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Mesothelioma UKNewsletterChristmas Issue - December 2010In this issue: Welcome to ourPage 2: Final Newsletter for 2010• MALCS - Mesothelioma And Lung Cancer Study Our patient and carer conference was held on 2nd October in London. (An NCRN Postal Survey – Over 200 were registered for the event and feedback has been excellent. NCRN ID 1167)• Travel Grants It is difficult to know where to pitch Thank you to Gerry Slade for working• Travel Insurance some of the technical presentations, so hard with me and the members of but over all evaluations have been M-NAT to get the pathway developed.Page 3: very positive and once again everyone The full pathway should be uploaded• The Importance of Patient felt very much ‘lifted’ by Natalie Doyle onto the National Information Support Groups and her closing presentation. Pathways website shortly.• Forthcoming Events for Health Professionals The 2011 conference will be the first The second Mesothelioma Practice Saturday in October and in response in Cancer Care On-line module startsPage 4: to comments made this year we will on 24th January. Anyone interested be using the same venue. in applying should contact the Royal• Mesothelioma – A Patient’s Marsden School of Cancer Nursing Story We were delighted to be able to and Rehabilitation Tel: 020 7808 2900• MesoVATS Trial launch the new patient information Email: email@example.com package at the conference. ThroughPage 5: the Mesothelioma Nurse Action Team I can hardly believe I am writing this, we have designed an ideal patient the months have gone by so quickly,• The Delivery of Coroner information pathway and written but all of us at Mesothelioma UK hope Reform numerous booklets to complement it. you have a very enjoyable festive• Mesothelioma UK Patient We have since launched the pathway holiday and sincere best wishes for Information to lung cancer nurses where it has 2011.Page 6: been very well received and orders for copies have been coming in thick and fast. Liz Darlison Nurse Consultant• Mesothelioma UK Charitable Trust UpdatePage 7:• Mesothelioma UK Sponsors If you have an event youPage 8: would like to publicise or you would• Mesothelioma Patient like to write an article for a future Support Groups newsletter please contact firstname.lastname@example.org If you would like to be removed from (or added to) the mailing list, please call freephone 0800 169 2409 email email@example.com or write to: Mesothelioma UK, Hospital Management Offices, Glenfield Hospital, Groby Road, Leicester, LE3 9QP
MALCS - Mesothelioma And Lung Cancer Study The Importance of Patient Support Groups(An NCRN Postal Survey – NCRN ID 1167) Mesothelioma support groups are an invaluable help to patients and their carers but access to them is limited.MALCS was set up over 10 years ago to estimate the mesothelioma and lung cancer risks associated withspecific occupations across Britain. Much is done to address the In early 2009 a separate, carers physical symptoms of mesothelioma only group was formed. In thisAlthough we have moved office, We are still open for recruitment. NCRN funding is awarded for for example breathlessness, pain, forum carers are able to address thenothing else about MALCS has Please continue to help us. Boost every patient notified to us in this tiredness, loss of appetite, weight loss concerns that are sometimes difficultchanged and we are still open to your NCRN funding with this easy way (irrespective of whether they etc. but there is one aspect of the to discuss in front of the sufferers.recruitment until 2015. Britain has the postal survey – you identify the subsequently take part by returning disease that is less talked about - the Over time close friendships havehighest mesothelioma rate worldwide, patients and we send out the survey – the postal survey we send them). psychological impact of the disease been formed and the mutual supportand the rate is still increasing 25 years it really is that simple on the patient and their carers. A continues after bereavement. For after asbestos use virtually ceased. For further information, please contact British Lung Foundation Survey of the healthcare professionals involvedWe need to continue recruiting How to recruit patients: the MALCS study team: mesothelioma patients and their with the group, it has provided a verypatients into MALCS to evaluate carers in February 2009 showed that informative insight into the problems,potential risks to younger workers in 1. Give the patient a patient Telephone: 020 7927 2860 or 79% of carers and 41% of patients concerns and interests of patientsvarious occupations. information sheet and complete a E-mail: MALCS@lshtm.ac.uk felt isolated or alone some or most of and their carers. 