Mesothelioma uk newsletter spring issue mar 2011


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Mesothelioma uk newsletter spring issue mar 2011

  1. 1. Mesothelioma UKNewsletterSpring Issue - March 2011Save the Dates: Welcome to ourPatient/Carer Day First Newsletter for 2011• 6th Mesothelioma UK Patient and Carer Day 2011 Last year Mesothelioma UK dealt with 1272 contacts; over half of these• Saturday 1st October 2011 were from patients and carers (Patients 174, Carers 479).• Novotel London St Pancras, London The website, re-launched in Foundation International Symposium September in a new, more user 23-25th June in Washington DCFor mesothelioma patients, friendly format, has, for the last six ( It would becarers, relatives and friends. months, received an average of nice to have some UK patients and 1804 hits per month. We circulated 5 carers with me this year, please doEmail: newsletters to a total of 1760 people get in touch if you are interested or organisations and our annual attending. patient conference welcomed overAction Mesothelioma Day 200 delegates. We look forward to working withThis year’s Action Mesothelioma the National Cancer Action Team toDay is on 1st July. To request a The first ever accredited educational ensure mesothelioma informationcopy of the Action Mesothelioma (degree or masters level) is widely available through theDay Bulletin containing events mesothelioma specific module was National Pathways and Informationtaking place all over the UK. launched through the Royal Marsden Prescriptions initiatives. We are School of Nursing. We published a planning a National MesotheliomaEmail: Mesothelioma Good Practice Guide Scientific Meeting on 30th September, and the Mesothelioma Nurse Action the day before our patient and carer Team launched the first ever national conference.Events or Articles for Next mesothelioma information pathway.Newsletter All of this in a year when we became We are particularly keen to exploreIf you have an event you want financially independent, relying totally means of establishing Mesotheliomato publicise or you would like on donations to the Mesothelioma UK Nursing posts in areas of highto write an article for our June Charitable Trust. incidence or treatment. There is anewsletter please contact us on great deal to be done, so watch this0800 169 2409 or email: In 2011 we aim to build on our space and please continue to previous successes. Mesothelioma us. Liz Darlison UK will continue to strengthenPatient Information Booklets relationships with likemindedTo order patient information organisations and I hope to return tobooklets please call our the Mesothelioma Applied Research Macmillan Mesothelioma Consultant Nursefreephone helpline on 0800 1692409 or If you have an event you would like to publicise or you would like to write an article for a future newsletter please contact If you would like to be removed from (or added to) the mailing list, please call freephone 0800 169 2409 email or write to: Mesothelioma UK, Hospital Management Offices, Glenfield Hospital, Groby Road, Leicester, LE3 9QP
  2. 2. Life is Magical - Odyssey Appeal Dropped in Hospice Care Costs Case Mesothelioma UKFriday 16th September 2011 - Odyssey Project Ltd Cancer Survivorship Conference, Abode Hotel, 30-33 An appeal has been dropped against a landmark judgment requiring a Patient InformationHigh Street, Canterbury CT1 2RX. This conference is for health care professionals wishing to develop a company to contribute to the hospice care costs of a former worker itbetter understanding of how people living with cancer and beyond can maximize the future. exposed to asbestos, family lawyers said today. Mesothelioma UK has available a range of patient information booklets including:Topics Include • The impact of cancer and Odyssey Taster Day An insurer’s “last minute” decision not Caroline Pinfold, a solicitor with the • What is Mesothelioma?• Cancer in the 21st Century: The cancer treatments on sexuality. For health professionals wishing to to proceed with the appeal opens the firm, who specialises in asbestos- • Concerned About Asbestos concept of cancer survivorship. Sue Lennon, Macmillan Urology refer their patients onto Odyssey way for hospices across the country related disease, said: “There is no Exposure? Natalie Doyle, Nurse Consultant, Nurse Specialist and Psychosexual courses this is a chance to experience to benefit from the ruling, said law firm doubt that justice has been done • Asbestos and the Diseases Cancer Rehabilitation. The Royal Therapist. Harrogate and District some of the activities enjoyed by the Irwin Mitchell. and by withdrawing their appeal the it Causes Marsden NHS Foundation Trust NHS Foundation Trust. participants on a programme. This defendants must recognise that this • Radiotherapy and Mesothelioma day is being offered in conjunction Thousands of claims could now be landmark decision is right.” • Surgery for Malignant • The National Cancer Survivorship • A doorway into being a normal with the conference. Accommodation brought by cash-needy hospices