Purple Star Newsletter Summer 2015 Edition

The Purple Star Practice
Promoting equitable health care for people with learning
disabilities in Hertfordshire. Supporting best practice.
Summer Edition, 2015
Learning Disability and Dysphagia
Produced by: The Community Learning Disabilities Nursing
Service For Health Professionals in Hertfordshire
Editorial
Hello and welcome to the summer edition of the Purple Star Practice. This issue is all about
Dysphagia in people with learning disabilities. Dysphagia is a medical term for a condition which
can be described as ‘eating, drinking and swallowing difficulties’. For people with learning
disabilities, there is a higher risk of choking than other people.
Nice Guidance, 2006 suggests: ‘Staff will be aware of the need
Inf By
to identify service users who may potentially have dysphagia
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s
and to refer to professionals with the relevant skills and training
He ation ie Ba
alt
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h L uali nks
iais ty O
in the diagnosis, assessment and management of dysphagia’.
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eam ficer
The articles in the magazine have been written
by the Community Learning Disability Nurses
(CLDNs), along with members of the
Dysphagia Team at Hertfordshire Partnership
University NHS Foundation Trust.
Our lead article is about the Dysphagia Group,
written by Senior Community Learning
Disability Nurse, Tracy Logan. Tracy explains
her interest in dysphagia, and how the group
regularly meet to discuss issues to help
improve understanding of dysphagia, best
practice and guidance. This group includes
CLDNs, Speech and Language Therapists
(SLTs) and Dieticians from the acute
hospital trusts.
Natasha Collins is an Acute Liaison Nurse
with the Health Liaison Team. Natasha tells us
about her experiences of working with people
in hospital with learning disabilities and
dysphagia, and the collaborative work that
goes on with hospital staff.
We also include a picture-based, Easy Read
story board about dysphagia called ‘Why
Does Conner Cough?’ this was produced in
conjunction with Kate Harding, Creative Care
Practitioner, and the Rickmansworth Purple
All-Stars. It aims to highlight dysphagia
issues and prompt carers to seek timely
investigation of symptoms which might
otherwise be missed.
There are also useful articles from Clare
Dwyer, SLT. Clare explains the causes,
signs and symptoms of dysphagia, how it
can be treated, and how to make a referral.
Claire Fenlon, who is a Dietician, offers
advice on how to adapt diets to help people
with dysphagia.
As with all our newsletters, we include a
Resource Pack for health professionals and
carers. In this issue we cover Easy Read
eating and drinking safely pictures, the most
useful Makaton signs and symbols, relevant
links and websites. Also enclosed, is a
supplement called ‘Managing Dysphagia’ a
booklet produced that encompasses the
information provided by the Speech and
Language Therapist.
Our regular features also include the coffee
break pages – this time featuring some ‘facts
about dysphagia’ for you to digest, and our
‘News and What’s Coming Up’ page.
I sincerely hope that you find the magazine of
great use as a professional resource. Enjoy the
summer, and see you in the autumn for our
next issue of the Purple Star Practice!
In This Issue
Page:
1
4
The Dysphagia Group – our lead article is by Tracy Logan,
Senior Community Learning Disability Nurse
Tracy tells us of her interest in dysphagia and the work that the group do to ensure
best practice, inform and help service users and their families.
Acute Liaison Nurses and the Health Liaison Team
Natasha Collins, Acute Liaison Nurse writes about her experiences of working with
service users in hospital who have dysphagia, and the collaborative work involved.
Resource Pack
8
26
29
31
32
33
The resource pack is designed to support you as a health professional to make
reasonable adjustments ensuring that people with a learning disability can
access your services effectively. The pack has a wealth of easy read and Makaton
materials to support service users with dysphagia, Including the ‘Why does Conner
Cough’ easy read story board, The Top to Toe symptom checklist as well as other
useful links.
Meet the Dysphagia Team at HPFT
Articles by our partners Clare Dwyer, Speech and Language Therapist, and Claire
Fenlon, Dietician
Coffee Break Pages
Take time out read some interesting facts about swallowing, complete the ‘name
that part’ quiz, and the stages of a safe swallow.
Ask Alison
On our letters page, Strategic Lead Nurse Alison Fitzgerald answers your questions
on dysphagia.
News & What’s Coming Up
Read all the latest news from the service. If you have any comments or feedback
about the magazine or topics you think we should cover, we would like to hear from
you. Our contact details are on the back page if you would like to get in touch.
Comments and Feedback, Contact Us
The Dysphagia Group
Tracy Logan tells us how a critical incident as a student
nurse influenced her practice leading work for people with
learning disabilities who have swallowing difficulties.
My interest in dysphagia
issues in people with a
learning disability stems
back to being a newly
qualified nurse, working
in a day centre for
people with a learning
disability and complex
needs. There were a
number of individuals
who had been identified
as having swallowing
problems. The team
worked closely with the
Speech and Language
Therapist (SLT) who had
made recommendations
to help minimise the
risk of choking. But then
one day the unthinkable
happened; a client with
swallowing problems
did get into difficulties…
did choke….. and did die.
It was a sad time and
has left an indelible
mark on my practice as
a nurse.
1
How can things be
improved?
Howseman (2013), states
‘1 in 3 people with a
learning disability have
a swallowing problem a figure far higher than
the general population’.
In 2004: The National Patient
Safety Agency (NPSA) stated
that Dysphagia is one of the
top 5 risk factors for people
with a learning disability.
They went on to develop
recommendations for best
practice in 2007: highlighting
dysphagia as a significant
issue for many people with
a learning disability, with
41% of choking incidents
occurring within residential
care homes.