1-page notification form the time.Please notify the MALCS study team 2. Send the notification form to us at Cancer Research UK Epidemiology & The enthusiasm is infectious andof the following patients: the London School of Hygiene & Genetics Unit Two years ago at Papworth Hospital recent fundraising by the group has Forthcoming Events for• Male mesothelioma patients born Tropical Medicine Department of Non-Communicable in Cambridge a specialist nurse, at raised over £2000 for research and since 1940 Disease Epidemiology the request of a patient, set up a education. A website has been Health Professionals• Male primary lung cancer patients There is no monitoring and no further Faculty of Epidemiology & Population mesothelioma support group. The designed to enable patients and born since 1940 who have had paperwork for you to do. When we Health group has grown and now attracts an their families to access up to date British Thoracic Society Winter ANY surgery to remove lung tissue receive the form, we write to the London School of Hygiene & Tropical average attendance of twenty-seven information on meetings with the Meeting 2010 over and above a biopsy patient with the postal survey. The Medicine patients and their carers. Many newest innovation being an internet 1st Dec 2010 to 3rd Dec 2010• Female mesothelioma patients patient returns the survey directly to Keppel Street Queen Elizabeth II Conference patients are prepared to travel from forum where they can exchange Centre, London born since 1925 us in London. London WC1E 7HT outside the area – in some cases views and comments. www.brit-thoracic.org.uk involving a round trip of up to seventy miles. This shows how much they I hope the positive experience of our 12th Central European Lung Cancer value the psychological benefit they mesothelioma support group will Conference (CELCC12)Travel Grants Travel Insurance get from meeting fellow sufferers, exchanging ideas and giving and encourage and empower patients, carers and healthcare professionals 2nd Dec 2010 to 4th Dec 2010 Budapest, Hungary receiving mutual support. to set up similar groups around the www.celcc2010-budapest.hu/The June Hancock Mesothelioma Research Fund are pleased to country.announce that they are now awarding up to 10 travel grants a year. The gatherings are far from sober Chicago Multidisciplinary Symposium occasions. There is much laughter http://www.papworthhospital.nhs.uk/ in Thoracic Oncology - AmericanApplications will be considered Applications should be made in Society for Radiation Oncology - with frequent requests to keep mesosupportgroup Co-sponsored by ASCO, ASTRO,from researchers and health care advance of the proposed travel to the noise down by directors and IASLC and University of Chicagoprofessionals to support travel to permit a decision to be taken before administrators in adjacent rooms. by Gerry Slade 9th to 11th Dec 2010conferences where applicants will any expense is incurred. Successful Recent meetings have included talks Mesothelioma Lung CNS Chicago, Illinois, USAeither present papers or speak to a applicants are required to complete on pain control, breathlessness, diet www.thoracicsymposium.org/poster exhibit. and return a claim form no later than and exercise. These are followed by See back page to find your local one month after the travel date with Patients with Mesothelioma or other refreshments and a weekly raffle. patient support group. 9th Annual British Thoracic OncologyIn certain circumstances grants may details of the actual costs incurred. types of cancer may often find it Group Conference 2011also be awarded for educational Applications to support conference difficult to get travel insurance as Wednesday 26th to Friday 28th purposes, for example, for a study presentations must include a copy of many insurance companies will January 2011 atvisit to an academic centre or to the submitted abstract. regard this as a pre existing condition. To order patient information The Burlington Hotel, Dublin, Irelandattend a course. Applications for co- Mesothelioma UK can provide a travel www.btog.orgsponsorship with other organisations To apply for a travel grant you will pack listing companies who may be booklets please call our freephone helpline on BTOG / Mesothelioma UKor institutions are welcome. need to complete an application form. These can be obtained from willing to insure these patients. 