in the kitchen and I usually put them out at breakfast time, but she
would do, if she goes away she takes them, and she does it.’
‘As her carer I’m used to transferring her to and from doctor’s appointments and I
also make sure she takes her medication and any other things she needs help with.’
The caring role was seen as part of normal parental responsibilities, and as such,
few of the people interviewed identified with the term ‘carer’.
‘I don’t think (carer) is an appropriate term because when they say carer, it would
apply to any parent. I think a parent is a carer. I am just responsible for (service
user)’s welfare as a whole and his well being as a whole, as I am for my other
daughter.’
Impact on the family
The most significant impacts noted by carers included increased levels of stress,
strain and disruption:
‘We were all pitched in to a very traumatic experience and it was extremely difficult
because she was very ill.’
‘I think for the stage of life that she is at, normally I would have been more
sidelined in her life because she’d have been steering her own canoe and she would
have been at university and her life would have moved on. I think because she had
been ill and she was back at home suddenly I was made to be very much of a
mother again. There were signs that her personality was affected. I think it has
receded a bit now but I think in the first few months that she came out, she could
get quite stroppy and upset about things. So it was coping with a new side of her
personality that hadn’t existed before, and obviously there were strains and
stresses as a family group, you know, to kind of try and smooth the path shall we
say. Always worrying to start with that she was going to relapse, not take the
medication.’
Furthermore, some carers were concerned about changes in their son’s or
daughter’s behaviour and personality, and whether or not they would ‘present a
danger’ either to themselves or others.
‘ I couldn’t leave him at home; he’d self-harmed on a couple of occasions. He burnt
his hands; he tried to set fire to my house, I couldn’t even, as with other children
his age, nip out to get a loaf of bread…it was a constant supervision…the only
respite I had was when he was asleep.’
‘It just puts you on edge worrying what you are going to find. We had an incident a
few months ago where we got a phone call at work that the house was on fire
because (service user) had left an electric blanket on and come home and the fire
brigade were at the house. This is the sort of thing that is happening. We never
know what we are going to come home to and it is getting really worrying.’
Just over half the carers reported that they had received considerable support from
immediate and extended family members.
‘My wife because we’re a team, but (name removed) sister who lives in (name
removed), she’s been involved but she has a full-time job, but she has stayed with
(name removed) sometimes and given us time off.’
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‘When she was first ill, my eldest daughter was living with her, and so a lot of it fell
on her, the immediate effect, because it all happened quite suddenly and she was
very involved for the next few months. But the other children have been ever so
supportive and she can go and talk to them.’
However, there was evidence that others in the family often found the situation
difficult:
‘There have been difficult times. They have perhaps worried about the effect it was
having on me and my husband and so they have had, I suppose, my loyalties have
mostly been to (name removed), whereas they (other children) have had divided
loyalties because they were worried about us and what it is doing to us.’
‘It virtually broke my family down. My mum and I were still very close; my kids
hated me really, because they believed I should have (service user) put away, and
they didn’t think I should be putting up with it any more…I didn’t have time for
anyone really, relationship, nothing. I sort of put my relationships on hold, and did
all sorts of things because I was determined to help (user) through.’
Just under half of the carers reported no changes in family relationships since the
service user became unwell. However the majority of carers described tensions in
their relationships with the service users, particularly at the onset of the illness, due
to perceived changes in their respective personalities leading to friction or
aggression.
‘I think the problem is when you’re experiencing that as a carer, love goes out of
the window and self preservation comes in the door and you stop thinking about
that thing, it’s more like it’s some person threatening you something it’s really
worrying and scary. It’s really hard to love someone who’s got psychosis, that’s the
thing I find really, really hard.’
‘I don’t know, to me she’s always my daughter, but her living with us as a grown up
person, she is a challenge. … (name removed) would say part of this illness is a
reversal to child, you lose control, you lose everything you become a child again.
We want her to be a grown up person and accept responsibilities as a grown up
person and make decisions and stick to them.’
‘I think when (name removed) first became ill I put all my energy into his recovery
and then when he came round I put my energy into sorting out his flat, so I think
it’s just now fitting in. What happens, I neglected my house and myself, which they
don’t seem to appreciate.’
A source of personal loss described by many carers was their own sense of
independence.
‘I don’t see my friends as much as I used to do and I hesitate to make
arrangements … (name removed) tends to rely on me quite a lot, even when she’s
OK. So consequently, I don’t arrange to go away for weekends unless I know
(name removed) is going to be away, that kind of thing.’
‘It did change things. I mean, you know, I did turn down a lot of social occasions
and things like that, because I wanted to stay with (service user) and (user) didn’t
want to go because she felt frightened everywhere that she went and you know. So
yeah, I didn’t have as much outside activity as I used to.’
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‘I did have one before, all my friends I have lost contact with them. My life’s gone a
different direction, so I’m not really looking for a social life now. I’ve got a work life
which is my social life.’
Pathways into, during and exit from the EIS
The most common referral routes into EISs noted by the carers was either through
their GP or as a result of discharge from hospital. Two noted that they were not
aware of EISs at the onset of FEP and had used contacts or other methods in order
to seek out the relevant service.
‘We found it by accident, to be honest. We’d had contact with the local CAMHS and
they put us in touch with the psychiatrist and they arranged the appointment with
the psychiatrist and everything. But it was through my husband’s work, he’s a
teacher at secondary school, and they had a counsellor at school and she told him
about it. She told him about the Early Intervention team and she made the first
contact for us. Otherwise I don’t think we would have. The CAMHS certainly didn’t
tell us about it.’
And:
‘I made a point of just researching and finding out as much as I could about the
illness. So I, you know, went to visit schizophrenia.com, which I found really useful
on the internet. I found out about the Early Intervention Service, and made sure
that someone sat up and took notice.’
Carers' needs
One carer described she felt that it was important that her needs were taken into
account:
‘It’s very refreshing because I felt like I was listened to, and there was honesty,
and quite an unusual way of working when they actually seem to care about me,
not just (user). My well being was as important as (user)’s, which to me was
something I thought was a bit strange, but nice, and it did make a difference
because it was almost like I needed healing too, because I was so damaged by
what the system had done to us, in a way. There was a nurturing that enabled me
to be the person I am now.’
Another felt that while her first impressions were positive, she had ‘just too many
questions’, so expectations were high:
‘I think good, but looking back it’s still really stressful because I really didn’t know
what we were dealing with. Whether it was, like I say, you’ve just got 101
questions you wanted to ask them and they’d probably, it isn’t the best time to sort
of ask about long-term things, but there’s just a million things you want to know
and they did sort of the right thing by sort of giving you information that you
needed and probably not overloading you with loads of information. And sort of set
a plan out as to what they do and how often they’d see (service user). I still felt in
the dark because it it’s such a general kind of diagnosis I suppose …I think at the
time you want, you want a lot of answers and you want them very quickly.’
There was evidence to suggest that the undertaking of formal carer’s assessments
(under the Carers Act 1996) was ‘patchy.’ Seven of the carers interviewed had not
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been offered a carer’s assessment. Another had been offered one but had declined.
Of those that had been offered an assessment, some found it useful, but, in the
words of one carer, it did not appear to be ‘life-altering’:
‘I think they knew I was pretty strong though…I think then we just established this
like, it’s a quite a humorous, friendly relationship and I think they knew that that
was one of the ways that I coped really.’
With the exception of one carer, the majority were not aware of any support group
that they could have attended. The one exception described the group he attended
as follows:
‘They did eight meetings initially where they gave presentations basically about the
treatment, about things like enabling sessions, about looking after ourselves, about
time management, developing skills to look at different issues and about how we
sort of gave ourselves quality time and looked after ourselves better really through
exercise and all sorts of different areas. Very interesting eight weeks, a bit heavy,
some of them felt because there was more presentation wise…I found it very, very
useful… Well anyway after the eight weeks we decided that we would take a change
so we all meet every month and we have usually a couple of drinks or a meal and
the most, we have a good chin wag about all the problems we’ve experienced and
it’s more like a supporting group. Some of us have gone through really difficult
times and others have been much more buoyant and able to support those that
aren’t, so that’s been going on for just about a year now.’
Perceptions and experience of the EIS
Most of the carers were ‘happy’ or ‘very happy’ with the level of support and care
provided. Frequency of visits had been satisfactory for most (every one to two
weeks), with flexibility in terms of appointments.
‘If we needed them they would be there and they would come out to us straight
away or they would get us to go to the hospital, or anything if we needed to.’
However, one carer expected more contact:
‘At first they came out twice a week to see her but to be honest, I thought their
involvement would be more intense with her than that. It wasn’t like really
structured … I thought they should be more involved, there should be a more
structured approach, like having an action plan and say ‘this week we are going to
be doing this with you, next week’, or whatever.’
Sometimes, there was a problem with returning phone calls:
‘I phoned the other day and I wanted to talk to one of the key workers. I just
wanted to ask a few questions and he was out and the other staff said ‘he will ring
you and he will be back at four’, but nothing happened, but then he told (name
removed) that he didn’t have my home phone number. I have given him my home
phone number lots of times and he has got my mobile.’
Others were much more positive:
‘Brilliant. (Keyworker) was the most reassuring person. I just, you know, initially on
the phone when I phoned from school, from work, you know and I was crying. I
might sound as if I’ve been really level-headed all the way through and I tried to
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be, but I did a lot of crying but that was always when (service user) was not around
because I just tried to, you know, keep calm around (service user). The first
conversation I had with (keyworker) I don’t think she could really hear what I was
saying in amongst, you know, sobbing and tears and whatever. Describing what
was going on with (service user), but she, she was just like a voice of reason and
she was great as well towards me because she said that I’d done really well and
she reassured me that I’d been doing the right thing and you know, and basically
said that she’d come round sort of the very next day to see (service user).’
And:
‘I can’t praise them enough and the level of aftercare you know, the fact that, you
know, I just think they need to have so much more funding, they really do, and the
government need to be aware that this is something that is going to stop the kind
of terrible tragedies that you do see occasionally sometimes on the streets…I mean
they were taking her out twice a week at one point…She doesn’t have to get on any
public transport. They personally come and fetch her in a car from the door. Take
her bowling, to the cinema, to the gym. She gets to be with other clients, other
workers in the service and then she gets dropped straight back off at the door. She
doesn’t have to get on a bus or anything. The care is there from the minute she
leaves the house till when she comes back.’
And:
‘Just very positive, as I said it was the first time that I felt there was something
positive…(Service user) was a classic case and there were various percentages
flashing around but we seized on one that was I don’t know 30 per cent that
recovered and never relapsed, that there was a good possibility that she would
recover and not relapse again, so that gave us hope amongst all the doom and
gloom. They didn’t not qualify that, I mean we knew there was a chance that she
wouldn’t, and she would may be get something with her all of her life, but it was
the first time we had been given any hope that she was going to come out of it and
may be alright.’
‘They did, they explained everything. They said that you know there was no magic
formula and care plan and assessments were done regularly, monitoring of them
and achievements and putting in objectives, trying to make targets. And they were
measured and monitored regularly, so yes, I knew everything that was going on.’
‘There was one day when everything was really difficult and I can’t remember
whether (name removed) rang them or I rang them, but they stayed behind at five
o’clock and saw us and the said then, ‘we will stay as long as you need us to stay.’
There was no sort of pressure.’
‘It was a huge relief to speak to people who seemed to be listening to us. … Before
(name removed) became so ill, there had been episodes for years and years and
years. You know all the years she had been living in (name removed) and so it was
a relief to think somebody was going to be able to help … rather than just papering
over the cracks each time.’
‘They were amenable and they gave us information. I think there are times when I
felt, when you question your own parenting of your child, well, (service user) is a
young man, but you know, it makes you question parenting issues. And they were
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sort of quite supportive of me because I thought, ‘what have I done to make
(service user) like this, or is it the things that I’ve done that have made (user) turn
out like this?’ At first it’s totally the world turning, totally alarming…’
Three of the carers noted that they were aware that psychological therapies had
been offered to the service user and where this had occurred, both the process and
the outcome was perceived as positive.
‘Just beginning to get to grips with that (CBT) more and then it had to stop because
we came up here … From my point of view, I felt that it was helping her and doing
some good. … for the first time, when (name removed) was speaking to me she
would question the way she was thinking and she would realise when she was
having negative thoughts. She would just be able to think a lot more about the way
she was thinking and realising that sometimes she was adding to her difficulties.’
‘The cognitive behaviour therapy I think was useful in terms of helping (service
user) to cope and sort of see things differently and the other thing that was useful
that was providing (service user)’s early warning signs and actual programme. It
added a lot of paperwork and actually gave us a folder with the cause and outcome
of (service user)’s illness and things to look out for. So all of that was useful.’
Carers’ perceptions of recovery
Two of the carers described their understanding of the concept of ‘recovery’.
‘Everything’s a bonus. So to me, what I used to say to (user) was, if you manage to
get up in the morning, and not lie in bed all day, that’s an achievement. To me, if
someone is free of symptoms, and able to get up in the morning, able to enjoy
their day and you know, be able to interact with another person, to me that is
success because it is relative…But I suppose for me feeling that (user)’s recovered
is feeling she’s got plans you know, that she’s got things she wants to do. She’s
just got a job and she went out and got the job independently…She’s back at
college. She’s doing Psychology ‘A’ level, she’s you know, she’s got her
relationship.’
‘Because she is so back to normal and different people have said to me who saw
her when she was ill that we’ve got the old (user) back. But that’s not to say she’s
the same person because obviously you don’t go through something like that and
come out unscathed. It has done something to her but I’m not sure that it’s all bad
really. I think it’s given her self-knowledge and armed her for the future that lots of
us have to face in our life. I think she’s now got the suit of armour that she can call
on that other people have to find, so I think in a lot of ways she knows herself very
well now. And I’m nearly convinced that it was a one off, that she’s got through it
and come out the other side and I think she’s suitably armed if any of it started to
come back.’
Carers’ involvement in service development
Only one carer noted that they had been involved in any aspect of service
development.
‘I’ve been instrumental really in trying to get funding and making other people
aware of the service and also trying to get rid of some of the stigma attached to
mental health. That’s been one of my personal agendas within the council and at
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national level as well as with MPs and getting everyone involved with Early
Intervention. You know, getting them to know what it’s all about and how
important it is to keep it on the agenda.’
The majority either did not have the time or felt that they had only a limited
experience to draw on or just wanted to put the ‘episode behind them.’
3.1.6 Links with other organisations
All but one of the case study sites appeared not to have had an opportunity to
develop or implement an action plan in terms of establishing links with
organisations and agencies either within or outside of the mental health domain.
The main reasons for this appeared to be ‘having to guard against opening the
flood gates’, ‘balancing the demands of clinical and promotional work’ and ‘coping
with near capacity’ within the context of uncertain funding.
These reasons were also seen as contributing to the communication difficulties
experienced between EISs and other services, particularly mental health teams and
GPs, which had initially led to ‘inappropriate referrals.’ The question, therefore,
from a developmental perspective was whether time spent dealing with such issues
could have been spent more constructively in promotional activities when the EIS
first became operational. With hindsight, several team members, from different
teams, made this point but felt that carrying out such work would have been
‘unacceptable to the Trust or PCT as their interest was based on targets, not
whether we’ve got the foundations right.’
The exception to this, indicated above, was one EIS which had allocated specific
developmental tasks to all newly appointed Care Co-ordinators, with each person
linking with housing, education and training, CAMHSs or substance misuse services.
With hindsight, this was said to be ‘a good way to develop and maintain links.’
Other statutory mental health services
Three key areas were identified by EISs in terms of establishing links within the
wider mental health domain. First, emerging or newly developed teams said that
they felt under pressure to begin taking referrals before operational policies had
been finalised. This concerned some EISs since they felt that they had not done
justice to opportunities for information sharing, particularly in terms of referral
criteria and subsequent service eligibility, with colleagues based in other parts of
mental health services. Indeed, a number of EISs felt that they had given the
impression of ‘not knowing what they were supposed to be doing’ as a result of
having to change some aspects of their operational policy. However, at least one
team was optimistic that any misunderstandings would be short-lived.
The second involved links with CAMHSs. There appeared to be a wide variation in
the quality of relationships between CAMHSs and adult mental health services in
general and EISs in particular. A small number of EISs suggested that their
respective relationships had strengthened during the lifetime of the project as a
result more structured and regular communication. In one example, a
representative from the CAMHS and one from the EIS attended each other’s referral
meeting on a monthly basis. Some joint working had taken place, which, it was
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suggested, had given the CAMHS an opportunity to work alongside the EIS in order
to develop a more thorough insight into how the team operated.
‘We’ve had some compliment slips from CAMHS saying how pleased they were with
the intervention really and that they felt it had had a difference, so things are a lot
warmer. I think when you’ve had a couple of cases that have gone well, it does
break down a lot of barriers doesn’t it?’
In the same EIS, the CAMHS-adult mental health service interface group had
developed a protocol governing ways in which joint supervision and training would
be undertaken.
However, not all EISs experienced such positive relationships with CAMHSs. In one
area, for example, links were described as ‘difficult’. CAMHSs were said to retain
medical responsibility for clients under 16 or who were between 16 and 18 and in
full-time education. The team wished that the relationship with the CAMHS could be
extended to the point that the two services co-worked with young people with a
FEP. However, the EI team had experienced problems in accessing CAMHS notes
and felt that since CAMHSs were used to working independently, it would be too
challenging to promote a link between them. One participant described the current
situation as being ‘caught in the middle’ between child and adult services, however,
there was a consensus that having an EI member of staff tasked with working on
links with CAMHSs would eventually lead to an improved working relationship.
Similar ‘organisational boundary’ issues were experienced in other locations:
‘Some of it seems to be around a perception that children’s services should be very
different to adults which is in the Children’s NSF and that doesn’t quite fit with an
integrated EI service that spans adolescents and older adults.’
Furthermore, there was a sense that such issues were not restricted to operational
levels:
‘Certain people within CAMHS, the sort of higher up you go, have a perception that
they are offering a service already to young people with psychosis and that
anybody who needs their service urgently, despite their waiting lists, is able to get
one. And what we are trying to gently counteract is when we talk to clinicians at a
lower level, that isn’t what they’re saying to us and that isn’t what our carers who
get in touch with us either say, (that we pick up later on from CAMHS, or that
phone us), that haven’t got a service in another part of the county, that’s not what
they’re saying. There isn’t the service there, that is, not the kind of dedicated all
singing all dancing service. We don’t do everything but we do an awful lot more
than may be we get that. There is this perception that they are meeting the needs
already.’
The third area involved links with other services within the mental health domain,
particularly CMHTs and Crisis Intervention. Again, there was a general feeling
expressed by EI team members based in the more well-established services that,
over time, relationships had strengthened. However, this position was not mirrored
in the emerging teams. In describing their relationship with local CMHTs, one
person in an emerging team said:
‘Initially there was some tension with them. For them, we were just another new
team and there was a concern that we may add to their workload. They have had
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to deal with the emergence of the Crisis Resolution Team and the Assertive
Outreach Team and as a result of these new teams, a lot of the experienced staff
have moved to them.’
In two other case study sites, it was suggested that CMHTs were not familiar with
the underpinning philosophy of EISs which had led to the belief that:
‘I think there could be some reticence to accept us. They’re still entrenched in these
old methods perhaps and the new way is often off putting for them. They don’t
want that or they don’t want change and there’s all those sorts of issues that go on.
So I think there is some reluctance to embrace us fully.’
And:
‘There is a mixture of reactions really. Some people are a bit, how can I say it?
They are a bit uncertain about it really. They quite like working with people with
psychosis themselves, and they do not particularly want them to be taken away
from them.’
Overall these difficulties were seen as ‘a natural response to change’ and the EI
teams were willing to approach the matter sensitively. The general feeling was that
they needed to maintain regular contact with CMHTs in order to discuss their
concerns and to work together on formulating solutions.
While links with Crisis Intervention teams were said to be ‘developing’, one person
suggested that ‘it’s not always an easy ride’. In this respect, it was acknowledged
by the EISs that Crisis Teams faced similar problems to themselves in terms of
resource and capacity issues.
‘If we are to keep people with first episode out of hospital, then we do need the
services of the crisis team on board, in that we can do with a little bit more of an
extended period of time from them. If someone is beginning to relapse, they may
need that little bit more extra support. We may have people with first episode, who
may be starting relapsing, who might not be at the point of hospitalisation, but they
might need that little extra support. I think that we have to sit down with Crisis and
see what they can offer, but I know they’re as stretched as us.’
Other statutory health and social services
At the beginning of the research project, it was apparent that the majority of EISs
had established links with both Primary Care and local Accident and Emergency
Departments predominantly on the basis that they both made referrals to the
services. However, towards the end of the research, it was noted that several EISs
experienced difficulties in engaging with GPs. These were attributed to the large
number of practices that every service covered and the fact that psychosis
represented only a fraction of the mental health problems that GPs deal with.
Whenever EISs were given time by GPs to educate them about the service, the
number and appropriateness of referrals appeared to increase.
As time went on, there was a general sense that considerable emphasis had been
given to providing information to and establishing links with, GPs. Instances
included the delivery of training, some of which had included service users as
facilitators, the development of screening tools and the benefits believed to ensue
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from other research projects (the Redirect Trial,3 for example). However, concerns
remained in terms of some GPs’ apparent lack of knowledge or appreciation of the
issues surrounding FEP as the following quotations illustrate.
‘They go to the GP for a sick note two weeks after discharge and he’s writing
schizophrenia on the sick note and that’s never been discussed with the client and
you know, it’s those kind of things, cultural things that need to be tackled. We can’t
do it all at once, but it, it’s just the impact that it has on those individuals that are
quite concerning. It gets a bit hot sometimes.’
The use of the term schizophrenia has a lot of ‘baggage’ attached to it. As the team
member went on to say:
‘It can be quite traumatic. You’ve got to work through the trauma, but also because
a lot of the literature out there, as far as schizophrenia, is old and it’s not hopeful.
It’s not based on recovery models you know and people have access to this
information. You can’t screen it. You don’t have any control over what they’re
reading and also I mean each time we get different co-morbidities and different
diagnoses, we’re trying to get a resource together with information and you go on
websites such as Rethink and actually even that isn’t full of hope and yet you would
quite safely recommend the Rethink website and then when you read some of the
stuff, it actually does need updating. There’s not enough good stuff out there.’
Opportunities for individual team members to access support and information from
regional or national networks were said to be very worthwhile in providing scope for
further learning. Network groups arranged by the NIMHE had also been useful in
putting services in touch with each other and helping them learn from each other:
‘That has been a real lifeline, to meet with other teams. We all make mistakes but
you can learn from pitfalls, not mistakes necessarily, but pitfalls that other people
have come into.’
‘Support has tended to be from working with like-minded people. And another
thing that has been hugely valuable has been my links with IRIS colleagues who
have been of significant help to me and have therefore helped the team as a
whole.’
Child protection issues tended to be dealt with on an ‘as and when basis,’ although
some EISs had established relatively close working relationships with local teams
and organised and attended ‘mutually beneficial’ training sessions and in some
instances (where appropriate), attended each others’ referral meetings.
Wider public and voluntary services
With the exception of one EIS, which had formally tasked team members with
developing links with organisations both within and outside of the mental health
domain, there was little evidence to suggest such a blanket approach had occurred
elsewhere. There were, however, numerous examples of many EISs working
alongside housing agencies, women’s refuges, Citizens Advice Bureaus (CABs),
Young Minds, Rethink, an array of youth counselling agencies and Connexions in a
3
Randomised Controlled Trial Educating GPs in the Early Detection and FEP based in
Birmingham
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more informal capacity. Indeed, Connexions in particular, seemed to be used on a
regular basis in each of the case study sites with one team suggesting that:
‘All of our clients, as a matter of course, from day one, as soon as we have contact
with them, are linked up with Connexions and they are appointed a personal
advisor. We insist upon that.’
Interestingly, relationships with statutory organisations within the employment
domain were described as ‘tenuous’ and ‘often riddled with discriminatory practice
and prejudice.’ In discussing a recent incident with an employment agency
specialising in working with people with disabilities, one person said:
‘(name removed) took a client to this agency for help, the advisor shouted across
the office asking how to spell schizophrenia, and some jokes were made about
medication.’
And in terms of the Benefits Agency:
‘I struggle with benefits agencies and I get really ***** off with benefit agencies
because I’m trying to sort out people’s benefits and they say due to the Data
Protection Act we can’t tell you anything. I know this person better than you do,
just say yes or no. It just frustrates me. It’s so bureaucratic and this person’s
already mentally unwell. It’s further exacerbated because their basic needs aren’t
being met, their housing benefits not being paid, they haven’t even got benefit to
go and buy fags let alone food and it’s just so frustrating.’
During the final round of data collection, it was apparent that there was growing
recognition of the value and role of services located outside of both the statutory
domain and more particularly, the mental health domain.
‘Young People’s Housing, they are very good, because they are orientated around
young people, not around mental health, so I like to work with those. There’s a
youth club that we are developing links with and some training courses that they’ve
got going as well. And again, it’s about mainstream young people’s services really.’
In addition to links with Connexions, CABs and Housing Associations which were
noted in previous rounds of data collection, other links towards the end of the
research project included the Salvation Army, an array of Safe Houses and hostels
and employment agencies. Whilst there was a growing interest from the
perspective of the EISs to forge closer links with voluntary organisations, there was
an acceptance that this had to be undertaken in a sensitive manner:
‘The whole idea of running services with the voluntary sector is quite new for us, so
we’re learning these little things are we go along … ensuring the voluntary sector
keep their focus and their identity, that we don’t swallow them up and they become
a mini NHS service and lose all of their qualities which make them less institutional
organisations and less bureaucratic than we are.’
‘I suppose some people get a bit wary of these statutory people starting to come in,
and where to do you fit in with education, or whatever, so it’s getting your first foot
in there. And what we tend to try is that we use tactics which piggy back, so if
somebody is already there we use tactics and get yourself an invite. … I think once
we are there and people can see the benefit of us, then I think we will have more
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or less cracked it. But it’s getting that first foot … because none of us like cold
callers.’
One EIS noted the value of being physically based with a number of community
projects and another was proactively seeking accommodation with a non-statutory
young peoples’ counselling service:
‘…ultimately we would love to have a service base within a youth organisation so
it’s totally away from medicine. We have spoken to people from (Name removed),
which is a local youth counselling service, however their property isn’t big enough
for us, but we do use rooms there, so we have got a link. They are also looking for
property and they have been looking for two years and have been unsuccessful so
far at finding another premise – but we have tentatively said ‘well you know, if you
are looking for somewhere and you seem to find somewhere that’s probably a bit
bigger and a bit more expensive than you want, bear in mind that we would be
quite happy to piggy-back with you, so we can share costs’ …’
The public
There was strong evidence to suggest that links with the general public, in terms of
awareness raising campaigns, information sessions or ‘open days’ were weak. This
was largely a result of insufficient funding and therefore capacity to concentrate on
developmental work of this nature.
3.2 Summative evaluation
3.2.1 Audit data
Data relating to a total of 479 service users were used in this audit. Data were
collected from patients in the 12 active teams, 12 months after inception into the
EIS.
The narrative that follows provides descriptive statistics of the variables of interest
in the data. The relevant tables referred to are located in appendix 8. Figure 6
contains a key which describes the position of each of the EISs, through self-report,
as either urban or suburban/rural.
Figure 6. Position of EISs on urban-rural spectrum
Team
Location
A – Birmingham Harry
Watton
Inner City
B – Birmingham
Highgate
Inner City
C – Gloucestershire
Mix (urban/rural)
D – Herefordshire
Rural
E – Newcastle &
Moorlands
Rural
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F – Sandwell
Urban
G – South Staffordshire
Mix (urban/rural)
H – South Warwickshire
Rural
I – Stoke City
Urban
J – Walsall
Urban
K – Wolverhampton
Inner City
L – Worcester
Mix (urban/rural)
Baseline characteristics
Tables 1 - 3: Service users incepted into the EISs by gender and ethnicity
Of the 479 individuals known to the EISs, a significant proportion (339 or 70.7%)
were male, showing statistically significant differences in inception into the EISs by
gender (p < 0.001). In terms of ethnicity, 268 (55.9%) were White and 67 (14.0%)
were Asian Pakistani. The majority of patients in the latter ethnic group (73.1%)
were engaged with two inner city teams A and B. The trend shows that there was a
relationship between ethnicity and particular service teams (p < 0.001). The third
largest ethnic grouping represented individuals from the Black-Caribbean
community 42 (8.8% of whole cohort). Of these, 26 were also engaged with the
same two inner city teams A and B. Only 17 (3.5%) patients from BME groups were
incepted into the six predominantly suburban/rural EISs (C, D, E, G, H and L).
Tables 4 – 5: Age by gender and ethnicity
The mean age at admission was 23 years for both males and females (range 1447). There was no significant variation in the age trend in relation to ethnicity.
Tables 6 – 8: Co-morbidity and dual diagnosis at baseline
At baseline, 303 (63.3%) of people had some form of co-morbidity of which
substance misuse (142 (29.6%)) was the most common. Co-morbidity was
significantly more prevalent amongst men (n = 246 (72.6%)) than women (n = 57
(40.7%)) - χ2 = 47.77, p < 0.001. 113 (23.6%) of people had a combination of comorbid diagnoses and 96 of this group (20.4% of the whole cohort) had both
alcohol and substance misuse problems.
Figures 1 – 3 in Appendix 8: DUP (weeks) gender, ethnicity and EIS
Mean DUP was 16 weeks. The results of the statistical tests shows that there was
no significant difference in the mean length of DUP between males (16 weeks) and
females (15 weeks) i.e. χ2 = 0.27, p = 0.60. With regard to ethnicity, the DUP
trend again was not differentiated according to ethnic groups (χ2 = 5.0, p = 0.54).
But there were differences in the mean DUP amongst the EISs (IQR: 3 -21; χ2 =
27.38, p = 0.003). Regression analysis deals with covariates of DUP in greater
detail.
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Process measures
Table 9-10: Mental Health assessments by gender and EIS
A total of 158 (46.6%) males and 58 (41.4%) females were assessed under the
Mental Health Act (1983). This difference in the number of MHAs according to
gender was, however, not significant (χ2 = 2.07, p < 0.356). A total of 95 (49.0%)
White males and 33 (44.6%) White females were assessed. The number of service
users from other ethnic groups was considered too small to make draw any robust
individual conclusions. Overall, however, the trend weakly shows that Black
Africans are more likely to be assessed when compared to other ethnic groups (χ2
= 41.16, p < 0.001). There was a significant difference also in the trend of MHAs
across the EISs (χ2 = 77.0, p < 0.001)
Tables 11 -14: Service engagement at 12 Months
Engagement across all EISs remained high, with 434 (90.6%) people still engaged
at 12 months. 12 people (2.5%) had been discharged, 19 (4.0%) has disengaged,
and 14 (2.9%) had never engaged with the service. There were no statistically
significant differences in engagement in terms of either gender (χ2 = 19.74, p =
0.537) or ethnicity (χ2 = 15.16, p = 0.651).
Tables 15 – 20: Source of referral by gender, EIS and ethnicity
The source of referral relates to the final agency or organisation in the referral
pathway. The highest number of referrals was received from psychiatrists (n=107
(22.3%)), followed by in-patient facilities (n = 69 (14.4 %)), Home Treatment
services (n= 65 (13.6%)), and GPs (n= 54 (11.3%)). Two urban EISs (A and B)
accounted for 93.8% of the total referrals from Home Treatment. To some extent,
the final pathway player appears to reflect different service configurations for entry
into EISs across the West Midlands.
