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Mesothelioma Information & Discussion Forums

Mesothelioma Booklets

The June Hancock Mesothelioma Research Fund have produced a booklet entitled "Information for people with mesothelioma and their carers". For a copy please call us on the Helpline or alternatively you can call the June Hancock Mesothelioma Research Fund on 0114 274 4420.

cancerbackup and Macmillan Cancer Support (who merged in 2008) have produced a booklet entitled "Understanding Mesothelioma". This booklet gives information and guidance on Mesothelioma for people with the disease and their carers. For a copy please call us on the Helpline or alternatively you can call cancerbackup direct on 0808 8001234.

Please follow this link to access the information in the booklet

Mesothelioma Discussion Forums

The Macmillan Cancer Support Share website section includes 2 discussion forums for Mesothelioma.

Discussion forum for Mesothelioma

The EPP Club is a message board solely for Mesothelioma patients who have had surgery. The EPP Club would value any contribution from you regarding your experiences, or perhaps just sign into the club, to let them know that others patients exist. Terry is a member and he says "I’m just emerging from radiotherapy following a full on EPP in Oct 07 and presently doing OK, so please do look in and let us know about you".
Link to EPP Club

The PETAL guide to recovery from a major operation by Graham Sherlock-Brown (September 2006)
Graham had an Extra Pleural Pneumonectomy in October 2002. Graham is an active member of the Mesothelioma UK Steering Committee and is a contributor to the EPP club discussion forum (above).

Links

The Mick Knighton Mesothelioma Research Fund
c/o British Lung Foundation
Sir G B Hunter Memorial Hospital The Green
Wallsend
Tyne & Wear
NE28 7PB
Website: www.mickknightonmesorf.org
Email: c.knighton@mkmrf.org.uk
Telephone: 0191 2630276

The June Hancock Mesothelioma Research Fund
Registered Charity Number 1121784
c/o Adrian Budgen, Irwin Mitchell
Riverside East
2 Millsands
Sheffield S3 8DT
Website: www.junehancockfund.org
Email: info@junehancockfund.org
Telephone: 0114 2744420

International Ban Asbestos Secretariat
Website: http://www.britishasbestosnewsletter.org/

Justice for Asbestos Victim Admin Centre - Belfast
Telephone: 028 90731224
Provides support and advice. Registered charity number XR61445

Roger Lowe Asbestos Campaign
Roger Lowe Campaign

Asbestos Support West Midlands
Asbestos Support WM

Mesothelioma Cancer Center
Mesothelioma Diagnosis
This site has achieved HON code approval from Health on the Net (HON) Foundation - works to preserve the accuracy and trustworthiness of web based medical information. Please note this is a US site.

Carers Direct - Information, advice and support for carers - Freephone 0808 8020202
Carers Direct

Mesothelioma UK - NMMRC undertakes no responsibility for the accuracy of any information contained in non-related websites or given by non-related organisations.

Planning for your Future Care - a Guide

The National End of Life Care Programme in collaboration with the University of Nottingham and the National Council for Palliative Care has recently launched the patient information booklet ‘Planning for your Future Care – A Guide.

Planning for your Future Care Guide

Department of Health Framework for Mesothelioma

The Department of Health have produced advice for the NHS on how to organise services for Malignant Pleural Mesothelioma patients to improve quality of care across the country.

Framework for Mesothelioma

British Thoracic Society Statement on Malignant Mesothelioma

BTS Statement

NHS Cancer Care in England and Wales

Diagnosis

Cancer referral guidelines for GPs were issued in 2000. Your GP should use these to determine whether you need to see a consultant. If the GP feels you need urgent attention you should get an appointment within two weeks. The hospital should organise tests as quickly as possible. The people looking after you should tell you when these tests will be carried out. You should be told about the nature and purpose of the tests, when you will get the results and who will give them to you. You should experience minimum discomfort during the tests and receive good information and support. The tests should be at a time to suit you. You should be referred to an appropriate cancer specialist. Your test results should be passed quickly to the specialist who is seeing you. The first meeting is normally to give you the diagnosis. You should feel free to bring someone with you for support if you wish. The consultant giving you the diagnosis should be trained in communication skills and give you sufficient time to ask questions. You can also ask for a specialist nurse to be there to help you. Someone should also be available to discuss your diagnosis with you after the initial interview, either by telephone or during another visit. You have the right to seek a second opinion. Your GP should be told quickly about your diagnosis and treatment.

Treatment

Hospital staff should tell you how long you need to wait for treatment. You should be told what to expect with regard to your treatment. If you have the kind of cancer where evidence shows that it is important, your surgery should be performed by a specialist or sub-specialist. You should feel free to ask your consultant whether this applies to you. If chemotherapy is being used (drugs to kill cancer cells or prevent or slow their growth), they should be prescribed by a doctor who specialises in treating cancer (an oncologist). The administration of the chemotherapy should be supervised by a nurse with the appropriate training. Chemotherapy should be provided in local cancer units for your convenience. Your treatment should be carried out efficiently to avoid delays. Your treatment plan should be discussed by a multi-disciplinary team which includes cancer nurses and all main consultants. If you have to attend more than one hospital your records should be full and accurate in each. Good supportive care should be available throughout your treatment. Those looking after you should tell you how to get help, including from sources outside the NHS. Detailed plans should be drawn up to meet your needs at home after you have been discharged from hospital. Your GP should be told when you have been discharged. The people looking after you should tell you who is responsible for your follow-up care and provide contact details. Each cancer network, which is the network of organisations you may visit during your cancer treatment, should have agreed treatment guidelines and standards.

Palliative Care

This means care which alleviates symptoms but is not designed to bring about a cure. Someone should take responsibility for making sure that your needs for palliative care are recognised. If you feel that you have any needs for care, you should ask someone, such as your GP or district nurse, about this. You should have access to specialist staff for palliative care. Good arrangements should be in place for palliative care outside normal office hours and you should be told about these arrangements. Your ongoing care should be coordinated and you should be told by those looking after you who is in charge. You and your family should have good practical and emotional support whenever you or they need it. If you die, you should be able to die where you and your relatives choose, with good support for terminal care. The people looking after you should take responsibility for ensuring bereavement care is offered to your family.

These service guidelines have been taken from NHS Cancer Care in England and Wales (December 2001), a report published by the Commission for Health Improvement and the Audit Commission. The full report can be viewed here