Mesothelioma Initiative Test Community: the person again: physical activity and meals will be provided on the against companies whose former Ms Pinfold, who represented Mr • Mesothelioma Support lived experience. Mary-Anne and cancer recovery. Speaker to be Friday night at the Odyssey venue workers are dying from asbestos- Willson’s family, added: “This decision • Action Mesothelioma Day Lovett, Macmillan Clinical Nurse confirmed. near Canterbury plus a full day of related illnesses. Most victims are ex- is welcomed by the family and other • Tunnelled Indwelling Pleural Catheter and various others. Specialist and Cancer Survivorship activities on the Saturday. Places for workers at power stations, shipyards victims of asbestos-related diseases, Project Lead, East Kent Hospitals • To provide a past participants Taster Day limited to 20. and building sites, where asbestos who rely on palliative care to relieve These are available in hard copy and University NHS Foundation Trust perspective on Odyssey and was prevalent as insulation and a fire- their suffering. also as a downloadable factsheet on explain how activity, challenge, Price: retardant. our website. Also coming soon we• Managing the psychosocial laughter and the outdoors can help Conference and Taster Day £225 “It also now provides a legal basis have Choosing the Right Solicitor, aspects of cancer such as loss survivors regain their zest for life. The test case involved James for hospices to be repaid for the Percutaneous Cordotomy and of confidence, self esteem and Full programme and application form Willson, who worked at Deptford tremendously valuable work they do Peritoneal Mesothelioma. To find out the negative impact on self identity. Price: Conference £125 to be circulated shortly. power station, south-east London, where their care has been needed more about these booklets and to Speaker to be confirmed Saturday 17th September 2011 in the 1950s and fell victim to as a result of someone else’s order copies please call freephone mesothelioma, an asbestos-related wrongdoing.” no. 0800 169 2409. Alternatively, disease which may not appear until an order form is available on ourTo register your interest please email Aly Purssell: or visit 50 years after exposure. Foster Wheeler was ordered to pay to website: St Joseph’s all the care costs for Mr Over 2,000 people a year are currently Willson that were funded by charitable Please complete and post to the being diagnosed with the disease. donations, as opposed to those met address on the form or email:Patients’ Views Wanted Travel Insurance Last year a High Court judge decided by the NHS. with your order. that Foster Wheeler Ltd, the company The hospice’s chief executive, MichaelWe are seeking patients’ views and opinions about the care they We have also recently had printed, which employed Mr Willson, should Kerin, today welcomed the “last with the help of Gerry Slade,receive from clinical nurse specialists and nurse consultants, and pay all the costs of his care at St minute” decision to drop the appeal.also their ideas about the best ways of assessing or measuring nurse Laurence Pengelly and the M-NAT Joseph’s Hospice, Hackney, which He said: “We were delighted that the team, a lung pleura diagram padperformance. would otherwise have had to be met judge (who gave the landmark with tear off sheets to enable out of charity donations. ruling) recognised that whilst our work health professionals to explainWe are particularly keen to obtain the The venue is situated at: 1 Wimpole is supported by voluntary donations to patients exactly where theirviews of patients who have accessed Street, London, W1G 0AE. Mr Willson starting working at the and open to all, there is a financial disease is located. To request onespecialist or advanced nursing care power station in 1951 and was cost in providing this care. of these please also call or emailwithin the last twelve months for If you would like more information regularly exposed to asbestos while Mesothelioma UK.treatment and/or advice across a about the project please contact Patients with Mesothelioma or other erecting new boilers. More than “It seemed only fair that these costswide range of health related issues or Mehreen Chandan or Lynne Currie. types of cancer may often find it 50 years later, in 2006, he was should be repaid in cases such as this To find out further whatdisease-specific treatment. difficult to get travel insurance as diagnosed with mesothelioma. He to help us to continue to provide the Mesothelioma UK provides please Thank you many insurance companies will spent 23 days at the hospice before service for others. take a look at our website www.We will be inviting participants to regard this as a pre existing condition. dying there in March 2007, aged 76.attend focus group meetings whichwill take place in London and will Lynne & Mehreen Mesothelioma UK can provide a travel pack listing companies who may be The engineering company’s insurers, “Despite the delay in payment that their appeal has caused, we welcome We welcome feedback so please feel free to contact us with anylast no longer than 2 hours (9.30am- willing to insure these patients. Royal & Sun Alliance, started this last-minute decision by the suggestions or comments.11.30am). The focus group meetings 01865 787133 proceedings to appeal against the defendants to accept the landmarkwill take place on Monday, 21st To obtain a travel pack please ruling. But the appeal was dropped judgment against them which will nowMarch and Friday, 1st April 2011at the Royal Society of Medicine. 