Outcome measures
Tables 21 – 25: Mental Health Act assessments and outcomes
Of the 216 individuals who were assessed, 112 (51.6%) were admitted formally
under a section of the Mental Health Act, 78 (36.1%) were admitted informally as a
voluntary patient and 13 (6.0%) were initially admitted informally but subsequently
formally detained. In addition, 13 (6.0%) other people were assessed but not
admitted. Overall this means that 213 of the 479 (44.5%) patients had an inpatient
episode during the 12 months and 125 (26.1%) were sectioned at some point. With
regard to ethnicity, the trend in outcomes of MHA shows that a significantly greater
proportion of Black Caribbean (14 or 63.6%), Asian Pakistani (14 or 61%) and
Asian Bangladeshi (3 or 60.9%) service users were likely to be sectioned compared
to other ethnic groups (χ2 = 61.34, p < 0.001). The trend in outcomes again shows
that Black Caribbean (21 or 96%) and Asian Indian (8 or 94.7%) service users
were more likely to have had an inpatient episode than other ethnic groups (χ2 =
61.34, p < 0.001). However this needs to be interpreted with caution because of
the small number of people involved.
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Figures 4–6 in Appendix 8: Length of inpatient stay (days) gender, EIS and
ethnicity
The mean length of inpatient stay varied from 72 days for White males to 176 days
for Asian-Bangladeshi males but these differences in length of inpatient stay were
not significant by ethnicity (χ2 = 6.68, p = 0.315). This variation needs to be
treated with further caution because only three Bangladeshi males had inpatient
episodes and the inter-quartile range for this group was between 72 and 239 days.
The mean inpatient length of stay for females was 12 days longer than that of
males but this gender difference was not statistically significant (χ2 = 0.65, p =
0.418).
Tables 26 - 27: Living arrangements at 12 months
Fifty-two (15.3%) males and 28 (20.0%) females lived alone while 218 (64.3%) of
males and 66 (47.1%) of females lived with their parents at 12months. A notable
difference in terms of gender was that 20 (14.3%) of females lived with partners or
a spouse compared with 16 (4.7%) of males. The trend in living arrangements
shows that, compared to other ethnic groups, a high proportion of people recorded
as being Asian-Indian, Asian-Pakistani or Asian- Bangladesh (89 or 80.2%) lived
with their parents (χ2 = 71.42, p < 0.001).
Tables 28 - 31: Employment status at 12 months
The trend in employment status indicates that more males (207 or 61.1%) than
females (53 or 37.9%) were likely to have been unemployed at 12 months post
inception (χ2 = 34.40, p < 0.001). The highest rates of unemployment were in two
of the urban EISs (B 62.2% and F 72.1%). The data suggests that unemployment
rates are significantly higher for both Asian-Bangladeshi and Black-Caribbean males
and females when compared to those of other ethnic groups (χ2 = 85.92, p <
0.001). However in view of the relatively small number of individuals involved, no
strong inferences should be made.
Tables 32 - 34: ‘Risks’ in Last 12 Months by gender and ethnicity
One hundred and fifty-two people (31.7%) were noted as engaging in behaviour
that was deemed to put either themselves or others at risk. No completed suicides
occurred but 16 (4.7%) men and 10 (7.1%) women had attempted suicide. Thirtyfive (7.3%) of the whole cohort were noted as having deliberately self-harmed.
Only nine individuals (2% of whole cohort) had violent attacks committed against
them while another 54 (11% of whole cohort) had perpetrated or committed a
violent attack against someone else
3.2.2 Comparisons with previous work
Patient demographics
In EDEN, 339 (70.7%) of patients were male; mean age was 23 years; 268
patients (55.9%) were White, 67 (14.0%) were Asian Pakistani and 42 (8.8%)
were Black-Caribbean. In recent comparable studies of first episode cohorts, the
LEO team based in the London borough of Lambeth reported 39 (55%) patients
were male, mean age was 26 years; 27 (38%) were White, 35 (50%) were Black
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British of Caribbean origin, with very few reported Asian patients (Craig et al,
2004). A cohort of 166 patients based in Nottingham reported 98 (59%) of patients
were male; 121 (73%) were White, 33 (20%) were Indo Asian and 11 (7%) were
African Caribbean (Singh et al, 2000).
In the Aesop study, data from 462 patients with FEP in South East London and
Nottingham found that 267 (58%) of patients were male, 270 (58%) were White,
and 192 (42%) were African Caribbean or Black African. Details of age and other
ethnic groups were not reported in the paper (Morgan et al, 2005). The OPUS study
(based in Denmark) reported 159 (58%) of patients were male; the mean age was
27 years. Ethnicity was not reported (Peterson et al, 2005). In a recent Rethink
survey of all EISs in England, 70% (1615) were of service users were male, 50%
were White, 18% were Asian, 12% were Black and an age range of 14 – 35 years
was reported (Pinfold et al, in press).
EDEN therefore included slightly more men then other reported studies. The mean
age in EDEN reflects the Policy Implementation Guidance. The ethnic breakdown
reflects, in part, the two large inner city EISs who participated in EDEN and are
sited in an area of the city where there is a BME majority.
Substance misuse at baseline
In EDEN, 142 (29.6%) patients were reported as having a co-morbid substance
misuse at baseline. This is comparable to the 27% reported in baseline data in the
integrated treatment arm of the OPUS trial (Peterson et al, 2005).
Employment at 12months
Two hundred and seven (61.0%) men and 53 (37.8%) women were unemployed at
12 months in EDEN. Overall, 260 people (54%) were unemployed. This compares
to 107 (42%) who were either unemployed or not in education at 12 months the
integrated treatment arm of the OPUS trial (Peterson et al, 2005). However, in
England, 87% of all people with serious mental illness are unemployed, the lowest
employment rate of any group of people (ONS, 2003).
Duration of untreated psychosis
The mean DUP in EDEN was 16 weeks, with a median of eight weeks and an IQR of
3-21 weeks. This appears to be considerably shorter than DUP reported in previous
studies and a recent systematic review (Marshall et al, 2005). Marshall’s review
associations between DUP and outcomes in cohorts of FEP patients, found 26
eligible studies involving 4490 participants. The mean DUP was 126 weeks although
this decreased to 103 weeks after the exclusion of an extreme outlier. However,
these studies included one that began recruitment in 1945, seven in the 1970s and
1980s and only one that began recruitment in the twenty first century. Our DUP of
16 weeks is similar to that reported by Kalla (2002) and shorter than all except the
10.3 weeks reported by Wiersma (1998). It should be noted, however, that few
studies, including EDEN, used a specifically developed standardised interview to
measure DUP, which may account for some of the variability.
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Engagement with services
Few previous studies have reported service engagement at 12 months. However
Craig et al (2004) reported the effectiveness of a team offering specialised
assertive care for young people with first or second episode psychosis in London
(UK) and found that 54 of the 71 people in the specialised group (76%) were still in
contact with the team and 60 (85%) with some mental health services, 18 months
after inception. These are broadly comparable, although lower than service
engagement rates in EDEN.
Compulsory detention
In EDEN, 125 of the cohort of 479 (26.1%) were sectioned at some point during
the 12 month follow up period. This rate may be lower than that found in previous
studies. Singh et al (2000), for example, report a 50% rate for any form of
compulsory detention for people with an F20 diagnosis within a cohort of 164
people with first episode psychosis. However their follow up period was 3 years.
Service model
All but two of the services in the EDEN project were stand-alone teams and six
(50%) were rural/suburban. Results from the Rethink survey found that across
England, 57 (68%) of all EISs were stand-alone teams, 17 (20%) were hub and
spoke and 6 (7%) were hybrid. Four services (5%) gave another description of
their service model. Thirty five (53%) were rural/suburban.
As previously noted, a 64-item scale was devised to explore the relative level of
fidelity of EISs in relation to the PIG. Of the 12 teams that had been fully
operational for 24 months, nine returned completed scales. Total scores ranged
from 169 to 231 (mean score of 200 from a possible 256) with highest and lowest
scores both being in EISs in rural areas. The mean scores for each statement were
calculated from the responses provided by each EIS. The mean scores were then
ranked in ascending order with the lowest scores representing the least fidelity.
Figure 7 describes the ten lowest scores (arbitrarily set at below 2.5) and the 22
highest scoring items (above 3.5). The corresponding narrative, supported by
evidence generated from the findings from the formative data, provides possible
explanations for the variations in the scores and thus departure from or adherence
to the PIG.
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Figure 7. Mean fidelity scale scores across nine EISs
Mean
Statement
No
Statement
1.67
49
The EIS assesses and treats symptoms of posttraumatic disorder linked to the illness or its
treatment.
The treatment of PTSD was not specifically included
within the aims and objectives of any of the EISs
however, there was evidence to suggest that a small
number of asylum seekers presented with PTSD
(notably teams F and H) and where this occurred, it
was addressed within the team.
1.89
2
The EIS controls access to separate age
appropriate inpatient and crisis facilities.
Only teams A and B had access to both ageappropriate in-patient and crisis facilities.
2.00
41
The EIS monitors all clients who are assessed
but not accepted onto caseload for 12 months
after initial assessment.
Only two teams H and L reported that they monitored
non accepted service users for 12 months. It is likely
that this was not achieved in the majority of EISs
because of capacity issues.
2.00
48
The EIS has an emphasis on finding employment
or resuming work.
Most EISs had an emphasis on working with service
users either to find work or to resume their
employment. However, not all services had the
capacity to prioritise the development of links with
local employers because of clinical responsibilities.
Three EISs noted having links with employers but this
tended to be as a result of dealing with a particular
query in relation to a service user’s return or through
providing a one-off training session relating to raising
mental health awareness within the work force. Only
one urban team, with high levels of deprivation, had
established a partnership arrangement with an
employment agency which worked specifically with
young people and adults who had experienced long
term unemployment.
2.11
22
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Greater than 50% of clients with treatment
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resistant positive or negative symptoms
persisting greater than three months after onset
of adequate treatment receive CBT.
While the majority of EIS team members had received
training in the delivery of CBT, their ability to practice
was restricted by case load responsibilities. The two
teams which reported achieving this target employed
psychologists who did not carry a caseload.
2.22
6
The EIS has 50% of the dedicated time of a
general adult Consultant Psychiatrist for every
250,000 population.
Five out of the nine EISs which returned the
completed scale noted that they did have dedicated
Consultant time but that it was less than 50%.
2.22
9
The EIS should have specialist support from
when prescribing for under 16 year olds.
Only one team had specialist support from CAMHS
when prescribing for under 16 year olds. Other teams
had developed more informal links with CAMHS.
2.33
11
The EIS runs psychosis identification training
programmes which are continuously audited and
adjusted.
Only two EISs formally undertook and regularly
audited training programmes. The majority, primarily
because of capacity issues, tended to respond to
requests for training as and when they were needed
rather than having a planned programme.
2.33
61
Within the last 12 months the EIS has been
involved in continuous community based
programmes to reduce stigma associated with
mental illness.
Two teams A and L had been involved in continuous
community based programmes to reduce stigma. The
majority responded reactively rather than proactively
because of capacity issues.
2.44
54
The EIS includes a programme of health
promotion as part of its psycho-education
package.
Three urban teams noted that a programme of health
promotion was part of its psycho-education package.
3.56
1
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The team only accepts clients who have had no
more than one episode of psychosis.
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Only one team noted that it worked with individuals
who have had more that one episode of psychosis.
3.56
17
The EIS team maintains contact with at least
95% of accepted clients for 12 months.
The audit data also indicated that service engagement
at 12 months was 90.6% (n=434) with 2.5% (n=12)
of people having been discharged and 4% (n=19) had
disengaged.
3.56
24
The EIS provides clients with educational
materials about psychosis.
The provision of educational material was not
restricted to service users but was also provided to
partners, spouses, carers and siblings where
appropriate.
3.56
46
80% of clients are initially assessed at home or
in a community setting including primary care.
Two urban EISs did not comply with this statement
(both scoring 2). There was no apparent reason for
this.
3.67
18
The EIS completes an assessment on 90% of
clients referred to the team
All except 1 team scored 4 on this item.
3.67
52
The EIS is able to provide psychological
interventions for anxiety/social
phobias/avoidance.
The findings from the formative data indicated that all
EISs offered psychological interventions to both
service users and, where appropriate carers.
3.67
53
The EIS helps clients develop daily living skills,
where appropriate.
This activity was seen as an essential aspect of
delivering a holistic service in each of the EISs.
3.78
8
The EIS has 50% wte clinical psychologist per
250,000.
With the exception of one EIS, all teams complied
with this statement.
3.78
28
The initial contact with the family includes a
family psycho-educational approach.
Further evidence for compliance with this statement
was generated from two perspectives – that of the
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EIS team members and user and carer interviews.
3.78
30
Each EIS service user, family member or carer
knows how to access support in a crisis.
Accessing services ‘out of hours’ or in a crisis
situation was regularly documented in service
users’ care plans.
3.78
43
Formal multi-disciplinary reviews of EIS care
plan every 6 months.
Only one team (J) scored 2 in response to this
statement. However, this particular team was,
at the time when the Fidelity Scale was
distributed, undergoing a review of its service
configuration, which may explain the relatively
low compliance.
3.89
3
The EIS is a stand alone service composed of
staff whose sole or main responsibility is to the
EIS.
All the EISs that responded to the Fidelity Scale were
stand alone services. However, one team (H)
currently had two posts which they shared with
another mental health service and an agency outside
the mental health domain.
3.89
13
The EIS includes a formal assessment of
psychiatric history, mental state examination,
risk, social functioning, family and significant
others.
This was seen as important by all teams.
3.89
19
Each key worker has a caseload of 15 clients or
less.
One Urban EIS (A) noted a higher caseload.
3.89
25
The EIS uses low dose atypical neuroleptics as
the first line drug treatment, prescribing within
dosing limits as defined by the BNF for greater
than 90% of clients.
One team (F) did not comply with this statement.
There was no evidence to suggest why this was the
case.
3.89
33
No patient in the EIS has a duration of untreated
psychosis (DUP) of greater than 5 years.
One team reported working with a service user whose
DUP was longer than five years. According to the
evidence generated from the formative data, this
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person was, prior to being incepted into the EIS,
serving a prison sentence.
4.00
7
The EIS has one wte general adult psychiatric
nurse for every 250,000 population.
Total compliance was achieved.
4.00
14
Risk of suicide is routinely and formally
assessed according to protocol.
According to the audit data, no suicides occurred
during the life of the research project.
4.00
20
Almost all of service time (excluding
admissions) is spent in the community.
All EISs complied with this, demonstrating the
commitment of the services to provide support and
treatment in the least stigmatising environment.
4.00
21
Less than 10% of team clients commit and act of
self harm per year.
Audit data suggested that 7.3% (n=35) of the whole
cohort deliberately self-harmed.
4.00
35
90% of EIS clients are under the age of 35
years.
The mean age for admission according to the
descriptive analysis was 23 years.
4.00
36
The EIS team uses assertive outreach on a casesharing basis for those who are difficult to
engage.
Total compliance was achieved.
3.2.4 Regression results
DUP model
Table 36 shows the results of the regression analysis with DUP as the dependent
variable. The model shows both negative and positive associations between DUP
and the independent variables in the model. None of the baseline patient
characteristics of service users were significant in explaining variation in DUP. This
means that an individual’s age, gender or ethnicity was not important in explaining
movements in DUP. In addition, the education or employment statuses of service
users at 12 months were not a significant predictor of DUP.
In terms of descriptors of EISs, the results indicate that classification of active
teams according to their location (urban/suburban: rural) had no significant effect
on DUP. Neither did conformity to the PIG as measured by the Fidelity Scale.
Further, adverse effects or risks (i.e. parasuicides, incidents of DSH, violence or
perpetrated attacks) had no significant effect on DUP. Neither was service
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engagement status. However, service users referred to an EIS by their GP or
primary care team had the shortest DUP (about 70% shorter) when compared to
those referred by a psychiatrist, home treatment team or other sources. DUP for
those assessed under the Mental Health Act was also approximately 39% lower
than that of those who were not assessed under the Act.
Sectioning model
The logistic model shows both negative and positive associations between being
sectioned and the independent variables in the model. At 5% level of significance,
only two independent variables had a significant impact on being sectioned (Table
37). It is, however, important to note that a number of other variables were
approaching this significance threshold. Economically active students were more
likely to be sectioned than the general group of employed service users. The results
also indicate that being sectioned was associated with fewer parasuicide events
over the 12-month period.
Engagement status model
There was almost 91% engagement status at 12 months and this inevitably meant
that the engagement status dummy variable showed very little variability in relation
to other variables. Consequently, none of the independent variables in the model
were significant and are therefore not reported here.
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4 Discussion
After discussing the limitations of the study, this section draws together the
findings from both the formative and summative aspects of the research project
and uses them to respond to the aims and objectives set out both in the protocol
and the introduction to this report. Where appropriate, we have contextualised our
findings within the broader health and policy literature.
4.1 Limitations of the study
Study limitations related to lower than expected numbers in the audit, the limited
use of the VSSS-54 and the lack of costs data have already been discussed in the
section on deviations from the protocol. There were, however, a number of other
limitations in both the qualitative and quantitative aspects of this study.
4.1.1 User and carer interviews
Users were initially approached by their key worker to ensure that they were well
enough to participate in an interview. This might, however, have introduced an
element of 'selection bias.' The most challenging users, or those who key workers
may have felt would be critical of services may not have been included within the
sampling frame. We also only had ethical approval to interview carers if services
users gave their express consent. Eighteen services users agreed that their carer
could be approached for an interview, which, once again, may have excluded carers
with the most strongly held or critical opinions.
4.1.2 Limitation of descriptive statistics
As described in the protocol, audit data was collected at 12 months. However, on
reflection, it might have been more useful to collect data at baseline as well as at
12 months in order to explore changes in DSH and co-morbidity, living
arrangements and employment status. DUP was also collected in different ways by
different EISs. The research team made a clear decision at the beginning of the
study not to influence the way in which services were developing by suggesting a
standard way of collecting DUP. The variation between teams is an interesting
outcome in itself. However, in spite of the relatively short DUP across the EISs, it is
now difficult to place too great an emphasis on this finding in light of the nonstandard way in which it was measured. We only collected pathways data for the
final referrer in the patient pathway into the EIS. On reflection, it might have been
more useful to obtain data on the complete care pathway. However, not all teams
collected this level of detailed data and the variables described in the protocol and
collected during the study represented those that pilot work had demonstrated as
routinely available across all EISs.
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The fidelity scale, developed during the study and beyond the level described within
the protocol, has good face validity but there was insufficient team capacity to
complete test-retest reliability during the study time period.
4.1.4 Limitations of statistical models
The low R-squared values in the regression models highlight the low explanatory
power of the models. Although a model with a low R-squared is still helpful in
explaining variation in the outcome variable (Zheng & Agresti, 2000; Schemper,
2003), there is scope for improving the model fit of the regression models by, for
example, using a much wider selection of independent variables. Any conclusions
must therefore be tentative and take this limitation into account.
4.2 Objective 1: To provide information on key aspects of
EIS development and delivery to maximise the
effectiveness of emerging services
There are many different models of EISs worldwide although all are multidimensional, multi-agency and, according to Edwards et al (2000) share similar
components of:
dedicated multi-skilled teams that actively seek and accept referrals from
multiple sources
combined psychological / medication interventions aimed at reducing
secondary morbidity
a normalising philosophy that encourages adaptation to illness and a
focus on recovery
a youth friendly service
identification of carers’ needs.
Effective EISs also include partnership working between health and social care and
with service users and carers (Birchwood, 2000; Ovretveit et al, 1997). Most EISs
also share common factors of leadership by a clinician/researcher who fulfils
multiple roles (Wasylenki & Goering, 1995). Engagement with and advocacy for the
service user are also critical issues within most EISs (Edwards, Harris & Bapat,
2005).
In the UK, EIS National Policy Implementation Guidance (Department of Health,
2001) highlighted the importance of a number of these issues, and indeed many of
them were included as items in the EDEN fidelity scale. These key issues were also
addressed during the four rounds of data collection and the findings are
summarised and discussed here.
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4.2.1 Aims and visions of the services
Referral pathways into the teams varied from those which adopted an ‘open
system’, accepting referrals from virtually any source, to a more restricted
approach where the source was either another mental health team or primary care.
Advantages of a more flexible ‘open system’ of referrals included the ability to offer
a specialist EIS as early as possible in the developing illness. Some teams did,
however, mention that such an approach led to an increase in referrals, not all of
which were appropriate, but acknowledged that it was preferable to receive a phone
call from a concerned agency about an individual rather than not hear at all.
Offering education and training to potential referring agencies in relation to referral
criteria was seen as one means of overcoming this.
The ongoing challenge for recently developed teams was the need to ensure that
their services were promoted sufficiently to encourage appropriate referrals whilst
harnessing and controlling ‘over-enthusiasm’ and the consequential risk of being ‘all
things to all people.’ In this regard, it was suggested by team members that, during
the first six months of operation, limiting referrals to those received from other
mental health services was a pragmatic method of addressing this tension.
The majority of EISs had no formal, written exit strategy, but there was a strong
sense that once a person’s mental health had ‘stabilised’, discussions began to
focus on interventions needed to assist recovery and ultimately on plans for
discharge. Discharge was understood by the EISs as either referring a person on to
other mental health services (usually CMHTs), back to their GP or complete
discharge from health services.
With the exception of the entry into and exit from the services, there was
consistency in the type of approach adhered to by all the EISs in terms of service
availability, ‘out of hours’ and crisis cover, the implementation of an holistic
approach to FEP and the need to work with service users using a bio-psycho-social
approach.
The biological aspect focused on the need to treat presenting psychotic symptoms
promptly and effectively through the use of atypical anti-psychotic medication, with
the intention of reducing the need for in-patient treatment, the formal use of the
Mental Health Act (1983), rates of suicide, parasuicide and incidence of DSH.
From a psychological perspective, the overarching aims were to provide individuals
with the skills needed to help them live with and understand their psychosis and to
gain insight into early behavioural, cognitive and physiological signs of relapse.
Finally, from a social perspective, the aims included the need to offer support to
individuals in order to minimise the impact of FEP on their lives. By so doing, the
teams’ role was to help service users maintain social stability and social growth as
well as attaining or regaining their social networks in terms of appropriate
accommodation, accessing welfare benefits and vocational and social activities.
All services recognised the importance of working with the service user's family and
significant others, not only to increase engagement with the service user but also to
equip family members with knowledge of the illness and their role in providing
support and aiding recovery.
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Although all EISs seemed to have a clear notion of recovery and tried to
operationalise it, the concept as a whole has not been widely accepted within
mental health services. There is no single agreed definition of recovery and indeed
the largely consumer led literature from the USA suggests that it can mean
different things to different people at different points in their illness pathway
(Antony, 1993). There are also few conceptual models underpinning the notion of
recovery, (Lester & Gask, 2006) and policy tensions between different Department
of Health frameworks.
The National Service Framework for Mental Health (Department of Health, 1999)
and the more recent National Health Service Improvement Plan (Department of
Health, 2004a) both emphasise chronicity whereas The Journey to Recovery,
Department of Health, (2001b) highlights the importance of recovery. Indeed the
fifth of Ten Essential Shared Capabilities for the whole mental health workforce
formulated by NIMHE and the Sainsbury Centre for Mental Health in 2004 is
“promoting recovery”, (Department of Health, 2004b). Such different policy
imperatives, theoretical frameworks and aspirations for care can lead to problems
in creating environments, structures and processes that encourage recovery and
may need to be clarified if EISs are to continue to promote a recovery based
philosophy and service.
4.2.2 Issues of access
One of the key factors said to influence, and thus facilitate, the engagement
process was the extent to which the EIS was perceived as being accessible.
Accessibility in this context not only related to the hours of availability but also
whether the service was based in ‘ordinary’, rather than NHS mental health,
accommodation. Where this was not possible (either because of budgetary
constraints or the geographical location of the EIS), teams that used link workers
provided drop-in sessions in schools or youth centres, in order to maintain contact
in the least stigmatising environment possible.
Core working hours of the services tended to be Monday to Friday, 9.00 am to 5.00
pm. Yet, all services offered flexibility outside of these hours to accommodate
family work. Even though all services were prepared to work flexibly to
accommodate service users and their families, it was considered important to make
sure boundaries were also in place so that service users knew when team members
were not available.
It was noticeable that towards to the end of the data collection there had been an
increase in the number of evening appointments which, it was said, resulted from
significant improvements in the mental health of a number of service users which
enabled them to attend structured courses at local colleges, take up part-time
employment or return to work. Whilst the need for evening working was informally
recognised, one EIS felt that core hours should be formally extended to more
appropriately meet the needs of its users. In this respect, one service had
discussed extending its hours to 24 hours a day, seven days a week, however, lack
of PCT investment and a fear that a 24 hour service would encourage service users
to rely too heavily on the EIS rather than use their own resources and support
networks, were strong disincentives.
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Outside of the usual working hours, service users were encouraged to contact a
range of people if immediate assistance was required. These included their GP, the
duty psychiatrist, the ward (if they had recently received in-patient treatment), the
Crisis Team, Out of Hours Duty Social Work or any other agency listed in their care
plan. In instances where a Care Co-ordinator or other team member recognised a
deterioration in a person’s mental health that was likely to require some type of
intervention ‘out of hours’, then contingency plans were put in place over and
above care plan guidelines.
4.2.3 Youth sensitivity and engagement
Service accessibility, team members’ perseverance and youth sensitivity were
considered by EISs to be the key factors that facilitated engagement. For some
EISs, accessibility was equated with being located in a convenient position within a
town or city centre, which invariably benefited from regular and reliable public
transport. For others, it was the notion of user-friendliness; being based in nonhealth service premises and/or within close proximately to non-statutory
organisations (both mental health orientated and more those which were described
as being more generic).
Since engagement was perceived by all EISs as ‘the most crucial aspect of an EIS,’
team members used a variety of techniques, based on their own knowledge and
experience, to develop relationships with young people. These included helping
individuals to identify particular interests and/or concerns including access to
vocational or academic courses, addressing accommodation needs and facilitating
membership of social groups and networks. The preferred method specifically
during the early stages of engagement was to focus on the wider context rather
than on the impact of FEP per se.
Irrespective of the methods used to engage with service users, there was a strong
sense that they had to be sensitive to the needs of young people and delivered in a
responsive manner. ‘Thinking outside the box’ was a phrase used by a number of
EISs in relation to choosing suitable venues for meetings. In this respect, visiting a
person in their own home was not always viewed as an appropriate meeting place
and invariably options including McDonald’s, the local park, youth centres and
cafes.
A further significant factor appeared to be the degree to which service users were
encouraged to actively participate in the development of their own care plans.
However, there was evidence to suggest that promoting self-determination was a
change in culture for some team members, particularly those whose previous
experience was gained in in-patient facilities.
For some services, the significance of a youth focus had led to the employment of
Youth and Community Workers who had limited experiences of working within
formal mental health settings but significant expertise in working with young
people.
While this initiative was limited to two case study sites, the feedback from their
colleagues within these teams was positive. In EISs where no similar posts had
been established, links developed with Youth Workers based in other organisations
were said to be extremely positive, particularly in terms of these services’
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knowledge of allied agencies such as Connexions, schools, colleges, youth offending
teams and youth orientated activities. There was a strong sense therefore, that
EISs needed to get away from ‘traditional institutional mental health provision’ and
work jointly with less stigmatising services either by using their facilities or
developing group work activities.
4.2.4 Issues of stigma and stereotyping
Considerable emphasis was placed on addressing issues of stigma, stereotyping and
prejudice. This is critically important since felt and enacted stigma has a significant
role to play in future social exclusion through unemployment and reduced social
networks (ODPM, 2004). Fear of stigma and discrimination can also lead to severe
loss of confidence.
From one perspective, it was suggested that EISs fulfilled an important role in
minimising the impacts of these factors on service users by steering them away
from mainstream mental health services and into organisations that were described
as being more generic and community-based.
Another view highlighted the stereotyping of mental health services from users’
perspective. Here, it was suggested that service users held preconceived ideas
relating to mental health problems and their treatment, which, more often than
not, had been fuelled by inappropriate media reporting. This was said to be
particularly evident where terms such as ‘schizophrenia’ and ‘psychosis’ were used,
leaving service users believing that ultimately they would become ‘knife-wielding
lunatics’ which only added to their distress. Dealing which such feelings and
concerns was said to be an integral part of the work undertaken with the service
user as part of the recovery strategy.
A third perspective involved raising the awareness of this and educating people
within a service users’ wider network. One aspect of this involved the use of
psycho-educational material to address discriminatory behaviour by those in
primary care, educational establishments and workplaces. Three EISs noted that
they had hosted an ‘On The Edge’ theatre production, which looked specifically at
the challenges faced by people experiencing FEP.
Three different EISs had been invited to workplaces to address particular issues.
These tended to focus on ‘bullying’ of service users by colleagues who held
prejudicial views of individuals with mental health problems and concern on the
part of the employer in relation to the long term impact of FEP and the effect this
would have on their the service user’s productivity and ultimately the employer’s
business. In one example, an employer felt that providing mental health awareness
for all his staff was a means of proactively addressing issues of stereotyping and
discrimination.
This emphasis on work place discrimination has particular implications for the
recovery focus of EISs. In England, only 24 per cent of people with mental health
problems are currently in work, the lowest employment rate of any group of people
(ONS, 2003). In 2001, fewer that four in ten employers said they would consider
employing someone with mental health problems (ODPM, 2004). Read and Baker
(1996) found that 34 per cent of people with mental health problems had been
dismissed or forced to resign from their job, and that almost four in ten people with
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mental health problems felt they had been denied a job because of their previous
psychiatric history. Employment also provides latent benefits such as social identity
and status, social contacts and support, a means of occupying and structuring time
and a sense of personal achievement (Shepherd, 1998).
4.2.5 Service user and family involvement in care
There was consensus across the EISs that in terms of individual care plans and
indeed crisis plans, both service user and, where appropriate, carer involvement
was seen as an essential part of the care pathway. However, the extent to which
carers were involved depended on the wishes of the service user.
A small number of EISs had, or were in the process of delivering structured psychoeducation sessions to carers to enable them to continue to provide support for
service users.
4.2.6 Service users’ and carers’ experience of initial treatment
Nearly half of the users (n=14) who were interviewed were referred to the EIS
following a formal admission to hospital under the Mental Health Act (1983). For
the remainder, pathways varied from referrals made by Primary Care, the Probation
Service, drug and alcohol agencies, individuals themselves or their carers (family
members or partners). Two service users considered that they had experienced a
substantial delay between feeling unwell and being referred to the EIS. One of
these was a person recently discharged from custody and the other, a young
student who had experienced bullying at school. Until the impact of the latter
manifested as violence towards his father and brother, his family members
assumed that his behaviour was ‘normal for a teenager.’
The majority of service users reported that they initially felt anxious at the prospect
of being involved with a mental health service although this tended to resolve
following early contact with the teams where misconceptions about FEP could be
dismissed and the role and purpose of the EIS clarified.
Often service users who had been inpatients experienced the greatest fears related
to experiences within the hospital environment, particularly not being listened to.
4.2.7 Perceived utility of EISs from the perspectives of users and
carers
All service users reported that involvement with EISs had been positive. They spoke
of help with medication, relapse prevention, the provision of good support and
consequently, strong relationships with their key workers, help with motivation in
order to facilitate a return to education and employment, and support to reestablish self-esteem and self-confidence.
Furthermore, all service users reported that they were given options about where to
meet with the key worker and a considerable degree of flexibility in terms of what
activities (both structured and unstructured) were available.
Similarly, the majority of carers interviewed reported good satisfaction with the
services provided. Key aspects for them included the availability of staff, levels of
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reassurance, comprehensive support and a strong focus on building the confidence
and self-esteem of service users.
4.2.8 Availability of psychological interventions
During the early stages in the research project, it was apparent that the majority of
EISs had access to specialist psychological interventions provided either by the
psychologist based with the team or by the Psychology Department within the
Mental Health Trust. Likewise, both CBT and BFT were also considered, in principle,
to be widely available. However, in practice, a number of issues limited the
availability and efficacy of the therapies. For example, although psychologists were
not expected to undertake the role of Care Co-ordinator because of their
commitment to planned and structured interventions, CPNs and Social Workers who
were trained (to various levels) in BFT and CBT were required to also undertake
casework with service users and therefore needed to balance the dual nature of
their roles. This led to a degree of frustration when caseload commitments and a
consequently a lack of time prevented them from offering psychological therapies
as frequently as they wanted. Whilst family therapy training had been made
available to CPNs and Social Workers on a rolling programme, there were
insufficient opportunities for joint working with colleagues who had also attended
the training. Some felt that they would lose momentum, impetus and skills if the
time lag between their training and the opportunity to implement was too lengthy.