My observations as a nurse
in Hertfordshire were and
remain that at times, many
carers are not aware of the
signs and symptoms of
swallowing issues. This is
significant, as according to
British Institute of Learning
Disabilities (BILD, 2012), 33%
of people with a learning
disability live in residential or
nursing care and 25% live
with a family member who is
an older carer.
With a developing special
interest in the area, in 2013
I attended a forum: “Steps to
understanding dysphagia in
adults with learning disability:
reviewing medicines
management and best
practice guidelines in adults
with learning disability” held
at the Royal College of
General Practitioners and
attended by GP’s, Speech
and Language Therapists and
Learning Disability Nurses.
Subsequently, I have been
leading the development of
a project to improve service
delivery and reduce risks.
The Community Learning
Disability Nurses (CLDN)
Dysphagia Project Group has
been running for a year.
It was developed to enhance
the knowledge and skills of
the nurses working within the
service, so that they could
educate and support service
users and carers more
effectively also signposting
them to specialist services.
Working collaboratively is
essential in reducing risks,
and it was important to invite
colleagues from the Dysphagia
Team Hertfordshire
Partnership NHS Trust
(HPFT) and SLT from the
Acute Trust to the group.
Their contributions have been
welcomed and valued.
We meet approximately 6-8
weekly and discuss current
developments in this area
working to an action plan to
ensure that there are clear
aims and outcomes for the
group. Discussions may
focus on current national
developments such as the
launch this year of the ‘Me
at Meal Times’ (Guthrie, S.
(2015) Lancashire Care
Foundation Trust,
Calderstones Partnership
Foundation Trust).
The group deliver awareness events for
service users to help make them more aware
of dysphagia issues, such as a workshop at
the Love Yourself Love Your Life event held
in February this year, where we used games
and easy read material to help service
users gain a better understanding of eating
and drinking safely.
Service users attending workshops on Dysphagia at the Love
Youself Love your Life event
We discuss and plan local
initiatives such as the
‘Why does Conner Cough?’
story board that aims to raise
awareness with carers about
pertinent issues.
We plan training for the
CLDN’s on dysphagia issues
and provide expert advice
into another CLDN project
group, “Top to Toe”,
designing resources to
help carers identify
dysphagia issues.
Continued over page...
2
Some of the resources used
by the CLDN’s include:
Painted masks to help
identify the muscles in
the face and mouth
Easy read information
(see the resource pack)
Visual tools such as
water, yogurt and
porridge and a tray to
help explain the speed
that different food
consistencies flow at.
learning disability, including
health factors associated
with the learning disability
itself, communication
difficulties, low levels of
knowledge about health
and looking after their health
and difficulties accessing
health care.
References:
Emmerson, E., Baines, S.,
Allerton, L., and Welch, V.
(2011). Health Inequalities
and People with Learning
Disabilities in the UK.
Jones, J., 2002. BILD
Factsheet: Communication.
“Dysphagia Bingo”
used in conjunction
with the ‘Why Does
Conner Cough?’
photo story.
We use such a variety of
tools, as whilst an estimated
50-90% of people with a
learning disability have
communication difficulties,
an estimated 60% have
some skills in symbolic
communication using
pictures, signs or symbols.
(BILD, 2002).
Learning disability nurses
are in a unique position to
support individuals and their
carers understand a range of
health conditions, courses
of treatments and health
interventions. They have the
knowledge, skills and tools
to deliver innovative best
practice, and are well placed
to work collaboratively with
colleagues such as the
Dysphagia Team.
Emmerson et al (2011),
have stated that there are
a number of factors which
contribute to the health
inequalities of people with a
3
By increasing service users
knowledge about such issues
as dysphagia it helps to:
Raise their awareness
Helps them to
understand risk
Helps to prepare them
for interventions which
they or their friends
may later experience
Reduces the risk of
bullying (name calling)
when a peer is eating
‘baby food’ (soft
mashed puréed
consistencies).
Helps with compliance/
adherence to
interventions by
the SLT
The consequences of not
managing dysphagia are
choking, aspiration,
pneumonia and death.
(Howseman, 2013) By
taking a multi-disciplinary
approach to engage people
with learning disability and
their carers on the topic of
dysphagia, explaining the
symptoms and helping them
understand why modified
textures may be needed at
some point of their life or
the life of those around
them, health outcomes
are improved.
Howseman.T., (2013)
Dysphagia in People with
Learning Disabilities.
In Learning Disability
Practice Vol:16, No: 09.
National Patient Safety
Agency: Ensuring Safer
Practice for Adults with
Learning Disabilities who
have Dysphagia.
http://www.nrls.npsa.nhs.uk/
resources/?entryid45=59823
Ward, C.,2012. BILD
Factsheet: Older People
with a Learning Disability.
Acute Liaison Nurses – Members
of the Health Liaison Team
The Health Liaison Team is a specialist nurse led service that
supports adults with learning disabilities across Hertfordshire
to access mainstream health care services.
Part of Hertfordshire County Council’s Health
and Community Services (HCS), the team is
based within the Community Learning
Disability Service. Managed by the Strategic
Lead Nurse (HCS), the team comprises of:
Strategic Liaison Nurse (Primary Care),
Lead Nurse (Clinical Supervisor), Specialist
Epilepsy Nurses, Clinical Nurse Specialist
(Training Lead), Creative Practitioner, Expert
by Experience, Health Liaison Practitioner,
The Purple Star Strategy Project Team and the
Acute Liaison Nurses.
