National Macmillan Mesothelioma Resource Centre. Bulletin April 2009 MESOTHELIOMA UK UPDATE

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1 Direct Line Fax Helpline: Website: MESOTHELIOMA UK National Macmillan Mesothelioma Resource Centre Bulletin April 2009 MESOTHELIOMA UK UPDATE Dear Colleagues Since our last bulletin Mesothelioma UK has been very active communicating and attending Action Mesothelioma Day activities including leading the debate about a potential change of date (from 27 th February) for We have also been rallying support for the development of a national government supported research centre for asbestos related diseases. Clinical lead for this, John Edwards has written an update in this bulletin. The Mesothelioma UK Charitable Trust is now accepting donations and an information leaflet has been developed to advertise the charity. If you would like some of these to hand out to patients/carers please contact us. We are still eager to recruit 2 more trustees. Enquiries from anyone interested, particularly if you have a charity or accounting background, would be very welcome. The charity exists to raise money to fund the services provided by Mesothelioma UK; namely the helpline, website, educational events, newsletters etc. Website and Helpline: In the last quarter Mesothelioma UK has received 219 contacts via the helpline or and there have been 1402 hits on the website. M-NAT: The next M-NAT meeting will focus on symptom management and it is being held in Manchester on 2 nd June. Thank you for you continued support. Liz 1

2 Chemotherapy in Mesothelioma Project (ChiMP) The ChiMP Project has over 713 patients currently registered and we hope to get as many of these as we can, with full data and who reach all the set criteria, to be involved in the data analysis phase. Please remember your patients who were watch and wait have they now decided against chemotherapy treatment or have their circumstances changed? we do need this information so please let us know so we can update your registrations. Out of the 713 patients registered to date, the breakdown shows that we have complete data on 490 patients, partial data on 87 patients (those still going through their treatment regime) 132 patients with no data and 4 have been excluded from the audit for specific reasons, so those who have relevant data on registered patients please forward it to us as soon as possible as the closing date is 30 th April For those who are struggling to collect data and would like me to come and help please let me know and I will arrange a day and time to suit. I would like to thank everyone who has responded to our recent request to register the location of the disease of their patients. This information is very important to us and will be used in the analysis breakdown. We will shortly be sending out forms for you to fill in regarding your payment details, so we are able to reimburse you once you have submitted your final registrations, or patient updates which will then complete your registered site data, so please look out for those and fill them in and return them to us as soon as possible. It just remains for me on behalf of the steering committee to thank all those persons who have taken part in this project and have made it a success. Jill Lemon. EPP Club A discussion forum/club has recently opened on the Macmillan website for Extrapleural Pneumonectomy (EPP). To join the group you can register at: 2

3 Asbestos Timebomb - Daily Mirror Campaign The Daily Mirror recently launched a campaign for those affected by asbestos. Click on the link below to view articles. death%26method=full%26objectid= %26print_version=1%26siteid= name_page.html Carers Direct ( is a new service launched on NHS Choices as part of the government s New Deal for Carers. The service is designed to improve support for England's growing number of carers. It provides carers with information, advice and support including: guidance on the different stages of caring, information for claiming benefits, advice for young carers, contact details for local authorities and support groups, news articles, and case studies with videos. The free telephone helpline will launch on 1 April and will open 7 days a week on This is a THA (Telephone Helplines Association) Special Freephone Tariff number which means it will be free to call from most mobiles. Future development will allow carers to receive answers to enquiries and join online communities and forums. Both the helpline and the NHS Choices website cover England only. To find out more about THA Special Freephone Tariff numbers call Deirdre Rusling on or deirdre.rusling@helplines.org.uk. 3

4 The Pneumoconiosis etc (Workers Compensation) Act 1979 The Government has recently increased the amounts of the lump sum payable under the pneumoconiosis etc (Workers Compensation) Act Payments are made to sufferers of Mesothelioma and other lung diseases whose exposure was caused in the workplace. Amounts payable under the 2008 Diffuse Mesothelioma scheme remain unchanged. Payments under this scheme are made to people whose exposure was not as an employee such as those who were exposed by washing a partner s overalls, those who lived near an asbestos factory, or the selfemployed. For more information on either of these schemes or other benefits payable to Mesothelioma patients please see the Mesothelioma UK website BMIG/NCRN Meso Group Progress towards the proposed virtual National Centre for Asbestos Related Diseases. The Development Group have been busy lobbying for funding for NCARD. Immediately before Action Mesothelioma Day 2009, important meetings took place in London. The first of these was with Gordon Brown s Special Advisor on Health, Greg Beales, at 10, Downing Street. This was followed by the excellent opportunities to meet ministers and MPs at the British Lung Foundation Parliamentary Reception for AMD 2009 at the House of Commons and, finally, a meeting at the Department of Health with Ann Keen MP, Minister for Health with responsibility for cancer. Subsequently, a meeting has been held with Cancer Research UK, others are planned with the Conservative Party and Liberal Democrats health teams aiming to secure cross-party agreement. Michael Clapham MP has asked about NCARD funding in Prime Minister s Questions and Paul Rowen MP mentioned NCARD in his Adjournment Debate on Asbestos in Schools. A meeting of the researchers (British Mesothelioma Interest Group) in April will allow us to develop a coherent strategy to the Department of Health. All groups have been most supportive of the proposal for ring-fenced funding for asbestos-related disease research, but pressure must continue to put into action the clear desire of researchers and asbestos victims. The strong feelings of the Asbestos Victims Support Groups Forum are clear in the signing of tens of thousands of petitions for AMD Pressure must continue on our local MPs and national policy makers, both directly and via the Trade Unions, to gain Government agreement to fund NCARD. Three-quarters of lobbying campaigns which reach this point falter we all must not let this happen. Mr John G Edwards - Consultant Thoracic Surgeon Northern General Hospital Sheffield Teaching Hospitals NHS Foundation Trust 4