Group therapy was generally available, but there were issues surrounding the
location of such activities particularly where groups took place within the mental
health domain and facilitated by Day Centre staff. Generally, these were felt to be
inappropriate for the needs of the relatively younger people with FEP since many of
the clients had long-term 'chronic' psychosis.
By the end of the data collection, the most significant change noted in terms of
psychological therapies was an overall reduction in the type and level of service
offered across all the EISs. This was said to have resulted either from the departure
of psychologists or a general lack of time on the part of the Care Co-ordinators to
undertake pre-planned and structured interventions, or a combination of these. In
this respect only three of the carers noted that they were aware that psychological
therapies had been offered to the service user however, where this had occurred,
both the process and the outcome was seen as positive.
4.2.9 Treatment of co-morbidity
The most common co-morbidity across all of the case study sites and noted during
each period of data collection was substance misuse (drugs and/or alcohol).
According to the audit data, 39% of males and 18% of females presented with
associated problems. In order to address these, links were made with other
agencies to help service users with these issues, and in some EISs one or more
members of the team either possessed or developed specialist substance misuse
skills. Anxiety and depression, which were often associated with the psychosis
itself, were also commonplace and managed within the team.
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4.2.10
Professional roles and responsibilities
Within most of the teams, the role of Care Co-ordinator was primarily undertaken
by the psychiatric nurses or Social Workers, with psychiatrists and other medical
colleagues providing medical and other input as and when required. Occupational
Therapists and psychologists were considered as ‘valuable commodities’ providing a
different input within EISs. Psychologists, in particular, were seen as offering
planned and structured therapeutic intervention for service users. This made it
inappropriate for them to also work within the context of crisis resolution with
inevitable cancellation of sessions, creation of a waiting list and, ultimately, a less
responsive service.
An interesting tension was highlighted around the roles and responsibilities of the
psychiatrists in each of the EISs. Only five of the 14 teams had dedicated medical
input. The other services adopted an ad hoc system of requesting involvement from
local ‘patch based’ psychiatrists when medical cover when needed. This meant that
these EISs were largely run without direct psychiatrist/medical input or influence,
and that at times, psychiatrists were asked to provide advice and help on issues
outside of their core expertise. This often led to conflict in terms of the preferred
location on the medical-social spectrum of EISs and the assumed position of
psychiatrists.
The issue of the role of psychiatrists in EISs is explored in more depth in the SDO
funded EDEN Plus Project.
4.2.11
Financial management
See below.
4.3 Objective 2: To identify key components of successful
service configurations and their adaptation in
different geographical and socio-economic settings
and understand how local factors facilitate or hinder
EIS development
Ten of the 12 active EISs were stand alone services. It was not possible to use
service model as a variable in the logistic regression models because the two hub
and spoke model teams did not return their fidelity scale and therefore could not be
entered into the analysis. The models therefore included data from nine of the ten
stand alone teams. There is, however, strong evidence from the team member
interviews to suggest that they preferred the stand alone configuration. The two
EISs that used a hub and spoke model were both rural services that had
experienced considerable difficulty in obtaining consistent secure funding from their
local PCTs. Team Leads in both services, during the four rounds of data collection,
expressed the hope that this model would enable them to work more flexibility
across a large geographical region. Local funding stream problems also meant that
they felt any possibility of moving towards a stand alone service had been “lost in
the NHS overspend.”
Where cultural, and attendant language factors, were construed as key
determinants of a responsive service, several EISs reported difficulty in accessing
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reliable translators. The notion of reliability was not always related to working with
particular translators at specified times but was more concerned with their
knowledge of mental health problems. In this respect, it was noted that because of
the complex nature of the presentation of an individual’s symptoms and
experiences, subtleties were often literally lost in translation.
Furthermore, it was suggested that care needed to be exercised in terms of the
translator’s links or perceived links with particular communities in relation to
potential, albeit inadvertent, breaches of confidentiality. One example given to
demonstrate this point was the stated preference of a minority of BME service users
and their families to work with an EIS team member from a different cultural
background in order to minimise such concerns.
Several EISs noted an increase in the number of economic migrants from Poland,
Bosnia and other Eastern European countries who were invariably employed on a
casual basis. Alongside the difficulty of accessing appropriate interpreters, many of
these individuals were either not registered with a GP or they, or their ‘significant
others’, had little awareness of mental health services which led to a delay in
diagnosis and ultimately involvement with the EIS.
Issues associated with the concept of relative deprivation were noted in each of the
case study sites. Whilst the impact on service users can be described as similar
(poor housing, unemployment, low income etc), the factors affecting the
development and delivery of EISs within the wider context, establishing links with
employment services, youth counselling, substance misuse services, was said to be
additionally dependant on the geography of an area. In particular, those EISs which
served predominantly rural areas, found that apart from the difficulty in
establishing links with complementary organisations, distance between centres of
population and indeed between service users’ homes, meant that considerable time
was spent travelling.
Conversely, EISs based in inner city areas considered themselves as having
relatively good access to various community and voluntary organisations. Some
teams had not been able to reflect the cultural diversity within the make up of the
team, but had been proactive in providing this by developing close links with
relevant agencies.
All of the EISs were given an opportunity at each point of data collection, to identify
factors which they felt hindered or facilitated the development and delivery of a
responsive service. These are described in the following two sections.
4.3.1 Hindrances
Five key themes, which were construed as hindrances, emerged, most of which
were underpinned by not having access to appropriate resources. First, there was
strong evidence to suggest that funding, or more specifically realistic and recurring
funding, was a key factor in determining the development of EISs. In a minority of
services, where funding was secure, a predominantly proactive rather reactive
service had developed. However, for the majority of EISs, funding was perceived as
insecure which meant that planned activities were governed by a ‘stop-start
approach’, which gave rise to feelings of frustration and low staff morale.
Furthermore, several EISs experienced delays is receiving confirmation (or
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otherwise) of increased funding. This was usually the case where demand for the
service had outstripped capacity and requests had been made to increase the staff
budget. A source of frustration for several EISs was therefore, that while there was
a tentative acknowledgement at the outset by commissioners and/or senior
managers that staffing levels would need to increase on an incremental basis, this
was not always actioned. The outcome at a service level had been either the
introduction of different working practices or some form of temporary mechanisms
to decrease workload such as a waiting list.
Second, for the small minority of relatively well-financed services, developmental
and promotional work had been identified as an integral part of establishing an
effective EIS. Commissioners and senior managers were aware that the
development of a holistic service necessarily involved agencies both inside and
outside of the mental health domain, and that establishing working relationships
with them took time. However, for the majority of EISs, this factor appeared not to
have been taken into account in the initial budget setting, which led to teams
having to prioritise what little time they had for developmental work in a way that
ensured positive outcomes. Consequently, considerable efforts were made in terms
of working with colleagues in primary care and other mental health teams to try
and encourage appropriate referrals. Where other opportunities for development
work arose, the emphasis tended to be on networking with young people’s agencies
including the youth service, Connexions, who were able to provide a valuable
contribution in meeting service users’ needs.
Third, the majority of EISs experienced problems in recruiting or retaining team
members, particularly Social Workers. Here it was suggested that during the
developmental stage of the service, little consideration had been given to the skills
and experience that Social Workers could bring to the team. However, where social
work post had been established, it was suggested that the post holder had felt
isolated in a team consisting mainly of nurses and that this had prompted them to
either leave sooner than expected or go on sick leave.
Fourth, a perceived hindrance was noted as being the lack of a dedicated
psychiatrist in seven of the teams. This was described as being an on-going
problem, which was thought to be exacerbated by delays in securing agreement on
the content of the job description, a lack of funding and an apparent disinterest in
vacant posts.
Fifth, not all teams felt that their office base was conducive to engaging with young
people during their first experience of mental health services. Often team bases
were described as being not easily accessible, inadequately sized and poorly
equipped. There was a strong sense that, from the outset, insufficient thought had
gone into identifying suitable accommodation that was non-stigmatising and
welcoming.
4.3.2 Facilitators
Five key facilitators were identified. First, ownership and understanding of the role
and purpose of EISs by those involved in strategic and operational decision-making
within the locality was considered to be extremely important. In particular, one of
the benefits of strategic support included a sense that the development of an EIS
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was not just a response to central government objectives, but was a means of
working responsively and flexibly with young people with psychosis.
Second, at a team or peer level, two significant facilitators were identified - the
experience and attitudes of individual team members and the development of a
collaborative and cohesive team ethos. In this respect, personal attributes of team
members or potential team members were rated more highly than qualifications
since cohesiveness and dedication to the principles of EISs were thought to be
borne out by employing the ‘right people for the job’, ‘having a wide-range of
experiences and skills’ and ‘the energy to make something you believe in work.’ As
a result of working in a supportive environment, several team members expressed
the view that their competence and confidence levels had increased. Here,
emphasis was given to having opportunities to ‘try out new things, new ways of
working.’ This was construed as being particularly significant given the age range of
the service users.
Third, the presence of ‘local champions’ in terms of EI Leads was considered to be a
significant factor during the early stage of development. There was a strong sense
that such individuals had both the knowledge and skills to influence those who
occupied senior management positions and were thus instrumental and active in
strategic decision-making processes. Moreover, ‘local champions’ were said to have
credibility within their respective employing organisations and this was seen as a
means of engendering support for EISs within senior management groups.
However, as time went on, the dependence on ‘local champions’ appeared to
change or in some respects diminish since team members themselves, felt better
equipped to take on this role as their confidence in working with FEP increased.
Several key characteristics of leadership have been described. Reinertsen suggests
leaders as initiators who “define reality often without data” (1998; 834). He
suggests that leaders develop and test change, persuade others and are not
daunted by loud, negative voices. In many senses the ‘local champions’ identified in
EDEN also share similarities with Kotter’s notions of leadership (Kotter, 1995). They
established a sense of urgency of the need for new services, identifying key
problems in current services and harnessing the views of users and carers. They
created multi-disciplinary services and formulated a vision of the service they
wanted to develop. Almost all of the ‘local champions’ had introduced new
practices that made short term change possible. Occasionally they were also able to
create a permanent change in the system (for example in the Birmingham EIS) and
enabled long-term commitment from all parties to EI.
There is, however, a tension between needing a ‘local champion’ to help create and
sustain EISs yet also ensure that the service continues to work effectively if that
individual moved on. During the EDEN data collection, at least two services went
through periods of instability related to key team members leaving to take up new
senior mental health roles. The link between the movement of key personnel and
the draining of energy, purpose, commitment and action from major change
processes has indeed been noted by a number of other researchers (Kanter, 1985;
Pettigrew, 1985).
However as Georgiades and Phillimore, (1975) argue, the presence of a hero
innovator or ‘local champion’ is not the only way to create service change. They
suggested guidelines that form a strategy for change that included the importance
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of support from slightly lower down within an organisation where the personal
commitment is perhaps slightly less but where the drive for achievement may be
even higher than at the very top. The EDEN study team noted that EISs that had
achieved a certain critical mass and had particular energy and commitment from
the majority of team members appeared to be functioning well on an organisational
level. Indeed, EISs where each member was an individual champion were perhaps
more stable than services where the single ‘local champion’ made all the decisions.
Fourth, all the EISs found the opportunity to network with colleagues in other
services as extremely beneficial. In particular, the region network meetings were
seen as offering support and advice to newly established or emerging teams and
provided a forum where issues specifically relating the development and delivery of
services could be discussed ‘in safety’.
Fifth, there was a strong sense that working with other agencies and organisations
both within and outside of the mental health domain had generated positive
outcomes, not just for the team members in terms of skill or knowledge
development but also for service users. A notable feature of service delivery,
particularly towards the end of data collection was the sheer range of agencies with
which the EISs had forged links in an attempt to gain access to relatively less
stigmatising services for their clients. The importance of partnership working is
discussed and contextualised within the wider health and social care literature in
the EDEN Plus report.
4.4 Objective 3: To understand the importance of the
effect of structural relationships between Primary
Care Trusts, Mental Health Trusts and Social Care
Trusts on commissioning and/or providing EISs and
identify lessons for future development of EISs
within a whole-systems approach to mental health
Five key themes emerged in relation to the structural relationships between PCTs,
Mental Health and Social Care Trusts, which have a significant impact on the
planning, commissioning and development of EISs. These are summarised below.
The majority of commissioners viewed inexperience in their role or taking up a
newly created post as having a detrimental effect on their ability to develop
organisational relationships both within their own organisation and on a wider interagency basis. Less experienced commissioners were not able to fully engage with
other potentially key groups who should have been involved in the planning and
development of EISs such as service users and carers and other statutory and nonstatutory organisations. Previous reviews of the barriers and organisational
development needs for effective PCT commissioning of mental health services found
similar issues (Lester & Sorohan, 2003). Lack of understanding of their roles and
responsibilities and also insufficient experience in mental health commissioning
have both been previously noted (Power, 1997; Peck & Greatley, 1999) as
hindrances to effective commissioning.
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4.4.2 Organisational culture
In general, PCT commissioners reported poor relationships between the different
agencies involved in developing EISs. A number of PCT commissioners suggested
this was due to differences in organisational culture and structure and a lack of
commitment on some organisation’s behalf in encouraging partnership working.
However, such difficulties were said to be often underpinned by insufficient
resources, recent organisational restructuring or the degree of ‘maturity’ of
different organisations.
A significant number of the PCT commissioners described how they felt that there
was a degree of stigma attached to their roles as commissioners for mental health.
This had an effect on their ability to carry out their commissioning role by reducing
their potential to develop intra and inter organisational relationships. Several
commissioners felt the PCT placed a low priority on mental health reflected by the
lack of organisational commitment to the mental health-commissioning role.
4.4.3 The depth and quality of organisational relationships and
their impact on the commissioners’ role
The quality of relationships between different organisations appeared to be an
important factor in commissioner’s ability to carry out their role effectively. The
development of ‘quality relationships’ between different agencies appeared to be
significant at a number of levels, and within and between organisations. It was
suggested that where good quality relationships were in place within organisations,
more effective commissioning occurred. Conversely, where poor relationships
existed particularly at an inter-organisational level, and involving representatives
from social services, education and CAMHSs, service development was said to be
often hindered.
4.4.4 Structural relationships between organisations and
implementation issues
One area where inter-organisational relationships was particularly significant was
the interface between the SHA and PCTs, Mental Health Trusts or Social Care
Trusts. Generally the relationship between these organisations was perceived as
hierarchical; policies were formulated at a national level, interpreted at the PCT
level and implemented in by the EISs at ‘ground level’. Some PCT executives
reflected that in their opinion this was the most satisfactory way of introducing new
policy since they felt that the top-down approach gave them the element of control
required for successful implementation of the new and potentially complex policy.
They were, in effect, supporting ‘top down’ theories of implementation, with policy
formulators at the top of the chain and those who implement the policy at the grass
roots level at the bottom (Pressman & Wildavsky, 1984). Top down policy relies
heavily on control and assumes that those at the bottom will carry out instructions
unquestioningly.
Tensions however, occasionally arose with the ‘top down’ approach. This was
mostly focussed on the dual role of the SHA in terms of monitoring and
performance management and also strategic development. A number of
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commissioners felt that their relationship with the SHA was censorial rather than
facilitative in nature, particularly in terms of achieving Government-set targets.
At the opposite end of the spectrum, some PCT commissioners were trying to
develop EI policy from the ‘bottom up’, adapting and responding to their local
environment and patients’ ideas which were not always in concordance with
national policy. This ‘bottom up’ approach reflects Lipsky’s concept of ‘street level
bureaucrats’ and suggests that in terms of implementation, it is the workers on the
ground who develop their roles from the ‘bottom-up,’ adapting and responding to
the human dimensions of the environment they work in (Lipsky, 1980).
Horizontal implementation theory suggests that policy is implemented as a result of
continuing interactions between a number of players who negotiate and interact
until a consensus is achieved (O’Toole, 1988). Horizontal methods often include an
element of leadership, with a named individual managing the relatively autonomous
individual stakeholders and facilitating communication. It may be that in future, this
offers the most constructive way forward in terms of implementing EISs.
4.4.5 Strategies to overcome barriers to relationship development
Most commissioners had good insight into the nature and quality of the
relationships between the different agencies they worked with. Some
commissioners made suggestions how barriers to developing relationships might be
overcome or described how they had already been addressed. Suggestions included
simple measures such as inter and intra-organisational meetings. One
commissioner felt all that was needed was time for the organisations to mature
within a more stable policy environment, echoing previous work that suggests
constant infrastructure changes and policy waterfalls can be barriers to clear and
consistent commissioning strategies (Glasby, Lester, Clarke et al, 2003). Others
discussed the value of more in depth measures such as systematic and inclusive
changes to the ways organisations interact within the NHS on a wider level, the
creation of Joint Health and Social Care commissioning posts, merging
organisations together to reduce bureaucracy and the need for significant
investment.
4.5 Objective 4: To provide information on the
relationship between different service configurations,
fidelity to national EIS guidance and key pre-defined
outcomes such as duration of untreated psychosis
(DUP).
In order to explore this objective, we employed regression modelling to explore the
variability in DUP and use of a section of the Mental Health Act (1983) (see section
7.2.2). Since all but two of the teams were stand alone in nature, we were unable
to explore the relationship between service configuration and key outcomes.
4.5.1 DUP model
Norman and Malla (2001) highlight the importance of thorough understanding DUP
and its correlates and the results obtained in this study are important in that
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respect. Our results have not shown any significant association between age and
gender on one side and DUP. Other studies have, however, shown that longer DUP
is associated with younger male patients (Johannessen et al, 2005; Larsen et al
1998; Larsen et al 2001; Leung & Chue, 2000; Norman et al, 2005). It is, however,
important to note though that the trend in these variables, though not significant, is
in concordance with these findings. However, while Kalla et al (2002) found gender
to be significantly associated with DUP (men had a longer DUP than women), no
significant relationship was found between age and DUP in EDEN.
Though not significant, the trend for individuals living alone shows that they had a
longer DUP than that of those who were living with someone. A possible
explanation could be the possibility that this group may have been socially isolated,
an attribute Drake et al (2000) found to be significantly associated with longer DUP.
If this were assumed to be true, then there may have been an issue of late
detection as well - which has also been shown to be linked to longer DUP (Larsen et
al, 2001).
Although our results did not find a significant relationship between DUP and
employment status, the trend in the employment variable does show that longer
DUP was associated with unemployment, in line with results from other studies
(Kalla et al, 2002).
The result showing that service users referred by GPs were associated with shorter
DUP is in agreement with results from a German study reported by Fuchs and
Steinert (2002).
Those assessed under the MHA had a shorter DUP. Previous work has suggested
that DUP is associated with the severity of negative symptoms (Perkins et al,
2005). Conversely, we hypothesize that the presence of positive symptoms could
bring the individual to the notice of police or health service personnel and trigger an
assessment at an earlier stage.
4.5.2 Sectioning model
In variance with other studies such as Cole et al (1995), we found a significant
positive relationship between being sectioned and the involvement of a GP or
primary care team. These results should, however, be viewed in context that only
13% of service users entered EISs via this route. This proportion is much smaller
and may therefore not be as representative as that in other studies (e.g. 50% in
Lincoln at al, 1998).
The non-significance of ethnicity in relation to sectioning is also inconsistent with
previously published results (Burnett et al, 1999; Davies et al, 1996; Morgan et al,
2005). A possible explanation for this result could be that, unlike this study, the
focus of previous research has been on the differences between two ethnic groups:
Whites and African-Caribbeans without considering other ethnic groups. A study
that also considered Asians (Cole at al, 1995) found ethnicity not to be a significant
determinant of compulsory admission (including sectioning). In addition, Burnet et
al’s study (1999) also reported significant results for readmissions and not first
contact.
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4.6 Objective 5: To explore reasons for variation in the
costs associated with the delivery of EISs
The research team has not been able to meet this objective for two following
reasons. First, throughout the four rounds of data collection, availability of
resources was consistently mentioned as the greatest challenge to implementing
EISs. At varying points it led to problems with recruiting staff, coping with
workloads, led to changes to eligibility criteria and length of time spent with service
users and in some instances, hindered the flexibility and creativity services. These
problems also created a sense of competition between the services for scarce
resources. This led to considerable sensitively in providing information to the
research team about resources.
During the final round of data collection, when we had expected to collect detailed
cost data, all of the EISs were engaged in what was frequently described as
‘delicate negotiations’ with their respective Trusts and PCTs and were therefore
reluctant to disclose any information about their actual or proposed budgets.
4.7 Implications for Local and National Policy
4.7.1 Implications at a local level
1. There needs to be greater clarity and transparency over funding
mechanisms
Perhaps the most important implication both locally and indeed nationally is the
need for greater clarity and transparency over funding mechanisms for EISs. There
is also a need for services to be assured about the recurring nature of funding to
help plan service development at a strategic level and the balance of case work and
developmental work.
2. PCT expectations need to be clear and linked to funding streams
There appears to be a significant emphasis by PCTs and SHAs on achieving targets,
particularly in terms of caseloads. This, however, can create tensions at a team
level between the quality of the service and the quantity (number) of young people
accepted into the service. Clarity over the expectations of all parties, linked to
clarity over funding, would be helpful.
3. Service user and carer involvement needs to be encouraged more
proactively
There is little evidence of service user or carer involvement in most of the EISs.
This is related to lack of time for developmental work and also to some extent by
service users’ desire to recover and move on rather than necessarily making a
“career” as a mental health service user. However, a minority of teams have
successfully engaged a service user as a team member and this appeared to have a
positive effect on team ethos. Service users saw it as a means of encouraging
recovery and improving social networks and economic circumstances at an
individual level. Above all, it demonstrated the importance of the user perspective
in service development.
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4. Tensions in encouraging genericism within a specialist services need to
be recognised
All except one team were multi-disciplinary in nature. Teams were therefore able to
provide a range of skills to service users and carers. However there is a need to
recognise tensions that can occur when encouraging genericism within the team yet
also valuing the specialist skills that all team members bring.
5. Better communication strategies are required between teams
Good communication strategies with local mental health teams appear to be key.
This is important in terms of developing entry and exit strategies into EISs and also
for developing good relationships between different parts of the wider mental
health system. There were indications that EISs felt some CMHTs perceived them
as elitist, as poaching staff and as having a less intensive work load because of
their smaller case worker: client ratios. Better communication strategies would help
different teams appreciate their relative strengths.
6. PCT commissioners need a more in depth understanding of EISs
At a PCT level, commissioners need to develop a greater understanding of how EISs
work. This requires greater stability at a PCT level in terms of personnel and the
appointment of commissioners who understand or are willing to learn about the
intricacies of mental health care.
7. PCT commissioners need to understand the intricacies of partnership
working
The significant policy emphasis on joint working between different sectors within
the NHS (e.g. CAMHS and EIS), health and social care, health and the voluntary
sector and on greater public involvement in service design and delivery mean that
understanding partnership working issues will become more important in
commissioning EISs in future.
8. PCT commissioners need to recognise the stigma of mental illness
PCT commissioners need to recognise that the stigma of mental health may affect
PCT opinions on the importance of commissioning good quality mental health
services.
9. Clearer lines of communication are required between EISs and CAMHSs
Greater clarity is required about the relationship, roles and responsibilities and joint
working policies between CAMHSs and EISs, particularly as some of the services
move towards developing a much stronger youth focus through employing specific
Youth Workers. This could be facilitated through clearer lines of communication and
a stronger emphasis on joint working.
10.Excellent service engagement strategies could be generalised across
England
Service engagement was uniformly excellent across all services. This suggests that
other EISs could learn from the experience in the West Midlands in terms of
developing successful engagement strategies.
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11. Developmental work in the community requires greater focus and
funding
The mean DUP across services in the West Midlands is 16 weeks. Although teams
frequently said that they had a little time for developmental work, the fact that the
DUP is so much lower than many other reported DUPs, suggests that in fact the
developmental work and community connections described by teams may be
having an influence in raising awareness of early symptoms and signs of psychosis.
4.7.2 Implications at a national level
These recommendations need to be tempered by the knowledge that they are
based on data collected from one geographical area of England. However the study
included all EISs across a large geographical region, with variations in deprivation,
rurality and population demographic background.
1. Better communication about the value of EISs is required at a national
level
There is a need to communicate the value of early intervention services at a
national level so that the wider mental health community understands their roles,
responsibilities and value.
2. Flexibility to the PIG is required to take different locality needs into
account
Slavish adherence to the Policy Implementation Guide at a national level may not
fit the increasing move towards a youth service in some areas. Although the mean
score on the Fidelity Scale was 200, suggesting a good fit with PIG for most
services, flexibility may be required in future as services reshape in response to
funding constraints, user preference and the emerging evidence base.
3. Funding for EISs needs to take into account local needs
It is important that service commissioners appreciate the flexibility required in
terms of EIS shape, form and function. There needs to be flexibility to enable the
development of locally sensitive and appropriate EISs depending on whether the
EIS is an a rural area, the availability of voluntary and community sector services
and the socio economic characteristics of the client group. The funding for EISs
does not currently reflect these local factors yet, we would suggest, needs to.
4. The EIS recovery focus needs to be championed beyond the immediate
service
The importance of a recovery focus was an important issue in interviews with EIS
team members, users and carers. This is not yet, however, a widely promoted
concept within mental health services. Notions of recovery can be encouraged
through the promotion of positive images of mental health as well as combating
negative stereotypes of illness, employment of services users within EISs and
carefully planned exit strategies from EISs. Partnership working with the VCS can
help create innovative education and training opportunities that actively encourage
a belief that a return to normal life is not only possible, but indeed probable.
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4.8 Conclusions
EDEN has provided unique and timely information to help guide the national
implementation and development of EISs. It has identified key professional,
organisational and cultural barriers and facilitators to change at different levels of
the NHS as this major service innovation is gradually rolled out across the country.
Many of the findings support Pettigrew et al’s (1992) work on key factors within the
NHS that provide a linked set of conditions that facilitate change. These include the
importance of a vision which is sufficiently broad to allow interest groups to buy
into the change process; the need for a horizontal implementation process that is
informed by coherent and sustained local policy; the need for key people in critical
posts that can lead the change process (although they also highlight the danger
when this key person leaves and the fact that organisations can go into a period of
regression at this point); collective leadership; financial stability; a strong values
base and positive self image; good communication between managers and
clinicians; co-operative inter-organisational networks and clear goals and priorities.
However, above all, as Rosen suggests:
‘There is no absolute reliable cookbook or bible for developing new systems of
care…The recipe may vary, and the ingredients may be put together differently in
different places, according to demography, culture, government policy and
resources’
(Rosen et al, 1997: 40)
4.9 Dissemination and communication
4.9.1 Conference presentations
During the past three years, we have aimed to present formative aspects of the
study on at least once occasion each year to a national or international audience.
Papers have already been presented at the following conferences:
Lester HE. Evaluating the development and impact of early intervention services:
The EDEN study. Study Launch conference. Birmingham, November 5th 2003.
Lester HE. Evaluating the development and impact of early intervention services:
The EDEN study. 4th International Conference in Early Psychosis, Vancouver,
September 28th –October 1st 2004.
Lester HE. The EDEN study. NIMHE Early intervention in psychosis conference.
Stafford University. March 4th 2005.
Rogers H, Birchwood M, Lester HE. The Eden Study. NIMHE/Rethink National EI
Think Tank. February 7th 2006.
Lester HE. The EDEN study. Heart of England Mental Health Research Network
Conference. Birmingham. June 29th 2006.
Lester HE, Birchwood M, Rogers H. The Eden Study: myths and realities of EIS. 5th
International Conference in Early Psychosis, Birmingham, October 5th-8th 2006
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Lester HE, Birchwood M. The Eden Study. Hearing Voices. Toronto. October 15th16th 2007.
We will also continue to work with NIMHE/CSIP to disseminate the study findings at
regional and national mental health events.
Lester HE, Birchwood M, Rogers H. The Eden Study: myths and realities of EIS. 5th
International Conference in Early Psychosis, Birmingham, October 5th-8th 2006
We will also continue to work with NIMHE to disseminate the study findings at
regional and national mental health events. Indeed we have arranged a NIMHE
sponsored dissemination conference in Birmingham on September 29th 2006 to
which all West Midlands EIS Leads and nominated services users and carers have
been invited. We will use this to feed back study findings to the people who helped
us as interviewees throughout the last three years. We will also encourage them to
invite local PCT/VCS representatives to the event to help them better understand
the facilitators and barriers to developing EISs.
4.9.2 Publications
We have discussed both the publication strategy and authorship criteria at our
steering group and the publication policy is attached as Appendix 13.
We intend to publish a series of papers in high impact factor peer reviewed journals
aimed at an academic audience in 2007/8. We will also work with our contacts at
Rethink and IRIS (Initiative to Reduce the Impact of Schizophrenia) to enable the
study findings to be disseminated through their web based media and newsletters.
We plan to submit the following peer reviewed publications:
1. Paper summarising the main qualitative and quantitative findings of the EDEN
study written for the British Medical Journal (autumn 2007) IF 7.0
2. Paper with a strong policy focus, detailing facilitators and barriers to the
implementation of new services in the context of EISs written for Health Affairs
(autumn 2007) IF 3.5
3. Paper with a predominantly theoretical focus, detailing how different
organisational culture and professional backgrounds affect the development and
efficacy of services written for Sociology of Health and Illness (spring 2008) IF 1.32
As a team we have decided to concentrate on writing high quality data filled papers.
However ideas for other papers may emerge as we write these main key papers.
The EDEN team has also contributed two chapters to the forthcoming edited book
Promoting Recovery in Early Psychosis (to be published by Blackwell in 2007). One
chapter will focus on service engagement and the other on pathways into EISs and
both will be informed by the data in the EDEN study.
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4.10
4.10.1
Recommendations for Future Research
Fidelity scale
We continue to develop the Fidelity Scale. We recently sent it on two occasions
separated by four weeks to the 31 EISs in the First Episode Research Network
(FERN) and 80 EISs identified for us by the NIMHE to assess test-retest reliability.
Thirty-one of the 111 (28%) EISs returned completed scales. We also intend to
shorten the scale by removing items with the lowest correlation coefficients. Our
final scale will enable researchers in future to assess how well the EI model was
implemented and will also be essential in clinical practice to evaluate the degree to
which a team with the early intervention ‘label’ is actually adhering to the specifics
of the model.
4.10.2
Cost effectiveness studies
As described in the deviation from protocol section, we were unable to collect costs
data but such information, in combination with user and carer satisfaction and user
outcomes is critical in ensuring the best use of financial resources. In particular, as
some EISs adopt an increasing youth service approach, employing Youth Workers
and STR workers as well as/instead of CPNs, comparison of costs and patient level
outcomes between different services models and configurations would provide
interesting if potentially contested data.
4.10.3
Service user and carer perspectives
The EDEN protocol described interviewing services users and carers at one point in
time. However it might be interesting to see how views and opinions change as
they became more used to the EIS, to the notion of having had an episode of
psychosis, during the recovery phase or after a relapse. Future studies could focus
on a longitudinal “pathways” approach to services user and carer experiences.
4.10.4
Quantitative outcomes
A key evaluation question is whether specialised treatment of FEP in an EIS is
associated with a range of improved outcomes. Whilst trials in this area are possible
and indeed have been performed (Craig et al, 2004; Nordentoft et al, 2002), there
are a series of ethical implications in withholding specialised care from this group of
patients.
4.10.5
The National Eden study
The National Eden Study (PIs Birchwood and Lester, PRP/MHRN £1,600,000 20059) is currently exploring most of these research issues. With a sample size of 940
people first episode psychosis incepted into services using different configurations
across England, we hope that critical questions including cost effectiveness and the
effect of service model on outcomes will be addressed.