Astrid Ubas
Meet the Acute Liaison Nurses:
The Acute Liaison Nurses provide health
facilitation and specialist support to help
people with learning disabilities access the
hospital setting and get better health
outcomes. This may include support with:
•
•
•
Emergency hospital admissions
Hospital outpatient and clinic appointments
Planned procedures, investigations
or admissions
Natasha Collins
Abby Russell
Acute Liaison Nurse
Acute Liaison Nurse
Acute Liaison Nurse
Dionne Nolan
Maggie Klem
Adefunke Eriolu
Acute Liaison Nurse
Health Liaison Practitioner
Health Facilitation Lead &
Clinical Supervisor
4
What We Do
What are Reasonable Adjustments?
• Support people with
learning disabilities
to understand and be
involved in their health
and hospital treatment.
The Equality Act says that all services must make “reasonable
adjustments” to help people with disabilities. Including people
with learning disabilities. It is about making changes and doing
things differently to meet the needs of the person they are
looking after.
• Work with a range of
health and social care
professionals to
promote equitable
health care for people
with learning disabilities.
The Health Liaison Team created an acronym T.E.A.C.H,
which is used to help professionals understand and recall
what adjustments may need to be made:
• Work closely alongside
the hospital’s Adult
Safeguarding Lead
Nurses, and have
honorary contracts
with both acute
hospital trusts (West
Hertfordshire Hospital
Trust and East and
North Hospital Trust).
T.E.A.C.H.
Time
This might be having a longer appointment time or having an
early morning appointment when waiting times are shorter.
Environment
• Provide ongoing learning
disability awareness
training to acute staff.
Can a quieter area be used if the person cannot tolerate noise
or finds social interaction difficult.
• Help ensure a smooth
and safe hospital
discharge.
Having a flexible and positive approach treating individuals
with dignity and respect.
• Provide advice with the
implementation of
“My Purple Folder”
• Educate and encourage
health professionals to
provide “Reasonable
Adjustments”
Attitude
Communication
Providing information in a way that people can understand,
such as using clear and simple language, pictorial information
and symbols. Using The Purple Folder.
Help
Seeking guidance from others, including family, carers and
The Health Liaison Team.
Referrals and Care Pathways
The team operate an open referrals system with referrals made directly to the team contact
number or email. Referrals are responded to within 24 hours of receipt during the normal working
week. A named nurse is allocated to the individual on receipt of referral and an initial assessment
is carried out. Formulation of a personalised care plan follows that includes pre discharge planning
and is outcome focused. My Purple Folder is offered to all service users.
5
Supporting People
with Swallowing
Problems in Hospital –
Natasha Collins, Acute Liaison Nurse.
As an Acute Liaison Nurse,
I find a large percentage of
patients I support are being
admitted to hospital due to a
chest infection. This appears
to fit the national picture,
with research showing that
the main cause of death
in people with learning
disabilities was respiratory
infections (CIPOLD, 2013).
I can help by identifying when service users in
hospital may have a swallowing problem.
This includes highlighting when they are having
repeat admissions with a chest infection, or
when I recognise that someone may be
showing signs of aspiration (such as taking
longer to eat, or coughing after they have had
their lunch). I encourage ward staff to contact
the Hospital Speech and Language Therapists
(SLT) for a swallow assessment. I will prompt
staff to use the Purple Folder, to find out if an
individual has eating and drinking guidelines
in the community, and if they have a
Community SLT.
A key part of my role is ensuring a safe and
effective hospital discharge. I can make
referrals for a Community Speech and
Language Therapist if a service user requires
ongoing support when they leave hospital.
I also encourage effective communication
between hospital SLT/Dieticians and
Community SLT/Dieticians, so that there is a
clear discharge plan. I co-ordinate discharge
planning meetings in hospital, so that everyone
can meet face to face, which is always much
better than emails or phone conversations.
The Acute Liaison Nurses are also involved
in providing ongoing Learning Disability
Awareness training to the hospital staff.
During this we educate other professionals
on the risks of respiratory and swallowing
problems in people with Learning Disabilities
and how to help prevent this.
6
At times, I will need to provide advice and
guidance about the Mental Capacity Act.
Case Example:
I recently supported
a gentleman with
limited verbal
communication,
who was admitted to
hospital with a chest
infection. He was eating
very little (less than
500 calories a day) because
he had a swallowing problem.
He had a BMI of 17, and
was at risk of becoming
malnourished and getting
further chest infections.
Doctors felt that he should be
considered for a Percutaneous Endoscopic
Gastronomy (PEG), but were unsure how to
gain his consent. I supported the Consultant
Gastroenterologist to complete a Capacity
Assessment, where it was then found he
lacked capacity to consent. I then set up
a Best Interest Meeting, to help the
gastroenterologist with making a Best
Interest Decision. It involved carers from
his residential home, family members,
Hospital Dietician, Community Dietician and
Community Speech and Language Therapists.
It was a very successful meeting where
everyone involved was really willing to
listen to each other’s views and opinions.
Professionals were able to answer family
and carers questions about what aspiration
pneumonia was, and how this can be
prevented. Family and carers were then able
to be involved in advocating for the gentleman
what his needs and wishes may be if he was
able to communicate for himself. Overall it was
decided that it was in his best interest to have
a PEG inserted.
I find that the relationship with Community
Speech and Language Team is valuable,
and has grown stronger with having regular
Dysphagia Group meetings with the
Community Learning Disability Nursing
Service. It is really important to be able to
7
share resources and ideas, as well as
getting advice on complex cases.
The gentleman had his PEG inserted
successfully, with carers being
allowed to be present
to support through
the procedure.
He recovered well
saying he was ‘all
better now’, and
looking forward to going
home to ‘feed the birds’
which he enjoys. He was
discharged home a few days
later, after staff had received
PEG training organised by
the Hospital Dietician.