5 BI 100 PN(A) Forms Copies of BI 100 PN(A) forms are available from the individual Industrial Injuries Disablement Benefit centres in Ayr, Barrow in Furness, Hartlepool. Castleford, Sutton in Ashfield and Broadstairs. Contact details for these offices below. Nurses need to contact the centre which deals with their area who will forward a batch as and when needed. Region Mailing List Telephone Number East and West Midlands Jobcentre Plus, Sutton-in-Ashfield IIDB Centre, Padge Road, Nottingham, NG80 8AX North East Jobcentre Plus, Hartlepool IIDB Centre, Hartlepool Jobcentre, Earlsway, Gateshead, NE92 1AP North West and East of England Jobcentre Plus, Barrow IIDB Centre, Pittman Way, Preston, PR11 2AB Scotland Jobcentre Plus, Ayr IIDB Centre, Ayr Jobcentre, Baird Street, Glasgow, G90 8AB South East and London Jobcentre Plus, Broadstairs IIDB Centre, Sandling Road, Maidstone, Kent, ME99 2AB previously Yorkshire and The Humber, the South West and Wales Jobcentre Plus, Castleford IIDB Centre, Leodis Way, Leeds, LS88 8AQ Petition Response Coroners and Death Certification Bill If you signed a petition asking the Prime Minister to "ensure the passing of the Coroners and Death Certification Bill in the next parliamentary session so that coroner s inquiries following a death from mesothelioma are carried out in a way sensitive to the needs of the bereaved." The Prime Minister's Office has responded to that petition and you can view it here: See below links for a series of bulletins providing a brief update to those with an interest in coroner reform: Petition Response Mesovictims If you signed a petition asking the Prime Minister to "1. Abandon the Department of Business Enterprise and Regulatory Reform's proposal to remove the requirement upon employers to retain copies of Employers Liability Insurance certificates for a period of 40 years and; put in place as a matter of urgency arrangements for a compulsory national database contacting current and historic details of employers insurers so as to safeguard the position of victims of mesothelioma and other occupational diseases for which there is a long period of latency before the condition develops and to enable compensation claims pursued by them to be dealt with quickly." The Prime Minister's Office has responded to that petition and you can view it here: 5

6 MALCS TRIALS UPDATE MALCS - A History MALCS was set up over 10 years ago at The Institute of Cancer Research to estimate the mesothelioma and lung cancer risks associated with specific occupations and work practices across Britain. Our analysis of the first 622 mesothelioma patients and 1420 controls recruited to this study has just been published in the British Journal of Cancer a brief outline of these results is given below. This study has been adopted by the NCRN, is SSA exempt, and has MREC approval for recruitment to continue until Results from the 1 st Phase of Recruitment: 1. The well-known asbestos exposure hazards in dockyards, on ships, in asbestos factories, in power generation and in insulation still account for 25% of all mesothelioma cases; but the majority of cases are in construction-related industries. 2. The lifetime mesothelioma risk for British men born in the 1940 s who did more than 10 years of relevant work before age 30 will be about 6% for carpenters and 2% for plumbers, electricians and painters, with lower but still substantial risks to general construction and other workers exposed to asbestos. 3. The lifetime risk in unexposed men and women (about 1 in 1000) is doubled in those who lived with an exposed worker before age There was no overall risk in men and women who reported living within a mile of an asbestos factory, shipyard or power plant. 5. The excess lung cancer risk in workers heavily exposed to asbestos appears to be similar to the mesothelioma risk, so more than 1 in 10 of all British carpenters born in the 1940 s may die of a cancer caused by asbestos. A HUGE THANK YOU TO ALL CURRENT & PAST RECRUITERS. WE COULDN T HAVE PUBLISHED THESE FINDINGS WITHOUT YOUR HELP IDENTIFYING PATIENTS WE ARE STILL OPEN FOR RECRUITMENT - PLEASE HELP US Boost your NCRN funding with this easy postal survey You identify the patients and we send out the survey it really is that simple MALCS is open to recruitment until Britain has the highest mesothelioma rate worldwide, and the rate is still increasing 25 years after asbestos use virtually ceased. We need to continue recruiting patients into MALCS to evaluate potential risks to younger workers in various occupations. Please notify the MALCS study team of the following patients: Male mesothelioma patients born since 1940 Male primary lung cancer patients born since 1940 who have had a lung resection Female mesothelioma patients born since 1925 HOW TO RECRUIT PATIENTS: 1. Give the patient a patient information sheet and complete a 1-page notification form 2. Send the notification form to us at The Institute of Cancer Research (SAE s can be provided) There is no monitoring and no further paperwork for you to do. When we receive the form, we write to the patient with the postal survey. The patient returns the survey directly to us at the ICR. NCRN funding is awarded for every patient notified to us in this way (irrespective of whether they subsequently take part by returning the postal survey we send them). For more information please contact the MALCS study team By MALCS@icr.ac.uk Or telephone:

