Mesothelioma in the UK Liz Darlison Mesothelioma UK The National Macmillan Mesothelioma Resource Centre June 2010 Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
Contents Size of Mesothelioma epidemic in UK Why we have so much Mesothelioma What we are doing about asbestos exposure A typical patient journey including treatment and trials in the NHS Sources of Help and Support
1968-154 deaths registered 1864 deaths in UK in 2002 1928 deaths in UK in 2005 2156 deaths in UK in 2008 (incidence 2327) Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
Patient Demographics Age Mean Median SD Range 74.5 75.1 10.43 36-93 Frequency 30 25 20 15 10 Mesothelioma Applied Research Foundation - 2010 www.curemeso.org Age at Diagnosis Asbestos 0 74% reported definite or possible exposure to asbestos 5 36-40 46-50 56-60 66-70 76-80 86-90 Age Source: Alex Chapman, Martin Muers et al, Leeds
The problem is not going away! Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
A coalition campaign led by the British Lung Foundation to raise awareness about mesothelioma. Partnership Event Patient, Carers, Charities, Asbestos Support Groups, Industry, Health Care Professionals 2010 Year 5 Coordinated by Mesothelioma UK
Investigations Chest Xray Staging CT MRI/PET Pleural aspiration U/S or CT guided biopsy Mesothelioma Applied Research Foundation - 2010 www.curemeso.org Thoracoscopy (medical/surgical)
Treatment options There are no national guidelines Clinical trials lacking ASC appropriate for all and involves: regular follow-up, nursing support, rapid referral if required, and assessment of, and appropriate treatment for, physical, psychological, and social problems There is a variation in practice
Developments Mesothelioma framework Revised BTS Statement on Mesothelioma (in press) Clinical Trials Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
Not enough body of clinical evidence for Nice guidelines Network leads for MPM Specialist MPM MDT s Education particularly in high incidence areas All MPM patients have a key worker
Treatment Options Supportive/specialist palliative care Chemotherapy Radiotherapy Surgery Multi-modality treatment rare Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
Radiotherapy Entire pleural surface - significant response or increased survival not demonstrated Adjuvant in early presentation combined with surgery and chemo. currently under evaluation Prophylactic - drain/aspiration sites Palliative - sites of symptomatic disease
The Role of the Thoracic Surgeon in Malignant Mesothelioma Tissue diagnosis Tumour staging Symptom Control Radical Resection Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
Trials MSO1 Randomised trial of Active symptom control with or without chemotherapy MALCS Research to estimate the mesothelioma and lung cancer risks associated with specific occupations and work practices across Britain Meso/VATS Randomised trial of video-assisted thoracoscopic cytoreductive Pleurectomy vs talc pleurodesis MARS & MARS 2 Does radical surgery (Extra pleural pneumonectomy (EPP)) improve survival?
Who do patients/carers turn to? Family and Friends GP Family Health Books Internet Asbestos Support Groups Hospital consultant Lung Cancer Nurses Ward/Clinic Nurses 2,700,000
Incidence Vs IIDB Claims Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
Benefits and compensation Attendance Allowance Vs Disability Living Allowance Industrial Injuries disablement Benefit Lump Sum Payment DS 1500 / BI 100 PN Civil Compensation (Free Prescriptions and Blue Badge)
A national nurse led initiative Provide high quality, impartial and up-to-date support and information Develop a national network of trained and experienced nurse specialists. Promote nurse-led research. Work in collaboration with charities, organisations and individuals interested in mesothelioma. Promote the development of mesothelioma support groups.
www.mesothelioma.uk.com
HELP LINE Free phone Help-line 0800 169 2409 Open 9.00 4.30 Monday Friday Opened 13 th September 2004 900 contacts annually 20% Health Care Professionals 58% Patient/Carer 22% Other 54% dealt with by RN
Asbestos Support Groups Mesothelioma Applied Research Foundation - 2010 www.curemeso.org Bradford Cheshire Clydebank Clydeside Derbyshire Greater Manchester Merseyside North-East Ridings, Leeds Sheffield Hampshire Tayside Barrow West Midlands
Mesothelioma Support Groups Barrow in Furness Hampshire LONDON Guys and St Thomas s East London Mesothelioma Support Royal Marsden Hospital Leeds Newcastle Medway/Swale Leicester Swindon & South West Cambridge Southend Mesothelioma Applied Research Foundation - 2010 www.curemeso.org West Hertfordshire. East and North Hertfordshire
M-NAT Mesothelioma Nurse Action Team Mesothelioma UK Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
Global shift in asbestos use. 70% of global asbestos production originates in 3 Asian countries 10 million lives may be lost before asbestos is banned world wide. 50% of global asbestos consumption occurs in Asian countries (China, Thailand and Indonesia) 3 biggest global consumers are China, Russia, India Mesothelioma Applied Research Foundation - 2010 www.curemeso.org www.ibasecretatiat.org
Roger Plowman Mesothelioma Applied Research Foundation - 2010 www.curemeso.org
Thank you www.mesothelioma.uk.com mesothelioma.uk@uhl-tr.nhs.uk Tel: 0800 169 2409 Mesothelioma Applied Research Foundation - 2010 www.curemeso.org Fax: 0116 250 2810