Although he will still be at risk of further
aspiration and chest infections, it is hoped
that these risks will be now be minimised.
His quality of life may also be improved, as
he is likely to have more energy now that his
calorie intake can be increased. He will also
have less pressure around meal times while
still being able to enjoy regular ‘taster’ meals
and drinks.
The following pages are a resource pack which have
been especially compiled to assist you have useful
conversations and give timely support to people
with a learning disability and their carers in the
area of dysphagia.
Useful Links and Resources Section
Food presentation:
http://www.nutilis.com/food-preparation-guide/food-preparation-tips
http://www.alzheimer.mb.ca/handouts/2C%20Bon%20Appetit!%20
Enhancing%20the%20Enjoyment%20of%20Texture%20Modified%20
Foods.pdf
Resource Pack
The National Patient Safety Agency has a range of resources which are
aimed at health professionals, GPs, and practical guides for carers.
http://www.nrls.npsa.nhs.uk/resources/?entryid45=59823
Speech and Language Therapy position paper
http://www.accessibleinfo.co.uk/pdfs/ald_position_paper%5B1%5D.pdf
Practical Guides
How safe is your swallow? A practical guide and assessment tool for carers
of adults with learning disability available through the BILD website
‘Me at meal times’ Guthrie, S. (2015) Lancashire Care Foundation Trust,
Calderstones Partnership Foundation Trust.
An Article written by a GP with a special interest in Dysphagia and
learning disabilities.
Howseman.T.,(2013) Dysphagia in People with Learning Disabilities in
Learning Disability Practice Vol:16, No: 09.
8
Makaton signs and symbols
Swallow
Resource Pack
Teeth
Drink
Mouth
Food
9
Makaton signs and symbols
Infection
Coughing
Resource Pack
Feeling
poorly
Dietician
Speech and
Language
Therapist
10
Eating and Drinking Safely
Why do we get swallowing problems?
Resource Pack www.learningdisability.org.uk
As we get older the muscles in our throat
get weaker. It becomes harder for our
brain to manage breathing and eating at
the same time.
11
This can lead to coughing and choking
People cough and choke because food goes
down the wrong way. This can be very
worrying and upsetting for them and their
friends and carers.
There can also be problems with the tongue
The tongue and other muscles in the mouth
can not move together in the right order.
The tongue is important when it comes to
swallowing correctly.
Eating and Drinking Safely
Food can fall out of the mouth
Because the throat muscles and the tongue are not working
together, food stays in the mouth and food might spill out.
Storing Food
Because the throat muscles
don’t work as well as they
should, spit or saliva stays in
the mouth and the person
cannot swallow it so it
dribbles out of the mouth.
Because the tongue and
the throat muscles are not
working together food stays
in the mouth and may get
stuck in the top of the mouth
or in the cheeks.
Resource Pack www.learningdisability.org.uk
Dribbling
12
Eating and Drinking Safely
Problems
Resource Pack www.learningdisability.org.uk
Because swallowing problems can cause
people to go off their food and they do not
eat or drink as much as other people they
may lose weight.
13
If food goes into your lungs instead of your
stomach you can get a chest infection.
If this happens you may have to go
to hospital.
Eating and Drinking Safely
What can help?
Sit up straight when eating or drinking.
Take small sips of drink.
Don’t watch TV or talk at the same time as
eating or drinking.
Eat your food slowly.
Resource Pack www.learningdisability.org.uk
Don’t put too much food on the fork
or spoon.
Good mouth care – cleaning your teeth
regularly means that there are fewer germs
to cause infections.
14
Eating and Drinking Safely
Who can help?
Tell your carer if you are worried about
your swallowing.
Resource Pack
Visit your GP.
Ask to see a Speech and Language Therapist.
15
Conner says ‘Why do I Cough?’
This piece of work was created by the Waterside Purple All Stars. The Purple All Stars are
groups of people with a learning disability who use creative art to give health promotion messages.
This work is facilitated by the Health Liaison Team’s Creative Practitioner, Kate Harding.
Conner’s friends were worried. A
staff member called Tricia patted
him on the back. After a while he
felt ok.
Are you ok Conner?
Should I pat you on the
back?
Conner started to cough.
Conner took a big gulp of his drink.
Conner and his friends decided to go to the pub to
celebrate his birthday.
Resource Pack
Conner Says “Why do I cough?”
Thanks for coming with
me to the pub. Cheers!
This document aims to highlight dysphagia issues and prompt carers to seek timely investigation
of symptoms related to dysphagia, which might otherwise be missed.
16
17
Conner spit
any food
you have
left in you
mouth out.
Breathe
slowly.
Tricia brought a glass of water to Conner.
Before he drank from it she checked his
mouth was empty of food.
I’m frightened
I need some
water.
Conner struggled to swallow
some of the sandwich and
began to cough.
It feels like my food
is stuck, my eyes are
watering too I need
help !
j
Mm mm this is a good
cheese sandwich!
Some of the food fell out
of Conner’s mouth and he
continued to cough.
A couple of days later Conner was having a snack
at the day centre.
Resource Pack
Conner says ‘Why do I Cough?’
I feel better now, but I am worried I will
cough again it’s very frightening when I do. I
will tell the doctor about my cough when I go
to my appointment.
Tricia can you help Conner he
is choking!
Resource Pack
hello can I make an
appointment please?
Why am I
coughing? I’m
not eating or
drinking. I need
help!
j
Sometimes people who
struggle to swallow can
choke on their own saliva.
Conner’s friend called for
help.
When Conner was feeling
better Tricia and Conner had a
chat about his coughing. He
asked her to call the doctors
surgery to make an appointment
for him to discuss his coughing
and swallowing with the doctor.
