Accessing Mesothelioma Treatment and Care

Helpline 0800 169 2409
Email: Mesothelioma.uk@uhl-tr.nhs.uk
Accessing Mesothelioma Treatment and Care
Introduction
England, Scotland, Northern Ireland and Wales have developed different structures for
managing their respective National Health Services. The Mesothelioma Framework
applies only to those people living in England. However comparable care standards are
delivered across the UK.
In England the NHS has developed National Service Frameworks (NSFs) to cover some of
the highest priority conditions such as cancer. NSFs have two main roles; they set clear
quality requirements for care based on the best available evidence and offer strategies
and support to help organisations achieve these. In addition, England is geographically
divided into networks for cancer care. Each cancer network includes GPs, hospitals and
health service commissioners.
Getting care right for people with cancer is crucial and the first NSF for cancer was called
the NHS Cancer Plan. Published in 2000 it set out the first ever national strategy to
organise and rejuvenate cancer services in England. Its success has been built upon by
the Cancer Reform Strategy published in 2007, which outlines the direction for cancer
services for the next five years.
You can learn more about Cancer Networks, the NHS Cancer Plan and the Cancer
Reform Strategy from the Department of Health www.dh.gov.uk or telephone 020 7210
4850.
The National Institute for Health and Clinical Excellence (NICE)* has developed guidance
for the NHS on the drugs and services most likely to improve outcomes for cancer
patients. There is insufficient research evidence for NICE to prepare guidance specifically
for Mesothelioma however there are many generic guidance documents applicable to all
cancers including Mesothelioma. You can learn more about the guidance documents from
NICE www.nice.org.uk or telephone 020 7067 5800.
* In Scotland this role is fulfilled by the Scottish Medicines Consortium
www.scottishmedicines.org.uk.
The Mesothelioma Framework
Despite there being insufficient research evidence for NICE to prepare Mesothelioma
specific guidance, it is imperative that Mesothelioma patients are diagnosed as early as
possible. They then can be offered the most appropriate treatment, have access to best
symptom management and be offered appropriate information or advice. The Department
of Health developed a Mesothelioma Framework based on advice from members of the
Lung Cancer and Mesothelioma Advisory Group and from the British Thoracic Society.
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© Mesothelioma UK June 2010
Helpline 0800 169 2409
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The framework aims to provide all healthcare providers with advice on how to organise
services for Mesothelioma patients in order to improve quality of care to a uniformly high
level across the country. Uptake of the framework is not mandatory but it is hoped that all
providers will work towards its implementation. The framework recommends that each
cancer network should have a lead doctor and a lead nurse and includes advice on
configuration of services, raising awareness, clinical management and underpinning
programmes such as information, research and audit. You can obtain a copy or read the
full version of the Mesothelioma Framework on www.dh.gov.uk or telephone 020 7210
4850.
Configuration of Services
All patients suspected of having Mesothelioma or with confirmed Mesothelioma should
have their case discussed by a Lung Multi-Disciplinary Team (LMDT). Members of the
LMDT include respiratory doctors, oncologists (radiotherapy and chemotherapy), thoracic
(chest) surgeons, specialist nurses, palliative care doctors, pathologists, radiology (x-ray)
doctors and a team of administrative staff. Based on x-rays, scans and biopsy reports the
LMDT should confirm the diagnosis of Mesothelioma where possible.
Where there is difficulty confirming a diagnosis or where a patient may be considered
suitable for a broad range of treatments or clinical trials the patient should be referred to a
Specialist Multi-Disciplinary Team (SMDT). The SMDT discusses 25+ Mesothelioma cases
per year and advises smaller less experienced LMDTs. The SMDT members are the same
as the LMDT except each member will have a specialist interest in Mesothelioma. Doctors
referring to the SMDT should be informed when the patient is being discussed and invited
to attend. The SMDT should review all pathology, x-rays and scans and make
recommendations for the patient’s management, encouraging recruitment to national trials
where possible. The patient remains the responsibility of the LMDT doctor referring the
case to the SMDT.