020 7647 3649 call 0800 169 2409 or email days before it was due to go ahead, pave the way for recovery of much Tracey Heseltine said Irwin Mitchell. needed costs in other cases.” Mesothelioma UK2 Mesothelioma Newsletter - Spring Issue March 2011 Mesothelioma Newsletter - Spring Issue March 2011 3
  3. 3. A Patient’s Story Missing Insurance Mesothelioma in the Midlands - ExperiencesWe learnt of a new word in the January of 2010. This word is Hinders Compensation and Assessments of Support and Treatment“Mesothelioma”. We had heard of asbestosis and were vaguelyaware of the health dangers of asbestos. Bob Charman was diagnosed A one-day Conference is being held to determine personal experiences with Mesothelioma last year. It is of those living with or caring for someone with Mesothelioma.Late in 2009 I became increasingly meetings on a regular basis, mostly likely that working with asbestosaware that I was suffering a shortness giving their own time. The aim of on construction sites early in his Participants will hear from professionals with Mesothelioma and there will beof breath. After a visit to my GP I was the meetings is to make aware career caused his disease. on a range of issues including plenty of time for informal exchangesent for an x-ray which showed that the needs and requirements of the current and future treatment, welfare of experiences as well as the morefurther investigation was needed. patients and carers, exchanging Sadly, because he cannot prove benefits, support available when living structured sessions. Experiences ofI was admitted to Hinchingbrooke experiences and advice and they which insurance company covered with Mesothelioma and accessing Lung Cancer Nurse Specialists are alsowhere I was diagnosed with are now held monthly at Papworth. his employer at the time of exposure, justice. The Conference will also give welcomed.“Suspected Mesothelioma”. Fluid More recently a committee consisting he cannot make a claim for the participants an opportunity to comparewas drained from the right side of my of carers, patients and hospital compensation of which he is clearly their experiences with those of others Speakers on the day will includechest and I was discharged to the staff under the guidance of Gerry entitled. across the Midlands Region and provide an opportunity to discuss and put Liz Darlison, Consultant Nurse, Mesothelioma UK and John Edwards, Asbestos in Schoolscare of Papworth Hospital. Slade, our Specialist Mesothelioma Nurse, has been formed to: Raise Due to the long latency period of the forward ideas for making improvements. Consultant Thoracic Surgeon, as well asDuring the initial consultation at awareness of Mesothelioma and disease (usually several decades), representation from the legal profession Most schools containPapworth the Mesothelioma diagnosis dangers of asbestos, organise fund insurance records get lost or companies The Conference is being organised by and the Asbestos Support Groups asbestos and the numberswas explained and confirmed. Action raising events, raffles and other either move or cease to exist and Asbestos Support West Midlands and Forum. of teachers, support staffand treatment discussed: when functions to directly aid the Papworth although Government compensation the Derbyshire Asbestos Support Team and children dying ofasked; the consultant gently but Mesothelioma group members. is available in these cases, civil with support from Macmillan Cancer The beautiful singing voice of Hermione mesothelioma continues toclearly explained that I had a cancer compensation would pay out far more. Support and advice from Mesothelioma Ross, whose father, a singer-songwriter, relentlessly climb.called Mesothelioma; and when we We find these groups and the newly UK. died of Mesothelioma, will bring theenquired further we were told that it available website are invaluable: They The last government promised to force conference to a close.was inoperable and progressive. are our lifeline – a bridge between the insurers to set up a fund of last resort to In 2007 the Department of Health The situation will not improve for hospital and home. It is important to deal with these claims but this has failed published the Mesothelioma The conference will take place on many years as Government policyA year later, after undergoing an know that you are not alone and that to materialise. Insurance companies Framework. The document sought Monday 11th April 2011 at Birmingham is to leave asbestos in place andindwelling pleural catheter operation other people are going through