Conner recovered. The next
day he was chatting with his
friends in the kitchen. He
started to cough.
If you know someone with
a learning disability who
coughs regularly
especially when they eat
or drink, please discuss
with them about
contacting their doctor
or a Speech and Language
Therapist.
Tricia came quickly
and firmly patted
Conner on the back
until he recovered.
She was really
concerned for Conner.
Conner says ‘Why do I Cough?’
18
Conner says ‘Why do I Cough?’
More information about choking can be found on the St John’s
Ambulance web pages http://www.sja.org.uk/sja/first-aid-advice/
breathing/choking-adults.aspx
Resource Pack
If someone continues to choke call 999 or 112 for medical help
19
Seasonal Flu Vaccination Programme
With the imminent start of the Seasonal Flu Vaccination Programme and
recognising that individuals with learning disabilities are a vulnerable group
who may need reasonable adjustments to participate, we have included an
easy read Keep Safe From Flu leaflet as part of the resource pack.
Keep Safe from Flu
Lots of people get flu in the winter.
It can make your body hurt and give you a
bad cold.
Resource Pack
You can have medicine called a vaccine to
keep you safe from flu. The medicine is in
an injection. Given by a nurse or doctor in
your arm, once a year.
Ask your doctor or nurse about the flu
vaccine (injection).
If you do have flu rest and drink a lot.
20
Top to Toe Project
Resource Pack
People with learning
disabilities face significant
health inequalities due to the
barriers in accessing timely,
appropriate and effective
healthcare. Early detection
of illness is crucial as signs
and symptoms can sometimes
be attributed to their
disability due to diagnostic
overshadowing.
Research highlights inadequate
diagnosis and treatment of specific
medical conditions, including
heart disease, hypothyroidism and
osteoporosis. Evidence suggests that
‘signs of ill health’ are not always
recognised early enough and carers
may not be responsive in acting upon
the symptoms presented. Carers are
often not trained in how to recognise
the signs and report symptoms as
they may present differently in a
person with a learning disability.
The Top to Toe Project, run by
Community Learning Disability
Nurses, aims to provide information
and training to paid carers to enable
them to recognise early symptoms
of ill health and effectively support
attendance at health appointments/
consultations. The project focuses
21
on conditions that have been found
to be higher incidence in people with
learning disabilities then the general
population for example dysphagia.
Increased risk of swallowing
problems (National Patient Safety
Agency 2007) can affect general
health and wellbeing and in extreme
circumstances lead to death. The GP
can review medication/symptoms and
refer on for further investigations
or recent changes in health status
that affect swallowing. A symptom
checklist has been created within
the project and will be used as a
training resource for carers.
L. Farquharson (Clinical Nurse
Specialist/Training Lead).
Top to Toe
Symptom Checklist for Swallowing Problems (Dysphagia) in
People with a Learning Disability.
What this may look like (description)
Finding it hard to eat
and drink
The person may avoid eating.
The person may take longer over meals than normal
The person may get upset when seeing food or when eating.
Some people stop being able to recognise their food,
Some people have difficulty placing their food in their mouth,
some people are not able to control the food or saliva they
have in their mouth.
Cough during or
after meals
If a person coughs when they eat/drink, or shortly afterwards,
this can indicate the food has gone ‘the wrong way’.
Having a wet /
gurgly voice
If there is not enough control to clear the throat properly,
people may get a wet or gurgly voice.
Repeated swallowing
during eating and
drinking
Extra swallows are needed when eating and drinking to clear
the mouth and throat.
Food falling from
the mouth
Lack of control of the mouth and throat.
Bringing food back up
( regurgitation)
When there is not enough control for the food to go down,
food gets stuck so it is brought back up.
Choking
When food has gone the wrong way, It can block the airway
partially or completely, and the person is unable to breathe
normally until the blockage is cleared.
Resource Pack
Symptom
Other areas of the person’s health may be affected:
Symptom
What this may look like (description)
Chest infections
These can be frequent if food is ‘going down the wrong way’
i.e. into the lungs and not the stomach.
Weight loss
When someone has swallowing difficulties, eating can take
much longer (anything up to an hour or more) and be painful so
people go off their food.
Constipation
May occur if the person is not drinking enough fluid or eating
enough to form good bowel motions.
Hospital
admissions
Overall health declines or pneumonia is present.
Sometimes there are multiple infections (such as a chest
infection and urine infection).
If you see any of this, seek medical advice
22
Understanding and preventing ill-health caused by swallowing problems
People with a learning disability are at increased risk of swallowing problems (2007, National
Patient Safety Agency). This can affect their general health and wellbeing, and in extreme
circumstances lead to death.
There are many causes of swallowing problems such as:
• Issues with the structure of the mouth and throat
• Poor oral health
• Processing difficulties (coordination of the messages to the brain)
•Institutionalisation
• Mental health problems
• The effects of medication
• Dementia
Resource Pack
How to support
23
Do
Why
Follow the Speech & Language Therapists’
advice on changing food & drink texture.
Some people with swallowing problems need
to have a diet of mashed or pureed food, or
have thickened drinks.
The Speech and Language Therapist (SLT)
will assess where the swallowing problem is,
how serious it is, and what could help.
Sometimes making drinks thicker, or food
smoother, will prevent it going down the
wrong way.
Ensure that good oral health is maintained
Swallowing problems can mean bits of
food, drink or saliva build up in the mouth,
growing harmful bacteria. If this is then
swallowed and it goes down the wrong
way, it can cause serious chest infections.
Give extra care before and after meals,
using a dry toothbrush and little toothpaste
(low-foam and non-foam toothpastes are
available as well). All of this is to minimise
foaming that can go the wrong way down.