Raising Awareness
Raising awareness within the Mesothelioma Framework focuses on early diagnosis rather
than warning against the dangers of exposure to asbestos. Two target audiences are
considered, the general public and GPs. Cancer Networks in areas associated with
asbestos related industries are encouraged to run local initiatives to maintain a high level
of suspicion of asbestos related disease amongst GPs.
Clinical Management
The framework seeks to address a number of organisational issues relating to diagnosis
and treatment.
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© Mesothelioma UK June 2010
Helpline 0800 169 2409
Email: Mesothelioma.uk@uhl-tr.nhs.uk
Diagnosis:
• Rapid access lung cancer clinics should accept referrals for suspected
Mesothelioma.
• All LMDTs should have access to ultrasound/C.T. guided pleural biopsy and
medical or surgical thoracoscopy.
• Each network should have a protocol for the management of pleural effusions.
• SMDT pathologists should review the biopsies of all cases discussed and have
access to a national pathology reference panel.
Treatment
• The LMDT and SMDT should consider treatment and care options before a plan is
discussed and agreed with the patient.
• Wherever possible entry into clinical trials is explored with the patient.
• Cancer Network and oncologist discussion should identify the most appropriate
location to administer chemotherapy.
Underpinning Programmes
The Role of Clinical Nurse Specialists (CNS)
The Framework recommends every patient be allocated a “keyworker” to support and
guide them through the various stages of treatment and care. This is likely to be a “Clinical
Nurse Specialist”, who is a nurse with special expertise in supporting people with cancer
and their families. She/he will continue as the main contact.
Your Clinical Nurse Specialist will help you understand your condition and the treatment
options available to you. She/he will also be available to discuss any concerns you have.
They should be able to provide you with the information you and your family need and
answer any questions you have throughout the duration of your illness.
Your Clinical Nurse Specialist will attend the LMDT meetings with the other health
professionals who will discuss your treatment options and recommendations. She/he will
also work with the other healthcare professionals providing your treatment. They will make
sure that referrals between services occur at the right time and that the services you
receive are appropriate for you.
If you do not know your local CNS, Mesothelioma UK can put you in contact with them.
The Framework recommends that clinical nurse specialists have a 'Mesothelioma Patient
Information Pack' available. This should include information about:
•
•
•
•
the disease
local NHS services and treatment options
possible benefits and compensation
sources of further advice and support.
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© Mesothelioma UK June 2010
Helpline 0800 169 2409
Email: Mesothelioma.uk@uhl-tr.nhs.uk
Supportive and Palliative Care
The framework recommends that referral pathways and communication between your
LMDT and palliative care services should be clear. In addition palliative care and symptom
control should be central to any management plan.
Follow-up Appointments
The framework does not contain recommendations for follow-up appointments and care.
There is a variation in how often and who patients see for follow-up care which allows
patients and their healthcare team to negotiate a schedule that is suitable for the
individual.
Follow-up care may be provided by the G.P., community palliative care nurses, district
nurses, a hospital or hospice based consultant, a nurse specialist or a combination of
these.
All patients and their carers should be advised about signs, symptoms and issues to
monitor for and be aware of how to gain timely access to their healthcare team.
MESOTHELIOMA UK PROVIDES SPECIALIST, IMPARTIAL, UP TO DATE SUPPORT AND INFORMATION
This information has been prepared for Mesothelioma UK by the Mesothelioma Nurse Action Team:Author: Liz Darlison, Leicester
Date: June 2010
Download Mesothelioma UK information from www.mesothelioma.uk.com or to request a copy tel: 0800 169 2409 or
.
email mesothelioma.uk@uhl-tr.nhs.uk
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The Mesothelioma UK Charitable Trust:Mesothelioma.ukcharity@uhl-tr.nhs.uk
Freephone:- 0800 169 2409
c/o The University Hospitals of Leicester NHS Trust,
Glenfield Hospital, Hospital Management Offices, Groby Road, Leicester LE3 9QP
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© Mesothelioma UK June 2010