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Appendices
Appendix 1: Letter of contact for PCT and commissioning
leads
Division of Primary Care
Public and Occupational Health
Department of Primary Care
And General Practice
Primary Care Clinical Sciences
Building
Edgbaston
Birmingham B15 2TT
United Kingdom
Fax +44(0) 121 414 6571
Email general-practice@bham.ac.uk
http://medweb.bham.ac.uk/gp
Head of Department
Richard Hobbs FRCGP
Professor of Primary Care and
General Practice
Dear ******
I am writing to you on behalf of the Department of Health (DOH) funded EDEN
Study to ask for your help in an evaluation of the planning, commissioning and
implementation of Early Intervention Services (EISs) in the West Midlands area.
The DOH has invested over £2 million in understanding how best to develop,
commission and implement EISs through EDEN, EDEN Plus and National EDEN
studies. During the last few months, I have identified a number of key individuals,
including yourself who have been involved, to a greater or lesser extent, in the
strategic planning, commissioning and implementation of EISs and I hope to
interview as many of these individuals as possible to gain an insight into the
challenges involved in developing EISs.
The EDEN study has been funded by the NCCSDO Programme of Research on
Models of Service Delivery and Organisation and forms part of a larger group of
studies funded by the SDO: EDEN Plus and National EDEN. At present there is little
evidence to help practitioners, managers, purchasers and providers understand the
best way develop or deliver EISs. The results of this survey will be fed back
anonymously to the Department of Health to help provide information about
implementation and commissioning of new services and shape future service
delivery.
I would like to emphasise how important your views are as one of the key
individuals involved in the development of these services. Attached to this email is
a copy of the study information sheet, which explains the study more fully.
Participation will involve a half hour biannual interview for two years.
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I will be contacting you shortly by telephone or email to arrange a date, time and
place for the interview if you feel you would like to participate. I would be grateful if
you would return this email indicating whether you would be keen to participate
and a contact telephone number allowing me to contact you and discuss this more
fully.
Best wishes
Dr Elizabeth England
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Appendix 2: Study information sheet for PCT and
commissioning leads
The EDEN Project
Evaluating the Development and Impact of Early Intervention Services (EISs) in the
West Midlands (The EDEN project).
The study
Up to three per cent of people in the United Kingdom (UK) have a serious mental
illness. At present, we know that many young people have symptoms of serious
mental illness for over a year before receiving treatment, and that a long delay is
associated with slower recovery and a greater chance of relapsing. We also know
that early effective treatment can improve chances of making a good recovery and
the quality of life both for the individual and their family.
The Department of Health in England (as part of the National Plan for the NHS) has
agreed to establish 50 new early intervention services (EISs), mental health teams
that prioritise the care of people aged between 14-35 years with a first episode of
serious mental illness. However, there is at present little evidence to help
practitioners, managers, purchasers and providers understand the best way
develop or deliver such services.
The EDEN study has been funded by the NCCSDO Programme of Research on
Models of Service Delivery and Organisation. The study runs for 3 years from July
2003 with data collection active from March 2004 to February 2006. It aims to
evaluate the organisation and delivery of new EISs across the West Midlands and
provide important information that will help to ensure services are effective and
sensitive to the needs of young people.
The study uses a multiple-case study approach to describe EIS development,
explore the relationship between different EIS configurations and outcomes and to
establish the extent to which different EISs are following the Department of Health
guidelines in this area of health care.
Members of the study team are in regular contact with the 14 operational and
emerging EISs across the three Strategic Health Authorities (SHA) in the West
Midlands and interviewed 46 EIS Team Leads and team members during the
summer of 2004. The study team has also observed team meetings and have
reviewed documents, both strategic and operational relevant to particular sites.
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Who is being interviewed as part of EDEN?
Each member of the EDEN team has a different role. Team members are
interviewing the EIS team members and Team Leads, service users and carers, GPs
and PHCTs and key individuals from the fourteen PCTs, Mental Health Trusts and
three SHAs across the West Midlands region.
Involvement in EDEN
Key individuals who have been involved (whether to a lesser or greater extent) in
the planning, commissioning or implementation of EISs will be invited to participate
in an interview lasting approximately half an hour. Interviewees will be provided
with an interview topic guide prior to the interview, which is intended to stimulate
discussion rather than be prescriptive as my aim is to explore the views and
opinions of those interviewed. The EDEN study is taking place over a two year
period to develop a longitudinal perspective of service development. Participation
will involve a half hour interview on an approximately six monthly basis over the
two year period.
Interview schedules will be provided before hand.
All interviews will be audio taped and transcribed with a copy being sent to the
interviewee for their approval, comment or clarification if necessary.
If possible I would also like to review documentary evidence to corroborate and
augment evidence from other sources. Documentation might include administrative
documents, service protocols, national policy or implementation guides, agendas
and minutes of meetings, and articles appearing in the mass media.
No other teams will have access to your data, and anonymity will be preserved at
all times.
All interviews will take place at a time and place convenient to you.
Who am I?
My name is Elizabeth England. I am one member of the EDEN team. I am a parttime GP in the HOB PCT and a Clinical Research Fellow in the Department of
Primary Care and General Practice. I can be contacted on
LizE@medgp3.bham.ac.uk or 07976 297942. I am more than happy to clarify any
further points or questions you might have. The evaluation team is based in the
Department of Primary Care, University of Birmingham and is co-led by Dr Helen
Lester (h.e.lester@bham.ac.uk) 0121 414 2684, Department of Primary Care and
Professor Max Birchwood, Department of Psychology and Director of EIS in Aston,
Birmingham. Also involved in the Team are Dr Helen Rogers
(h.j.rogers@bham.ac.uk), Nicola Jones-Morris (n.m.jonesmorris@bham.ac.uk) and
Julie Richards (j.m.Richards@bham.ac.uk). All will be happy to answer any queries
or questions you may have.
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Appendix 3: Interview topic guide for PCT and commissioning leads
Semi-structured interview schedule for those involved at a SHA level in
planning, commissioning and implementing specialist mental health
services such as EISs
SHA role
Performance management of trusts
Developing strategy for mental health for SHA area
Promoting collaborative working practices with wider organisations
(NIMHE, Kings Fund, social services, housing, workforce issues)
through leadership, co-ordinating role.
Ensuring equity of services throughout SHA
Workforce development issues
Role and position of individual within organisational structure
Background:
Could you describe your background in the health service?
Have you been specifically involved in the strategic planning of mental
health or specialist mental health services before?
If so in what capacity? E.g. planning, commissioning etc ideally want
specifics such as needs assessment, review of local population and so
on.
Could you describe your current role and responsibilities within the SHA?
Can you describe your involvement or role, if any, in EIS planning or
development in this SHA? E.g. Strategic planning of mental health
services generally, co-ordinating function as aware that EISs may not
be co-terminous with PCTs, ensuring fidelity to national guidance,
establishing targets and timescales
Is this your proscribed role or have you taken this role on for other
reasons? E.g. interest in area, past history of working or expertise in
this area
Do your wider responsibilities within the SHA create any tensions with
the role you may have relating to EISs? For e.g. Conflict of interestsservice development agenda role and performance management role,
difficulties with time management, facilitate EI implementation through
increased experience and networking, competing priorities
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Could you describe the role of the SHA in monitoring and accountability
of EISs? E.g. the lines of accountability for EISs, role of SHA in
establishing targets, milestones, timescales, objectivity of service,
transparency and inclusiveness
Strategic planning of EISs
Can you describe your involvement in EIS planning? E.g. need to know if
involved in specifics such as decisions on service models, identifying
need, number of staff required, site of EIS or more general such as
ensuring each PCT has lead commissioner with adequate support for
mental health
Are you aware of or involved in any planning fora or meetings relating to
EIS planning or development?
Are you actively involved or do you participate in any of these meetings?
If not why not? E.g. No time, not aware, not your role
Are you aware of the wider membership of these meetings or fora? Want
to establish the lines of communication both vertically, horizontally and
parallel. SHA or senior PCT execs are e.g. of vertical, other PCT
executives or colleagues are e.g. of horizontal, extra- PCT
organisations, service users/ carers or wider statutory organisations
such as LITS are example of parallel.)
Has the SHA worked in partnership with any other organisations outside
of these planning meetings or for a in the planning, development or
implementation of EISs? E.g. NIMHE, social services, Department of
Health
How are members incepted into these fora? E.g. word of mouth/
invitation, because of their role or position
Do these fora only focus on the EIS or do they focus on other aspects of
EIS development or link into wider mental health service planning?
Are there any particular benefits or disadvantages associated with
belonging to these fora? E.g. promoting reflexive service development
from EIT and SU/C viewpoint, influence position of EIS within
competing priorities of PCT, promotion of unified goals, objectives and
agenda’s of the different organisations involved, better communication
at different levels and facilitate process for managers/ PCT executives
through networking with others, lack of innovation
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To what extent are service users and carers involved in these fora? E.g.
full decision-making, token, ad-hoc, give an example of how a SU/C
has changed service development effectively
What are the barriers or challenges to service users/ carers becoming
involved in your experience? E.g. experience, health, financial
What are the barriers or challenges to involving a wider audience in
these fora? E.g. not invited, not enough time, no experience, not your
role
What strategies might be employed to overcome these barriers?
Implementation of EIS
What consideration, if any, are you aware of, was given to the
challenges of implementing a new service at the planning stage? E.g.
implementation model, strategies to overcome barriers such as
organisational culture, competing priorities, role of SHA to co-ordinate
this, leadership
Have any problems been encountered in trying to establish the EIS that
you are aware of and has the SHA had any role in this? E.g.
Organisational hierarchies and cultures, traditional or historical working
patterns
Can you describe any mechanisms or ways that this has been overcome?
E.g. Key individuals, increased ‘official’ education and learning in
partnership, imposition from the top, the influence of other wider
organisations on the implementation of EISs - SHA/NIMHE, fidelity to
national guidance, aims and objectives of service, standards and target
setting, monitoring and evaluating the service, service model used
Who have been key individuals (leaders) in facilitating the
implementation of EISs? Whilst these individuals have facilitated
implementation of the EIS, have they had any other impact upon the
service? E.g. influencing service development
What are the benefits and are there any drawbacks to the SHA
involvement in the implementation of EISs? E.g. Inappropriate
influence of SHA on development, stifling innovation through ensuring
fidelity to national guidance, top down approach resulting in services
distant or unrelated to local needs
Future development or influences on EIS
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Do you consider that there will be any significant organisational or
structural changes, which may impact on the planning or development
of specialist mental health services? E.g. Foundation trusts, practice
based commissioning, care trusts
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Topic guide for PCT executives involved in EISs
Role and responsibilities relating to the EIS and on a wider level
Background
Role initially in EIS and current role
Lines of accountability and responsibility
Involvement in the strategic planning of EIS
Involvement in the initial development of services
Current level of involvement in service planning and development
Attendance at planning meetings or fora
Wider membership of these for a
Inception into fora
Focus of fora (on EIS only or wider focus)
Benefits or barriers to belonging to these fora
Consideration of implementation of EIS policy at the strategic planning
level
Budgetary issues and finances
Commissioning issues
Identifying need
Determining appropriate service model
Developing the service philosophy (cultural sensitivity, innovation,
adaptation and flexibility)
Staffing and skill mix
Role of clinical medical staff
Internal and external staff recruitment
Leadership and peer support
Communication with key and broad range of stakeholders
Project management
Finances, budgets and resources
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Challenges associated with implementing and establishing the EIS
Consideration of challenges of implementation of EIS at planning stage
Challenges involved in establishing the EIS
Overcoming the challenges
Key individuals involved in this
Influence of wider organisations upon this e.g. SHA, CHAI
Operational Issues
The aims and objectives of the EIS
The accessibility of the EIS
How the service is responsive to the needs of young people
Involvement of service users, carers and family members
Psychological services available
Staff training and development
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Appendix 4: Final EIS Team Lead interview schedule
EDEN PROJECT
SEMI-STRUCTURED INTERVIEW SCHEDULE
TEAM LEADS/SERVICE CO-ORDINATORS
Preamble
This is the final round of data collection and during this interview we would like to
explore some of the recurring issues that have been raised by colleagues working in
EISs during the past 2 years.
1. Concept of recovery
A common theme expressed during previous interviews has been the concept of
recovery, could you explain:
what this concept means to you
what actions or interventions do you offer that facilitates recovery
how do you know when ‘recovery’ has been achieved?
2. Holistic services
Considerable emphasis has been given to the presence and effectiveness of
delivering holistic services. Could you explain:
what this term means to you/your team
what your holistic service consists of (including what is missing from
existing provision)
how your service links with the wider NHS/social care context (including
voluntary organisations)?
3. Staffing issues
A number of issues have been raised in relation to the demands placed on staff
working in EISs. Have any of the following been concerns or challenges that
you/your team have had to deal with and if so how?
multi-disciplinary team working – to what extent could your team be
described as multi-disciplinary?
staff turnover and subsequent replacement
burnout and/or rates of sickness
4. Local champions
Both across the West Midlands as a whole and within some localities, individuals
have suggested that the development, and in some cases the expansion, of EISs
has been facilitated by the presence of local champions. Has this been your
experience? If so please describe how and why you think this has occurred/is still
occurring?
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5. The future of EIS
There is growing evidence to suggest that some EISs are facing challenges in terms
of their sustainability. Have you/are you experiencing such challenges if so can you
describe how they have manifested and how you think they may be resolved?
6. Critical incidences
Could you identify three critical incidences which have impacted or continue to
impact on your service development and delivery. In each example, please identify
both the positive and negative aspects.
7. Any other comments
Where service lay at start of EDEN project spring 2004
+5
+4
+3
+2
+1
0
-1
-2
-3
Social Care Model
-4
-5
Medical Model
Current point of service
+5
+4
+3
+2
+1
0
-1
-2
-3
Social Care Model
-4
-5
Medical Model
Future point of service
+5
+4
+3
Social Care Model
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+1
0
-1
-2
-3
-4
-5
Medical Model
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Appendix 5: Formative interview tables
Formative data spring 2004
Team
Spring 2004
Birmingham Harry Watton
Team Leader – CPN
Consultant Psychiatrist
Deputy Team Leader – CPN
Clinical Psychologist
Birmingham - Highgate
Team Leader – CPN
Care Co-ordinator – CPN
Care Co-ordinator – ASW
Asian Family Support Worker
Coventry
EI Lead yet to be appointed but
PCT agreement to participate in
EDEN
Gloucestershire
Clinical Team Leader – CPN
Consultant Clinical Psychologist
Community Development Worker CPN
Clinical Specialist - CPN
Herefordshire
EI Project Lead – RMN
North Warwickshire
Team and Project Lead - CPN
Sandwell
Team and Project Lead
Shropshire
Joint Commissioner for Mental
Health
South Staffordshire
Project Lead for EI – RMN
Team Co-ordinator – RMN
Case Manager x 3 (RMNs)
Assistant Psychologist
Youth Workers x 3
South Warwickshire
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Care Co-ordinator - ASW
Stoke on Trent
Project Lead - CPN
Walsall
Clinical Lead for EI
Link workers x 3 From
CMHTs/CAMHs in Walsall
Wolverhampton
Team Leader – CPN
Occupational Therapist tech nurse
Outreach Worker
Worcester
Team Leader – CPN
Psychiatrist
Care Co-ordinator - CPN
Total number of interviews
46
Formative data autumn 2004
Team
Autumn 2004
Director of EI Service
Team Leader – CPN
Approved Social Worker
Clinical psychologist
Birmingham- Highgate
Director of R&D
Team Leader – CPN
Care Co-ordinator – ASW
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Clinical psychologist
Coventry
EDEN
Gloucestershire
Community Development Worker CPN
Herefordshire
North Warwickshire
Team and Project Lead – CPN
Sandwell
OT
Shropshire
EI Project Lead only just taken up
post so did not take part in
interviews. Director of Mental
Health has moved to a new area.
South Staffordshire
Youth Workers x 2
South Warwickshire
Team Leader – Social Worker
Care Co-ordinator CPN
Stoke on Trent
Care Co-ordinator x 2 (CPNs)
One Clinical Psychologist
One Support Worker
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Newcastle and Moorlands
Team Lead – CPN
Case Manager - CPN
Walsall
Wolverhampton
Team Leader – CPN
Occupational Therapist technician
Case Manager - CPN
Outreach Worker
Worcester
Team Leader – CPN
Psychiatrist
Care Co-ordinator - CPN
52
Formative data spring 2005
Team
Spring 2005
Team Leader – CPN
Team Lead
G grade CPN
ASW
Coventry
EDEN
Gloucestershire
Herefordshire
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North Warwickshire
Team and Project Lead – CPN
G Grade CPN
Sandwell
OT
CPN X2
Shropshire
EI Project Lead only just taken up
post so did not take part in
interviews. Director of Mental
Health has moved to a new area.
South Staffordshire
Youth Workers x 3
South Warwickshire
Team Lead – (Acting) CPN
Psychologist
ASW
Stoke on Trent
Team Lead
Care Co-ordinator CPN
Support Worker
Newcastle and Moorlands
Team Lead – CPN
Case Manager – CPN
Support Worker
Walsall
Team Manager
Wolverhampton
Team Leader – CPN
Case Manager - CPN
Outreach Worker
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Worcester
Team Leader – CPN
50
Formative data autumn 2005
Team
Autumn 2005
Team Lead – CPN
Coventry
Project Lead
Gloucestershire
Herefordshire
Sandwell
Team Leader CPN
Shropshire
EI Project Lead – ASW
South Staffordshire
South Warwickshire
Team Leader – (Acting) CPN
Stoke City
Team Lead – Nurse Consultant
Newcastle and Staffordshire
Moorlands
Team Lead – CPN
Walsall
Wolverhampton
Acting Team Leader – CPN
Worcester
Team Leader – CPN
14
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Appendix 6: Service user and carer interview schedules
EDEN Project – Semi-structured interview schedule
Carers
Demographic details
DATE OF INTERVIEW
NAME OF INTERVIEWEE
AGE/DOB
GENDER
ETHNICITY
RELATIONSHIP TO SERVICE USER
DEPENDANTS
LENGTH OF TIME BEEN A CARER
NAME OF INTERVIEWER
Personal background prior to becoming a carer
Possible prompts to include:
Full-time work
Part-time work
Voluntary
Nature of work
Has there been an ‘enforced’ change in your employment due to
becoming a carer?
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Reduced hours of same job
Less responsibilities of same or different job
Less chance of promotion/pay increase
Educational studies disrupted/ended
Section 1: Roles and responsibilities
1.1 Does the person you care for live with you or somewhere else?
1.2 What are your key caring roles? I.e. what does caring mean to you?
Possible prompts to use:
Organise/input with activities of daily living, eg. Prompting to attend to
personal hygiene etc.
Meal preparation/supervision
Overseeing of medication
Transport to appointments/work/social events
1.3 Are you the sole carer, or do you have other or extended family to help? If so,
who, and how do they help?
1.4 Have you noticed any changes within the way important people in your life
relate to each other and the service user since the onset of the illness? If so, what
are they?
Personal spouse/partner
Sibling
Parent/child
Child/parent
Have relationships within your family changed? If so, in what ways? Why
is this? Could this be due partly to work done within the family by the
EIS?
1.5 Has your social life changed due to becoming a carer? If so, how?
Holidays
Hobbies
Life-style
Work related activities
Education
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1.6 Do you have any other roles/responsibilities within the community other than
your caring role?
Community based
School activities
Voluntary
Other
1.7 What in your opinion has changed the most with respect to your life since the
onset of the illness?
Section 2: Service development and implementation
2.1 Are you aware of how the EI’s are organised or by whom?
Local /national Government
PCT
Other
2.2 Are you aware of the professional background of the people who make up the
EI team?
Psychiatrist
Psychologist
Social Worker
Mental health nurse/general nurse/CPN
Support Worker
Link Worker
Outreach Worker
Other
2.3 Are you involved in any way in the planning or development of the EI’s?
2.4 Are you aware of any other carers who are involved in the planning or
development of the EIS?
2.5 If possible would you be interested in becoming involved with the planning and
development of the EIS?
Section 3: Pathways into, during, & out of EIS
3.1 Do you know who referred (insert name) to the EIS?
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GP
EDIT (early detection and intervention team)
Accident & Emergency
Self-referral
Other
How well do you find the EIS ‘connected’ with these other services?
3.2 What was your impression of the first contact with the Early Intervention
Service?
What was done (if you attended)? And how did it make you feel?
Were you invited to the meeting if (insert name) was agreeable?
Was (insert name) given a choice of who he/she saw and where?
Were issues such as gender, ethnicity, culture, accessibility if physically
disabled, provision for children or pets offered?
How have any of these factors changed over time? Particularly how you
feel about the service?
3.3 Was your GP aware of mental health issues and services?
3.4 How would you describe your General Practitioner Service/involvement in the
initial stages of the illness?
Accurate diagnosis
Swift referral to appropriate services/agencies of care
Knowledgeable re Early Intervention Services
Knowledgeable re mental health issues and services
How much time elapsed from seeing GP and first appointment with other
services/agencies of care
Was there any information re the illness or help with understanding the
illness for the family as well as for the user? Was this useful?
3.5 Did you have any problems when you first started using the service?
Delay
Time before first contact too long/too short
Methods of engagement (compliance with care plan)
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Assessment
Other
3.6 Did the care package include contact with other services? If so who were they?
Connexions
Drug/alcohol misuse services
Medical services
Youth counsellors
Sexuality/gender
Sex education
General health education
3.7 Were there any age restrictions to some services due to the age of (insert
name)? If so, what were they?
3.8 Was it made clear who to contact or what the procedure was if there was a
problem? Did you feel able to follow the procedure if you needed to?
3.9 If (insert name) has any experience of discharge from the service can you
please describe the process?
3.10 Were follow up appointments arranged? If so who with?
Choices/involvement?
Contact with after care key workers?
Section 4: Experiences of the services and treatment
4.1 Were the aims and objectives of the service made clear to you at the beginning
of your involvement?
4.2 After the initial care package was developed what did you feel about re contact
and support provided by the service.
Role of key worker – what do you see as the role of your key worker?
E.G. Professional, friend, medically trained etc.
Do you benefit from any of the practical help available here e.g. benefits
advice, help with organising living arrangements, childcare etc. How
important do you think this practical help is compared to the other
services offered? Is it practical help and advice that makes the most
difference to you?
Regularity/frequency of visits
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Information re other services
Cancellation of social/OT sessions where provided
Cancellation of visits
Information re service changes
Information re first point of contact if a problem occurred
Confidentiality issues
Continuity of care (either medical or support staff)
Flexibility
4.3 How was the initial assessment conducted?
Where did it take place?
Were you involved at all?
Who carried out the assessment?
Did the assessment meet any expectations that you had?
How long did it take?
4.5 What is the length of care offered?
Was this specified at the beginning of the care package?
As there been any changes to the length of care offered? If so how (if at
all) has this affected you?
Do you feel the time offered is adequate/inadequate?
4.5 Were you involved in the development of the crisis plan?
4.6 After the initial care package was developed what did you feel about re contact
and support provided by the service.
Relationship changes
Dealing with professional/medical staff
Lack of compliance re medication/awareness and insight into illness
Possible changes in behaviour due to the illness including potential
violence
Financial concerns
Social changes
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4.7 Were you made aware of other provisions for emergency/crisis occurring
outside of working hours? If so what were they?
Home treatment?
Emergency duty team?
Friends?
Clubs?
Other?
4.8 If you had to use a crisis service, how did it work?
4.9 Do you feel the service/workers have maintained confidentiality and privacy
where necessary?
4.10 Early Intervention is specifically for the care of 14 – 30 year old users; do you
feel it meets the needs of (insert name) age group?
Are there any links with young people’s organisations such as youth
counselling services?
Are there any staff members within the team who have particular
expertise in working with young people?
Are young people’s views incorporated into service developments? If so
how?
What techniques are used to encourage ‘engagement’ with the service?
Did (insert name) have a choice where he/she met the key worker?
Do you feel (insert name) is encouraged to form social networks outside
the service? Or do you feel the EIS offers a replacement for friends of
their own? i.e. Do you think the service encourages too much
dependency? How should the service overcome this?
4.11 What psychological therapies (if any) are available?
BFT (Behavioural Family Therapy)
CBT (Cognitive Behavioural Therapy)
Talking therapy
Other
4.12 How do you feel about these therapies/interventions? Are they helpful, if so
who for and how?
4.13 How will you know when (insert name) is recovered?
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4.14 What information was made available to you re support groups and benefits?
Carer’s groups
Financial benefits
Respite
Other
4.14 What was the communication like between you and the services involved in
your care?
Were you always informed of changes?
Were you kept up to date with appointments etc?
Were you given the chance to ask questions? Were you satisfied with
answers?
Did you feel that the time that was allocated for particular ‘specialist’
members of the team was the right combination for your needs?
4.15 Do the people involved in (insert name) care communicate effectively with
each other?
4.16 Were you aware of a carer’s assessment? If you were how did you hear about
it?
From the EI service?
Psychiatric/medical services
Carer groups
Other
4.16 Were you offered a carer’s assessment?
4.17 If a carer’s assessment was made available to you what type of issues did it
address?
Section 5: Facilitators and hindrances to using the EIS
5.1 Have there been any problems with accessibility to the EIS due to where you
live?
Accessibility due to living in urban/rural areas
Do you have any transport issues? (Car driver, public transport,
community services such as ring and ride etc)?
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If travelling is an issue does this interfere with whether (insert name)
keeps appointments/treatments/interventions?
Do the appointments interfere with work?
Are you able to take other dependants/pets with you if necessary?
Are there any outreach services supplied by the EI team
Are there any interpreters available if English is not your first language?
Is a choice of gender offered for the key worker?
How is emotional/physical safety catered for?
5.2 Do you have any questions related to the research project?
5.3 Do you have any other comments?
Useful contacts
These numbers and email addresses are for the Birmingham Area, but if you phone
or email them your area information should be available.
Rethink
Contact: Colin Gillings
191 Corporation Street
Ruskin Chambers
1st Floor
Birmingham
Telephone: 0121 2366952
Birmingham Carer’s Support
Birmingham Carers Centre
16 Handsworth Wood Road
Birmingham
B20 2DK
www.birminghamcarers.org.uk/us/contacts.shtml
Carer help line: 24 hr answering machine: 0121 6864060
Anne Shearer: anneshearer.carers.org.uk
Mind
MindinfoLine 0845 766 0163
17 Graham Street
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Hockley
Birmingham
West Midlands
B1 3JR
Telephone: 0121 6088001
Email – fionataylor@mind - Birmingham.co.uk
Family Rights Group
Advocacy & Information
www.frg.org.uk
Tel: 0800 731 1696 Mon – Fri 10 – 12am & 1.30 – 3.30 pm.
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Eden Project - Semi-Structured interview schedule
Service users
Demographic details
DATE OF INTERVIEW
NAME OF INTERVIEWEE
AGE/D.O.B
GENDER
ETHNICITY
RELATIONSHIP TO CARER IF RELEVANT
DEPENDANTS
LENGTH OF TIME BEEN DIAGNOSED WITH ILLNESS
NAME OF INTERVIEWER
Section 1: Personal background
1.1 What were you doing before you became unwell?
Were you working? Part-time or full-time? Has this changed?
Were you a student? Part-time or full-time? Has this changed?
Were you involved in any other activities e.g. voluntary work,
hobbies/interests? Have you been able to continue with these?
1.2 What in your opinion might have ‘caused’ your illness?
Any particular pressures/life events e.g. changing job, becoming a
parent, leaving home, pressures of study
Substance misuse
Alcohol misuse
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Physical illness
Was it your choice? (see below)
Section 2: pathways into, during and out of service
2.1 Do you know who referred you to the EIS and why?
GP
EDIT (early detection and intervention team)
Self-referral
Accident & Emergency
Sectioned – what type and for how long, how did this make you feel?
Other
How well do you find the EIS ‘connected’ with these other services?
2.2 What was your impression of the first contact with the Early Intervention
Service?
What was done, and how did it make you feel?
Did you have a choice of who you were seen by?
Where you were seen?
Were issues such as gender, ethnicity, culture, accessibility if physically
disabled, provision for children or pets made?
How have any of these factors changed over time? Particularly how you
feel about the service?
2.3 In your opinion was your GP aware of mental health issues and services?
2.4 How would you describe your General Practitioner Service/involvement in the
initial stages of the illness, if appropriate?
Accurate diagnosis?
Swift referral to appropriate services/agencies of care?
Knowledgeable re Early /Intervention Services?
Knowledgeable re mental health issues and services?
How much time elapsed from seeing GP and first appointment with the
other services/agencies of care?
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Was there any information re the illness or help with understanding the
illness for you and the important people in your life? How useful was
this?
2.5 Did you notice any difficulties in general when you were referred to the service,
or by any diagnosis that may have been made?
Worried about what friends and family might think?
Stigma/discrimination
Unwilling to accept treatment/diagnosis? Why?
Not knowing anything about it?
Fear of what psychiatric services might be?
Unsure of what to expect?
Didn’t want to admit that there might be a problem?
Family member insisted against your wishes?
2.6 Did you have any problems when you first started using the service?
Delay (waiting list?)
Time before first contact to long/too short
Assessment
Methods of engagement (sticking to care plan)
Personal needs/wants met
Other
2.7Did you have any problems accessing any other services because of your age?
Which services?
2.8 Were you involved in developing your crisis plan?
2.9 Have you needed to use the crisis service – how did it work, was it helpful or
not?
2.10 Was it made clear who to contact or what the procedure was if there was a
problem? Did you feel able to follow the procedure if you needed to?
Choice of who to contact
Were you concerned about possible repercussions if you complained?
Do you have access to advocacy (some one to speak for you)?
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2.11
Do you have any experiences of being discharged from the service – once
or more than once? Can you tell me a bit about this?
2.12 Were follow up appointments arranged? If so who with?
Choices/involvement?
Contact with after care key workers?
2.12 What other services have you had or do you have as a result of being in
contact with the EIS? How do you feel about your experience with these services?
Connexions
Drug/alcohol misuse services
Medical services
Youth counsellors
Sexuality/gender
Sex education
General health education
Section 3: Experience and perceptions of service
3.1 How helpful do you find the service? In what ways?
Motivation
Practical application of skills re-learnt such as socialisation, and social
inclusion
3.2 Which forms of treatment do you find most helpful? Why is this?
How much choice did you have over the types of treatment and do you
find it helpful e.g. medication, family therapy?
Have you been offered any psychological therapies? E.g. BFT, CBT
Do you benefit from any of the practical help available here e.g. benefits
advice, help with organising living arrangements, childcare etc. How
important do you think this practical help is compared to the other
services offered? Is it practical help and advice that makes the most
difference to you?
Do you feel the service is organised around your needs/requirements?
Physical/other health needs
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3.3 Are there any aspects of the service which are unhelpful? Why is this?
Do you feel you’re expected to do anything that you’d rather not?
Did you feel you knew enough about the different types of services here
to be able to choose the right ones?
Have you had to ‘put up’ with any services/treatment that hasn’t met
your needs? Were you able to talk to your key worker about this?
Physical/other health needs
3.4 Is the service offered here what you might have expected? In what ways is it as
expected/ is it not as expected?
3.5 Do you feel that the people involved in running/working in the EIS can offer you
the help you need? Can you give any examples of when this has happened?
Possible prompts to include?
Initial assessment
Role of key worker – what do you see your key worker as? E.g.
Professional, friend, medically trained etc
What sort of role would you ideally like your key worker to have?
Do you have a care plan? Is this helpful to you? Did staff involve you in
developing the care plan?
Accessibility of staff
Relationships with staff
Awareness/helpfulness of different skills of staff – different professional
backgrounds
Out of hours/crisis services
Privacy/confidentiality
Individual needs relating to ethnicity, gender etc
3.6 What would you like the staff to offer you that they don’t?
As a young person?
Gender
Ethnicity
Considering your particular circumstances e.g. where you live, what you
like doing, your experience/background?
3.7 What else do you like about the service?
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3.8 What don’t you like?