0800 169 2409 Postgraduate Course in Mesothelioma and BTOGIndividuals may apply for up to a the JHMRF by contacting Dr Kate To obtain a travel pack please or email Postgraduate Course in Lung Cancermaximum of £500.00 in any one year Hill by email firstname.lastname@example.org or call 0800 169 2409 or email 28th to 30th Mar 2011period. telephone 0113 343 0864. email@example.com firstname.lastname@example.org Glenfield Hospital, Leicester Email email@example.com Mesothelioma Newsletter - Christmas Issue December 2010 Mesothelioma Newsletter - Christmas Issue December 2010 3
Mesothelioma – A Patient’s Story MesoVATS Trial The Delivery of Coroner ReformI never actually worked with Asbestos...all this Prospective randomised controlled On 14 October 2010, Jonathan Djanogly MP, Parliamentary Under-pain and despair for me was caused by washing trial of VAT cytoreductive Secretary of State at the Ministry of Justice, made a written statementmy husband’s clothes back in 1961. pleurectomy compared to talc to Parliament announcing plans for changes to the coroner system in pleurodesis in patients with proven England and Wales.After National Service he went back as a or suspected malignantShipwright in the Dockyard where he worked with mesothelioma. This followed an internal review of the In line with this, we will be consulting onasbestos. We married and he left to work at British scope and timing of coroner reform in a revised Charter for Bereaved PeopleUralite making Window Boxes for Council flats etc. In the last 12 month period (September light of the difficult financial situation in light of the recent announcement. 2009 – October 2010) we recruited 49 facing Government as a whole. The Charter will make a real differenceRay had a scan and he has scarring. I, on the other patients. Therefore, we achieved our to families and we are keen to workhand, have Mesothelioma. I washed his clothes. target of 4 patients a month. All this In a statement, the Minister stressed: with all interested parties in developingPrior to my diagnosis I was a very active person. I regularly went to keep fit classes, is due to a lot of hard work by you all. “We believe the proposals I am putting a draft.went swimming, walked in the countryside - 14 miles sometimes and every day Many thanks. forward today will bring improvementswithout fail walked the dog 2.5 miles. This changed on coming back from holiday in to the system, and address current The current financial situation doesSpain in 2009. We are pleased to report that two new inconsistencies and inefficiencies in the mean that these reforms must be surgical centres have recently opened – delivery of service to bereaved families” brought forward without the nationalI had burnt myself on an iron over the new year and had not felt it. My arms andhands twisted and my feet went numb and I couldn’t breathe. A visit to the doctor New Cross Hospital in Wolverhampton (Local PI Mr Ian Morgan) and Leeds It is intended to bring forward a number leadership framework and new appeals system, headed by a Chief Coroner. In Mesothelioma UKresulted in an admission to K&CC hospital. They drained 5 litres of fluid from mylungs. I was given the news that I had Mesothelioma and no future, such a pretty Teaching Hospitals NHS Trust (Local PI Mr Nilanjan Chaudhuri). In addition, of measures from the 2009 Act to achieve these aims, including: order to achieve improvements and benefits for the bereaved, some of Patient Informationname for a deadly disease. Prognosis was 3 months to 2 years . three centres (Harefield Hospital, St the functions of the Office of the Chief • enabling operational problems facing Coroner need to be transferred to an Mesothelioma UK and the Georges Hospital and ColchesterI arranged my funeral, threw out my old clothes and bought new things for the home coroners to be addressed; alternative body. To enable the transfer Mesothelioma Nurse Action General Hospital) are going throughso that Ray wouldn’t have to worry about such