In February 2007 the Department of Health published new advice for NHS healthcare professionals in England on how to organise services and improve standards of care for people with mesothelioma and their families. These guidelines are known as the 'Mesothelioma Framework'.
This page explains how healthcare services in the NHS are organised for people with mesothelioma. It also describes the medical care you should expect - provided the Framework guidelines have been implemented by your local NHS - so that you can be sure you are receiving the best available care.
The Framework applies only to people living in England. However, the British Lung Foundation is pressing for comparable care standards to be introduced elsewhere in the UK. Although the developers of the Framework agree the guidelines are in the best interests of patients, it is not compulsory for local NHS organisations to implement them.
If you want to read the full Mesothelioma Framework, go here to view it on the Department of Health website or order the publication on 0870 155 5455.
The Framework has taken into account the key recommendations from the Mesothelioma Patients' Charter, which was developed by the British Lung Foundation in collaboration with people affected by mesothelioma and their families. It also takes into account other relevant medical and scientific evidence.
If you are looking for information about the diagnosis and treatment of mesothelioma then please go here.
Medical care for people with mesothelioma
The role of your GP
The role of multidisciplinary teams (MDTs)
The role of local lung MDTs
The role of specialist mesothelioma MDTs
The role of clinical nurse specialists
The role of audit and patient surveys
The role of regional cancer networks
What can you do if you are unhappy with your care?
Further sources of support and information
Most people with mesothelioma will first visit their GP to ask about the symptoms they are experiencing. You can expect your GP to know when and where to refer you if they suspect that you have mesothelioma. Your GP should also ask you about your past, recording your job history.
If you live or have lived in an area where mesothelioma is relatively common, you should expect your GP and local chest specialists to be especially vigilant of the possibility of mesothelioma if you have certain symptoms.
You may want to ask your GP some of the following questions:
- What is mesothelioma?
- Have other people in the area had mesothelioma?
- Am I more at risk because of the job I used to do?
- Please explain what is happening in my chest - why am I feeling breathless and in pain?
- How can I relieve my breathlessness and pain?
- What tests will I need to find out if I have mesothelioma?
- Will I need to go and see a specialist hospital doctor or nurse for treatment?
- Will my case be reviewed by a multidisciplinary team (see below for more information) and when can I expect feedback from that review meeting?
- What happens next with my treatment?
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The Mesothelioma Framework recognises that cancer services are best provided by 'multidisciplinary teams' (MDTs). These are groups of health professionals working together in teams to diagnose, treat and care for people with particular types of cancer.There are two different types of MDT for mesothelioma - a ‘local lung MDT’ and a ‘specialist mesothelioma MDT’ -and they have different responsibilities.
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The Framework recommends that all people who have been diagnosed with mesothelioma have their case discussed by their local lung MDT. People who are experiencing an unexplained pleural effusion (a build-up of fluid between the layers of the chest lining) should also expect to have their case reviewed since it could be due to mesothelioma.
It is recommended that local lung MDTs meet weekly, to minimise patient waiting times. The team may include:
- chest physicians (specialist doctors)
- radiologists (X-ray specialists)
- pathologists (who examine tissue specimens)
- oncologists (cancer specialists)
- palliative care specialists
- surgeons
- specialist lung cancer nurses
- team coordinators.
These teams also have access to other specialists such as psychologists, social workers, dieticians, physiotherapists, occupational therapists and spiritual support.
Local lung MDTs should confirm the diagnosis of mesothelioma where possible, using X-rays, scans and tissue samples, and assess how far the disease has progressed. Your local lung MDT will also discuss and suggest care options for people with advanced mesothelioma, who need mainly supportive and palliative care (go here for more information).
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When people would benefit from more radical treatment, or when it is difficult to make a diagnosis, the Framework recommends patients are referred to a specialist mesothelioma MDT. The team members are more specialised in mesothelioma and the team is usually based in a hospital where lung surgery is performed. The team may include:
- chest physicians, with a special interest in mesothelioma
- radiologists (X-ray specialists) with a special interest in lung disease
- clinical oncologists (cancer doctors specialising in
- X-ray treatment)
- medical oncologists (cancer doctors specialising
- in chemotherapy)
- specialist chest surgeons
- doctors who specialise in palliative care
- pathologists (doctors who examine tissue specimens) withspecial expertise in diagnosing mesothelioma
- clinical nurse specialists
- team coordinators.
Specialist MDTs should provide guidance to patients on the suitability of extensive surgery, or more complicated treatments such as chemotherapy. They should also help to confirm a diagnosis in cases where the evidence is not clear, and assess how far the disease has progressed.