3.9 What would you change about the service? What would you do instead?
Flexibility of appointments with staff
Amount/regularity of contact with staff
Where you meet with staff
Services for/contact with your family
Childcare
Help with educational/employment opportunities
Help with personal issues e.g. self-esteem, confidence, relationships
More practical assistance e.g. benefits, budgeting, advice on finding
somewhere to live
Transport issues
Translation/Interpretation services
Section 4: Impact of the service on personal circumstances
4.1 Would you say that your circumstances were difficult when you were referred to
the service? (Have they changed in any way? If not do you think that they are likely
to change in the future? What contribution do you think the service has made?)
Employment
Education
Living arrangements
Money
Time for going out with friends/hobbies/ having fun
Relationships (see below)
Family circumstances
Interest in/success in all of these
4.2 How did you feel about yourself and your relationships when you were referred
to the service? Has anything improved or got worse?
Do you see more or less of your friends? Have your friendships changed
– do you have different friends now or do you relate differently to your
friends?
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Were/are you in a relationship? Has being referred to the service
affected this?
What about your relationships within your family?
Do people treat you differently if they know you’re using the service?
Stigma
Have you noticed changes in your family – parents and siblings?
Have relationships with your family changed in any way? If so, then in
what ways? Why do you think this is? Could this be due partly to work
done within the family by the EIS?
What does the caring role of your family mean to you?
Similarly with friendships – how can friends support you? Do you think
contact with your key worker makes you rely on your friends less? Are
you still encouraged to develop your own social life outside the
service?
Do you think you rely on the EIS too much? Are you encouraged to do
so?
4.3 Have you noticed yourself thinking differently about the way you are? Can you
explain this?
Do you feel your self-esteem has improved? Or has it got worse?
Are you more or less confident than you were?
Do you feel able to pursue your interests/ambitions? Is the service
helping you to do this/ find out what they are?
Does being associated with the service make you feel more negatively
about yourself? Or more positively?
How will you know when you’ve recovered?
Section 5: General comments not yet covered
5.1 Can you think of any other advantages or disadvantages about using the
service here?
5.2 Have you become involved in the planning and development of the service? In
what ways? If not, would you like to? What would you like to do?
Attending meetings
Training sessions
Having a ‘say’ – how would you like to do this?
© NCCSDO 2007
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Giving/receiving feedback
Any other ways?
Decision making re running of service
5.3 What do you consider to be the most important thing that the service has done
for you?
5.4 Is there anything else that you think might help towards your recovery?
Self-help groups
Other advice or training for yourself
Other advice or training for staff
5.4 Do you have any questions related to the research project?
5.5 Do you have any other comments?
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Useful contacts
MEDICAL EMERGENCY OUT OF HOURS
By phoning your GP out of hours you will be given the contact number for
DOCTORS ON CALL or ACCIDENT and EMERGENCY
NHS Direct
Call 24 – hours a day. Tel: 0845 4647
NFS Help Line
Free Phone: 0800 387 034
Sane Line
Tel: 08457 67 8000
Samaritans
Tel: 08457 90 90
B-Glad
Birmingham Gay & Lesbian Anti-Depressants
Contact: Gay & Lesbian Switchboard
Tel: 0121 622 6589
Bristol Crisis for Women
P.O. Box 654, Bristol, BS99 1XM
Tel: 0117 925 1119 (Office) (Helpline Friday & Saturday night 9p.m. – 12.30 a.m)
Telephone counselling and information service relating to self injury.
National Self-Harm Network
C/o Survivors Speak Out, 24 Osnaburgh Street, London, NW13ND
Tel: 0171 916 5472
© NCCSDO 2007
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Appendix 7: Summative data collection sheet
(INFORMATION FROM CASE NOTES)
PARTICIPANT ID
ETHNIC GROUP
0. White: British
1. White: Irish
2. White: other
3. Mixed: W+B Caribbean
4. Mixed: W+B African
5. Mixed: White and Asian
6. Mixed: other
7. Asian or Asian British: Indian
8. Asian or Asian British: Pakistani
9. Asian or Asian British: Bangladeshi
10. Asian or Asian British: other
11. Black or Black British: Caribbean
12. Black or Black British: African
13. Black or Black British: other
14. Chinese
15. Other ethnic group
16. People identifying them selves as Welsh (as well
as any other category)
DATE OF BIRTH
GENDER
1 Male
2 Female
GP
DATE OF REFERRAL TO
TEAM
REFERRED BY
0. GP
1. private doctor
© NCCSDO 2007
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the West Midlands
2. CPN
3. psychiatrist
4. psychiatrist (drug service)
5. neurologist
6. counsellor
7. casualty department
8. psychiatric hospital
9. primary care team
10. home treatment team
11. child and adolescence services
12. CMHT (unspecified)
13. social services
14. asian support worker
15. religious leader
16. police
17. other, please specify………………………………………
18. Crisis
EIS
NAME OF CARE COORDINATOR
Living Arrangements
0. Alone
1. Partner/Spouse
2. Parents
3. Other – please state below
Length of time spent under these living arrangements:
Employment
0. employed f/t (31 hours a week or more)
1. employed p/t (30 hours a week or less)
2. self-employed
3. student, 16+, economically active
4. student 14-16, economically active
5. unemployed
6. never worked
© NCCSDO 2007
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the West Midlands
7. long-term unemployed
8. student (economically inactive)
9. looking after home/family
10. permanently sick of disabled
11. other inactive
In Education
0.
Yes
1.
No
Type of education
Anticipated/expected time left engaged in education (please state)
Time missed form education, in the last 12 months due to psychosis
In the last 12 months:
Number of parasuicide incidents
Number of DSH incidents
Number of incidents of violence where the patient has been the victim
Number of incidents of violence where the patient has been the perpetrator
Suicide
0 Yes
1 No
How many times has the person been assessed under the Mental Health Act in the
last 12 months?
How many times have the following been the outcome of the assessment?
Voluntary admission…………………………. Date(s)……………………………………………
Voluntary admission that changed to section……………………….. Date(s)……………
Voluntary admission that changed to nurse holding power that changed to
section…………… Date(s)……………
Voluntary admission that changed to nurse holding power that changed to
voluntary admission………………….. Date(s)……………
Section 2……………… Date(s)……………
Section 3……………… Date(s)……………
Section 4 ……………. Date(s)……………
Section 135 ………… Date(s)……………
Service Engagement Status
© NCCSDO 2007
0 Still engaged
183
the West Midlands
1 Disengaged
2 Discharged to………………………………………
3 Never engaged with service
Date discharged or disengaged:
Costs data
List agencies involved/named on care plan (include cost where information is
available)
Number of meetings with team/key worker
Number of contacts with members of other agencies (specify agencies, list all)
Who is involved in reviews (list all)
Number of reviews in last 12 months
Number of inpatient days in
© NCCSDO 2007
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Psychiatric Ward
Crisis Intervention
Home Treatment
Respite Unit
Co-morbidity
Drug misuse
0 Yes
1 No
Alcohol misuse
0 Yes
1 No
Drug & alcohol misuse
0 Yes
1 No
Learning disability
0 Yes
1 No
Physical disability
0 Yes
1 No
Other
DUP
Duration of DUP
How was DUP collected e.g. assessment method
© NCCSDO 2007
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Appendix 8: Summative evaluation tables
Figure 1: Duration of untreated psychosis (DUP) in weeks by gender
150
Duration
of
Untreated
Psychosis
100
50
0
Female
n = 131
© NCCSDO 2007
Male
n = 302
186
the West Midlands
Figure 2: Duration of untreated psychosis (DUP) in weeks by ethnicity
150
Duration
of
Untreated
Psychosis
100
50
0
White
n=241
© NCCSDO 2007
AsianIndian
n=28
AsianPakistani
n=61
AsianBlackBangladeshi Caribbean
n=12
n=40
BlackAfrican
n=11
Other
n=23
187
the West Midlands
Figure 3: Duration of untreated psychosis (DUP) in weeks by service team
150
Duration
of
Untreated
Psychosis
100
50
0
A
B
C
n=37
n=91
n=17
© NCCSDO 2007
D
E
F
n=18 n=42
G
H
I
J
K
L
n=38
n=76
n=26
n=29
n=12
n=42
188
the West Midlands
Figure 4. Inpatient length of stay (days) by gender
Inpatient days since Inception
500
400
300
200
100
0
Female
n=58
© NCCSDO 2007
Male
n=152
189
the West Midlands
Figure 5. Inpatient length of stay (days) by service team
Inpatient days since Inception
500
400
300
200
100
0
A
B
C
D
E
F
G
H
I
J
K
L
N=14
n=38
n=12
n=4
n=15
n=19
n=17
n=27
n=15
n=14
n=14
n=21
© NCCSDO 2007
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the West Midlands
Figure 6. Inpatient length of stay (days) by ethnicity
500
Inpatient days since inception
400
300
200
100
0
White
© NCCSDO 2007
AsianIndian
n=18
AsianPakistani
n=20
AsianBangladeshi
n=4
BlackCaribbean
n=23
BlackAfrican
Other
n=8
191
EDEN: Evaluating the Development and Impact of Early Intervention Services (EISs) in the West Midlands
Table 1. Service teams participating in the evaluation by gender (male) & ethnicity - figures are frequency (col valid %)
Service Team
Gender
Ethnicity
A
Male
White
Asian-Indian
Asian-Pakistani
AsianBangladeshi
BlackCaribbean
Black-African
Other
Unknown
Ethnicity
Total (Male)
© NCCSDO 2007
1
(4)
6
(23)
7
(27)
0
8
(31)
2
(8)
1
(4)
1
(4)
26
(100)
B
13
(19)
6
(9)
24
(35)
7
(10)
8
(12)
1
(1)
9
(13)
1
(1)
69
(100)
C
D
E
F
15
(94)
0
11
(92)
0
14
(100)
0
0
0
0
0
0
0
0
0
0
0
0
0
1
(6)
0
0
0
1
(8)
12
(100)
16
(100)
G
H
I
J
17
(50)
3
(9)
5
(15)
1
(3)
5
(15)
0
22
(78)
1
(4)
1
(4)
0
45
(79)
3
(5)
0
13
(76)
1
(6)
0
0
0
0
1
(2)
0
1
(6)
0
0
0
3
(9)
0
14
(100)
34
(100)
2
(4)
6
(10)
57
(100)
1
(6)
1
(6)
17
(100)
0
4
(14)
28
(100)
K
L
Total
5
(31)
2
(12)
5
(31)
0
5
(33)
3
(20)
0
33
(94)
0
2
(12)
2
(12)
0
4
(27)
1
(7)
1
(7)
1
(7)
15
(100)
194
(57)
25
(7)
43
(13)
9
(3)
29
(8)
6
(2)
18
(5)
15
(4)
339
(100)
0
16
(100)
0
1
(3)
1
(3)
0
0
0
0
35
(100)
192
Table 2. Service teams participating in the evaluation by gender (female) & ethnicity - figures are frequency (col valid
%)
Gender
Female
Ethnicity
White
Asian-Indian
Asian-Pakistani
AsianBangladeshi
Black-Caribbean
Black-African
Other
Unknown
Ethnicity
Total (Female)
© NCCSDO 2007
A
1
(7)
1
(7)
4
(27)
0
6
(40)
1
(7)
2
(13)
0
15
(100)
B
C
D
E
Service Team
G
H
F
4
(14)
0
4
(100)
0
2
(100)
0
4
(100)
0
3
(33)
3 (33)
12
(67)
0
14
(48)
3
(10)
4
(14)
2
(7)
1
(3)
1
(3)
29
(100)
0
0
0
0
0
0
0
0
2
(11)
0
0
0
0
0
0
0
0
0
0
0
0
0
0
0
3
(33)
0
4
(100)
2
(100)
4
(100)
9
(100)
1
(6)
0
0
3
(17)
18
(100)
I
J
K
21
(84)
1
(4)
0
5
(56)
1 (11)
0
0
0
1
(11)
1
(11)
0
0
1
(11)
9
(100)
1
(4)
1
(4)
1
(4)
25
(100)
0
11
(69)
1
(6)
4
(25)
0
L
0
7
(100)
0
0
0
0
0
1
(50)
0
0
0
0
1
(50)
0
16
(100)
2
(100)
7
(100)
0
0
0
Total
0
0
193
74
(53)
7
(5)
24
(17)
3
(2)
13
(9)
5
(4)
8
(6)
6
(4)
140
(100)
Table 3. Service teams participating in the evaluation by ethnicity - figures are frequency (col valid %)
Gender
Ethnicity
Total
(Male &
Female)
White
Asian-Indian
AsianPakistani
AsianBangladeshi
BlackCaribbean
Black-African
Other
Unknown
Ethnicity
Total
© NCCSDO 2007
A
2
(5)
7
(17)
11
(27)
0
14
(34)
3
(7)
3
(7)
1
(2)
41
(100)
B
17
(17)
6
(6)
38
(39)
10
(10)
12
(12)
3
(3)
10
(10)
2
(2)
98
(100)
C
D
E
Service Team
G
H
F
19
(95)
0
13
(93)
0
18
(100)
0
20
(46)
6 (14)
0
0
0
0
0
0
0
0
0
0
0
0
5
(12)
1
(2)
5
(12)
0
1
(5)
0
0
0
1
(7)
14
(100)
0
6
(14)
0
18
(100)
43
(100)
20
(100)
I
J
34
(74)
1
(2)
3
(7)
0
66
(80)
4
(5)
0
18
(69)
2
(8)
0
0
0
1
(2)
0
1
(1)
1
(1)
3
(4)
7
(8)
82
(100)
2
(8)
1
(4)
1
(4)
2
(8)
26
(100)
0
7
(15)
46
(100)
K
L
16
(50)
3
(9)
9
(28)
0
5
(29)
3
(18)
0
2
(6)
2
(6)
0
5
(29)
1
(6)
2
(12)
1
(6)
17
(100)
0
32
(100)
0
Total
40
(95)
0
1
(2)
1
(2)
0
0
0
0
42
(100)
194
268
(56)
32
(7)
67
(14)
12
(2)
42
(9)
11
(2)
26
(5)
21
(4)
479
(100)
Table 4: Age by gender & service team – figures are frequency (col valid %) unless stated otherwise
Gender
Male
Age
Mean (SD)
Median (IQR)
n
Missing (%)
Female
Mean (SD)
Median (IQR)
n
Missing (%)
Total
(Male &
Female)
Mean (SD)
Median (IQR)
Median (Full
Range)
n
Missing (%)
© NCCSDO 2007
D
E
Service Team
F
G
H
21
(3)
20
(19,
23)
12
0
24
(5)
23
(21,
28)
14
0
22
(4)
22
(18,
24)
34
0
21
(4)
20
(18,
22)
28
0
25
(5)
24
(21,
29)
57
0
22
(4)
21
(18,
23)
17
0
28
(8)
26
(23,
30)
16
0
20
(3)
19
(18,
24)
15
0
24
(4)
22
(21,
26)
35
0
23
(5)
22
(20,
26)
337
2 (1)
21
(5)
20
(18,
25)
4
0
22
(0)
22
(22,
22)
2
0
23
(4)
24
(20,
26)
4
0
22
(5)
19
(19,
24)
9
0
20
(3)
20
(18,
23)
18
0
27
(5)
26
(23,
33)
25
0
21
(4)
20
(17,
21)
9
0
25
(6)
23
(20,
28)
16
0
22
(1)
22
(22,
23)
2
0
23
(7)
21
(17,
29)
7
0
23
(5)
23
(19,
26)
140
0
23
(5)
21
(18,
24)
21
(16,
33)
20
0
21
(3)
20
(19,
22)
20
(18,
27)
14
0
24
(4)
24
(21,
26)
24
(17,
32)
18
0
22
(4)
22
(18,
24)
22
(16,
33)
43
0
21
(4)
20
(18,
22)
20
(14,
31)
46
0
26
(5)
25
(22,
29)
25
(17,
36)
82
0
21
(4)
20
(18,
23)
20
(16,
33)
26
0
26
(7)
25
(20,
(30)
25
(18,
(47)
32
0
21
(3)
20
(18,
23)
20
(17,
25)
17
0
24
(5)
22
(20,
26)
22
(17,
37)
42
0
23
(5)
22
(20,
26)
22
(14,
47)
477
2 (0.4)
A
B
C
25
(4)
25
(21,
28)
25
1
(4)
23
(4)
22
(20,
26)
68
1
(1)
23
(5)
22
(20,
24)
16
24
(4)
23
(20,
27)
15
0
23
(4)
23
(19,
26)
29
0
25
(4)
24
(21,
28)
24
(18,
34)
40
1
(2)
23
(4)
23
(20,
26)
23
(17,
33)
97
1
(1)
I
J
K
L
Total
0
195
Table 5. Age by gender & ethnicity – figures are frequency (col valid %) unless stated otherwise
Ethnicity
Gender
Male
Age
Mean (SD)
Median
(IQR)
n
Missing
(%)
Female
Mean (SD)
Median
(IQR)
n
Missing
(%)
Total
(Male &
Female)
Mean (SD)
Median
(IQR)
n
Missing
(%)
© NCCSDO 2007
White
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
23 (4)
23
(21, 26)
23 (3)
24
(21, 26)
25 (7)
23
(21, 27)
24 (5)
22
(21, 23)
23 (6)
21
(19, 30)
43
0
8
1 (11)
29
0
6
0
23 (4)
23
(20,
25)
18
0
23 (4)
24
(19,
27)
7
0
23 (4)
22
(20, 24)
21 (6)
18
(17, 28)
24 (4)
23
(20, 27)
23 (4)
23
(21, 23)
24 (7)
20
(19, 22)
24
0
3
0
13
0
5
0
24 (6)
22
(20,
29)
8
0
23 (5)
22
(20, 26)
24 (4)
24
(20,
27)
23 (4)
22
(20, 26)
23 (4)
22
(20, 26)
24 (6)
23
(20, 27)
23 (4)
23
(21, 23)
23 (4)
22
(20,
25)
23 (6)
21
(19, 24)
23 (5)
22
(20,
26)
268
0
31
1 (3)
67
0
11
1 (8)
42
0
11
0
26
0
21
0
477
2 (0.4)
23 (4)
22
(20, 26)
194
0
24 (5)
23
(20, 26)
74
0
AsianIndian
AsianPakistani
24 (3)
24
(20,
28)
24
1 (4)
Unknown
Ethnicity
15
0
6
0
Total
23 (5)
22
(20,
26)
337
2 (1)
23 (5)
23
(19,
26)
140
0
196
Table 6. Cormobidity/dual diagnosis by gender & ethnicity – figures are frequency (col valid %)
Ethnicity
Gender
Male
Cormobidity
or Dual
Diagnosis
Alcohol Misuse
Substance
Misuse
Learning
Disability
Physical
Disability
Combinations
of diagnoses
Other
Cormobidity
None
Missing
Total (Male)
© NCCSDO 2007
White
8
(4)
57
(29)
5
(2)
1
(1)
71
(37)
6
(3)
43
(22)
3
(2)
194
(100)
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
1
(4)
7
(28)
2
(8)
0
3
(7)
11
(26)
0
0
0
5
(56)
0
0
0
19
(66)
1
(3)
0
5
(20)
3
(12)
7
(28)
0
5
(12)
0
2
(22)
0
5
(17)
0
0
21
(49)
3
(7)
43
(100)
2
(22)
0
3
(10)
1
(3)
29
(100)
1
(17)
1
(17)
6
(100)
25
(100)
9
(100)
BlackAfrican
1
(17)
3
(50)
0
0
0
Other
Unknown
Ethnicity
1
(6)
11
(61)
1
(6)
0
1
(7)
6
(40)
0
1
(6)
1
(6)
3
(17)
0
2
(13)
1
(7)
4
(27)
1
(7)
15
(100)
18
(100)
0
Total
15
(4)
119
(35)
9
(3)
1
(0)
91
(27)
11
(3)
84
(25)
9
(3)
339
(100)
197
Table 7. Cormobidity/dual diagnosis by gender & ethnicity – figures are frequency (col valid %)
Ethnicity
Gender
Female
Cormobidity
or Dual
Diagnosis
Alcohol Misuse
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
0
0
0
0
0
0
Substance
Misuse
2
(3)
13
(18)
1
(14)
1
(4)
1
(33)
3
(23)
2
(40)
Learning
Disability
2
(3)
1
(14)
0
0
0
Physical
Disability
1
(1)
0
0
1
(33)
16
(22)
2
(3)
32
(43)
6
(8)
74
(100)
2
(29)
0
0
0
1
(4)
20
(83)
2
(8)
24
(100)
0
Combinations
of diagnoses
Other
Cormobidity
None
Missing
Total (Female)
© NCCSDO 2007
3
(43)
0
7
(100)
Unknown
Ethnicity
Total
1
(12)
1
(17)
1
(17)
3
(2)
23
(16)
0
0
0
3
(2)
0
0
0
0
2
(1)
0
0
0
0
2
(33)
0
1
(33)
0
2
(15)
1
(8)
7
(54)
0
3
(60)
0
7
(88)
0
2
(33)
0
3
(100)
13
(100)
5
(100)
8
(100)
6
(100)
22
(16)
4
(3)
75
(54)
8
(6)
140
(100)
198
Table 8. Cormobidity by ethnicity – figures are frequency (col valid %)
Ethnicity
Gender
Total
(Male &
Female)
Cormobidity or Dual
Diagnosis
Alcohol Misuse
Substance
Misuse
Learning
Disability
Physical Disability
Combinations of diagnoses
Other Cormobidity
None
Missing
Total
© NCCSDO 2007
White
10
(4)
70
(26)
7
(3)
2
(1)
87
(32)
8
(3)
75
(28)
9
(3)
268
(100)
AsianIndian
1
(3)
8
(25)
3
(9)
0
AsianPakistani
3
(4)
12
(18)
0
AsianBangladeshi
0
BlackCaribbean
0
6
(50)
0
0
7
(22)
3
(9)
10
(31)
0
5
(7)
1
(1)
41
(61)
5
(7)
67
(100)
1
(8)
2
(17)
0
22
(52)
1
(2)
0
32
(100)
3
(25)
0
12
(100)
7
(17)
1
(2)
10
(24)
1
(2)
42
(100)
BlackAfrican
1
(9)
5
(45)
0
0
0
0
4
(36)
1
(9)
11
(100)
Other
1
(4)
12
(46)
1
(4)
0
1
(4)
1
(4)
10
(38)
0
26
(100)
Unknown
Ethnicity
2
(10)
7
(33)
0
0
4
(19)
1
(5)
6
(28)
1
(5)
21
(100)
199
Total
18
(4)
142
(30)
12
(2)
3
(1)
113
(24)
15
(3)
159
(33)
17
(4)
479
(100)
Table 9: Mental Health Act assessment by gender & EIS – figures are frequency (col valid %)
Gender
Male
Assessed
under MHA?
Yes
C
D
E
Service Team
G
H
F
27
(39)
42
(61)
0
8
(50)
8
(50)
0
3
(25)
9
(75)
0
14
(100)
0
0
16
(47)
18
(53)
0
26
(100)
69
(100)
16
(100)
12
(100)
14
(100)
34
(100)
6
(40)
9
(60)
0
10
(34)
19
(66)
0
4
(100)
0
0
1
(50)
1
(50)
0
2
(50)
2
(20)
0
4
(44)
5
(56)
0
15
(100)
29
(100)
4
(100)
2
(100)
4
(100)
Yes
14
(34)
37
(38)
12
(60)
4
(29)
No
27
(66)
61
(62)
8
(40)
0
0
41
(100)
98
(100)
Missing
Total (Male)
Yes
No
Missing
Total (Female)
Total
(Male &
Female)
B
8
(31)
18
(69)
0
No
Female
A
Missing
Total
© NCCSDO 2007
14
(50)
11
(39)
3
(11)
28
(100)
I
J
K
17
(30)
40
(70)
0
11
(65)
6
(35)
0
57
(100)
17
(100)
8
(50)
5
(31)
3
(19)
16
(100)
L
Total
12
(80)
3
(20)
0
20
(57)
15
(43)
0
15
(100)
35
(100)
0
158
(52)
175
(46)
6
(2)
339
(100)
10
(40)
15
(60)
0
5
(56)
4
(44)
0
8
(50)
8
(50)
0
2
(100)
0
0
7
(100)
0
9
(100)
6
(33)
11
(61)
1
(6)
18
(100)
25
(100)
9
(100)
16
(100)
2
(100)
7
(100)
58
(41)
81
(58)
1
(1)
140
(100)
16
(89)
20
(47)
20
(43)
27
(33)
16
(62)
16
(50)
14
(82)
20
(48)
216
(45)
10
(71)
2
(11)
23
(53)
22
(48)
55
(67)
10
(38)
13
(41)
3
(18)
22
(52)
256
(53)
0
0
0
0
0
0
0
14
(100)
18
(100)
43
(100)
82
(100)
26
(100)
3
(9)
32
(100)
0
20
(100)
4
(9)
46
(100)
17
(100)
42
(100)
7
(1)
479
(100)
200
Table 10. Mental Health Act assessment by gender & ethnicity – figures are frequency (col valid %)
Ethnicity
Gender
Male
Assessed
under
MHA?
Yes
BlackCaribbean
BlackAfrican
Other
4
(67)
2
(33)
0
7
(39)
11
(61)
0
25
(100)
9
(100)
29
(100)
6
(100)
18
(100)
33
(44)
41
(55)
0
5
(71)
2
(29)
0
5
(21)
19
(79)
0
1
(33)
2
(67)
0
7
(54)
6
(46)
0
3
(60)
2
(40)
0
2
25)
6
(75)
0
Total
(Female)
74
(100)
7
(100)
24
(100)
3
(100)
13
(100)
5
(100)
8
(100)
Yes
128
(48)
138
(51)
2
(1)
268
(100)
19
(59)
13
(41)
0
21
(31)
44
(66)
2
(3)
67
(100)
5
(42)
7
(58)
0
22
(52)
20
(48)
0
7
(64)
4
(36)
0
9
(35)
17
(65)
0
12
(100)
42
(100)
11
(100)
26
(100)
Yes
No
Missing
Total
(Male &
Female)
AsianBangladeshi
15
(52)
14
(48)
0
Total
(Male)
No
Missing
Total
© NCCSDO 2007
14
(56)
11
(44)
0
AsianPakistani
4
(44)
5
(56)
0
Missing
95
(49)
97
(50)
2
(1)
194
(100)
AsianIndian
16
(37)
25
(58)
2
(5)
43
(100)
No
Female
White
32
(100)
Unknown
Ethnicity
Total
3
(20)
10
(67)
2
(13)
15
(100)
158
(46)
175
(52)
6
(2)
339
(100)
2
(33)
3
(50)
1
(17)
6
(100)
58
(41)
81
(58)
1
(1)
140
(100)
5
(24)
13
(62)
3
(14)
21
(100)
216
(45)
256
(53)
7
(1)
479
(100)
201
Table 11. Service engagements status at 12 months by gender and service team - figures are frequency (col valid %)
Gender
Male
Service
Engagement
Status
Still Engaged
Disengaged
Discharged
Never
Engaged
Missing
Female
A
B
C
D
E
25
(96)
1
(4)
0
67
(97)
0
15
(94)
1
(6)
0
11
(92)
0
12
(86)
0
0
0
1
(8)
0
0
0
2
(14)
0
0
0
1
(1)
1
(1)
0
Service Team
F
G
H
I
J
K
L
Total
53
(93)
3
(5)
0
15
(88)
0
13
(81)
0
15
(100)
0
0
0
1
(2)
0
1
(6)
1
(6)
0
33
(94)
1
(3)
0
3
(19)
0
0
0
17
(61)
5
(18)
3
(11)
3
(11)
0
0
1
(3)
0
307
(91)
13
(4)
7
(2)
12
(4)
0
31
(91)
2
(6)
1
(3)
0
Total (Male)s
26
(100)
69 (100)
16 (100)
12
(100)
14
(100)
34
(100)
28
(100)
57
(100)
17
(100)
16
(100)
15
(100)
35
(100)
339
(100)
Still Engaged
Disengaged
15
(100)
0
29
(100)
0
4
(100)
0
2
(100)
0
3
(75)
1 (25)
9
(100)
0
10
(56)
3 (17)
8
(89)
0
16
(100)
0
127
(91)
6 (4)
0
0
0
0
0
0
0
0
0
5 (4)
Never
Engaged
Missing
0
0
0
0
0
0
0
0
2 (1)
0
0
0
0
0
0
1
(11)
0
0
0
4
(22)
1
(6)
0
1
(50)
1
(50)
0
7
(100)
0
Discharged
23
(92)
I
(4)
1
(4)
0
0
0
0
0
15 (100)
29 (100)
4 (100)
2
(100)
4
(100)
9
(100)
18
(100)
25
(100)
9
(100)
16
(100)
2
(100)
7
(100)
140
(100)
Total (Male)s
© NCCSDO 2007
202
Table 12. Service engagement status at 12 months by service team - figures are frequency (col valid %)
Service Team
Gender
Total
(Male &
Female)
Service
Engagement
Status
Still Engaged
Disengaged
Discharged
Never
Engaged
Missing
Total (Male)s
© NCCSDO 2007
A
B
C
D
E
F
G
H
I
J
K
L
Total
40
(98)
1
(2)
0
96
(98)
0
19
(95)
1
(5)
0
13
(93)
0
15
(83)
1
(6)
0
40
(93)
2
(5)
1
(2)
0
27
(59)
8
(17)
7
(15)
4
(9)
76
(93)
4
(5)
1
(1)
1
(1)
23
(88)
0
29
(91)
0
1
(4)
2
(8)
0
16
(94)
1
(6)
0
40
(95)
1
(2)
0
3
(9)
0
1
(2)
43
(100)
46
(100)
82
(100)
26
(100)
32
(100)
17
(100)
42
(100)
434
(91)
19
(4)
12
(2)
14
(3)
0
479
(100)
0
41
(100)
1
(1)
1
(1)
98
(100)
0
1
(7)
0
20
(100)
14
(100)
2
(11)
18
(100)
203
Table 13. Service engagement status at 12 months by gender and ethnicity - figures are frequency (col valid %)
Ethnicity
Gender
Male
Service
Engagement
Status
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
Unknown
Ethnicity
Total
Still Engaged
171
(88)
11
(6)
6
(3)
6
(3)
0
194
(100)
24
(96)
1
(4)
0
39
(91)
0
9
(100)
0
28
(96)
0
17
(94)
0
14
(93)
0
0
0
0
0
0
0
9
(100)
1
(3)
0
29
(100)
0
0
25
(100)
1
(2)
3
(7)
0
43
(100)
5
(83)
1
(17)
0
0
6
(100)
1
(6)
0
18
(100)
1
(7)
0
15
(100)
307
(90)
13
(4)
7
(2)
12
(4)
0
339
(100)
65
(88)
5
(7)
7
(100)
0
23
(96)
0
3
(100)
0
13
(100)
0
5
(100)
0
7
(88)
1
(12)
4
(66)
0
127
(91)
6
(4)
Discharged
3
(4)
0
1
(4)
0
0
0
0
1
(17)
5
(4)
Never
Engaged
1
(1)
0
0
0
0
0
0
1
(17)
2
(1)
0
74
(100)
0
7
(100)
0
24
(100)
0
3
(100)
0
13
(100)
0
5
(100)
0
8
(100)
0
6
(100)
0
140
(100)
Disengaged
Discharged
Never
Engaged
Missing
Total (Male)s
Female
Still Engaged
Disengaged
Missing
Total
(Female)s
© NCCSDO 2007
0
204
Table 14. Service engagement status at 12 months by ethnicity - figures are frequency (col valid %)
Ethnicity
Gender
Total (Male &
Female)
Service
Engagement
Status
Still Engaged
Disengaged
Discharged
Never Engaged
Missing
Total
© NCCSDO 2007
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
Unknown
Ethnicity
Total
236
(88)
16
(6)
9
(3)
7
(3)
0
268
(100)
31
(97)
1
(3)
0
62
(92)
0
12
(100)
0
41
(98)
0
0
0
24
(92)
1
(4)
0
18
(86)
0
2
(3)
3
(5)
0
67
(100)
10
(91)
1
(9)
0
0
1
(2)
0
42
(100)
0
1
(4)
0
26
(100)
434
(91)
19
(4)
12
(2)
14
(3)
0
479
(100)
0
0
32
(100)
0
12
(100)
0
11
(100)
1
(5)
2
(10)
0
21
(100)
205
Table15. Source of referral by gender (male) & service team – figures are frequency (col valid %)
Service Team
Gender
Male
Source of
Referral
A
B
C
D
E
F
G
H
I
J
K
L
Total
13
(23)
0
5(9)
1(6)
5(31)
2(13)
3(9)
0
1(6)
0
0
0
0
0
0
1(6)
0
5(33)
8(23)
0
0
0
0
40
(12)
1 (0)
12
(4)
78
(23)
2
(1)
1
(0)
1
(0)
1 (0)
55
(16)
3
(1)
41
(12)
General
Practioner
Private Doctor
CPN
0
6(9)
2(12)
5(42)
0
1(3)
2(7)
0
0
0
2(3)
0
0
1(8)
0
0
1(7)
0
2(6)
0
1(4)
Psychiatrist
0
3(19)
1(8)
2(14)
0
0
0
1(7)
18
(53)
1(3)
2(7)
Psychiatrist –
Drug Service
Neurologist
14
(20)
0
0
24
(42)
0
0
0
0
0
0
0
0
0
1(6)
0
0
0
Counsellor
0
1(1)
0
0
0
0
0
0
0
0
0
0
0
1(4)
0
4(6)
0
4(25)
1(8)
0
0
9(64)
0
4(12)
0
2(7)
0
3(5)
0
7(41)
0
8(50)
0
4(27)
0
9(26)
1(4)
2(3)
0
0
0
0
0
0
0
0
0
0
18
(69)
22
(32)
0
0
0
0
0
1(2)
0
0
0
0
0
0
2(12)
1(8)
0
1(3)
1(4)
0
1(6)
0
1(7)
2(20)
1(4)
1(1)
0
0
0
1(3)
4(14)
0
0
1(6)
0
6(17)
5(19)
4(25)
2(17)
1(7)
3(9)
5(18)
8(14)
3(18)
0
3(20)
7(20)
0
0
0
3(9)
4(14)
3(5)
2(12)
0
0
0
Casualty Dept
Psychiatric
Hospital
Primary Care
Team
Home
Treatment
Team
Child & Adol.