things. • reviewing and updating the Coroners of functions, the Office of the Chief Team recently produced a range the R&D approvals system. Once they Rules; Coroner has to be abolished, and it has of patient information booklets are opened we will have a total of 11I was given an appointment for Mrs King and she carried out the Talc op in Guys • issuing and monitoring guidance on been proposed that this will be done including: surgical centres and 4 non-surgicalHospital. The operation was a success and this was followed by wound radiation centres. We look forward to them all compliance with best practice, alongside the abolition of other publicand chemotherapy. I hated the chemo - 10 hours of watching fluids going into my including a new national charter for bodies in the Public Bodies Bill. “What is Mesothelioma?” being up and running soon.veins and then next day sick. I was so weak that I needed a stick to hold me up bereaved people; “Concerned About Asbestoswhen I walked around. The Trial Steering Committee recently • maintaining and improving training for The Health Secretary’s decision to take Exposure?” decided to have all the initial staging coroners and their officers, and forward the introduction of medicalJust as I got better the next 21 days came round and another chemo and back to “Asbestos and the Diseases it CTs read by a pair of radiologists so • encouraging the further examiners – to work in parallel withthe sickness and weakness. But after 4 sessions the CT scan showed I was stable. Causes” that we can compare the radiological establishment of support services coroners to ensure that poor or criminalI enjoy life again and I’m able to walk the dog, but I do tire easily and afternoons I staging of all patients in each arm. To provided by the voluntary sector to certifying practices are detected “Radiotherapy and Mesothelioma”drop off to sleep. I now have a tumour that is shrinking but we don’t know when itwill return. do this we are submitting a protocol those attending. and addressed – will be a significant improvement. As a secondary “Surgery for Malignant amendment so that we can request We believe that this package, purpose, it should enhance the medical Mesothelioma”We have a motor home and during the past 4 months we have covered just over 4 copies of the CTs from each hospital.thousand miles travelling around the UK. underpinned by suitable guidance, will knowledge available for coroners to “Mesothelioma Support” Many thanks to all of you who have deliver real and significant improvement draw on when investigating their own and various others.We recently had the results of my latest scan. The Oncologist said “we don’t often recruited recently – let’s keep going! to the way in which the coroner service cases. Jonathan Djanogly’s statementsit in this chair and give out good news but today is an exception”. He handed me We urge you all to have one last big is delivered. The Minister recently met sets out other changes we are intending We have had quite a lot of interestthe results and said “your tumour has shrunk”. push. If every site could recruit 3 more with a number of civil society groups, to take forward – it can be accessed in these booklets. To find out more patients we will get there! including the British Lung Foundation at www.justice.gov.uk/consultations/ about them and to order copiesI said “I didn’t think that was an option”. “Well it’s true and you can read the report”. (BLF), to discuss how best to take reform-coroner-system.htm. please call freephone no. 0800 169But as I looked at Ray who was staring at the doctor I could see his jaw drop and his Recruitment Update forward reform and we are aware of 2409.mouth was open but he wasn’t saying anything. The Doctor was so excited at my To date 154 patients have been the work carried out to date by the BLF The Government is committed tonews he kept shaking my hand. I asked him what this means for me now. I had a 3 recruited and randomised out of a with the Coroners’ Society to create reforming the coroner system and we Alternatively, an order form ismonth timescale, which was now at a year. “So how long now?”