You may want to ask your doctor or nurse some of the following questions:
- Who is on the multidisciplinary team?
- What kind of team is it - a local one or a specialist mesothelioma one?
- How will the team help me?
- Will my case be reviewed by a specialist team?
- Can I go to the MDT meeting when my case is discussed?
- Who will explain what happened at the meeting?
- What treatment and care has been suggested for me?
- Are there any trials of new treatments that I can take part in?
- Who will be looking after me now?
- How can I know that the treatment offered is the best for me?
- Who is the lead person for mesothelioma in the Primary Care Trust?
- Can I see them to talk about my case?
- What happens next?
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The Framework recommends that you should be allocated a 'key worker' to support and guide you through the various stages of your 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. S/he will continue as your main contact, although in time this role may pass over to a member of a palliative care team.
Your clinical nurse specialist will help you understand your condition and the treatment options available to you. S/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 MDT meetings with the other health professionals who will discuss your treatment options and recommendations. S/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.
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.
You may want to ask your doctor or nurse some of the following questions:
- Please explain how mesothelioma is affecting my body.
- Will I have a Clinical Nurse Specialist?
- Can I have a Mesothelioma Patient Information Pack?
- What happened at the MDT meeting when my case was discussed?
- What can be done to make me feel better?
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It is important to measure the quality of service being provided so that MDTs can learn quickly from experience. To do this, teams need to ensure that they collect relevant information on patients' cases and carry out local audits.
The national lung cancer audit programme (LUCADA) is designed for the collection of data on mesothelioma patients. You may wish to ask your doctor if information about your care is being included in the LUCADA audit.
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The care of all cancer patients is overseen regionally by special groups of healthcare professionals known as 'cancer networks'. These networks draw together the different health professionals and medical services that can help in your diagnosis and treatment.
The Framework recommends that each cancer network should have a lead doctor/clinician and a lead nurse with special expertise in mesothelioma. They are responsible for a number of things including:
- assessing the needs of mesothelioma patients in their region at least every year
- monitoring the quality of treatment and care services provided
- ensuring good communications between different medical services
- organising multidisciplinary teams and checking that they meet regularly
- assessing the frequency of mesothelioma in their area
- monitoring the results of different treatments
- ensuring that patients are able to participate in clinical trials.
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This page describes how medical care services in England are best organised in the NHS for people with mesothelioma and their families. If you feel that you are not receiving the care and support you need or that you are entitled to, you should speak to your clinical nurse specialist or doctor.
If you are still not satisfied, you could contact your local Primary Care Trust (in England) and the Primary Care Organisation in other parts of UK.Their phone numbers are in the phone book. You can also find contact details on the NHS website. Telephone the British Lung Foundation Helpline on 03000 030 555 if you need advice.
The British Lung Foundation produces a DVD/video on lung cancer and mesothelioma.To request a copy please call the BLF Helpline on 03000 030 555.
Further sources of support and information
- Asbestos support group - Barrow- C/o Hospice of St Mary of Furness Ford Park, Ulverston Cumbria LA12 7JP t: 01229 580305 ext.32
- Asbestos support group - Bradford - Unison Offices 2nd Floor, Auburn House Upper Piccadilly, Bradford BD1 3NU t: 01274 393949
- Asbestos support group - Cheshire - 3 Fryer Street Runcorn, Cheshire WA7 1ND 01928 576641
- Asbestos support group - Derbyshire - Trade Union Safety Team 70 Saltergate Chesterfield S40 1JR t: 01246 231441
- Asbestos support group - Hampshire - t: 07940 328637 (Lynne) or t: 07792 543426 (Diane)
- Asbestos support group - Gtr Manchester - Windrush Millennium Centre, Unit 2.5 70 Alexandra Road, Moss Side Manchester, M16 7WD t: 0161 636 7555
- Asbestos support group - Merseyside - Suite 32, Second Floor, Oriel Chambers 14 Water Street, Liverpool L2 8TD t: 0151 236 1895
- Asbestos support group - North East - Trade Union Centre, 119/121 Marton Road Middlesborough, Cleveland TS1 2DU t: 01642 240044
- Asbestos support group - Sheffield And Rotherham :- 311 Aizlewoods Mill Nursery Street Sheffield S3 8GG t: 0114 2823 212
- British Lung Foundation - helpline 03000 030 555
- The June Hancock Mesothelioma Research Fund- t: 0114 274 4420
- Mesothelioma UK- t: 0800 169 2409
- MacMillan cancer relief - t: 0808 8082020
- The Mick Knighton Mesothelioma Research Fund - t: 0191 263 7386
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Page last medically reviewed: February 2008