Service
CHMT
Unspecified
Other
Crisis
0
15
(22)
0
Missing
0
2(3)
1(6)
1(8)
0
0
7(25)
0
0
2(12)
0
0
26
(100)
69
(100)
16
(100)
12
(100)
14
(100)
34
(100)
28
(100)
57
(100)
17
(100)
16
(100)
15
(100)
206
35
(100)
© NCCSDO 2007
Total (Male)
9
(3)
14
(4)
56
(17)
12
(4)
13
(4)
339
(100)
Table 16. Source of referral by gender (female) & service team – figures are frequency (col valid %)
Service Team
Gender
Female
Source of
Referral
A
B
C
D
E
F
G
H
I
J
K
L
Total
General
Practioner
Private Doctor
CPN
1
(7)
0
0
1
(3)
0
4 (14)
0
2 (100)
2 (50)
0
2 (8)
2(22)
2(12)
0
1(14)
0
0
0
0
0
0
1
(11)
0
0
0
1(6)
0
3 (12)
0
0
0
0
0
1(50)
0
0
0
3 (10)
0
0
0
4 (44)
3(17)
12
(48)
1(11)
4(25)
0
2(28)
14
(10)
0
9
(6)
29
(21)
0
Psychiatrist
Psychiatrist –
Drug Service
Neurologist
Counsellor
Casualty Dept
Psychiatric
Hospital
Primary Care
Team
Home
Treatment
Team
Child & Adol.
Service
CHMT
Unspecified
Other
Crisis
Missing
Total (Female)
© NCCSDO
2007
0
1 (3)
2(50)
0
2 (50)
0
3(17)
0
3(33)
3(19)
0
0
1
(7)
11
(73)
0
0
0
0
0
1(6)
1(4)
0
0
0
0
10 (34)
0
0
0
1(11)
0
0
0
2(12)
0
0
1
(7)
0
0
2 (50)
0
0
2(22)
1(6)
0
0
0
0
0
0
0
0
0
0
1(6)
0
0
0
0
1
(7)
0
10 (34)
0
0
0
0
3(17)
2(8)
2(22)
3(19)
1(50)
0
0
0
0
1(11)
3(17)
5(20)
1(11)
2(12)
0
1
(14)
3
(43)
0
0
0
0
0
0
0
2(11)
0
0
0
0
0
15
(100)
29
(100)
4
(100)
2
(100)
4
(100)
9
(100)
18
(100)
25
(100)
9
(100)
16
(100)
2
(100)
7 207
(100)
0
0
0
14
(10)
3
(2)
24
(17)
6
(4)
2
(1)
25
(18)
12
(9)
2
(1)
140
(100)
Table 17. Source of referral by service team – figures are frequency (col valid %)
Service Team
Source of Referral
Gender
Total
(Male &
Female)
A
B
C
D
E
F
G
H
I
J
K
L
Total
1
(2)
0
7(7)
2(10)
7(50)
2(11)
2(5)
2(4)
2(12)
4(10)
0
1(7)
0
0
0
3
(12)
0
7(22)
0
15
(10)
0
0
0
0
CPN
0
6(6)
0
0
1(6)
2(5)
2(4)
8(10)
1(4)
0
1(6)
0
Psychiatrist
0
3(15)
1(7)
2(11)
4(12)
5(29)
0
0
1(6)
0
36
(44)
0
2(8)
0
22
(51)
1(2)
5(11)
Psychiatrist – Drug Service
17
(17)
0
0
0
0
10
(24)
0
Neurologist
0
0
0
0
0
0
0
0
1(4)
0
0
0
Counsellor
0
1(1)
0
0
0
0
0
0
0
0
0
0
Casualty Dept
0
0
0
1(7)
0
0
0
0
0
0
0
0
Psychiatric Hospital
1(2)
5(5)
6(30)
0
4(9)
5(11)
3(4)
2(2)
0
0
0
1(2)
1(1)
11
(34)
0
9(21)
2(5)
10
(38)
0
4(24)
Primary Care Team
11
(61)
0
0
0
Home Treatment Team
32
(33)
0
0
0
0
1(2)
0
1(1)
0
2(6)
0
0
Child & Adol. Service
29
(71)
1(2)
4(20)
1(7)
0
3(7)
2(4)
0
1(4)
0
1(6)
2(5)
CHMT Unspecified
1(2)
1(1)
0
0
0
1(2)
5(11)
0
0
1(3)
0
7(17)
Other
6(15)
4(20)
2(14)
1(6)
3(7)
8(17)
3(9)
4(24)
0
0
0
0
4(9)
7(15)
3(12)
2(6)
0
10
(24)
0
Missing
0
2
(2)
98
(100)
1(5)
1(7)
0
0
9(20)
10
(12)
8
(10)
0
5(19)
Crisis
25
(26)
0
0
2(6)
0
0
20
(100)
14
(100)
18
(100)
43
(100)
46
(100)
82
(100)
26
(100)
32
(100)
17
(100)
42
208
(100)
54
(11)
1
(0)
21
(4)
107
(22)
2
(0)
1
(0)
1
(0)
1
(0)
69
(14)
6
(1)
65
(14)
15
(3)
16
(3)
81
(17)
24
(5)
15
(3)
479
(100)
General Practioner
Private Doctor
Total
© NCCSDO 2007
41
(100)
Table 18. Source of referral by gender (male) & ethnicity – figures are frequency (col valid %)
Ethnicity
Gender
Male
Source of Referral
General Practioner
Private Doctor
CPN
Psychiatrist
Neurologist
Counsellor
Casualty Dept
Primary Care Team
Home Treatment Team
CHMT Unspecified
Other
Crisis
Missing
Total (Male)
© NCCSDO
2007
White
24
(12)
1 (0)
6
(3)
48
(25)
2
(1)
1
(0)
0
1 (0)
37
(19)
1
(0)
6
(3)
8
(4)
10
(5)
32
(16)
10
(5)
7
(4)
194
(100)
AsianIndian
4
(16)
0
0
AsianBangladeshi
0
8
(32)
0
AsianPakistani
2
(5)
0
2
(5)
7
(16)
0
0
0
0
3
(12)
2
(8)
6
(24)
0
0
1
(4)
0
1
(4)
25
(100)
BlackAfrican
1
(17)
0
0
2
(22)
0
BlackCaribbean
2
(7)
0
1
(3)
5
(17)
0
1
(17)
0
3
(17)
0
2
(11)
4
(22)
0
0
0
0
0
0
1
(2)
0
3
(7)
0
0
0
0
0
0
1
(11)
0
0
7
(24)
0
0
2
(33)
0
0
1
(6)
0
14
(32)
0
4
(44)
0
7
(24)
0
2
(33)
0
1
(6)
0
2
(5)
9
(21)
2
(5)
1
(2)
43
(100)
0
0
0
2
(22)
0
7
(24)
0
0
1
(6)
4
(22)
0
0
0
0
9
(100)
29
(100)
6
(100)
0
0
0
Other
2
(11)
18
(100)
Unknown
Ethnicity
4
(27)
0
1
(7)
3
(20)
0
Total
40
(12)
1 (0)
12
(4)
78
(23)
2
(1)
0
1
(0)
0
1
(0)
0
1 (0)
1
55
(7)
(16)
0
3
(1)
1
41
(7)
(12)
1
9
(7)
(3)
1
14
(7)
(4)
1
56
(7)
(17)
0
12
(4)
2
13
(13)
(4)
15
209 339
(100)
(100)
Table 19. Source of referral by gender (female) & ethnicity – figures are frequency (col valid %)
Ethnicity
Source of Referral
Gender
Female
General Practioner
Private Doctor
CPN
Psychiatrist
Neurologist
Counsellor
Casualty Dept
Primary Care Team
Home Treatment Team
CHMT Unspecified
Other
Crisis
Missing
Total (Female)
© NCCSDO
2007
White
AsianIndian
0
AsianPakistani
1
(4)
AsianBangladeshi
0
BlackCaribbean
0
BlackAfrican
0
Other
3
(4)
18
(24)
1
(4)
3
(43)
1
(4)
4
(17)
0
2
(15)
1
(8)
1
(20)
1
(20)
1
(12)
1
(12)
10
(14)
1
(1)
2
(3)
2
(3)
2
(3)
13
(18)
9
(12)
2
(3)
74
(100)
0
0
2
(15)
0
0
0
0
1
(4)
0
0
1
(14)
0
12
(50)
0
2
(67)
0
1
(20)
0
0
0
0
5
(38)
1
(20)
0
1
(12)
0
0
2
(33)
0
2
(28)
0
1
(33)
0
2
(15)
0
0
4
(17)
1
(4)
0
0
0
1
(20)
1
(20)
0
1
(12)
1
(12)
0
7
(100)
24
(100)
3
(100)
13
(100)
5
(100)
8
(100)
12
(16)
0
0
1
(12)
Unknown
Ethnicity
0
Total
0
9
(6)
29
(21)
1
(17)
1
(17)
1
(17)
1
(17)
1
(17)
0
14
(10)
14
(10)
3
(2)
24
(17)
6
(4)
2
(1)
1
25
(17)
(18)
0
12
(9)
0
2
(1)
6
210 140
(100)
(100)
Table 20. Source of referral by ethnicity – figures are frequency (col valid %)
Ethnicity
Source of Referral
Gender
Total
(Male &
Female)
General Practioner
Private Doctor
CPN
Psychiatrist
Neurologist
Counsellor
Casualty Dept
Primary Care Team
Home Treatment Team
CHMT Unspecified
Other
Crisis
Missing
Total
© NCCSDO
2007
White
36
(13)
1
(0)
9
93)
66
(25)
2
(1)
1
(0)
0
1
(0)
47
(18)
2
(1)
8
(3)
10
(4)
12
(4)
45
(17)
19
(7)
9
(3)
268
(100)
AsianIndian
4
(12)
0
AsianPakistani
3
(4)
0
AsianBangladeshi
0
1
(3)
11
0
0
3
(4)
11
(16)
0
0
0
0
3
(9)
2
(6)
7
(22)
0
0
3
(9)
0
1
(3)
32
(100)
BlackCaribbean
2
(5)
0
BlackAfrican
1
(9)
0
Other
4
(15)
0
Unknown
Ethnicity
4
(19)
0
2
(17)
0
3
(7)
6
(14)
0
1
(9)
2
(18)
0
3
(12)
5
(19)
0
1
(5)
4
(19)
0
0
0
0
0
0
0
1
(1)
0
0
0
0
0
0
0
0
0
0
0
4
(6)
0
1
(8)
0
9
(21)
0
2
(18)
0
26
(39)
0
6
(50)
0
3
(27)
0
2
(3)
13
(19)
3
(4)
1
(1)
67
(100)
0
12
(28)
1
(2)
0
3
(25)
0
9
(21)
0
2
(10)
1
(5)
2
(10)
2
(10)
1
(5)
2
(10)
0
0
0
1
(9)
1
(9)
0
12
(100)
42
(100)
11
(100)
1
(4)
1
(4)
1
(4)
2
(8)
1
(4)
5
(19)
1
(4)
2
(8)
26
(100)
0
0
2
(10)
21
(100)
211
Total
54
(11)
1
(0)
21
(4)
107
(22)
2
(0)
1
(0)
1
(0)
1
(0)
69
(14)
6
(1)
65
(14)
15
(3)
16
(3)
81
(17)
24
(5)
15
(3)
479
(100)
Table 21. Mental Health Act assessment by gender & ethnicity – figures are frequency (col valid %)
Ethnicity
Gender
Male
Assessed under
MHA?
AsianBangladeshi
4
(44)
5
(56)
0
BlackCaribbean
15
(52)
14
(48)
0
BlackAfrican
4
(67)
2
(33)
0
Other
25
(100)
AsianPakistani
16
(37)
25
(58)
2
(5)
43
(100)
9
(100)
29
(100)
6
(100)
18
(100)
33
(44)
41
(55)
0
5
(71)
2
(29)
0
5
(21)
19
(79)
0
1
(33)
2
(67)
0
7
(54)
6
(46)
0
3
(60)
2
(40)
0
2
25)
6
(75)
0
Total (Female)
74
(100)
7
(100)
24
(100)
3
(100)
13
(100)
5
(100)
8
(100)
Yes
128
(48)
138
(51)
2
(1)
268
(100)
19
(59)
13
(41)
0
21
(31)
44
(66)
2
(3)
67
(100)
5
(42)
7
(58)
0
22
(52)
20
(48)
0
7
(64)
4
(36)
0
9
(35)
17
(65)
0
12
(100)
42
(100)
11
(100)
26
(100)
Yes
No
Missing
Total (Male)
Female
Yes
No
Missing
Total
(Male & Female)
No
Missing
Total
© NCCSDO 2007
White
95
(49)
97
(50)
2
(1)
194
(100)
AsianIndian
14
(56)
11
(44)
0
32
(100)
7
(39)
11
(61)
0
Unknown
Ethnicity
3
(20)
10
(67)
2
(13)
15
(100)
Total
2
(33)
3
(50)
1
(17)
6
(100)
58
(41)
81
(58)
1
(1)
140
(100)
5
(24)
13
(62)
3
(14)
21
(100)
216
(45)
256
(53)
7
(1)
479
(100)
212
158
(46)
175
(52)
6
(2)
339
(100)
Table 22. Mental Health Act assessment outcome by gender & EIS – figures are frequency (col valid %)
Service Team
Gender
Male
Outcome of MHA
A
B
C
D
E
F
G
H
I
J
K
L
Total
2
(25)
0
1
(12)
0
1
(33)
0
7
(41)
0
2
(67)
0
5
(31)
2
(12)
9
(56)
0
4
(24)
0
6
(75)
1
(12)
0
7
(50)
1
(7)
6
(43)
0
8
(40)
2
(10)
10
(50)
0
0
0
9
(53)
1
(6)
0
0
0
8
(100)
27
(100)
8
(100)
3
(100)
14
(100)
16
(100)
17
(100)
11
(100)
4
(36)
1
(9)
1
(9)
2
(18)
3
(27)
11
(100)
6
(50)
2
(17)
4
(33)
0
0
8
(47)
2
(12)
3
(18)
17
(100)
4
(36)
1
(9)
6
(54)
0
0
8
(30)
1
(4)
16
(59)
2
(7)
0
12
(100)
20
(100)
57
(35)
10
(6)
83
(51)
8
(5)
6
(4)
164
(100)
Voluntary Admission only
0
1
(100)
0
3
(43)
0
4
(40)
0
2
(40)
0
3
(38)
0
0
6
(60)
0
0
0
3
(75)
0
3
(43)
0
0
0
0
0
0
0
2
(40)
1
(20)
0
4
(50)
1
(12)
0
0
0
6
(100)
10
(100)
4
(100)
1
(100)
2
(100)
4
(100)
1
(14)
7
(100)
3
(30)
3
(30)
0
1
(50)
1
(50)
0
0
6
(100)
0
1
(50)
1
(50)
0
1
(25)
0
0
0
3
(75)
1
(25)
0
0
Voluntary Admission to
Section
Sectioned
4
(40)
0
10
(100)
5
(100)
8
(100)
2
(100)
0
Voluntary Admission only
Voluntary Admission to
Section
Sectioned
Community
Missing
Total (Male)
Female
Community
Missing
Total (Female)
© NCCSDO 2007
6
(75)
0
0
0
0
0
213
21
(36)
3
(5)
29
(49)
5
(8)
1
(2)
59
(100)
Table 23. Mental Health Act assessment outcome by EIS – figures are frequency (col valid %)
Service Team
Gender
Total
(Male & Female)
Outcome of MHA
Voluntary Admission
only
Voluntary Admission
to Section
Sectioned
Community
Missing
Total
© NCCSDO 2007
A
B
C
D
E
F
G
H
I
J
K
L
Total
2
(14)
0
4
(33)
1
(8)
6
(50)
1
(8)
0
2
(50)
0
6
(30)
2
(10)
12
(60)
0
7
(29)
0
11
(41)
0
2
(50)
0
7
(44)
2
(12)
7
(44)
0
0
0
12
(44)
4
(15)
0
0
0
14
(100)
37
(100)
12
(100)
4
(100)
16
(100)
20
(100)
27
(100)
16
(100)
7
(37)
1
(5)
5
(26)
3
(16)
3
(16)
19
(100)
8
(40)
2
(10)
10
(50)
0
0
11
(46)
2
(8)
4
(17)
24
(100)
6
(38)
1
(6)
8
(50)
1
(6)
0
6
(43)
3
(21)
5
(36)
0
0
12
(32)
1
(3)
22
(59)
2
(5)
0
14
(100)
20
(100)
78
(35)
13
(6)
112
(50)
13
(6)
7
(3)
223
(100)
12
(86)
0
214
Table 24. Mental Health Act Assessment outcome by gender & ethnicity – figures are frequency (col valid %)
Ethnicity
Gender
Male
Outcome of
MHA
Voluntary
Admission
only
Voluntary
Admission to
Section
Sectioned
Community
Missing
Total
Female
Voluntary
Admission
only
Voluntary
Admission to
Section
Sectioned
Community
Missing
Total
© NCCSDO 2007
White
Asian-Indian
AsianPakistani
4
(22)
AsianBangladeshi
0
BlackCaribbean
2
(13)
BlackAfrican
3
(75)
Other
Unknown
Ethnicity
0
Total
40
(42)
5
(36)
4
(4)
1
(7)
0
1
(25)
3
(20)
0
0
1
(20)
10
(6)
47
(48)
4
(4)
2
(2)
97
(100)
7
(50)
1
(7)
0
2
(50)
1
(25)
0
9
(60)
0
14
(100)
11
(60)
1
(6)
2
(11)
18
(100)
1
(25)
0
1
(25)
0
2
(40)
0
0
0
0
4
(100)
14
(100)
4
(100)
4
(100)
2
(40)
5
(100)
83
(51)
8
(5)
6
(4)
164
(100)
13
(39)
1
(20)
2
(40)
0
1
(14)
1
(33)
1
(50)
2
(67)
21
(36)
2
(6)
0
0
0
1
(14)
0
0
0
3
(5)
14
(42)
4
(12)
0
4
(80)
0
3
(60)
0
1
(100)
0
5
(71)
0
1
(50)
0
0
0
0
0
0
1
(33)
1
(33)
0
0
33
(100)
5
(100)
5
(100)
1
(100)
7
(100)
3
(100)
2
(100)
1
(33)
3
(100)
29
(48)
5
(8)
1
(2)
59
(100)
3
(75)
0
57
(35)
215
Table 25. Mental Health Act assessment outcome by ethnicity – figures are frequency (col valid %)
Ethnicity
Gender
Total
(Male &
Female)
Outcome of
MHA
Voluntary
Admission
only
Voluntary
Admission to
Section
Sectioned
Community
Missing
Total
© NCCSDO 2007
White
53
(41)
AsianIndian
6
(32)
6
(5)
1
(5)
61
(47)
8
(6)
2
(2)
130
(100)
11
(58)
1
(5)
0
19
(100)
AsianPakistani
6
(26)
14
(61)
1
(4)
2
(9)
23
(100)
AsianBangladeshi
0
BlackCaribbean
3
(14)
BlackAfrican
4
(57)
Other
Unknown
Ethnicity
2
(25)
Total
1
(20)
4
(18)
0
0
1
(12)
13
(6)
3
(60)
1
(20)
0
14
(64)
1
(4)
0
2
(28)
1
(14)
0
5
(56)
0
2
(25)
0
0
7
(100)
9
(100)
3
(38)
8
(100)
112
(50)
13
(6)
7
(3)
223
(100)
5
(100)
22
(100)
4
(44)
78
(35)
216
Table 26. Living arrangements by gender & ethnicity - figures are frequency (col valid %)
Ethnicity
Gender
Male
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
Unknown
Ethnicity
Total
30
(15)
8
(4)
125
(64)
29
(15)
2
(1)
194
(100)
1
(4)
2
(8)
19
(76)
3
(12)
0
1
(2)
2
(5)
36
(84)
4
(9)
0
0
9
(31)
1
(3)
13
(45)
6
(21)
0
1
(17)
0
2
(33)
3
(50)
0
6
(33)
2
(11)
7
(39)
3
(17)
0
4
(27)
1
(7)
8
(53)
2
(13)
0
25
(100)
43
(100)
29
(100)
6
(100)
18
(100)
15
(100)
52
(15)
16
(5)
218
(64)
50
(15)
3
(1)
339
(100)
16
(22)
13
(18)
0
1
(4)
3
(12)
0
1
(20)
0
0
0
8
(62)
0
3
(38)
2
(33)
1
(17)
28
(20)
20
(14)
Lives with parents
30
(40)
5
(71)
19
(79)
2
(67)
2
(15)
4
(80)
3
(38)
1
(17)
66
(47)
Other living
arrangements
15
(20)
2
(29)
1
(4)
1
(33)
3
(23)
0
2
(25)
2
(33)
26
(19)
Missing
Total (Female)
0
74
(100)
0
7
(100)
0
24
(100)
0
3
(100)
0
13
(100)
0
5
(100)
0
8
(100)
0
6
(100)
0
140
(100)
Living
Arrangement
Lives alone
Lives with
partner/spouse
Lives with parents
Other living
arrangements
Missing
Total (Male)s
Female
Lives alone
Lives with
partner/spouse
© NCCSDO 2007
0
0
8
(89)
0
1
(11)
9
(100)
217
Table 27. Living arrangements by ethnicity - figures are frequency (col valid %)
Ethnicity
Gender
Living
Arrangement
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
Unknown
Ethnicity
Total
Total
(Male &
Female)
Lives alone
46
(17)
21
(8)
155
(58)
44
(16)
2
(1)
268
(1000
1
(3)
2
(6)
24
(75)
5
(16)
0
2
(3)
5
(7)
55
(82)
5
(7)
0
0
17
(40)
1
(2)
15
(36)
9
(21)
0
2
(18)
0
6
(54)
3
(27)
0
6
(23)
5
(19)
10
(38)
5
(19)
0
6
(28)
2
(10)
9
(43)
4
(19)
0
32
(100)
67
(100)
42
(100)
11
(100)
26
(100)
21
(100)
80
(17)
36
(8)
284
(59)
76
(16)
3
(1)
479
(100)
Lives with
partner/spouse
Lives with
parents
Other living
arrangements
Missing
Total
© NCCSDO 2007
0
10
(83)
1
(8)
1
(8)
12
(100)
218
Table 28. Employment status by gender & service team - figures are frequency (col valid %)
Gender
Male
Employment
Status
Employed
Economically
active student
Economically
inactive
student
Unemployed
Other
Missing
Total (Male)
Female
Employed
Economically
active student
Economically
inactive
student
Unemployed
Other
Missing
Total (Female)
© NCCSDO 2007
Service Team
G
H
A
B
C
D
E
F
6
(23)
1
(4)
1
(4)
12
(17)
1
(1)
2
(3)
0
4(33)
1(7)
3(9)
3(11)
1
(6)
4
(25)
2(17)
2(14)
1(3)
0
2(14)
17
(65)
1
(4)
0
47
(68)
5
(7)
2(3)
10
(62)
1
(6)
0
6(50)
9(64)
0
26
(100)
69
(100)
2
(13)
2
(13)
4
(27)
6
(40)
1(7)
0
15
(100)
I
J
K
L
Total
4(24)
2(12)
2(13)
8(23)
1(4)
18
(32)
2(4)
0
0
2(13)
5(14)
2(6)
4(14)
2(4)
2(12)
2(12)
2(13)
5(14)
63
(18)
18
(5)
28
(8)
17(61
)
3(11)
31
(54)
2(4)
10
(59)
0
9(56)
8(53)
0
28
(82)
0
1(6)
0
15
(43)
1(3)
0
0
0
0
2(4)
1(6)
2(12)
1(6)
1(3)
16
(100)
12
(100)
14
(100)
34
(100)
28
(100)
57
(100)
17
(100)
16
(100)
15
(100)
35
(100)
1(3)
0
0
2(50)
3(33)
1(6)
4(44)
6(38)
1(50)
2(28)
1(3)
2(50)
0
0
3(33)
5(28)
10
(40)
0
0
1(6)
0
0
6(21)
1(25)
0
1(25)
0
5(28)
1(4)
5(56)
2(12)
0
0
14
(48)
7(24)
1(25)
2
(100)
0
1(25)
3(33)
5(28)
0
3(19)
1(50)
3(43)
0
0
2(11)
14
(56)
0
0
4(25)
0
2(28)
0
0
0
0
0
0
0
0
0
0
4
(100)
2
(100)
4
(100)
9
(100)
18
(100)
25
(100)
9
(100)
16
(100)
2
(100)
7
(100)
0
29
(100)
0
207
(61)
14
(4)
9
(3)
339
(100)
32
(23)
14
(10)
25
(18)
53
(3)
16
(11)
0
140
(100)
219
Table 29. Employment status by service team - figures are frequency (col valid %)
Service Team
Gender
Total
(Male &
Female
Employment
Status
Employed
Economically
active student
Economically
inactive
student
Unemployed
Other
Missing
Total
© NCCSDO 2007
A
B
C
D
E
F
G
H
I
J
K
L
Total
8
(20)
3
(7)
5
(12)
13
(13)
2
(2)
8
(8)
0
4
(29)
2
(14)
0
3
(17)
2
(11)
3
(17)
6
(14)
4
(9)
2
(5)
4
(9)
6
(13)
9
(20)
28
(34)
2
(2)
3
(4)
8
(31)
0
8
(25)
1
(3)
4
(12)
3
(18)
2
(12)
2
(12)
10
(24)
5
(12)
5
(12)
95
(20)
32
(7)
53
(11)
23
(56)
2
(5)
0
61
(62)
12
(12)
2
(2)
98
(100)
11
(55)
1
5)
0
8
(57)
0
10
(56)
0
31
(72)
0
0
20
(100)
14
(100)
18
(100)
43
(100)
46
(100)
12
(38)
5
(16)
2
(6)
32
(100)
9
(53)
0
0
45
(55)
2
(2)
2
(2)
82
(100)
10
(38)
0
0
22
(48)
5
(11)
0
18
(43)
3
(7)
1
(2)
42
(100)
260
(54)
30
(6)
9
(2)
479
(100)
41
(100)
3
(15)
5
(25)
7
(27)
1
(4)
26
(100)
1
(6)
17
(100)
220
Table 30. Employment status by gender & ethnicity - figures are frequency (col valid %)
Ethnicity
Gender
Male
Employment
Status
Employed
Economically
active student
Economically
inactive
student
Unemployed
Other
Missing
Total (Male)
Female
Employed
Economically
active student
Economically
inactive
student
Unemployed
Other
Missing
Total (Female)
© NCCSDO 2007
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
Unknown
Ethnicity
Total
38
(20)
15
(8)
18
(9)
6
(24)
2
(8)
2
(8)
7
(16)
0
0
0
0
5
(17)
0
2
(11)
0
3
(7)
0
0
3
(50)
0
5
(33)
1
(7)
2
(13)
63
(18)
18
(5)
28
(8)
111
(57)
8
(4)
4
(2)
194
(100)
15
(60)
0
28
(65)
4
(9)
1
(2)
43
(100)
7
(78)
0
23
(79)
1
(3)
0
2
(33)
0
14
(78)
1
(6)
1
(6)
18
(100)
7
(47)
0
207
(61)
14
(4)
9
(3)
339
(100)
0
25
(100)
23
(31)
9
(12)
1
(14)
0
1
(4)
2
(8)
12
(16)
1
(14)
6
(25)
25
(34)
5
(71)
5
(7)
0
74
(100)
0
0
7
(100)
2
(22)
9
(100)
0
29
(100)
0
1
(17)
6
(100)
0
15
(100)
2
(15)
1
(8)
1
(20)
0
1
(12)
2
(25)
3
(50)
0
32
(23)
14
(10)
0
1
(8)
3
(60)
1
(12)
1
(17)
25
(18)
8
(33)
2
(67)
7
(54)
0
4
(50)
2
(33)
53
(38)
7
(29)
0
24
(100)
1
(33)
0
3
(100)
2
(15)
0
13
(100)
1
(20)
0
5
(100)
0
0
0
8
(100)
0
6
(100)
16
(11)
0
140
(100)
0
221
Table 31. Employment status by ethnicity - figures are frequency (col valid %)
Ethnicity
Gender
Total
(Male &
Female)
Employment
Status
Employed
Economically
active
student
Economically
inactive
student
Unemployed
Other
Missing
Total
© NCCSDO 2007
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
Unknown
Ethnicity
Total
61
(23)
24
(9)
7
(22)
2
(6)
8
(12)
2
(3)
0
7
(17)
1
(2)
1
(9)
0
3
(12)
2
(8)
8
(38)
1
(5)
95
(20)
32
(7)
30
(11)
3
(9)
9
(13)
0
1
(2)
6
(54)
1
(4)
3
(14)
53
(11)
136
(51)
13
(5)
4
(1)
268
(100)
20
(62)
0
36
(54)
11
(16)
1
(1)
67
(100)
9
(75)
1
(8)
2
(17)
12
(100)
30
(71)
3
(7)
0
2
(18)
1
(9)
1
(9)
11
(100)
18
(69)
1
(4)
1
(4)
26
(100)
9
(43)
0
260
(54)
30
(6)
9
(2)
479
(100)
0
32
(100)
0
42
(100)
0
21
(100)
222
Table 32. Risks in the last 12 months by gender (male) & ethnicity – figures are frequency; mean (SD)
Ethnicity
Type of Risk
Gender
Male
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
1; 1.0
(N/A)
2; 1.0
(0)
2; 1.0
(0)
1; 2.0
(N/A)
1; 1.0
(N/A)
2; 4.0
(1.4)
BlackAfrican
Other
Unknown
Ethnicity
Total
4; 1.5
(1.0)
1; 2.0
(N/A)
2; 1.0
(0)
16; 1.1
(0.34)
27; 1.8
(1.2)
2; 1.5
(0.71)
1; 1.0
(N/A)
1; 1.0
(N/A)
8; 1.0
(1, 1)
51; 1.7
(1.7)
7; 2.3
(0.8)
4; 4.0
(4.0)
3; 2.0
(0)
2, 6.0
(6.7)
118
Suicides
Parasuicides
Deliberate selfharm incidents
(DSHs)
Violent attacks
Perpetrated attacks
Parasuicides &
DSHs
Parasuicides &
Perpetrated attacks
Violent &
Perpetrated attacks
Other Risks
Total
© NCCSDO 2007
11; 1.1
(0.3)
16; 1.8
(1.1)
3; 1.0
(0)
30; 1.3
(0.8)
5; 2.4
(0.9)
4; 4.0
(4.0)
2, 2.0
(0)
2; 6.0
(6.7)
73
1; 1.0
(N/A)
1; 1.0
(N/A)
8; 1.4
(0.7)
3; 3.7
(2.1)
2; 1.0
(0)
6; 3.2
(4.0)
2; 2.0
(0)
1; 1.0
(N/A)
1; 2.0
(N/A)
4
11
4
13
1
7
5
223
Table 33. Risks in the last 12 months by gender (female) & ethnicity – figures are frequency; mean (SD
Ethnicity
Type of Risk
Gender
Female
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
1; 1.0
(N/A)
1; 1.0
(N/A)
1; 1.0
(N/A)
1; 2.0
(N/A)
1; 1.0
(N/A))
1; 1.0
(N/A)
BlackAfrican
Other
Unknown
Ethnicity
Total
Suicides
Parasuicides
(DSHs)
Violent attacks
Perpetrated attacks
Parasuicides &
DSHs
Parasuicides &
Perpetrated attacks
Violent &
Perpetrated attacks
Other Risks
Total
© NCCSDO 2007
7; 1.7
(0.76)
4; 1.2
(0.5)
10; 1.5
(0.7)
8; 1.8
(1.4)
1; 5.0
(N/A)
1; 6.0
(N/A)
2; 8.0
(9.9)
6; 5.7
(4.7)
2; 2.0
(0)
21
1; 1.0
(N/A)
1; 101
(N/A)
1; 2.0
(N/A)
2
3
1; 12.0
(N/A)
1
4
1; 4.0
(N/A)
2
1
1; 6.0
(N/A)
3; 5.7
(8.1)
7; 19.3
(36.3)
4; 4.5
(5)
1; 4.0
(N/A)
34
224
Table 34. Risks in the last 12 months by ethnicity – figures are frequency; mean (SD)
Ethnicity
Type of Risk
Gender
Total
(Male &
Female)
Suicides
Parasuicides
(DSHs)
Violent attacks
Perpetrated attacks
Parasuicides &
DSHs
Parasuicides &
Perpetrated attacks
Violent &
Perpetrated attacks
Other Risks
Total
© NCCSDO 2007
White
AsianIndian
AsianPakistani
AsianBangladeshi
BlackCaribbean
BlackAfrican
Other
Unknown
Ethnicity
Total
0
0
0
0
0
0
0
0
0
2; 1.0
(0)
3; 1.0
(0)
3; 1.0
(0)
2; 2.0
(0)
2; 1.0
(0)
3; 3.0
(0)
5; 2.2
(1.79)
1; 1.0
(N/A)
2; 1.0
(0)
26; 1.3
(0.53)
35; 1.8
(1.2)
1; 1.0
(N/A)
1; 1
(N/A)
1; 101.0
(N/A)
9; 1.6
(1.7)
54; 1.9
(2.4)
14;
10.8
(26.2)
8; 4.2
(4.2)
3; 2
(0)
3; 6
(6.3)
152
18; 1.3
(0.6)
20; 1.6
(1.0)
3; 1.0
(0)
32; 1.8
(2.5)
11; 4.2
(3.8)
6; 3
(2, 2)
2; 2
(0)
2; 6
(6.7)
94
2; 3.5
(3.5)
1; 1.0
(N/A)
8; 1.4
(0.7)
3; 3.7
(2.1)
1; 2
(N/A)
6
14
2; 1.0
(0)
7; 2.9
(3.8)
2; 2.0
(0)
1; 1.0
(N/A)
2; 1.5
(0.7)
1; 12
(N/A)
5
17
1
1; 2
(N/A)
1; 4
(N/A)
9
6
225
the West Midlands
Table 35: Variables used in economic analysis (with level of completeness)
Variable
Description
Missing
(%)
Baseline Patient Characteristics
Age
Gender
DUP
Age
1 = Male , 0 = Female
Duration of untreated psychosis
0
0
6.9
Ethnicity
1 = Asian Indian, 0 = Otherwise
1 = Asian Pakistani, 0 = Otherwise
1 = Asian Bangladeshi, 0 = Otherwise
1 = Black Caribbean, 0 = Otherwise
1 = Black African, 0 = Otherwise
1 = Other ethnicity, 0 = Otherwise
1 = White, 0 = Otherwise
4.4
Asian Indian
Asian Pakistani
Asian Bangladeshi
Black Caribbean
Black African
Other
White
Education
1 = Still in Education, 0 = Otherwise
0.1
Process Measures
Rurality
Fidelity
Service status
Mental Health Act (MHA)
Assessment
1 = rural; 0 = otherwise
Fidelity Score
1= Still Engaged, 0 = Otherwise
1 = Patient assessed under MHA, 0 =
Otherwise
0
0
0
1.5
Source of referral
0 = Otherwise, 1 = CPN/CHMT
0 = Otherwise, 1 = Psychiatrist
0 = Otherwise, 1 = Psychiatric Hospital
3.1
Referral – CPN/CHMT
Referral – Psychiatrist
Hospital
Referral – Home
Treatment Team
Referral – Crisis Team
Referral – GP/PCT
Referral – Other
0 = Otherwise, 1 = Home treatment home
0 = Otherwise, 1 = Crisis Intervention
Team
0 = Otherwise, 1 = GP/PCT
0 = Otherwise, 1 = Other Referrer
Outcome Measures
Lives alone
Lives with partner
Lives with parents
Other living arrangements
Employed
Economically active
Student
Economically inactive
Student
© NCCSDO 2007
Living Arrangements at 12 months
1 = Lives alone 0 = Otherwise
1 = Lives with partner/spouse, 0 =
Otherwise
1 = Lives with parents, 0 = Otherwise
1= Other Living arrangements,
0=Otherwise
0.6
Employment Status at 12 months
1 = Employed, 0 = Otherwise
1 = Student economically active, 0 =
Otherwise
1 = Lives with parents, 0 = Otherwise
1= Other Living arrangements, 0 =
1.9
226
the West Midlands
No of Parasuicides
No of Deliberate self harm
incidents
No of Violent attacks
No of Perpetrated attacks
© NCCSDO 2007
Otherwise
Adverse Risks in last 12 months
No of Parasuicides
No of Deliberate self harm incidents
1
227
the West Midlands
Table 36. DUP Model
Main Effects Model
Baseline
Characteristics
Variables
Age
Gender
Ethnicity
Ethnicity
Ethnicity
Ethnicity
Ethnicity
Ethnicity
Ethnicity
Group)
Process
Measures
–
–
–
–
–
–
–
Asian Indian
Asian Pakistani
Asian Bangladeshi
Black Caribbean
Black African
Other
White (Reference
Std
err
0.016
0.173
Z
-0.954
1.101
0.140
-0.096
0.018
-0.453
0.465
-0.242
0.270
0.256
0.412
0.266
0.457
0.319
0.516
-0.374
0.045
-1.702
1.016
-0.759
Exp
(Coeff)
0.984
1.016
1.386
1.150
1.310
1.291
1.510
1.305
1.580
1.375
Still in Education (1=Yes, 0 =
No)
-0.144
0.326
-0.442
0.866
Rurality (1 = rural; 0 =
otherwise)
Fidelity Score
-0.211
-0.006
0.211
0.004
-1.002
-1.370
0.810
1.234
0.593
-0.518
-0.213
0.429
0.645
0.561
1.383
-0.802
-0.380
1.809
1.536
1.906
-0.485
0.158
-3.077
0.616*
0.324
0.830
0.517
0.326
0.258
0.294
0.993
3.216
1.757
1.383
1.386**
1.295
0.697
0.295
2.362
1.342*
0.200
0.798
0.940
0.528
0.379
0.263
0.380
2.107
3.571
1.343
1.695*
1.460**
-0.192
-0.370
0.018
0.306
0.206
0.247
-0.628
-1.799
0.072
0.825
1.358
1.228
-0.219
0.416
-0.528
0.803
0.244
0.238
0.390
0.176
0.625
1.356
1.516
1.477
Service Status - Disengaged
Service Status - Discharged
Service Status - Never engaged
Service Status – Still engaged
(Reference Group)
Assessed under MHA (1=Yes;
0=No)
Referral – Psychiatrist Hospital
Referral – Home Treatment
Team
Referral –Child/Adolescent
Service
Referral – Other
Referral – GP/PCT
(Reference Group)
Outcome
Measures
Coeff.
