mesothelioma uk newsletter spring issue mar 2011
TRANSCRIPT
Mesothelioma UK
Newsletter
The website, re-launched in September in a new, more user friendly format, has, for the last six months, received an average of 1804 hits per month. We circulated 5 newsletters to a total of 1760 people or organisations and our annual patient conference welcomed over 200 delegates.
The first ever accredited educational (degree or masters level) mesothelioma specific module was launched through the Royal Marsden School of Nursing. We published a Mesothelioma Good Practice Guide and the Mesothelioma Nurse Action Team launched the first ever national mesothelioma information pathway. All of this in a year when we became financially independent, relying totally on donations to the Mesothelioma UK Charitable Trust. In 2011 we aim to build on our previous successes. Mesothelioma UK will continue to strengthen relationships with likeminded organisations and I hope to return to the Mesothelioma Applied Research
Foundation International Symposium 23-25th June in Washington DC (www.curemeso.com). It would be nice to have some UK patients and carers with me this year, please do get in touch if you are interested in attending.
We look forward to working with the National Cancer Action Team to ensure mesothelioma information is widely available through the National Pathways and Information Prescriptions initiatives. We are planning a National Mesothelioma Scientific Meeting on 30th September, the day before our patient and carer conference.
We are particularly keen to explore means of establishing Mesothelioma Nursing posts in areas of high incidence or treatment. There is a great deal to be done, so watch this space and please continue to support us.
Spring Issue - March 2011
If you would like to be removed from (or added to) the mailing list, please call freephone 0800 169 2409 email [email protected] or write to: Mesothelioma UK, Hospital Management Offices, Glenfield Hospital, Groby Road, Leicester, LE3 9QP
Save the Dates:Patient/Carer Day • 6thMesotheliomaUKPatient and Carer Day 2011• Saturday1stOctober2011• NovotelLondonStPancras, London For mesothelioma patients, carers, relatives and friends. Email:[email protected]
Action Mesothelioma DayThis year’s Action Mesothelioma Day is on 1st July. To request a copy of the Action Mesothelioma Day Bulletin containing events taking place all over the UK. Email: [email protected] Events or Articles for Next NewsletterIf you have an event you want to publicise or you would like to write an article for our June newsletter please contact us on 0800 169 2409 or email:[email protected]
Patient Information BookletsTo order patient information booklets please call our freephone helpline on 0800 169 2409 or email:[email protected]
Liz Darlison Macmillan Mesothelioma Consultant Nurse
Welcome to our First Newsletter for 2011Last year Mesothelioma UK dealt with 1272 contacts; over half of these were from patients and carers (Patients 174, Carers 479).
If you have an event you would like to publicise or you would like to write an article
for a future newsletter please contact [email protected]
Patients’ Views Wanted
We are particularly keen to obtain the views of patients who have accessed specialist or advanced nursing care within the last twelve months for treatment and/or advice across a wide range of health related issues or disease-specific treatment.
We will be inviting participants to attend focus group meetings which will take place in London and will last no longer than 2 hours (9.30am-11.30am). The focus group meetings will take place on Monday, 21st March and Friday, 1st April 2011 at the Royal Society of Medicine.
The venue is situated at: 1 Wimpole Street, London, W1G 0AE.
If you would like more information about the project please contact Mehreen Chandan or Lynne Currie.
Thank you
01865 [email protected] 020 7647 [email protected]
Patients with Mesothelioma or other types of cancer may often find it difficult to get travel insurance as many insurance companies will regard this as a pre existing condition. Mesothelioma UK can provide a travel pack listing companies who may be willing to insure these patients.
To obtain a travel pack please call 0800 169 2409 or email [email protected]
We are seeking patients’ views and opinions about the care they receive from clinical nurse specialists and nurse consultants, and also their ideas about the best ways of assessing or measuring nurse performance.