. He stretched his target number of 196. best practice guidance for coroners on believe that the proposals outlined will available on our websitearms wide open “who knows” he said “you are unusual and lucky to get this news. We are now over 75% of the way! mesothelioma. Ministers are keen to provide for significant improvement. www.mesothelioma.uk.comYour prognosis is an open ended situation”. build on this collaborative approach to However, as outlined, we continue to Basildon 14, Sheffield 34, Leicester 12, ensure that we are able to deliver their welcome interaction with all with and Please complete and postI get very tired now and my husband tells me to rest and slow down, but this illness aims for the coroner system. would be keen to hear your views. Guys 6, Papworth 85, Brompton 1, to address on form or emailis terminal and it’s not going away. I need to do all the things that I’m able to while I Nottingham 2 firstname.lastname@example.org withcan. It wont beat ME I will beat IT. Mesothelioma didn’t know what it took on when itstarted on me! Please e-mail email@example.com your order. Helen Munday Papworth Hospital NHS Trust Elizabeth Gibby Deputy Director responsible for Coroners, Burials and Tracey HeseltineBy Mavis Nye (See Ray and Mavis’ Blog: http://rayandmave.co.uk/default.aspx) firstname.lastname@example.org Legal Services Regulation and Redress, Ministry of Justice Mesothelioma UK4 Mesothelioma Newsletter - Christmas Issue December 2010 Mesothelioma Newsletter - Christmas Issue December 2010 5
Mesothelioma UK Charitable Trust 1126083 In This IssueFundraising News • Fundraising News • Patient & Carer Day • The Festive SeasonSupport Mesothelioma UKCharitable Trust for: Fundraising The Festive Season 2010 SponsorsA Month ~ £14.166A Week ~ £3,720 To celebrate your fundraising achievements, on the Mesothelioma UK Christmas is nearly upon us and The Mesothelioma UKA Day ~ £675.00 stand at the patient and carer day, we had an overview of the year’s we will be holding our annual Charitable Trust exists to raiseAn Hour ~ £85.00 fundraising trials and tribulations. Tombola stall at the Glenfield funds to support the services provided Hospital main reception on the 7th December. by Mesothelioma UK and any sponsorship,Contact: They included pictures and stories The Mesothelioma UK PedometerJill Lemon Mesothelioma of trekkers who scaled Kilimanjaro, Challenge grants or donations made to the charity support this. To runFundraising & Marketing Manager skydivers throwing themselves out The Pedometer Challenge was met Come along and support us, or if you Mesothelioma UK for 1 year £170,000 is email@example.com of planes, bikers who have cycled with oodles of enthusiasm and we would like to take a turn and help on from one end of the country to the have had many people sign up in a the day please contact us onMesothelioma UK other, walkers, runners, Tombolas, bid to raise their fitness levels as well 0800 169 2409. With grateful thanks to ourFreephone: 0800 169 2409 fetes, cake sales, concerts, both as funds. The Pedometer Challengewww.mesothelioma.uk.com rock and choral and last, but not will be ongoing, so if you would like The festive season is a time when sponsors for 2010 least, quiz nights to mention but a your pedometer pack please ring people get together, and begin to few. All these events have raised freephone 0800 169 2409 and order think of family, friends and loved onesIf you want to sponsor any of our awareness throughout the country as yours. who may no longer be with us or whofundraisers, go to our website and well as much needed funds enabling are living with mesothelioma. You mayclick on the links. The Mick Knighton Mesothelioma Mesothelioma UK to continue their Information about the challenge and decide you would like to honour a vital work. how it helps to support Mesothelioma day during December in celebration, Research Fund has kindly provided UK can be found on the website or or in memory of their life. Throughout a grant of £49,660 to fund the Log on to www. We have been better able to support ring 0800 169 2409. December Mesothelioma UK are mesotheliomaukappealfund Mesothelioma UK Helpline for one year. you with your fundraising initiatives offering celebration memory days .co.uk and “Buy a minute for a with our new fundraising packs, which for £10.00 on the Mesothelioma UK pound”. We thank you for your include leaflets, t-shirts, running vests, The Patient and Carer Day Charitable Trust website. support. Every little helps. water bottles, pins, table cloths, banners, pens and balloons and we I met a number of wonderful The Charitable Trust has Christmas hope