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Mesothelioma Information

National Mesothelioma Experience Survey - Mesothelioma UK would like to give mesothelioma patients, carers and those bereaved the opportunity to describe what their experience of treatment, care, investigations, hospital appointment or admissions has really been like. The survey will enable Mesothelioma UK to inform health care providers what is being done well, what could be improved and hopefully demonstrate where there are variations in care.Please click for the online survey or you can call the Mesothelioma UK Helpline on 0800 169 2409 or email mesothelioma.uk@uhl-tr.nhs.uk for a paper copy to be posted to you. Thank you.

Mesothelioma UK Information Booklets

Mesothelioma UK and the Mesothelioma Nurse Action Team (M-NAT) have produced a range of patient information booklets. M-NAT is a professional,special interest group, of nurses from around the UK. We share a common interest in mesothelioma and a strong desire to improve services, treatment and care for those affected by Mesothelioma. The full pathway of information collated and developed by the M-NAT is demonstrated in an at a glance version of the Mesothelioma UK Patient Information Pathway.

For more details about the producers of each recommended piece of information within the Mesothelioma UK Patient information Pathway and advice about where electronic or paper copies can be obtained from please view the Mesothelioma UK Patient Information Pathway Content Details document.

Both the Mesothelioma UK Patient Information Pathway and the Mesothelioma UK Patient Information Pathway Content Details are presented using each stage of the patient journey - Asbestos Awareness, Referral, Investigations, Diagnosis, Treatment, Living with Mesothelioma and Compensation/benefits. The information recommended for use by M-NAT at each of these stages is listed and each stage of the journey is colour coded.

Downloadable Mesothelioma UK produced information is in A4 format, follow the links below to print these off. If you would like a paper copy of any of the booklets please call the Freephone Helpline on 0800 169 2409 or you can complete an order form. Nurses wishing to order multiple copies please use the order form but note we limit the number of leaflets provided to help prevent potentially out of date material remaining in circulation.

Mesothelioma UK would like to thank M-NAT, in particular Gerry Slade, and the many proof readers who supported the development of this information pathway. All the information will be regularly reviewed and updated and we sincerely welcome your comments and suggestions for future versions. Please click here to complete a feedback form

Asbestos and the Diseases it Causes
Concerned about Asbestos Exposure?
What is Mesothelioma?
Peritoneal Mesothelioma
Mesothelioma Support Services
Accessing Mesothelioma Treatment and Care
Pleural Effusion
Local Anaesthetic Thoracoscopy
Tunnelled Indwelling Pleural Catheter
Radiotherapy & Mesothelioma
Surgery for Malignant Pleural Mesothelioma
Percutaneous Cordotomy
PETAL Guide to Recovery
Sweating in Mesothelioma
Ascites
Mesothelioma of the Testicle
Applying for a Blue Badge and Free Prescriptions
Action Mesothelioma Day

Mesothelioma Good Practice Guide

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

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

SAIL Seafarers' Advice & Information Line
Telephone: 08457 413318
SAIL

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.

Pleural Mesothelioma.com
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

Holistic Cancer Care Centre - Middlesborough
http://www.holisticcancercarecentre.org.uk/
Accessible by patients registered with a consultant oncologist based at James Cook University Hospital, Middlesborough

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