Help the person to clean their teeth, gums
and tongue, do not rinse, leave the paste on
– the fluoride benefits the teeth and rinsing
water may go down the airway.
Reduce distractions at meal times (TV /
Chatting)
If you help the person to concentrate
on the eating and swallowing, this may
improve swallow function and make the meal
more enjoyable.
Encourage an upright posture and small
mouthfuls of food or sips of drink which are
more manageable
This will help the swallow function and
reduces the risk of food going down the
wrong way
Check The NPSA website: www.npsa.nhs.uk/
resources/
This website has information on
dysphagia care plans and meal time
information sheets.
How to manage
swallowing problems
You have a key role in identifying
swallowing issues in the people that you
work with. Never accept coughing at meals
times as normal. Make a note of what
you see and tell your manager. Ask for
a referral to a Speech & Language
Therapist. Support the person to reduce
risk of serious health hazards, as above
Key worker/manager
A risk assessment may be needed. Ensure
there is a referral to a SLT.
GP
The GP can review medication and make
referrals for investigations. The GP
will check if anything else has changed
recently, such as the person’s medication,
and if this could have caused swallowing
difficulties.
Speech & Language
Therapist
The SLT can receive referrals directly
or via the GP. They will complete a
specialist dysphagia assessment and
make recommendations about food
textures. They work closely with the
dysphagia dietician.
Resource Pack
Carers
24
The Dysphagia Team Hertfordshire Partnership
University NHS Foundation Trust
In Hertfordshire there is a team of Speech and Language Therapists,
Assistant Therapy Practitioners and Dietitians, who support people with
learning disabilities with eating and
drinking difficulties.
East and North
of the county:
Telephone:
01438 792160
West of the county:
Email:
e&ncommunityats@hpft.nhs.uk
Telephone:
01923 238476 or 01923 650030
Email:
westcommunityats@hpft.nhs.uk
Speech and Language
Therapists:
Clare Dwyer
Katie Timms
Erin Kiernan
Assistant Therapy
Practitioner:
Kim Lee
Dietitian:
Claire Fenlon
Speech and Language
Therapists:
Nicky Ash
Jess Drayton
Assistant Therapy
Practitioner:
Richard Strange
Dietitian:
Emma Davey
Suzi Lee is the Professional Lead for
Speech and Language Therapy and
works across the whole of Hertfordshire.
The Speech and Language Therapy Service
also assesses and manages communication
difficulties and Lorraine Hansard is the
Communication Assistant Therapy Practitioner
in the West of Hertfordshire and Alyson
Robson is the Communication Assistant
Therapy Practitioner in the East and North
of Hertfordshire.
25
If you have any queries about dysphagia or
would like further information about our team,
please do not hesitate to contact us.
Or use the Single point of Access (SPA)
telephone contact: 0300 777 0707
Multi-Disciplinary Team Exploration of Swallowing
Issues in People with a Learning Disability by
Clare Dwyer
Dysphagia is the medical term for a
difficulty with swallowing. Some people
with dysphagia have problems swallowing
certain foods or liquids, while others cannot
swallow at all. Some examples of the
problems people may experience are:
Problems with chewing
Difficulty controlling food and drink in
the mouth
Difficulty swallowing food and drink
Sensation of food getting ‘stuck’ in the
throat whilst eating
Coughing and/or choking when eating
and drinking
Repeated chest infections
If there is a problem with the mouth, lips and
tongue and controlling food and drink, this is
Causes of dysphagia
Dysphagia is usually a part of ano
ther
health condition, such as:
Cerebral Palsy
Stroke/Head injury
Dementia
Cancer e.g. mouth cancer or
oesophageal cancer
Dysphagia may also be affected
by
environmental factors (e.g. a distrac
ting
dining room), posture, behaviour
(e.g. eating too quickly) and medic
ation.
Dysphagia may also occur due to
a
developmental disorder such as
a
learning disability.
Dysphagia is a common problem
for
people with learning disabilities.
It can
cause people to aspirate (food or
drink to
enter the lungs) and aspiration can
cause
chest infections, pneumonia and
over time
can cause irreversible damage to
lung
called oral dysphagia. If there is a problem in
the throat, this is known as pharyngeal
dysphagia. If there is a problem with both
stages of the swallow this is referred to as
oropharyngeal dysphagia. Dysphagia can
also be a problem with the oesophagus,
which is the tube, which carries food from our
mouths into our stomachs; this is known as
oesophageal dysphagia. This article focusses
on oral and pharyngeal dysphagia.
tissue. In some circumstances the
se can be
life threatening. In fact, respirator
y disease
has been identified as the leadin
g cause of
death for adults with learning dis
abilities
(Glover and Ayub, 2010).
Dysphagia can also cause people
to choke.
This is when food blocks the airw
ay causing
the person to stop breathing. Re
search has
shown that people with learning
disabilities
are at a much greater risk of cho
king when
compared to the general population
(Thacker, 2007, Samuels, 2006).
As we know that dysphagia is a
major
health issue for adults with learnin
g
disabilities, it is extremely import
ant that
both people caring for those with
learning
disabilities and the adult with a lea
rning
disability themselves are aware of
dysphagia. This includes knowin
g how to
spot the signs and symptoms of
dysphagia
and knowing what to do if you are
worried
about dysphagia.