7 Remember the dead - Fight for the living Workers' Memorial Day, April 28th Workers Memorial Day takes place every April 28th, an international day of remembrance of workers killed, disabled, injured or made unwell by their work. It highlights the preventable nature of the majority of workplace accidents and ill health and promotes campaigns and union organisation in the fight for improvements in workplace safety. The slogan for the day is Remember the dead - Fight for the living. Workers' Memorial day will be marked on Tuesday 28th April in Rochester Castle gardens. There will be a gathering at the memorial tree at Refreshments will be available after the memorial. People can tie purple ribbons to the tree in remembrance of family/friends/work colleagues who have died from work related accidents and diseases. There is also a Workers' Memorial Book where names can be recorded. This year the focus will be on asbestos related illnesses. A Breathtaking Journey 1200 miles of breathtaking cycling to highlight the breathtaking scandal of asbestos and breathtaking scandal it has caused. We will be cycling through regions of the country that have the highest number of Mesothelioma sufferers. It is a breathtaking fact that although asbestos is one of the biggest workplace killers, there is almost no dedicated funding for research into cancers caused by asbestos. Our aim is to raise awareness of the terrible impact Mesothelioma has upon its victims and their families. We support the campaign for an increase in government funding for research into asbestos related cancers. The breathtaking journey takes place from 20 th June 4 th July If you would like to cycle part of the journey with us please contact one of the breathtaking team below: Jason Addy Katrina London Paul Glanville Log onto for up to date details. Tour dates: 20 th June Glasgow 29 th June - Sheffield 21 st June Edinburgh 30 th June - Derby 23 rd June Newcastle 1 st July - Birmingham 25 th June Barrow 2 nd July Royal Albert Docks/Barking 26 th June Liverpool via Manchester 4 th July - Southampton 28 th June - Leeds 7

8 Forthcoming Events Training Day Supporting and Advising Families Affected by Asbestos Related Diseases - 24 th April 2009 Venue: Cotswold Suite, Aztec Hotel & Spa, Aztec West, Bristol BS32 4TS Website: Lung Cancer and Mesothelioma Conference 29 th April 2009 Venue: Imperial War Museum, Duxford, Cambs. For more information contact: or Kent & Medway Cancer Network Mesothelioma the Wider Perspective! 12 th May 2009 Venue: David Salomons House, Southborough, Royal Tunbridge Wells For more information contact: Frances McKay, Macmillan Lung/Mesothelioma Nurse Specialist on or Caroline Williams, Lung/Mesothelioma Nurse Specialist on ASCO Annual 09 Meeting 29 th May - 2 nd June Venue: Orlando, Florida, USA Website: International Symposium on Malignant Mesothelioma 25 th - 27 th June 2009 Venue: Omni Shoreham Hotel, Washington DC Website: 8

9 13 th World Conference on Lung Cancer 31 st July th August 2009 Venue: San Francisco, USA Website: European Respiratory Society Annual Congress 12 th - 16 th September 2009 Venue: Vienna, Austria Website: ECCO th ESMO Multidisciplinary Congress 20 th - 24 th September 2009 Venue: Internationale Congress Centrum, Berlin, Germany Website: NCRI Cancer Conference 4 th - 7 th October 2009 Venue: Birmingham, UK Website: 3 rd International Cancer Control Congress (ICCC09) 8 th - 11 th November 2009 Venue: Cernobbio, Como, Italy Website: 9

10 11 th Annual National Lung Cancer Forum for Nurses Conference & AGM th & 20 th November 2009 Venue: Newcastle Website: Details to be confirmed please save the date NLCFN Members Only 8 th Annual British Thoracic Oncology Group Meeting th January th January 2010 Venue: To be confirmed please save the date Website: If you have any news you would like included in the next Bulletin, please forward it to Mesothelioma UK. Yours faithfully Liz Darlison Liz Darlison Mesothelioma UK 10