-0.016
0.190
Lives with Partner/Spouse
Lives with Parents
Lives alone (Reference Group)
Employment
student
Employment
student
Employment
Employment
© NCCSDO 2007
– Econ. active
– Econ. inactive
– Unemployed
– Employed
228
the West Midlands
(Reference Group)
No of Parasuicides
incidents
0.230
0.219
1.049
1.259
0.052
0.088
0.017
0.088
0.490
0.069
0.591
0.180
0.247
1.245
1.092
1.632
Constant
3.844
1.001
3.840
46.712**
R-Squared
Dep. variable = DUP;
n =378
© NCCSDO 2007
* Sig. at 5% level
0.318
** Sig. at 1% level
229
the West Midlands
Table 37. Logistic model
Main Effects Model
Baseline
Characteristics
Variables
Age
Gender
Duration of Untreated Psychosis
Ethnicity
Ethnicity
Ethnicity
Ethnicity
Ethnicity
Ethnicity
Ethnicity
Group)
–
–
–
–
–
–
–
Asian Indian
Asian Pakistani
Asian Bangladeshi
Black Caribbean
Black African
Other
White (Reference
Still in Education (1=Yes, 0 =
No)
Process
Measures
Rurality (1 = rural; 0 =
otherwise)
Fidelity Score
Engagement (1=Yes,
0=Otherwise)
Referral – Psychiatrist Hospital
Referral – Home Treatment
Team
Referral – Other
Referral – GP/PCT
(Reference Group)
Outcome
Measures
Lives with Partner/Spouse
Lives with Parents
Lives alone (Reference Group)
Employment – Econ. active
student
Employment – Econ. inactive
student
Employment – Unemployed
Employment – Employed
(Reference Group)
No of Parasuicides
incidents
© NCCSDO 2007
Odds
Ratio
0.935
0.527
0.996
Std
err
0.039
0.256
0.011
Z
-1.630
-1.322
-0.362
0.982
0.754
3.609
2.137
0.193
0.868
0.683
0.563
7.433
1.676
0.225
0.725
-0.050
-0.434
0.718
0.964
-1.424
-0.182
12.629
18.359
1.848
0.879
0.999
0.452
0.011
-0.252
-0.122
0.719
0.603
-0.398
0.099
0.136
0.207
0.139
0.152
0.234
-1.678
-1.794
-1.418
0.462
0.123
0.161
0.629
0.169
0.191
-0.596
-1.592
-1.580
1.137
0.937
0.986
0.846
0.484
0.650
0.174
-0.132
-0.022
0.013
0.025
2.502*
0.134
1.690
0.193
0.819
-1.522
1.078
0.317
0.168
2.164*
0.945
0.839
0.229
1.115
-0.236
-0.132
230
the West Midlands
R-Squared
Dep. Variable = Whether subject to a section or not
1.173
0.183
1.022
0.18
n =167
* Sig. at 5% level
© NCCSDO 2007
231
the West Midlands
Appendix 9: Fidelity scale
© NCCSDO 2007
232
Date of completion:
A. Respondent Details
Name:
Speciality:
Contact E-Mail Address:
Contact Telephone Number:
B. Service Descriptors
Service Name:
Location: (Select one4)
Urban
Rural
Inner City
Description of catchment area5:
Description of team staffing6:
Parent organization7 type:
Mental Health Trust
Description of team model8:
Stand alone
Out posting
Hub and spoke
Hybrid
Primary
Care Trust
Social Services
Voluntary Sector
Other (please define):
4
Select the description that best describes your location. For example, predominately urban with some rural areas, select ‘Urban’.
Including which area included, size of catchment area, population density and ethnicity
6
including number and type of whole time equivalent (wte) staff employed
7
The parent organisation can be defined as the organisation that employs the majority of the team’s staff
8
Definitions of Team Models: Stand alone – a functional team that links with other teams; out posting – one or more workers who have
the responsibility for early intervention services who are based in another agency; hub and spoke – one or more workers who have the
responsibility for early intervention but are part of a more generic mental health team; hybrid – a mixture of the above; other –
something completely different
5
© NCCSDO 2007
233
Number of clients served in the
last 12 months:
Which statement concerning PIG
best describes your service and
intentions:
Name of Team Leader:
© NCCSDO 2007
As a service we
are PIG compliant
in most areas, and
aim for full PIG
compliance
As a service we are PIG
compliant in some areas, but
are aiming for full PIG
compliance
As a service we are not aiming
for full PIG compliance, but
flexibility from PIG for local
service reasons
Speciality of Team Leader:
234
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
1
The team only accepts clients who have had
no more than one episode of psychosis
Greater than 50% of 31-50% of clients
clients had more
had more than one
than one episode at episode at entry
entry
11-30% of clients
had more than one
episode at entry
10% or less of clients
had more than one
episode at entry
2
The EIS controls access to separate ageappropriate inpatient and crisis facilities10
There is no access to There is access to
separate facilities for separate crisis and
young people
inpatient facilities,
but the EIS does not
control this access
The EIS has control
of separate crisis OR
inpatient facilities for
young people
The EIS has control
of separate crisis
AND inpatient
facilities for young
people
3
The EIS is a stand alone service composed
of staff whose sole or main responsibility is
to the EIS
The EIS has no
separate team
identity (made up of
individuals who are
members of other
teams)
The EIS is a distinct
team, but greater
than 50% of staff
have clinical
commitments to
other teams
team, but 11-50% of
staff have
commitments to
other teams
team, 10% or less of
staff have
commitments to
other teams
4
The EIS team contains two formally trained
and accredited cognitive therapists11
No members have
undergone formal
training in CBT for
psychosis
One or more
members have had
non-accredited
formal training in
CBT for psychosis.
One member has
completed an
accredited training
course in CBT for
psychosis
Two or more
members have
completed an
accredited training
course in CBT for
psychosis
9
Please check one anchor per criterion using a physical tick for printed forms, or a mouse click on the electronic form. The direction of
increasing fidelity is moving from 1 to 4.
10
Facilities defined as crisis care and inpatient facilities.
11
‘Formal training’ means experience of supervised training as part of a recognised training program. ‘Accredited’ means awarded a
certificate of competence in CBT by a recognised training body.
© NCCSDO 2007
235
RATINGS/ANCHORS9
CRITERION
(1)
(2)
The EIS has an emphasis on client's views
concerning their problems and level of
functioning
The EIS protocol
does not mention
the importance of
client's views on
problems and
functioning
6
The EIS has 50% of the dedicated time of a
general adult Consultant psychiatrist for
every 250,000 population12
EIS has no dedicated EIS has less than
Consultant time, but 20% dedicated
relates to
Consultant time
Consultants from
other teams
7
The EIS has one wte13 general adult
psychiatric nurse for every 250,000
population
No psychiatric nurse EIS has less than
EIS has 21-50% wte EIS has greater than
20% wte psychiatric psychiatric nurse
50% wte psychiatric
nurse
nurse
8
The EIS has 50% wte clinical psychologist
per 250,000
No clinical
psychologist
13
EIS has less than
20% wte clinical
psychologist
The EIS
systematically
records client's
views on problems,
functioning and the
nature of their
condition at entry
and during the
course of treatment
(4)
5
12
At entry the EIS
systematically
records client's
views on problems,
functioning and their
understanding of the
nature of their
condition according
to the EIS protocol
(3)
As 3 but clients are
encouraged to
formally monitor their
own problems or
functioning, and
steps are taken to
improve the client's
understanding of
their condition
EIS has 21-50%
EIS has greater than
dedicated Consultant 50% dedicated
time
Consultant time
clinical psychologist 50% wte clinical
psychologist
Subtract 50,000 for inner city. May have to say senior outside UK.
wte = whole time equivalent
© NCCSDO 2007
236
RATINGS/ANCHORS9
CRITERION
(1)
9
The EIS should have specialist support from
when prescribing for under 16 year olds
No specialised
support or does not
accept under 16
year olds
10
The EIS has an open referral system
11
12
(2)
Informal access to
advice from CAMHS
or specialised
pharmacist, but no
direct care
(3)
(4)
Separate CAMHS or
specialised
pharmacist, may
advise and visit, but
do not form part of
the team.
The EIS contains a
team member who
has experience of
prescribing for
CAMHS clients
The EIS only accepts The EIS accepts
referrals from
referrals from
secondary care.
primary and
secondary care
As 2 but the EIS also
accepts referrals
from statutory and
voluntary agencies
The EIS accepts
referrals from all
sources including self
referrals and referrals
by relatives
The EIS runs psychosis identification
training programmes which are continuously
audited and adjusted14
EIS has no training
programs to audit
The EIS annually
As 3 but evidence
audits effectiveness that the audit also
of training programs leads to adjustments
in training practices
90% of referred clients begin assessment
within 3 weeks of initial referral
20% or less of
21-50% of clients
clients begin
begin assessment
assessment within 3 within 3 weeks of
weeks of initial
initial referral
referral
The EIS has regular
training programs
but does not audit
effectiveness
51-85% of clients
begin assessment
within 3 weeks of
initial referral
Greater than 85% of
clients begin
assessment within 3
weeks of initial
referral
14
Training should be designed for key target groups in primary care and the community including primary care clinicians,
teachers, voluntary groups, etc.
© NCCSDO 2007
237
RATINGS/ANCHORS9
CRITERION
(1)
(2)
The standard EIS
assessment includes
the formal
assessment of two of
the following:
psychiatric history,
mental state, risk,
social functioning,
family/significant
others
13
The EIS includes a formal assessment of
psychiatric history, mental state
examination, risk, social functioning, family
and significant others
The standard EIS
assessment includes
the formal
assessment of no
more than one of
the following:
mental state, risk,
social functioning,
family/significant
others
14
Risk of suicide is routinely and formally
assessed according to protocol
15
After stabilisation each EIS client has a
formal assessment of relapse risk
© NCCSDO 2007
(3)
(4)
The standard EIS
assessment includes
the formal
assessment of three
of the following:
mental state, risk,
social functioning,
family/significant
others
The standard EIS
assessment includes
the formal
assessment of four or
more of the
following: psychiatric
history, mental state,
risk, social
functioning,
family/significant
others
Risk of suicide is not Risk of suicide is
assessed
informally assessed
at initial assessment
only
Risk of suicide is
informally assessed
on more than one
occasion
Risk of suicide is
formally assessed
according to protocol
on more than one
occasion
Less than 20% of
clients have a formal
assessment of
relapse risk
51-80% of clients
have a formal
assessment of
relapse risk
Greater than 80% of
assessment of
relapse risk
21-50% of clients
have a formal
assessment of
relapse risk
238
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
16
The EIS assessment includes validated
measures of symptoms, distress, social and
occupational functioning to monitor change
e.g. HAD15
The EIS assessment
does not include any
validated measures
in these categories
The EIS assessment
includes one
validated measure
from these
categories
The EIS assessment
includes two or more
validated measures
from these
categories
EIS assessment
regularly monitors
change using one or
more of these
validated measures
17
The EIS team maintains contact with at
least 95% of accepted clients for 12 months
The EIS team
maintains contact
with 50% or less of
accepted clients for
12 months
The EIS team
maintains contact
with 51-75% of
12 months
The EIS team
maintains contact
with 76-95% of
12 months
The EIS team
maintains contact
with greater than
95% of accepted
clients for 12 months
18
The EIS completes an assessment on 90%
of clients referred to the team
The EIS completes
an assessment on
50% or less of
clients referred to
the team
The EIS completes
The EIS completes
an assessment on
an assessment on
51-70% of clients
71-90% of clients
referred to the team referred to the team
19
Each key worker has a case load of 15
clients or less16
Each key worker has Each key worker has Each key worker has Each key worker has
a case load of
a case load of 30-21 a case load of 20-16 case load or 15 or
greater than 30
clients
clients
less
clients
The EIS completes an
assessment on
greater than 90% of
clients referred to the
team
15
distress includes both depression and anxiety.
16
key worker = CPA Care co-ordinator (UK), may be termed key worker or case manager outside of the UK.
© NCCSDO 2007
239
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
20
Almost all of service time (excluding
admissions) is spent in the community
Almost no service
time (excluding
admissions) is spent
in the community
Very little service
time (excluding
in the community
Some service time
(excluding
in the community
Almost all service
time (excluding
in the community
21
Less than 10% of team clients commit an
act of self harm per year17
Greater than 50% of
team clients commit
an act of self harm
per year
36-50% of team
clients commit an
act of self harm per
year
11-35% of team
clients commit an
act of self harm per
year
10% or less of team
clients commit an act
of self harm per year
22
Greater than 50% of clients with treatment
resistant positive or negative symptoms
persisting greater than three months after
onset of adequate treatment, receive CBT.
Less than 10% of
clients have received
CBT for resistant
positive or negative
symptoms
11-30% of clients
have received CBT
for resistant positive
or negative
symptoms
31-50% of clients
have received CBT
for resistant positive
or negative
symptoms
Greater than 50% of
clients have received
CBT for resistant
symptoms
23
90% of clients in remission have a relapse
prevention plan
The EIS does not
offer a relapse
prevention plan
30% or less of
clients in remission
have a relapse
prevention plan
31-90% of clients in
remission have a
relapse prevention
plan
Greater than 90% of
clients in remission
have a relapse
prevention plan
17
Self harm = any self injury including cutting or poisoning
© NCCSDO 2007
240
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
24
The EIS provides clients with educational
materials about psychosis18
The EIS does not
provide clients with
educational
materials.
The EIS provides
clients with generic
written information
only.
The EIS provides
clients with tailored
written information.
The EIS provides
clients with tailored
info in more than one
media
25
The EIS uses low dose atypical neuroleptics
as the first line drug treatment, prescribing
within dosing limits as defined by the BNF
for greater than 90% of clients.
20% or less of
clients are started
on atypical
neuroleptics within
BNF limits
21-55% of clients
are started on
atypical neuroleptics
within BNF limits
56-90% of clients
are started on
within BNF limits
Greater than 90% of
clients are started on
within BNF limits
26
The EIS attempts to contact and assess the
needs of the client's family/significant
others at an early stage following referral
The EIS does not
attempt to engage
family or significant
others at an early
stage following
referrals
The EIS attempts to
contact family and
significant others at
an early stage
following referral
80% of
families/significant
others contacted
within one week of
referral
80% of families
needs assessed
within one month of
referral
27
The EIS involves family and/or significant
others in the clients ongoing CPA review
process (with the agreement of the client)19
Family and/or
significant others not
involved in ongoing
CPA review process
40% or less of CPA
reviews are attended
by family and/or
significant others
41-80% of CPA
reviews are attended
by family and/or
significant others
Greater than 80% of
CPA reviews are
attended by family
and/or significant
others
18
Generic - meaning not produced by the team; tailored - meaning produced by the team and written for the local client group; media –
meaning different means of communicating, for example video/computer/audio.
19
Review as defined by CPA in UK, in essence the team meets to discuss patient and case every 6/12.
© NCCSDO 2007
241
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
28
The initial contact with the family includes a
family psychoeducational approach20
EIS does not provide
families with
psychoeducation or
support
EIS provides
educational material
and/or informal
support for families,
but has no formal
program of
education or support
EIS has a formal
program of
education and
support for families,
but does not offer
Family
Psychoeducational
intervention
EIS offers Family
Psychoeducational
Intervention
29
The EIS is able to provide intensive
community support when a client is in crisis
EIS does not provide
intensive support
when a client is in
crisis
EIS has links to
other agencies that
provide intensive
support when a
client is in crisis
EIS can visit daily
(up to 1 hour) when
a client is in crisis
EIS can provide
several hours of daily
home based support
when a client is in
crisis
30
Each EIS service user, family member or
carer knows how to access support in a
crisis
EIS does not give
information about
how to access
support
EIS gives clients and
families general
information on how
to access support
but there is no
specific crisis
number
EIS ensures that all
families and clients
are given a 9am5pm crisis number
All groups are given a
24 hr crisis number
20
‘Family psychoeducational approach’ e.g. "a debriefing session", in which the family are given the opportunity to tell their story and air
their feelings and concerns.
© NCCSDO 2007
242
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
31
When an EIS client is an in-patient, the EIS
team is actively involved in inpatient
reviews
EIS has no
involvement when
clients are in
hospital
EIS members
maintain contact
with clients who are
inpatients but do not
regularly visit clients
or attend care
planning
EIS members
Clients in hospital are
maintain contact and under the care of the
attend discharge
EIS Consultant
care planning
meetings, but do not
attend all care
planning meetings
32
The EIS is prepared to use its powers under
mental health legislation
EIS does not object
to the exercise of
mental health act
powers but has no
capacity to exercise
powers under mental
health act
legislations
EIS has capacity to
exercise powers
under mental health
legislation, but
usually leaves this to
non-team members
E.g. Duty
Psychiatrist
EIS exercises powers EIS accepts clients on
under the mental
community treatment
health act but does
orders or equivalent
not accept clients
who are under
community
treatment orders or
equivalent
33
No patient in the EIS has a duration of
untreated psychosis (DUP) of greater than 5
years21
Greater than 50% pf 31-50% of clients
clients have a DUP
have a DUP greater
greater than 5 years than 5 years
21
11-30% of clients
have a DUP greater
than 5 years
Less than 10% of
clients have a DUP
greater than 5 years
Note the five year period includes a period of 2 years DUP.
© NCCSDO 2007
243
RATINGS/ANCHORS9
CRITERION
(1)
34
The EIS provides a service that integrates
child/adolescent and adult mental health
services22
The EIS has no
connections with
CAMHS
35
90% of EIS clients are under the age of 35
years
36
37
22
(2)
The EIS has informal
connections with
CAMHS but no
protocols for joint
working
(3)
(4)
The EIS has formal
protocols for joint
working with
CAMHS.
The EIS includes an
integrated service for
adolescents
Greater than 50% of 31-50% of clients
clients are over the
are over the age of
age of 35
35
11-30% of clients
are over the age of
35
less than 10% of
clients are over the
age of 35
The EIS team uses assertive outreach on a
case sharing basis for those who are difficult
to engage
The EIS doesn’t
practice assertive
outreach; clients
who don’t engage
are not followed up.
Assertive outreach is
provided by another
team separate to the
EIS.
Assertive outreach is
performed by
individual case
managers within the
EIS.
The EIS team uses
assertive outreach on
a case sharing basis
for those who are
difficult to engage
The EIS promotes peer support and self
help initiatives
The EIS has no
mechanism for
promoting peer
support or self help
The EIS provides
literature on self
help and peer
support, but offers
no training in these
areas
The EIS helps access The EIS organises a
self help or peer
peer support group
support, but does
and a self help course
not offer these
interventions
Adolescents = 14yrs and above.
© NCCSDO 2007
244
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
38
The EIS has one wte Social Worker for every
250,000 total population
No Social Worker
EIS has less than
20% wte Social
Worker
Social Worker
50% wte Social
Worker
39
The EIS has one wte OT and/or vocational
rehabilitation specialist per 250,000 total
population
No OT and/or
vocational
rehabilitation
specialist
EIS has less than
20% wte OT and/or
vocational
rehabilitation
specialist
EIS has 21-50% wte
OT and/or vocational
rehabilitation
specialist
40
The EIS has one wte support worker23 per
250,000 total population
No support worker
EIS has less than
20% wte support
worker
support worker
50% wte support
worker
41
The EIS monitors all clients who are
assessed but not accepted onto caseload for
12 months after initial assessment24
EIS does not follow
up any clients not
accepted at initial
assessment
EIS has no
monitoring of clients
not accepted at
initial assessment
but they may self
refer for a further
assessment
EIS makes phone
contact with clients
not accepted at
initial assessment,
on at least one
occasion
23
24
EIS has greater than
50% wte OT and/or
vocational
rehabilitation
specialist
EIS has face to face
follow up of clients
not accepted at initial
assessment for up to
12 months after the
initial assessment
Support worker = unqualified but experienced.
Monitoring provided is not necessarily intensive and does not imply providing clinical care.
© NCCSDO 2007
245
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
42
Each EIS client receives an early
assessment of educational/vocational
functioning (within 3 months of referral)
No formal
assessment of
educational /
vocational
functioning
Less than 30% of
clients receive a
formal assessment
of
educational/vocation
al functioning within
3 ms
31-80% of clients
receive a formal
assessment of
educational/vocation
al functioning within
3 ms
Greater than 80% of
clients receive a
formal assessment of
educational/vocationa
l functioning within 3
ms
43
Formal multi-disciplinary review of EIS care
plan every 6 months
20% or less of
multi-disciplinary
review of EIS care
plan every 6 months
21-55% of clients
have a formal multidisciplinary review of
EIS care plan every
6 months
56-90% of clients
have a formal multidisciplinary review of
EIS care plan every
6 months
Greater than 90% of
multi-disciplinary
review of EIS care
plan every 6 months
44
The EIS routinely formally assesses clients
for substance misuse25
No formal
assessment of
substance abuse at
initial assessment or
follow up
Formal assessment
of drug or alcohol
abuse at initial
assessment but not
at follow up
Formal assessment
of drug OR alcohol
abuse at assessment
and at least 12
monthly
Formal assessment of
drug AND alcohol
abuse at assessment
and at least 12
monthly
25
Formal means using at least one accepted screening test.