26
Signs of dysphagia:
signs
These are some of the common
of dysphagia. Sometimes a person
y may
may only have one of these or the
have several:
Short Term Symptoms-Observed
ing/
during or immediately after eat
drinking:
/
Coughing during or after eating
drinking
r
Wet or gurgly voice during or afte
eating/drinking
in
Sensation of food getting stuck
the throat or chest
Effortful or painful swallowing
Lengthy mealtimes
g
Discomfort/effort when swallowin
ing
Watery eyes when eating/drink
Refusing food and drink
Distress at mealtimes
Drooling
Treating Dysphagia
There are a number of ways to help
reduce the risks associated with
dysphagia. Every person and every
swallowing problem is different, and
what might be helpful for one person,
may make things worse for another.
It is important that if you think you or
a person for which you care has
dysphagia, you/ they should always
be referred to a Speech and Language
Therapist, who will assess to ensure
that an individual is getting the right
kind of help for them. Some examples
of the type of advice that a Speech
and Language Therapist can offer
include: guidance on making
changes to consistency of food and
drink; posture and positioning at
mealtimes; environment changes at
mealtimes and recommending
specialist equipment.
Long Term Symptoms
Repeated Chest Infections
Weight loss
Urinary Tract Infections
Dehydration
What do I do if I suspect
dysphagia?
If you are worried that you or someone you care
for has dysphagia then please make contact
with the specialist learning disability service or
speak to your GP. An assessment by a Speech
and Language Therapist will be requested.
Speech and Language Therapists are the
professionals qualified to assess and manage
swallowing problems. In Hertfordshire, there
is a team of Speech and Language Therapists
who work with adults with learning disabilities
and support people with swallowing difficulties.
27
References
Glover. G and Ayub. M
. (2010)
How people with learn
ing
disabilities die. Improv
ing Heath
and Lives: Learning Di
sabilities
Observatory
Samuels, R. Chadwick
, D. (2006)
Predictors of asphyxiat
ion risk in
adults with intellectual
disabilities
and dysphagia. Journa
l of
Intellectual Disability Re
search,
vol. 50, no. 5, pp. 362370.
Thacker, A. Abdelnoor
, A.
Anderson, C. White, S.
Hollins,
S.(2007) Indicators of
choking
risk in adults with learn
ing
disabilities: A questionn
aire
survey and interview st
udy.
Disability and Rehabilita
tion,
30 (15): 11312-1138.
Continuing on our multi-disciplinary team exploration
of swallowing issues, this next article looks at working
with someone with a learning disability and gives
a dietician’s perspective focussing on the
’Food First Approach’...
Jane Smith (made up name)
was referred to the dietitian
because she was having problems
swallowing, losing weight and
getting constipated. The Speech
and Language Therapist had
recommended a pureed diet and
stage 1 fluid. The Dietitian found
out what foods and drinks Jane
liked. She then worked out
what Jane was managing to eat.
Jane’s diet was low in energy,
protein and low in fibre.
The Dietitian, Jane and her
Support worker talked about
ways to add extra goodness
to the food Jane was eating.
The plan was:
1
2
3
4
5
To have some pureed fruit mixed in with
the breakfast cereal.
To have a smoothie each morning instead
of squash (extra fruit, fibre and calories).
To add extra cheese to the pureed potato
in the main meal.
To use fortified milk (milk powder added
to full fat milk – this increases the protein
and calories) in all drinks and cereals.
To have ½ banana mashed and sieved
with custard or yoghurt as a bedtime
snack.
These small
changes added about an extra
350 – 400 kcal and 12 – 18 g protein each
day. The changes also increased the amount
of fibre Jane was having and helped with
the constipation.
People often think that prescription nutrition
supplements (Ensure Plus, Fortisip, Fresubin,
Complan Shake and similar) are needed to
help to put on weight. Sometimes they are
needed, but often making changes to the food
eaten is all that is needed. This is called the
Food First Approach.
A Dietitian uses the most up-to-date public
health and scientific research on food,
health and disease, which they translate into
practical guidance to enable people to make
appropriate lifestyle and food choices.
Dietitian is a protected title which means that
only people who have the correct degree,
dietetic specific training and are registered
with the HCPC (Health and Care Professions
Council) can call themselves a Dietitian.
Dietitians work in many areas, diabetes,
weight reduction, surgery, cancer, mental
health, learning disabilities and many more.
Written by Claire Fenlon –Dietician
Claire is part of the Dysphagia team, and
only sees people with swallowing problems.
Anyone who needs help with weight
management needs to go to their GP for
a referral to a general dietician, or join a
group for weight management, e.g:
Weight Watchers and Slimming World.
28
Now for some interesting
facts about swallowing for
you to digest!
Did you
know?
able
There are many vulner
ich are
population groups wh
at risk of dysphagia –
cident
Cerebral Vascular Ac
ck
(stroke); Head and ne
cancers, dementia,
s, cleft
neurological condition
l
palate, developmenta
e
ur
at
em
disabilities, and pr
infants, scleroderma
(autoimmune condition
affects jaw and
digestive tissues).
Some head and neck
cancer patients may only
have one type of saliva which
may impede swallowing.
ination of
Swallowing involves the co- ord
ltiple levels
31 muscles, 6 cranial nerves, mu
including
of the Central Nervous System
tex
the brain stem and cerebral cor
*Swallowing frequency varies with activity and is
greatest when eating. Most adult swallow 580 times a
day but is at its least frequent during sleep.
gia,
ing factors to dyspha
ut
rib
nt
co
ny
ma
e
ar
*There
the mouth
r anywhere between
cu
oc
n
ca
e
us
ca
its
d
an
urs,
ors include the behavio
and the stomach. Fact
are
motor acts which prep
d
an
s
es
en
ar
aw
y
or
sens
ess, the
ing; cognitive awaren
for the act of swallow
d
recognise the food an
to
le
ab
g
in
be
,
nt
me
environ
it to the
motor skills to bring
he
(t
it
to
ng
di
on
sp
re
food).
the smell and sight of
mouth; responding to
There are 2 type
s of saliva –
serous – watery
to wash food do
wn and viscid –
sticky to gather
particles and lubr
icate.
ing
ion and neutraliz
st
ge
di
ng
di
ai
ure, and
Saliva, as well as
ntain oral moist
ai
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he
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re
s
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e http://www.cram.co
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15
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29
30
1 Take food into the mouth
2 The oral phase: bolus on top of the tongue and bolus moves into pharynx
3 The pharyngeal phase: bolus reaches the tonsils and bolus moves safely through
the pharynx
4 The oesophageal phase: The bolus moves safely into the oesophagus.
Reference – A Practical Guide and Assessment Tool for Carers of Adults with
Learning Disabilities
4
3
2
Quiz
1
What are the stages of a safe swallow?