Travel Insurance
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Topics Include• Cancerinthe21stCentury:The concept of cancer survivorship. Natalie Doyle, Nurse Consultant, Cancer Rehabilitation. The Royal Marsden NHS Foundation Trust • TheNationalCancerSurvivorship Initiative Test Community: the lived experience. Mary-Anne Lovett, Macmillan Clinical Nurse Specialist and Cancer Survivorship Project Lead, East Kent Hospitals University NHS Foundation Trust • Managingthepsychosocial aspects of cancer such as loss of confidence, self esteem and the negative impact on self identity. Speaker to be confirmed
• Theimpactofcancerand cancer treatments on sexuality. Sue Lennon, Macmillan Urology Nurse Specialist and Psychosexual Therapist. Harrogate and District NHS Foundation Trust. • Adoorwayintobeinganormal person again: physical activity and cancer recovery. Speaker to be confirmed. • Toprovideapastparticipants perspective on Odyssey and explain how activity, challenge, laughter and the outdoors can help survivors regain their zest for life. Price: Conference £125 Saturday 17th September 2011
Odyssey Taster Day For health professionals wishing to refer their patients onto Odyssey courses this is a chance to experience some of the activities enjoyed by the participants on a programme. This day is being offered in conjunction with the conference. Accommodation and meals will be provided on the Friday night at the Odyssey venue near Canterbury plus a full day of activities on the Saturday. Places for Taster Day limited to 20.
Price: Conference and Taster Day £225 Full programme and application form to be circulated shortly.
Life is Magical - Odyssey
Friday 16th September 2011 - Odyssey Project Ltd Cancer Survivorship Conference, Abode Hotel, 30-33 High Street, Canterbury CT1 2RX. This conference is for health care professionals wishing to develop a better understanding of how people living with cancer and beyond can maximize the future.
An insurer’s “last minute” decision not to proceed with the appeal opens the way for hospices across the country to benefit from the ruling, said law firm Irwin Mitchell.
Thousands of claims could now be brought by cash-needy hospices against companies whose former workers are dying from asbestos-related illnesses. Most victims are ex-workers at power stations, shipyards and building sites, where asbestos was prevalent as insulation and a fire-retardant.
The test case involved James Willson, who worked at Deptford power station, south-east London, in the 1950s and fell victim to mesothelioma, an asbestos-related disease which may not appear until 50 years after exposure.
Over 2,000 people a year are currently being diagnosed with the disease.
Last year a High Court judge decided that Foster Wheeler Ltd, the company which employed Mr Willson, should pay all the costs of his care at St Joseph’s Hospice, Hackney, which would otherwise have had to be met out of charity donations.
Mr Willson starting working at the power station in 1951 and was regularly exposed to asbestos while erecting new boilers. More than 50 years later, in 2006, he was diagnosed with mesothelioma. He spent 23 days at the hospice before dying there in March 2007, aged 76.
The engineering company’s insurers, Royal & Sun Alliance, started proceedings to appeal against the ruling. But the appeal was dropped days before it was due to go ahead, said Irwin Mitchell.
Caroline Pinfold, a solicitor with the firm, who specialises in asbestos-related disease, said: “There is no doubt that justice has been done and by withdrawing their appeal the defendants must recognise that this landmark decision is right.”
Ms Pinfold, who represented Mr Willson’s family, added: “This decision is welcomed by the family and other victims of asbestos-related diseases, who rely on palliative care to relieve their suffering.
“It also now provides a legal basis for hospices to be repaid for the tremendously valuable work they do where their care has been needed as a result of someone else’s wrongdoing.”
Foster Wheeler was ordered to pay to St Joseph’s all the care costs for Mr Willson that were funded by charitable donations, as opposed to those met by the NHS. The hospice’s chief executive, Michael Kerin, today welcomed the “last minute” decision to drop the appeal. He said: “We were delighted that the judge (who gave the landmarkruling) recognised that whilst our work is supported by voluntary donations and open to all, there is a financial cost in providing this care.
“It seemed only fair that these costs should be repaid in cases such as this to help us to continue to provide the service for others.
“Despite the delay in payment that their appeal has caused, we welcome this last-minute decision by the defendants to accept the landmark judgment against them which will now pave the way for recovery of much needed costs in other cases.”
An appeal has been dropped against a landmark judgment requiring a company to contribute to the hospice care costs of a former worker it exposed to asbestos, family lawyers said today.
Appeal Dropped in Hospice Care Costs Case
To register your interest please email Aly Purssell: [email protected] or visit www.odyssey.org.uk
Lynne & Mehreen
Mesothelioma UK Patient InformationMesothelioma UK has available a range of patient information booklets including: • WhatisMesothelioma? • ConcernedAboutAsbestos Exposure? • AsbestosandtheDiseases it Causes • RadiotherapyandMesothelioma • SurgeryforMalignant Mesothelioma • MesotheliomaSupport • ActionMesotheliomaDay • TunnelledIndwellingPleural Catheter and various others. These are available in hard copy and also as a downloadable factsheet on our website. Also coming soon we have Choosing the Right Solicitor, Percutaneous Cordotomy and Peritoneal Mesothelioma. To find out more about these booklets and to order copies please call freephone no. 0800 169 2409. Alternatively, an order form is available on our website: www.mesothelioma.uk.com
Please complete and post to the address on the form or email: [email protected] with your order.