the argue that this would lead to higher to give advice to the NHS on how to Voluntary Services Council, 138 manage it until the buildings reach- which was used to drain my lung same trauma and fears as you. premiums. It has also been argued by organise services for Mesothelioma Digbeth, Birmingham from 10.00am – the end of their life. The problemarea daily; a course of radiotherapy the insurance industry that it would be patients and improve the quality of care. 4.30pm. There is a good rail network is exacerbated because very fewand two courses of chemotherapy Without these groups our lives unfair for today’s employers to have to The conference will give participants an into Birmingham and a mini-bus will schools are now being refurbished(both of which were curtailed due to would be much more difficult but fund compensation for firms that no insight into the framework and what it shuttle people to and from the venue. or replaced, and, as the buildinga reaction and the second being of as we share our experiences with longer exist. means to them in real terms as well as deteriorate, then so does the“no benefit”) the fluid around my lung other patients, carers and family giving them an opportunity to assess If you are interested in attending, asbestos.diminished and dried up and allowed members our fears are diminished. For the last ten years a voluntary code how it is operating across the Midlands. please contact Doug Jewell, Asbestosfor the eventual successful removal Mesothelioma is a very frightening of practice has been in place that will Support West Midlands (ASWM) on As an assessment has notof the catheter. I am in general good disease to be diagnosed with and we be replaced by a new Tracing Office in The central focus of the conference 0121 6788853 or Joanne Carlin from been made of the scale of thehealth, although breathlessness is still need all the information we can get April. will be those who have experience Derbyshire Asbestos Support Team problem or the risks proportionatethe main restriction to my mobility. especially feedback for our groups. of living with or supporting someone (DAST) - Tel. 01246 380415. resources have not been allocated More than half of the enquiries for to train people, so many schoolsDuring the many visits to Papworth Our monthly meetings are extremely compensation from Mesothelioma are not equipped to managewe met numerous people. The well attended, usually with a specialist sufferers received in the last year were their asbestos either effectively ormedical teams looking after us (for me speaker; speaking on such subjects unsuccessful due to failure to trace Mavis Nye heard the news that she had contracted particular) were very professional as asbestos, breathlessness, diets, insurers, meaning that many people mesothelioma from washing her husband’s clothes whenand understanding. Also the patients, exercising and the many other miss out on thousands of pounds he worked in a shipyard. The Guardian article gives a goodwho had the same or similar problems aspects of Mesothelioma and in compensation. The figures are summary of the present I were cheerful and outgoing and related health topics. Recently we contained in the draft annual review of Through her diary entries, she recounts her feelings andwe were able to exchange notes of were fortunate to welcome notable the current Employers Code of Practice For link to The Guardian article: those around her terminal disease. But through bravery illness. speakers to our Patients and Carers’ (ELCOP) due out soon. and determination, and new treatments, she tackles meeting including: Liz Darlison education/2010/dec/07/ the “nasty” head on, until a meeting with her OncologistA major part to the wellbeing of Nurse Consultant for Mesothelioma From 1999 it has been compulsory for asbestos-school-buildings reveals shocking results.  Mesothelioma suffers and their carers UK and Andrew Lansley, CBE MP; employers to maintain records for 60is the support that Papworth Hospital Minister for Health and MP for South years to try to solve this problem. It For more information on Read about Mavis Nye’s struggles with this asbestosis able to give us. The specialist Cambridgeshire. remains to be seen whether a new asbestos in schools see: www. related disease.nursing staff has undauntingly tracing office will mean a better success to set up Carers’ Group rate for these claims.meetings and Patients’ and Carers’ David & Linda Sayce Michael Lees4 Mesothelioma Newsletter - Spring Issue March 2011 Mesothelioma Newsletter - Spring Issue March 2011 5