?
Quiz
?
?
?
?
?
?
?
?
?
?
??
Name that part
Ask Alison
Dear Alison
How can pureed food be made to look
and taste more appetising?
Dear Alison
What sorts of foods
cause the most problems
to people with swallowing
difficulties?
Dear Colleague
It depends on which part of the throat
is affected as to which types of food
may cause difficulties. Often, food with
skins such as baked beans and peas
can cause problems; or foods which
split into different consistencies, for
example, chocolate covered toffee.
In this example the chocolate melts to
a runny consistency whilst the toffee
remains soft and chewy. Raw tomatoes
are another good illustration of differing
consistencies; the skin of the tomato,
the liquid of the juice and then the
chewing of the fleshy fruit. Finding
alternative foods to those that cause
difficulties need to be considered
based on the individual need of the
person. Specialist advice can be
obtained from the Dietician and
Speech and Language Therapist.
Yours sincerely
Alison
Dear Colleague
Pureed food is often seen as unappetising as it is
difficult to recognise the individual parts of the dish.
Often there is a lack of flavour and the food may be
poorly presented. Complicating this is the person’s
attitude to the food, as frequently there is a lack of
food choice.
To overcome this think about making the food
visually appealing.
Don’t let food types merge or run together.
Never serve left-overs.
Enhance flavours by using citrus and spices
(depending on the tastes of the service user) use
chicken stock instead of water to soften foods/ mash.
Use commercially available food moulds to give the
appearance and shape of socially acceptable and age
appropriate food.
Pastry bags and food piping tips can be used to help
mould foods e.g. the flat tip to make pureed roast beef
slices or the round tip to make pasta shapes.
There are lots of helpful tips and advice available on
the internet (see our resource pack).
Yours sincerely
Alison
Name
That
Part
Answers
Do you have a question for our Strategic Lead Nurse? If you have any questions about our service or the practice of
supporting people with a learning disability then drop a line to Alison.Fitzgerald@hertfordshire.gov.uk
31
News and What’s Coming Up
Cheshunt Purple All-Stars ‘SHINE’ Event The Cheshunt Purple All-Stars
held their ‘Stay Safe in the
Sun’ event on the 7th of
July. The event delivered a
message about wearing high
factor sunscreen, keeping
hydrated and wearing sun
hats and sunglasses when
going out in the sun.
The messages were explained
through interactive art work
created by the All-Stars using
old water bottles, paint, sand
and costumes. Attendees
were encouraged to take part
in the artwork. They had the
opportunity to have a picture
of themselves taken wearing
sun hats and glasses which
they could take away with
them as a reminder of the
event and its messages.
An easy read leaflet was given
to each attendee using the
acronym S.H.I.N.E
The event was enjoyed
by over 50 attendees.
The highlight was a flash
mob dance performed by the
Cheshunt Purple All-Stars to
‘Holiday’ by Madonna, where
each part of the message
about being safe in the sun
was shown through dance.
S-uncream
H-ydration
I-nformation
N-utrition
E-yes
News and What’’s Coming Up continued...
32
News and What’s Coming Up
Spectrum CRI Accreditation –
Spectrum CRI were awarded the Purple Star
on Monday 3rd August. Staff have attended
training and made service improvements, to
offer a reasonably adjusted service to people
with a learning disability.
Lister Day
Surgery –
The Day Surgery
Unit at the Lister
Hospital will be
awarded the Purple
Star at an event on
24th August.
HealthFest - The Purple Star Strategy
Project Group hosted a stand at the Welwyn
Garden City HealthFest event at the Howard
Centre on Saturday 13th June. It provided an
opportunity to share information about the
Purple Star Strategy and work of the Health
Liaison Team with the general public. The theme
of the event was ‘Five Ways to Wellbeing’. It was
a very wet but fun day!
LD Awareness Week – 15th-21st June 2015. One way in which the service marked this event was
by the Purple Star Strategy Group holding a stall at the Galleria in Hatfield, to help raise awareness of the
health needs of people with a learning disability.
Legislation Change Regarding Accessible Information – From 31st July 2016,
all organisations that provide NHS or adult social care are required to follow a new Accessible
Information Standard. Patients with disabilities and family carers will benefit from this, as it will ensure
that information they receive is clear, consistent and easy to understand. For further information please
see http://www.england.nhs.uk/2015/07/03/access-info-standard/
Comments and feedback - Have you seen a health care theme that concerns you when
working with people with a learning disability? Is there a group or an event which you think the
Community Learning Disability Nurses can help with? If so, why not give us a call on 01438 844674, and
we would be happy to discuss this with you.
End of Life Care
Contacts:
Telephone: 01438 845372 Email: nursingnewsletter@hertfordshire.gov.uk Web: www.hertsdirect.org
Follow our service on https://twitter.com/HertsCLDS Twitter: @HertsCLDS and #purplestarpractice
Design Ref: 074483
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