© NCCSDO 2007
246
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
45
The EIS works with clients in the prodromal
phase of psychosis (i.e. with early
symptoms of psychosis, but not meeting
diagnostic criteria)
The EIS does not
offer a service to
clients in the
prodromal phase of
psychosis
The EIS assessment
is able to identify
clients in the
prodromal phase but
does not provide
treatment
The EIS offers
monitoring to clients
in the prodromal
phase but no other
psychiatric care
The EIS has a specific
program of treatment
for clients in the
prodromal phase for
up to 6 months
46
80% of clients are initially assessed at home
or in a community setting including primary
care
20% or less of
clients initially
assessed at home or
in community setting
21-40% of clients
initially assessed at
home or in
community setting
41-80% of clients
initially assessed at
home or in
community setting
Greater than 80% of
clients initially
assessed at home or
in community setting
47
80% of accepted clients are retained for 3
years
Less than 50% of
accepted clients
retained for 3 years
51-65% of accepted 66-80% of accepted Greater than 80% of
clients retained for 3 clients retained for 3 accepted clients
years
years
retained for 3 years
48
The EIS has an emphasis on finding
employment or resuming work
Within 12 months of
being admitted by
the team less than
50 % of EIS clients
are involved in fulltime education or
paid employment
Within 12 months of
being admitted by
the team more than
50% of clients are
involved in full-time
education or paid
employment but less
than 20% in total
are engaged in paid
employment
© NCCSDO 2007
Within 12 months of
being admitted by
the team more than
50% of clients are
involved in full-time
education or paid
employment with
21-40% in total
engaged in paid
employment
Within 12 months of
being admitted by
the team more than
50% clients are
involved in full time
education or paid
employment with 4160% engaged in paid
employment
247
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
49
The EIS assesses and treats symptoms of
post traumatic stress disorder linked to the
illness or its treatment
The EIS does not
offer any formal
assessment of PTSD
At least 50% of
those with PTSD
have received formal
treatment
51-80% of those
with PTSD have
received formal
treatment
Greater than 80% of
those with PTSD have
received formal
treatment
50
The EIS has formed a relationship with an
identified contact person within local
colleges, careers advisory services and
vocational rehabilitation agencies and user
led training programs, and agreed a process
for referral
EIS has informal
links but no regular
meetings or agreed
protocols
The EIS has formed
a relationship with
an identified contact
person and agreed a
process for referral
with one of the
following: local
colleges, careers
advisory services,
vocational
rehabilitation
agencies, user led
training programs
The EIS has formed
a relationship with
an identified contact
person and agreed a
with two of the
following: local
colleges, careers
advisory services,
vocational
rehabilitation
agencies, user led
training programs
The EIS has formed a
relationship with an
identified contact
person and agreed a
with three or more of
the following: local
colleges, careers
advisory services,
vocational
rehabilitation
agencies, user led
training programs
51
interventions for substance misuse
EIS offers no
interventions for
substance misuse
EIS has formal links
to agencies offering
interventions but
does not offer
interventions itself
EIS offers nonspecific interventions
for substance
misuse, but not
formal interventions
EIS offers
psychological
interventions for
substance misuse on
a group or individual
basis
© NCCSDO 2007
248
RATINGS/ANCHORS9
CRITERION
(1)
(2)
52
interventions for anxiety/social
phobias/avoidance
EIS does not offer
interventions of this
type
53
The EIS helps clients develop daily living
skills, where appropriate
EIS does not offer
EIS has links to
EIS offers practical
help with daily living organisations that
assistance with daily
skills
can offer help with
living skills
daily living skills, but
does not offer help
itself
© NCCSDO 2007
EIS offers coping
advice/ self help but
cannot offer specific
psychological
interventions
(3)
EIS offers one of:
specific
psychological
treatment OR
behavioural
treatment from a
trained team
member or one
supervised by a
trained therapist
(4)
EIS offers both
specific psychological
treatments AND
behavioural
treatment from a
trained team member
or one supervised by
a trained therapist
The EIS offers in vivo
practice of daily living
skills or a group
based program of
daily living skills
under the supervision
of a trained therapist
249
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
A programme of
health promotion is
offered covering four
or more of: smoking,
exercise/obesity,
sexual health, drugs,
alcohol
54
The EIS includes a programme of health
promotion as part of its psychoeducation
package26
No health promotion
is included as part of
psychoeducation
package
A programme of
health promotion is
offered covering at
least two of:
smoking,
exercise/obesity,
alcohol
A programme of
health promotion is
offered covering at
least three of:
smoking,
exercise/obesity,
alcohol
55
The EIS is willing to treat prodromal
symptoms with CBT or medication even
when the diagnosis is uncertain
EIS does not treat
prodromal
symptoms
EIS offers nonspecific support for
prodromal
symptoms, but does
not offer CBT from a
trained therapist or
medication
EIS offers nonEIS offers nonspecific support and specific support and
medication for
CBT from a trained
prodromal
therapist for
symptoms
prodromal symptoms
56
The EIS involves the service user in
monitoring the side-effects of drug
treatment, using standardised monitoring
tools
EIS does not
monitor side effects
of drug treatment
EIS educates users
about drug side
effects but does not
monitor these effects
on a regular basis
EIS monitors side
effects of drug
treatment on a
regular basis, using
standardised tools
26
EIS involves service
uses in monitoring
side effects using
standardised tools
Programme consisting of tailored advice and/or literature but not literature alone.
© NCCSDO 2007
250
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
57
The EIS is persistent and vigorous in using
medication for treatment resistant positive
or negative symptoms (i.e. symptoms that
remain 6 weeks after an acute episode) with
pharmacological treatments
EIS has no formal
mechanism for
identifying treatment
resistant symptoms
EIS has a formal
mechanism for
monitoring
treatment resistant
symptoms within 6
wks of acute episode
EIS has a protocol
for using medication
for treating resistant
positive OR negative
symptoms within 6
wks of acute episode
EIS has a protocol for
using medication for
treating resistant
positive AND
negative symptoms
within 6 wks of acute
episode
58
EIS clients with residual positive symptoms
that have not responded to other
treatments have a trial of clozapine
5% or less of
patients with
treatment resistant
positive symptoms
on clozapine
5-15% of patients
with treatment
resistant positive
symptoms on
clozapine
16-20% of patients
with treatment
resistant positive
symptoms on
clozapine
Greater than 25% of
patients with
treatment resistant
positive symptoms on
clozapine
59
The EIS attempts to maintain/establish
contact between young clients and other
young people
The EIS does not
attempt to establish
contact between
clients and other
young people
Attempts are made
as part of an
individual care plan,
but there is no
established
structured program
for doing so
The EIS has formal
links with
organisations that
provide activities for
young people,
(meetings etc) but
does not run regular
activities with them
The EIS participates
in regular,
programmed
activities designed to
bring clients into
contact with other
young people
60
When an EIS client requires acute care a
joint assessment takes place between the
EIS and acute care team
EIS member present
at 20% or less of
assessments leading
to acute admission
EIS member present
at 21-60% of
assessments leading
to acute admission
EIS member present
at less than 61-80%
of assessments
leading to acute
admission
EIS member present
at greater than 80%
of assessments
leading to acute
admission
© NCCSDO 2007
251
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
61
Within the last 12 months, the EIS has
been involved in continuous community
based programmes to reduce stigma
associated with mental illness
EIS is not involved in
community based
programs to reduce
the stigma of mental
illness
EIS is involved in
continuous programs
aimed at reducing
stigma with one of
media; local
authority;
educational
establishments;
youth & community
organisations
EIS is involved in
continuous programs
aimed at reducing
stigma with two of
media; local
authority;
educational
establishments;
youth & community
organisations
EIS is involved in
continuous programs
aimed at reducing
stigma with three of
media; local
authority;
educational
establishments;
youth & community
organisations
62
Over the last 12 months, the EIS has
provided symptom awareness programmes
for primary care, educational institutions,
social services and other relevant agencies
EIS does not provide EIS provided
symptom awareness symptom awareness
programs
programs for one of
the following:
primary care;
educational
institutions; social
services;
youth/other relevant
agencies
EIS provided
symptom awareness
programs for two of
the following:
primary care;
educational
services;
youth/other relevant
agencies
EIS provided
symptom awareness
programs for three of
the following:
primary care;
educational
services; youth/other
relevant agencies
© NCCSDO 2007
252
RATINGS/ANCHORS9
CRITERION
(1)
(2)
(3)
(4)
63
The EIS ensures that the primary care team
remain closely involved in the client's
treatment
EIS has little contact EIS liaises with local
with the primary
primary care team
care team
as necessary but
does not provide
written progress
reports on a regular
basis
EIS provides written
progress reports on
a regular basis and
has visited all local
primary care teams
at some point
EIS makes regular
face-to-face contact
with local primary
care workers as well
as providing regular
written information
on clients' progress.
Named EIS workers
are responsible for
liaison with a defined
group of primary care
teams
64
The EIS has a strategy for positively
engaging the local community, based on an
analysis of the community's demography
The EIS makes no
special provision for
local ethnic groups
All EIS team
members are
equality and
diversity trained
appropriate to the
client mix of the
local population
As 2 and 3 and in
addition, at least one
member of the team
belongs to a key local
ethnic group
© NCCSDO 2007
The EIS provides all
written client
information in the
main local languages
253
EIS Scale Feedback
Please comment on the design,
format and ease of use, especially
ways in which it can be improved:
Are any further completion notes
necessary?
Approximately how long did the
scale take to complete?
Which criteria in the EIS scale where
difficult or time consuming to
complete and why?
Criterion
Number
Reason for Difficulty
What value is this scale to you in
terms of your team’s ongoing
development?
© NCCSDO 2007
254
the West Midlands
Appendix 10: Health professional information
sheet and consent form
© NCCSDO 2007
255
the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
HEALTH PROFESSIONAL INTERVIEW
INFORMATION SHEET
April 2003: Version 2.
Study Title: An Evaluation of the Development and Impact of Early Intervention
Mental Health Services across the West Midlands (The EDEN Study)
Before you decide if you want to participate in this study, it is important for you to
understand why the research is being done and what it will involve. Please take
time to read the following information carefully and discuss it with others if you
wish. Ask us if there is anything that is not clear or if you would like more
information. Take time to decide whether or not you wish to take part.
The purpose of the study:
The aim of the project is to evaluate the implementation and impact of Early
Intervention Services (EISs) for people aged between 14-35 years of age in
different areas of the West Midlands.
Why have you been chosen?
We are asking a small number of staff who have different jobs and roles in Early
Intervention Services across the West Midlands to take part in this study to tell us
about their experiences of setting up and/or working as part of their team.
Do I have to take part?
No. Involvement in this study is entirely voluntary. However if you do decide to
take part, you are still free to withdraw at any time without giving a reason. A
decision to withdraw at any time or a decision not to take part will not affect your
role in the team or be fed back to other staff.
What will happen to me if I take part?
If you agree to take part in the study, we will ask you to take part in a face-to-face
interview with a trained researcher, about your experiences setting up and/or
working as part of the early intervention service team. The interview will be in a
place where you feel comfortable, for example in a quiet room in the early
intervention service.
What are the possible side effects of taking part?
© NCCSDO 2007
256
the West Midlands
There are no disadvantages or side effects to taking part in this study apart from
the time it takes to talk to the interviewer.
What are the possible benefits of taking part?
At a national level, since up to 3% of people in the UK develop a serious mental
illness, access to good quality mental health services at an early stage of
developing an illness may improve an individual’s chances of recovery and the
quality of life for individuals and their families. On a personal level, involvement in
the project may help you think about and reflect more on the treatment provided
by the service you help provide.
What will happen when the research study stops?
This research study lasts for two years from January 2004. There will be no change
to services when the study stops but we hope that the final results of the study will
help the health professionals involved in running early intervention services to
make changes in the medium to longer term to further improve services. The
results of the study will be written up in 2005 as a report for the NHS Service and
Delivery Organisation who funded the study. You will be able to obtain this report
free of charge from www.sdo.lshtm.ac.uk.
Will my taking part in this study be kept confidential?
All information collected as part of this research including typed up notes of
interviews and tape recording of interviews will be kept in a locked filing cabinet in
the Department of Primary Care at the University of Birmingham. Any information
from or about you will have your name, address and any other identifying features
removed so that you cannot be recognised from it. This means that anonymity will
be preserved at all times during and after the study time period. The tapes will be
destroyed 5 years after the study has been completed in line with University of
Birmingham research policy.
What will happen to the results of the research study?
The results of the study will be written up for publication in health professional
journals and will be presented at conferences in the UK and abroad. However
anonymity will be preserved at all times.
Who is organising and funding the research?
The research is organised by The University of Birmingham, Department of Primary
Care and General Practice and funded by a grant from NHS Service and Delivery
Organisation. Indemnity is provided by the University of Birmingham. The protocol
has been reviewed by the South West Multi Centre Research Ethics Committee.
Contact for further information
Dr Helen Lester, Senior Lecturer in Primary Care, Department of Primary Care and
General Practice, University of Birmingham, Edgbaston, Birmingham B15 2TT, 0121
414 2684.
If you agree to take part, you will be given a copy of this information sheet and of
the signed consent form to keep. If you have any concerns about the study and
wish to contact someone independent, please telephone Ella Wright, the local ethics
committee co-ordinator on 0121 507 5712 between 9-5.
© NCCSDO 2007
257
the West Midlands
Thank you for reading this
© NCCSDO 2007
258
the West Midlands
UNLOCKING THE KEY
ISSUES
THE EDEN PROJECT
HEALTH PROFESSIONAL CONSENT FORM
FOR INTERVIEWS
April 2003. Version 2
Title of Project:
An Evaluation of the Development and Impact of Early Intervention Mental Health
Services across the West Midlands (The EDEN Study)
Name of Researcher:
Please initial box
1. I confirm that I have read and understand the information sheet dated
…………… (version 2) for the above study and have had the opportunity to
ask questions.
2. I understand that my participation is voluntary and that I am free to
withdraw at any time, without giving any reason.
3. I understand that the interview will be audio-taped and typed up and
that the conversations in that interview may be used when the research
team write about the study.
4. I agree to take part in the above study.
____________________
Name of health professional
________________
Date
_______________
Signature
____________________
Name of Person taking consent
(if different from researcher)
________________
Date
_______________
Signature
______________________
_________________
________________
Researcher
© NCCSDO 2007
Date
Signature
259
the West Midlands
Appendix 11: Service user information sheets
and consent forms
© NCCSDO 2007
260
the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
PATIENT INFORMATION SHEET
Jan 2004: Version 4.
Mental Health Services across the West Midlands
You are being invited to take part in a research study. Before you decide it is
important for you to understand why the research is being done and what it will
involve. Please take time to read the following information carefully and discuss it
with others if you wish. Ask us if there is anything that is not clear or if you would
like more information. Take time to decide whether or not you wish to take part.
Intervention Services (EISs) for people aged between 14-35 years of age in
Why have I been chosen?
We are inviting everyone aged between 14-35 years of age who have been referred
to the Early Intervention Service to take part in this study. This will be
approximately 1500 young people across the West Midlands.
No. Involvement in this study is entirely voluntary. However if you decide to take
part you are still free to withdraw at any time without giving a reason. A decision
to withdraw at any time or a decision not to take part will not affect the standard of
health care you receive now or in the future.
If you agree to take part in the study, in six months time we will send you a
questionnaire through the post that measures your satisfaction with mental health
services. We would like you to complete this questionnaire which takes
approximately 10 minutes, and send it back to the research team in a stamped
addressed envelope that we will provide for you.
At this stage we will ask a small number of people (10 in each service) to also take
part in a face-to-face interview with a mental health service user, who is also a
trained researcher and part of the research team, about their experiences of the
early intervention service. The researcher will ask you questions about how easy
services are to access, the types of treatments you have been offered and your
© NCCSDO 2007
261
the West Midlands
general observations on the treatment you have received. The interview will be in a
intervention service or in your own home. If you like, you can invite a relative or
carer to be present during the interview.
You may also be asked whether you feel that it is appropriate for the research team
to contact your brother or sister if you feel that they have been particularly
supportive to you. However this contact will only be made with your permission
and the purpose of this contact is to provide them with an opportunity to share
their perceptions of how the Early Intervention Service has responded to your
needs.
your time it takes to fill in the questionnaire.
the project may help you think about and reflect more on your treatment and the
treatment you would like to receive in future.
to your care or to services when the study stops but we hope that the final results
of the study will help the health professionals involved in running early intervention
services to make changes in the medium to longer term to further improve
services. The results of the study will be written up in 2005 as a report for the NHS
Service and Delivery Organisation who funded the study. You will be able to obtain
this report free of charge from www.sdo.lshtm.ac.uk.
All information collected as part of this research including questionnaires, typed up
notes of interviews and tape recording of interviews will be kept in a locked filing
cabinet in the Department of Primary Care at the University of Birmingham. Any
information from or about you will have your name, address and any other
identifying features removed so that you cannot be recognised from it. This means
that your anonymity will be preserved at all times during and after the study time
period. The tapes will be destroyed 5 years after the study has been completed in
line with University of Birmingham research policy.
journals and will be presented at conferences in the UK and abroad. However your
© NCCSDO 2007
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the West Midlands
Care and General Practice and funded by a grant from NHS Service and Delivery.
414 2684. If you agree to participate, you will be given a copy of the Patient
Information Sheet and a copy the signed consent form to keep. If you have any
concerns about the study and wish to contact someone independent, please
telephone Ella Wright, the local ethics committee co-ordinator on 0121 507 5712
between 9-5.
Thank you for reading this.
© NCCSDO 2007
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the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
Centre No:
Patient Identification No for this trial:
PATIENT CONSENT FORM
Title of Project:
Name of Researcher:
Please initial box
…………… (version 4) for the above study and have had the opportunity
to ask questions.
withdraw at any time, without giving any reason, without my medical
care or legal rights being affected.
3. I understand that sections of any of my medical notes may be looked at
by research staff from the University of Birmingham or from regulatory
authorities where it is relevant to my taking part in research. I give
permission for these individuals to have access to my records.
____________________
Name of Patient
________________
Date
_______________
Signature
____________________
________________
Date
_______________
Signature
______________________
Researcher
_________________
Date
________________
Signature
© NCCSDO 2007
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the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
Centre No:
SERVICE USER CONSENT FORM FOR INTERVIEWS
Title of Project:
Name of Researcher:
Please initial box
to ask questions.
____________________
Name of Patient
________________
Date
_______________
Signature
____________________
________________
Date
_______________
Signature
______________________
Researcher
_________________
Date
________________
Signature
© NCCSDO 2007
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the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
PATIENT INFORMATION SHEET (14-18 year olds)
July 2003: Version 3.
Mental Health Services across the West Midlands
You are being invited to take part in a research study. Before you decide it is
important for you to understand why the research is being done and what it will
involve. Please take time to read the following information carefully and discuss it
with others if you wish. Ask us if there is anything that is not clear or if you would
like more information. Take time to decide whether or not you wish to take part.
In this study, we want to watch how the established and the new Early Intervention
Services (EISs) for people aged between 14-35 years of age develop across the
West Midlands. We also want to see if there are any differences in the care young
people receive between the different services and, if there are, to try and find out
why.
Why have I been chosen?
No. Involvement in this study is entirely up to you. However if you decide to take
part you are still free to change your mind and withdraw at any time without giving
a reason. A decision to withdraw at any time or a decision not to take part will not
affect the health care you receive now or in the future.
If you agree to take part in the study, in 6 months time we will send you a
questionnaire through the post that measures your satisfaction with mental health
services. We would like you to fill in this questionnaire which takes about 10
minutes, and send it back to the research team in a stamped addressed envelope
that we will provide for you.
early intervention service. The researcher will ask you questions about how easy
© NCCSDO 2007
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the West Midlands
services are to access, the types of treatments you have been offered and your
general views on the treatment you have received. The interview will be in a place
where you feel comfortable, for example in a quiet room in the early intervention
service or in your own home. If you like, you can invite a relative or carer to be
present during the interview.
your time it takes to fill in the two questionnaires.
Since up to 3% of people in the UK develop a serious mental illness, access to good
quality mental health services at an early stage of developing an illness may
improve and their chances of getting better and the quality of life for individuals
and their families. On a personal level, involvement in the project may help you
think about your treatment and the treatment you would like to receive in future.
This research study lasts for 2 years from January 2004. There will be no change to
your care or to services when the study stops but we hope that the final results of
the study will help the health professionals involved in running early intervention
services to make changes in the medium to longer term to further improve
services. The results of the study will be written up in 2005 as a report for the NHS
Service and Delivery Organisation who funded the study. You will be able to obtain
this report free of charge from www.sdo.lshtm.ac.uk.
information from or about you will have your name, address and anything that you
might be identified from removed so that you cannot be recognised from it. The
tapes will be destroyed 5 years after the study has been completed in line with
University of Birmingham research policy.
The results of the study will be written up and published in health professional
journals and will be presented at conferences in the UK and abroad.
414 2684. If you agree to participate, you will be given a copy of the Patient
© NCCSDO 2007
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the West Midlands
Information Sheet and the signed consent form to keep. If you have any concerns
about the study and wish to contact someone independent, please telephone Ella
Wright, the local ethics committee co-ordinator on 0121 507 5712 between 9-5.
© NCCSDO 2007
268
the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
ASSENT FORM
Centre No:
Title of Project:
An Evaluation of the Development and Impact of Early Intervention Mental Health Services across
the West Midlands (The EDEN Study)
Name of Researcher:
(Please initial box)
•
I have read and understood the information sheet dated ……… (version
3) and was able to ask questions about the study.
•
I understand that I can change my mind and choose not to participate
at any time and for any reason without it affecting any treatment that
my relatives or I may receive.
•
I understand that sections of my mental health related notes may be
looked at by members of the research team. I give my permission for
the researchers to look at my notes.
•
I am aware that the information I provide will be held in the strictest
confidence and will only be seen by the researchers involved in the
project.
I ___________________________________ agree to take part in the
above study.
•
Signature of Participant
Date
Signature of Parent/guardian
Date
___________________
______________________
Signature
_____________________
Name of Researcher
© NCCSDO 2007
________________________
Signature
_________________
Date
Date
269
the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
PARENT/GUARDIAN INFORMATION SHEET
Your child/ward is being invited to take part in a research study. Before you decide
if you agree that they can take part, is important for you to understand why the
research is being done and what it will involve. Please take time to read the
following information carefully and discuss it with others if you wish. Ask us if there
is anything that is not clear or if you would like more information. Take time to
decide whether or not you wish to take part.
Intervention Services (EISs) for people aged between 14-35 years of age in five
Why has your child/ward been chosen?
Does my child/ward have to take part?
No. Involvement in this study is entirely voluntary. However if your child/ward
decides to take part, they are still free to withdraw at any time without giving a
reason. A decision to withdraw at any time or a decision not to take part will not
affect the standard of health care they receive now or in the future.
If you agree that child/ward can take part in the study, in 6 months time we will
send them a questionnaire through the post that measures their satisfaction with
mental health services. We would like them to complete this VSSS54 questionnaire
which takes approximately 10 minutes to fill in and send it back to the research
team in a stamped addressed envelope that we will provide.
© NCCSDO 2007
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the West Midlands
early intervention service. The researcher will ask them questions about how easy
services are to access, the types of treatments that have been offered and their
general observations on the treatment you have received. The interview will be in a
place where your child/ward feels comfortable, for example in a quiet room in the
early intervention service or in your own home. You may want to be present during
the interview and we would encourage you to discuss this option with your
child/ward so that you both feel comfortable with your decision.
the time it takes your child/ward to fill in the two questionnaires.
the project may help your child/ward think about and reflect more on their
treatment and the treatment they would like to receive in future.
your child/ward’s care or to services when the study stops but we hope that the
final results of the study will help the health professionals involved in running early
intervention services to make changes in the medium to longer term to further
improve services. The results of the study will be written up in 2005 as a report for
the NHS Service and Delivery Organisation who funded the study. You will be able
to obtain this report free of charge from www.sdo.lshtm.ac.uk/
information from or about your child/ward will have their name, address and any
other identifying features removed so that they cannot be recognised from it. This
means that anonymity will be preserved at all times during and after the study time
© NCCSDO 2007
271
the West Midlands
414 2684
If you agree your child/ward can participate, you will be given a copy of the
Parent/Guardian Information Sheet and the signed consent form to keep.
If you have any concerns about the study and wish to contact someone
independent, please telephone Ella Wright, the local ethics committee co-ordinator
on 0121 507 5712 between 9-5.
© NCCSDO 2007
272
the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
PARENT/GUARDIAN CONSENT FORM
Centre No:
Title of Project:
Name of Researcher:
I __________________________________ consent for
_________________________________ to take part in study
•
•
•
•
•
I confirm that I have read and understood the information sheet
dated……..(version 3) for the above study and was able to ask
questions about the study.
I understand that I can withdraw my consent to participate at any
time and for any reason without my medical care or legal rights or
those of my relatives being affected.
I understand that sections of his/her mental health related notes
may be looked at members of the research team where it is
relevant to his/her taking part in research. I give permission for
these individuals to have access to his/her records.
I understand that any interview will be audio-taped and typed up
and that the conversations in that interview may be used when the
research team write about the study.
I am aware that the information he/she provides will be held in the
strictest confidence and will only be assessed by the researchers
involved in the project.
Signature of Parent/guardian: ___________________________
Date: _____________
Relationship to participant: _____________________________
________________________
______________________ _______________
Signature
Date
_________________________
Name of Researcher
_______________________
Signature
Date
© NCCSDO 2007
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the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
PARENT/GUARDIAN INTERVIEW INFORMATION SHEET
Intervention Services (EISs) for people aged between 14-35 years of age in five
Why has your child/ward been chosen?
decision to withdraw at any time or a decision not to take part will not affect the
standard of health care you receive now or in the future.
interview with a trained researcher, about your experiences of the early
intervention service. The researcher will ask you questions about how easy services
are to access, the types of treatments that have been offered to you and your
family and your general observations on the services. The interview will be in a
intervention service or in your own home.
© NCCSDO 2007
274
the West Midlands
the project may help you think about and reflect more on the treatment you and
your family have received and the treatment you would like to receive in future.
your child/ward’s care or to services when the study stops but we hope that the
final results of the study will help the health professionals involved in running early
intervention services to make changes in the medium to longer term to further
improve services. The results of the study will be written up in 2005 as a report for
the NHS Service and Delivery Organisation who funded the study. You will be able
to obtain this report free of charge from www.sdo.lshtm.ac.uk.
information from or about your child/ward will have their name, address and any
other identifying features removed so that they cannot be recognised from it. This
means that anonymity will be preserved at all times during and after the study time
Contact for Further Information
414 2684
If you agree to take part, you will be given a copy of the Parent and Guardian
Information Sheet and a signed copy of the consent form to keep. If you have any
concerns about the study and wish to contact someone independent, please
telephone Ella Wright, the local ethics committee co-ordinator on 0121 507 5712
between 9-5.
© NCCSDO 2007
275
the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
Centre No:
PARENT/GUARDIAN CONSENT FORM FOR INTERVIEWS
Title of Project:
Name of Researcher:
to ask questions.
withdraw at any time, without giving any reason, without my or my
child/guardians’ medical care or legal rights being affected.
____________________
Name of Parent/Guardian
________________
Date
_______________
Signature
____________________
________________
Date
_______________
Signature
______________________
Researcher
_________________
Date
_______________
Signature
© NCCSDO 2007
276
the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
Centre No:
PATIENT ASSENT FORM FOR INTERVIEWS
Title of Project:
Name of Researcher:
Please initial box
to ask questions.
4. I ___________________________________ agree to take
part in the above study.
Signature of Participant
Date
Signature of Parent/guardian
Date
___________________
_____________________
Signature
_____________________
Name of Researcher
© NCCSDO 2007
_______________________
Signature
Date
Date
277
the West Midlands
Appendix 12: Carer and sibling information
sheets and consent forms
© NCCSDO 2007
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the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
INTERVIEW INFORMATION SHEET FOR CARERS
February 2004: Version 4
Intervention Services (EISs) for people aged between 14-35 years of age across
the West Midlands.
Why have I been asked to take part?
approximately 1500 young people across the West Midlands. In some instances,
particularly where individual service users have identified their brother or sister as
being supportive we would like to interview them in order to elicit their perceptions
of the services offered by the Early Intervention Service. Your
daughter/son/spouse/partner/friend has given consent for you to be approached.
decision to withdraw at any time or a decision not to take part will not affect the
standard of health care you receive now or in the future.
interview with a trained researcher, about your perception of the early intervention
service and its effectiveness or otherwise in response to your
daughter/son/spouse/partner/friends’ needs. The researcher will ask you questions
about how easy you think services are to access, the types of treatments that have
been offered to you, your daughter/son/spouse/partner/friend and family and your
general observations on the services. The interview will be in a place where you feel
© NCCSDO 2007
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the West Midlands
comfortable, for example in a quiet room in the early intervention service or in your
own home.
the project may help you think about and reflect more on the treatment you, your
daughter/son/spouse/partner/friend and your family have received and the
treatment you would like to receive in future.
to your daughter/son/spouse/partner/friend care or to services when the study
stops but we hope that the final results of the study will help the health
professionals involved in running early intervention services to make changes in the
medium to longer term to further improve services. The results of the study will be
written up in 2005 as a report for the NHS Service and Delivery Organisation who
funded the study. You will be able to obtain this report free of charge from
www.sdo.lshtm.ac.uk.
information from or about your daughter/son/spouse/partner/friend will have their
name, address and any other identifying features removed so that they cannot be
recognised from it. This means that anonymity will be preserved at all times during
and after the study time period. The tapes will be destroyed 5 years after the study
has been completed in line with University of Birmingham research policy.
Contact for Further Information
© NCCSDO 2007
280
the West Midlands
414 2684
If you agree to take part, you will be given a copy of the Sibling Information Sheet
and a signed copy of the consent form to keep. If you have any concerns about the
study and wish to contact someone independent, please telephone Ella Wright, the
local ethics committee co-ordinator on 0121 507 5712 between 9-5.
© NCCSDO 2007
281
the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
Centre No:
CARERS CONSENT FORM FOR INTERVIEWS
December 2003. Version 1
Title of Project:
Name of Researcher:
Please initial box
to ask questions.
daughter/son/spouse/partner/friend’s medical care or legal rights being
affected.
____________________
Name of Carer
________________
Date
_______________
Signature
____________________
________________
Date
_______________
Signature
______________________
Researcher
_________________
Date
________________
Signature
© NCCSDO 2007
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the West Midlands
UNLOCKING THE KEY
ISSUES
THE
EDEN PROJECT
Centre No:
SIBLING CONSENT FORM FOR INTERVIEWS
December 2003. Version 1
Title of Project:
Name of Researcher:
Please initial box
to ask questions.
siblings’ medical care or legal rights being affected.
____________________
Name of Sibling
________________
Date
_______________
Signature
____________________
________________
Date
_______________
Signature
______________________
Researcher
_________________
Date
________________
Signature
© NCCSDO 2007
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the West Midlands
Appendix 13: Publication policy
1. Introduction
1.1 This policy represents an agreement between research colleagues directly
involved in the EDEN Study.
1.2 Our intention is for there to be a large number of publications resulting from
this study (both reports to our funders as part of our contractual agreement and
peer-reviewed papers). We are committed to the principle that authorship is
accessible to all team members. Report writing will be shared according to the
respective involvement of various team members in specific aspects of the study.
2. Types of publications
Level 1: Publications central to the evaluation
These are papers that directly answer the main research questions of the EDEN
study. All authors who fulfil the authorship criteria will be listed. There will be
designated writers for each level 1 paper, but the lead writers who will convene the
writing team, be responsible for writing the first draft of the papers and be the
first/second authors on the paper will be HL and MB for each of the qualitative
papers and SB for the audit paper.
Level 2: Publications clearly related to the evaluation but not central to it
These are papers that do not directly answer any of the main research questions
but make use of data from the EDEN study. Anyone involved in the study can put
himself or herself forward to lead in the writing of a level 2 paper and must offer
the opportunity for authorship to other team members. All authors who fulfil the
authorship criteria will be listed on the paper.
Example of level 2 publication: secondary analysis of the summative data.
Level 3: Publications of work derived from the evaluation, but not part of it
These are spin-off papers that do not directly answer the main research questions
and do not make use of any of the data from the National Evaluation study. All
authors who fulfil the authorship criteria will be listed. A statement in the paper’s
acknowledgements should refer to the link to the National Evaluation. Anyone
involved in the study can put himself or herself forward to lead in the writing of a
level 3 paper and must offer the opportunity for authorship to other team
members.
Example of level 3 publication: conceptual consideration of broader themes e.g. the
role of hero innovators in implementing policy
© NCCSDO 2007
284
This document was published by the National Coordinating Centre for the Service Delivery
and Organisation (NCCSDO) research programme, managed by the London School of
Hygiene & Tropical Medicine.
The management of the Service Delivery and Organisation (SDO) programme has now
transferred to the National Institute for Health Research Evaluations, Trials and Studies
Coordinating Centre (NETSCC) based at the University of Southampton. Prior to April 2009,
NETSCC had no involvement in the commissioning or production of this document and
therefore we may not be able to comment on the background or technical detail of this
document. Should you have any queries please contact sdo@southampton.ac.uk.
Disclaimer
This report presents independent research commissioned by the National
Institute for Health Research (NIHR). The views and opinions expressed by
authors in this publication are those of the authors and do not necessarily reflect
those of the NHS, the NIHR, the NIHR SDO programme or the Department of
Health. The views and opinions expressed by the interviewees in this publication
are those of the interviewees and do not necessarily reflect those of the authors,
those of the NHS, the NIHR, the NIHR SDO programme or the Department of
Health
Addendum
This document was published by the National Coordinating Centre for the
Service Delivery and Organisation (NCCSDO) research programme, managed
by the London School of Hygiene & Tropical Medicine.
The management of the Service Delivery and Organisation (SDO) programme
has now transferred to the National Institute for Health Research Evaluations,
Trials and Studies Coordinating Centre (NETSCC) based at the University of
Southampton. Prior to April 2009, NETSCC had no involvement in the
commissioning or production of this document and therefore we may not be able
to comment on the background or technical detail of this document. Should you
have any queries please contact sdo@southampton.ac.uk.

EDEN: Evaluating the development and impact of Early Intervention

Transcription

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