  4. 4. Mesothelioma UK Charitable Trust 1126083 In This IssueFundraising News • 2010 Overview • Spring • Moustaches • Our Fab FundraisersSupport Mesothelioma UKCharitable Trust for: Fundraising Our Fab FundraisersA Month ~ £14.166A Week ~ £3,720 2010 was an eventful year for Mesothelioma UK Charitable Trust. The Here is just a smattering of what our wonderful fundraisers did last year:A Day ~ £675.00 Charitable Trust’s main aim is to raise funds to support Mesothelioma UK Skydives, Treks, Marathons, Runs, Biking, Tombolas, Cake Stalls, Head Shaves,An Hour ~ £85.00 and raise our profile. Pedometer Challenge, Moustaches for Meso, Fancy Dress Pub Crawl, Golf Tournament, Charity Donations and many more... This is a huge undertaking particularly At the Patient Carer Day last October,Contact: because times are so hard, but we had we were able to roll out the newJill Lemon Mesothelioma not reckoned on YOU! Our Mesothelioma UK patient informationFundraising & Marketing Manager wonderful, absolutely fabulous fundraisers. leaflets and the Mesothelioma YOU have stepped up to the challenge, Practice Guide and all these achievements YOU have spread the word both far were made possible because of yourMesothelioma UK and wide by all the fantastic fundraising support.Freephone: 0800 169 2409 events that you have held, took part in, sponsored or organised. You have made Our vision is to ensure everyone us laugh and cry with your stories, blogs diagnosed with this disease has theIf you want to sponsor any of our and pictures. The support you so selflessly same access to support, care andfundraisers, go to our website and give to the charity is tremendous and quality of treatment. The education that because of your support we are able to Mesothelioma UK provides to healthcareclick on the links. do so much. professionals is vital to achieving this. We are now able to provide different types We had a fantastic 2010; let’s make Log on to www. of fundraising packs and we hope to 2011 even better... mesotheliomaukappealfund expand our range once again this year on Jill Lemon and “Buy a minute for a the things that we can provide to help you pound”. We thank you for your with your events. Mesothelioma UK and support. Every little helps. the Charitable Trust has launched a new Fundraising Manager website, distributed our first Christmas cards, joined ‘Just Giving’ and ‘Virgin Spring is in the air Giving’ to make fundraising easier, plus Put a spring in your step and take up the we started two annual fundraising events, Pedometer Challenge. We encourage Our aim is to ‘The Pedometer Challenge’ which can be good health and keeping fit and active for raise the funds done anytime throughout the year and all the family, so why don’t you join in and ‘Moustaches for Meso in March’...(Details have some fun, send for your pedometer necessary to sustain on the website). today. Mesothelioma UK which requires:- £170,000 per year Moustaches for Meso in March Come and join us for the second year in this fun event. We at Mesothelioma UK Charitable Trust, challenge anyone to take part and grow your Moustache’ to help raise much needed funds to support the DO vital services of Mesothelioma UK. SOMETHING Why not get together with your work Ladies, don’t you feel left out, why not GOOD TODAY mates or family members and hold a have a wear a ‘Moustache to Work Day’! - SUPPORT competition to grow the longest, bushiest, Get the children involved, speak to their MESOTHELIOMA curliest, funniest moustache! teachers and have a ‘Wear a Moustache to School Day’. UK Ask your family, friends and colleagues to Details of all sponsorship, donations, fundraising and successful grant applications are sponsor and support you, every donation Asbestos is dangerous, let’s do posted on our website at helps. something about it and get involved...6 Mesothelioma Newsletter - Spring Issue March 2011 Mesothelioma Newsletter - Spring Issue March 2011 7
  5. 5. The Mesothelioma UK Charitable Trust exists to raise funds tosupport the services provided by Mesothelioma UK and any Forthcoming Eventssponsorship, grants or donations made to the charity support Mesothelioma: The Next Decadethis. To run Mesothelioma UK for 1 year £170,000 is required. 25th March 2011 Venue Cymru - Llandudno Delegate Fee £5.00 payable on the day With grateful thanks to our Contact Katrina London on 0161 838 3059 / 0870 1500 100 sponsors for 2010/11 ESTRO International Oncology Forum - European Society forThe Mick Knighton Mesothelioma Therapeutic Radiology & OncologyResearch Fund has kindly provided 8th - 12th May 2011 Londona grant of £49,660 to fund the www.estro-events.orgMesothelioma UK Helpline for one year. Mesothelioma Patient/Carer Day 17th May 2011 Hilton Hotel, Maidstone, Kent Tel. Frances Mckay on 01634 825212 or Caroline Williams on 01634 825391Gold Sponsors Mesothelioma Nurse Action Team Meeting 23rd May 2011 Birmingham ASCO 2011 3rd - 7th June 2011 Chicago Sponsors 14th World Conference on Lung Cancer 3rd - 7th July 2011 Amsterdam ECCO 16, ESMO 36 23rd - 27th Sept 2011Bronze Sponsors Stockholm, ERS (European Respiratory Society) Annual Congress 24th - 28th September 2011 Amsterdam Mesothelioma UK/BTOG Mesothelioma Scientific Study Day 2011 Friday 30th September 2011 Novotel London St Pancras, London To order patient information booklets please NCRI Cancer Conference call our freephone helpline on 6th - 9th November 0800 169 2409 BT Convention Centre, Liverpool or email BTOG Conference 2012 25th - 27th January 2012 Dublin www.btog.org8 Mesothelioma Newsletter - Spring Issue March 2011