We have also recently had printed, with the help of Gerry Slade, Laurence Pengelly and the M-NAT team, a lung pleura diagram pad with tear off sheets to enable health professionals to explain to patients exactly where their disease is located. To request one of these please also call or email Mesothelioma UK.
To find out further what Mesothelioma UK provides please take a look at our website www.mesothelioma.uk.com
We welcome feedback so please feel free to contact us with any suggestions or comments.
Mesothelioma UK
Tracey Heseltine
Mesothelioma in the Midlands - Experiences and Assessments of Support and Treatment
Participants will hear from professionals on a range of issues including current and future treatment, welfare benefits, support available when living with Mesothelioma and accessing justice. The Conference will also give participants an opportunity to compare their experiences with those of others across the Midlands Region and provide an opportunity to discuss and put forward ideas for making improvements.
The Conference is being organised by Asbestos Support West Midlands and the Derbyshire Asbestos Support Team with support from Macmillan Cancer Support and advice from Mesothelioma UK.
In 2007 the Department of Health published the Mesothelioma Framework. The document sought to give advice to the NHS on how to organise services for Mesothelioma patients and improve the quality of care. The conference will give participants an insight into the framework and what it means to them in real terms as well as giving them an opportunity to assess how it is operating across the Midlands.
The central focus of the conference will be those who have experience of living with or supporting someone
with Mesothelioma and there will be plenty of time for informal exchange of experiences as well as the more structured sessions. Experiences of Lung Cancer Nurse Specialists are also welcomed.
Speakers on the day will include Liz Darlison, Consultant Nurse, Mesothelioma UK and John Edwards, Consultant Thoracic Surgeon, as well as representation from the legal profession and the Asbestos Support Groups Forum.
The beautiful singing voice of Hermione Ross, whose father, a singer-songwriter, died of Mesothelioma, will bring the conference to a close.
The conference will take place on Monday 11th April 2011 at Birmingham Voluntary Services Council, 138 Digbeth, Birmingham from 10.00am – 4.30pm. There is a good rail network into Birmingham and a mini-bus will shuttle people to and from the venue.
If you are interested in attending, please contact Doug Jewell, Asbestos Support West Midlands (ASWM) on 0121 6788853 or Joanne Carlin from Derbyshire Asbestos Support Team (DAST) - Tel. 01246 380415.
A one-day Conference is being held to determine personal experiences of those living with or caring for someone with Mesothelioma.
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Late in 2009 I became increasingly aware that I was suffering a shortness of breath. After a visit to my GP I was sent for an x-ray which showed that further investigation was needed. I was admitted to Hinchingbrooke where I was diagnosed with “Suspected Mesothelioma”. Fluid was drained from the right side of my chest and I was discharged to the care of Papworth Hospital.
During the initial consultation at Papworth the Mesothelioma diagnosis was explained and confirmed. Action and treatment discussed: when asked; the consultant gently but clearly explained that I had a cancer called Mesothelioma; and when we enquired further we were told that it was inoperable and progressive.
A year later, after undergoing an indwelling pleural catheter operation - which was used to drain my lung area daily; a course of radiotherapy and two courses of chemotherapy (both of which were curtailed due to a reaction and the second being of “no benefit”) the fluid around my lung diminished and dried up and allowed for the eventual successful removal of the catheter. I am in general good health, although breathlessness is still the main restriction to my mobility.
During the many visits to Papworth we met numerous people. The medical teams looking after us (for me in particular) were very professional and understanding. Also the patients, who had the same or similar problems as I were cheerful and outgoing and we were able to exchange notes of our illness.
A major part to the wellbeing of Mesothelioma suffers and their carers is the support that Papworth Hospital is able to give us. The specialist nursing staff has undauntingly worked to set up Carers’ Group meetings and Patients’ and Carers’
meetings on a regular basis, mostly giving their own time. The aim of the meetings is to make aware the needs and requirements of the patients and carers, exchanging experiences and advice and they are now held monthly at Papworth. More recently a committee consisting of carers, patients and hospital staff under the guidance of Gerry Slade, our Specialist Mesothelioma Nurse, has been formed to: Raise awareness of Mesothelioma and dangers of asbestos, organise fund raising events, raffles and other functions to directly aid the Papworth Mesothelioma group members.
We find these groups and the newly available website are invaluable: They are our lifeline – a bridge between the hospital and home. It is important to know that you are not alone and that other people are going through the same trauma and fears as you.