to continue expanding. people at the Patient and Carer Cards in stock. Order yours today, 2 Gold Sponsors conference. designs in a pack of 10 @ £4.00 per pack.Do Something Good Today Our aim is to Their inspirational fundraising activities have been a phenomenal success for raise the fundssupport Mesothelioma UK necessary to sustain our first charitable year and we hope that as the charity progresses we canOn behalf of the Charitable Trust, Mesothelioma UK begin to build on our own activities. Silver SponsorsI would like to thank all those, which requires:- We were able to roll out the newincluding our corporate friends who £170,000 per year Mesothelioma UK Patient Informationhave contributed, supported and Leaflets at the conference that thesponsored Mesothelioma UK during Mesothelioma Nurse Action Team2009-2010. Details of all (MNAT) worked very hard togetherI would like to wish you all a sponsorship, donations. to produce and which the Charitable fundraising and Trust were able to fund due to yourvery merry Christmas and a support. Bronze SponsorsHappy New Year. successful grant applications are posted I would like to thank Clive and Gill Jill Lemon on our website Leaney for their support on the day, by distributing leaflets and pins, and www.mesothelioma. encouraging people to take up the Fundraising Manager uk.com Pedometer Challenge.6 Mesothelioma Newsletter - Christmas Issue December 2010 Mesothelioma Newsletter - Christmas Issue December 2010 7
Mesothelioma Patient Support Groups Barrow Asbestos Related Disease Support (BARDS) Tel: 01229 580305 or 01229 430111 For patients with asbestos related disease, their families and carers East & North Hertfordshire Lung Cancer/Mesothelioma Support Group Contact Patricia Swann 01707 328111 Ext: 3319 Elaine Dockree 01438 781217 Provides support to patients/carers East London Mesothelioma Support (ELMS) Freephone Helpline: 0800 8766773 Between 5pm-10pm Support, guidance and information for patients, carers, relatives, friends East Midlands Mesothelioma Support Group (EMMSG) Contact Mesothelioma UK on freephone 0800 169 2409 For those in East Midlands with mesothelioma and their families/carers Hampshire Asbestos Support & Awareness Group (HASAG) Contact Lynne on 07940 328637 or Diane on 07792 543426 For sufferers/families of those with all asbestos related diseases including the bereaved Hands of Time Mesothelioma Support Group Contact Dimbleby Cancer Care on 0207 1885918 For patients/carers Leeds Lung Cancer & Mesothelioma Patient Support (LAMPS) Support Group Contact John White on 0113 2067916 Medway/Swale Lung Cancer/ Mesothelioma Support & Information Group Contact Frances McKay, Macmillan Lung /Mesothelioma Nurse, Medway Maritime Hospital on 01634 825212, Caroline Williams, Macmillan Lung Nurse, Medway Maritime Hospital on 01634 825391 or Pat Cameron, Domiciliary Team Nurse For Lung Cancer/ Mesothelioma patients /carers Mesothelioma Self Help Group Tel: 0191 263 7386 (Mick Knighton Mesothelioma Research Fund) Aims to provide information and support to sufferers and their families Mesothelioma Support Group at Guy’s Hospital, London Contact Rachel Thomas 020 7188 4758 Mesothelioma Support Group at Royal Marsden Hospital, Surrey Contact Natalie Doyle on 0207 352 8171 Ext: 1791 or Sonja Watson on 020 8661 3150 Mesothelioma Support Group at Papworth Hospital, Cambridge Contact Gerry Slade, Mesothelioma Specialist Nurse on 01480 830541 Ext: 4889 For patients/carers Swindon & South West Support Groups Contact Mrs Pat Lewis on 01793 532995 Group for widows/partners of asbestos sufferers Contact Janice Howell on 01793 813616 Group for patients and their partners Contact Maureen Seabrook on 01822 880233 Wives & Widows Group Southend Lung Cancer and Mesothelioma Support Group Contact no 01702 435555 Ext: 6835 Canvey,Basildon and Thurrock Lung Cancer and Mesothelioma Support Group Contact No: 0845 155 3111 Ext: 3168 Email: Jolly.firstname.lastname@example.org, Johanna.email@example.com or Michelle.firstname.lastname@example.org West Hertfordshire Trust Support Group Contact Linda Charalambous on 01923 21701 For all West Hertfordshire Trust lung cancer/mesothelioma pts Wigan and area Lung Cancer /Mesothelioma Support Group Contact Venencia Sibanda, lung cancer specialist nurse, on 01942 822260 For lung cancer and mesothelioma patients8 Mesothelioma Newsletter - Christmas Issue December 2010