Without these groups our lives would be much more difficult but as we share our experiences with other patients, carers and family members our fears are diminished. Mesothelioma is a very frightening disease to be diagnosed with and we need all the information we can get especially feedback for our groups.
Our monthly meetings are extremely well attended, usually with a specialist speaker; speaking on such subjects as asbestos, breathlessness, diets, exercising and the many other aspects of Mesothelioma and related health topics. Recently we were fortunate to welcome notable speakers to our Patients and Carers’ meeting including: Liz Darlison Nurse Consultant for Mesothelioma UK and Andrew Lansley, CBE MP; Minister for Health and MP for South Cambridgeshire.
We learnt of a new word in the January of 2010. This word is “Mesothelioma”. We had heard of asbestosis and were vaguely aware of the health dangers of asbestos.
A Patient’s Story Missing Insurance Hinders Compensation
Sadly, because he cannot prove which insurance company covered his employer at the time of exposure, he cannot make a claim for the compensation of which he is clearly entitled.
Due to the long latency period of the disease (usually several decades), insurance records get lost or companies either move or cease to exist and although Government compensation is available in these cases, civil compensation would pay out far more. The last government promised to force insurers to set up a fund of last resort to deal with these claims but this has failed to materialise. Insurance companies argue that this would lead to higher premiums. It has also been argued by the insurance industry that it would be unfair for today’s employers to have to fund compensation for firms that no longer exist.
For the last ten years a voluntary code of practice has been in place that will be replaced by a new Tracing Office in April.
More than half of the enquiries for compensation from Mesothelioma sufferers received in the last year were unsuccessful due to failure to trace insurers, meaning that many people miss out on thousands of pounds in compensation. The figures are contained in the draft annual review of the current Employers Code of Practice (ELCOP) due out soon.
From 1999 it has been compulsory for employers to maintain records for 60 years to try to solve this problem. It remains to be seen whether a new tracing office will mean a better success rate for these claims.
Bob Charman was diagnosed with Mesothelioma last year. It is likely that working with asbestos on construction sites early in his career caused his disease.
David & Linda Sayce
Mavis Nye heard the news that she had contracted mesothelioma from washing her husband’s clothes when he worked in a shipyard.
Through her diary entries, she recounts her feelings and those around her terminal disease. But through bravery and determination, and new treatments, she tackles the “nasty” head on, until a meeting with her Oncologist reveals shocking results.
Read about Mavis Nye’s struggles with this asbestos related disease.
http://www.lulu.com/product/paperback/meso-warrior/14247964
The situation will not improve for many years as Government policy is to leave asbestos in place and manage it until the buildings reach the end of their life. The problem is exacerbated because very few schools are now being refurbished or replaced, and, as the building deteriorate, then so does the asbestos. As an assessment has not been made of the scale of the problem or the risks proportionate resources have not been allocated to train people, so many schools are not equipped to manage their asbestos either effectively or safely. The Guardian article gives a good summary of the present situation. For link to The Guardian article:http://www.guardian.co.uk/education/2010/dec/07/asbestos-school-buildings
For more information on asbestos in schools see: www.asbestosexposureschools.co.uk
Michael Lees
Asbestos in Schools
Most schools contain asbestos and the numbers of teachers, support staff and children dying of mesothelioma continues to relentlessly climb.
Support Mesothelioma UK Charitable Trust for:A Month ~ £14.166A Week ~ £3,720A Day ~ £675.00An Hour ~ £85.00 Contact:Jill Lemon MesotheliomaFundraising & Marketing [email protected] Mesothelioma UK Freephone: 0800 169 2409www.mesothelioma.uk.com If you want to sponsor any of our fundraisers, go to our website and click on the links.
This is a huge undertaking particularly because times are so hard, but we had not reckoned on YOU! Ourwonderful, absolutely fabulous fundraisers. YOU have stepped up to the challenge, YOU have spread the word both far and wide by all the fantastic fundraising events that you have held, took part in, sponsored or organised. You have made us laugh and cry with your stories, blogs and pictures. The support you so selflessly give to the charity is tremendous and because of your support we are able to do so much. We are now able to provide different types of fundraising packs and we hope to expand our range once again this year on the things that we can provide to help you with your events. Mesothelioma UK and the Charitable Trust has launched a new website, distributed our first Christmas cards, joined ‘Just Giving’ and ‘Virgin Giving’ to make fundraising easier, plus we started two annual fundraising events, ‘The Pedometer Challenge’ which can be done anytime throughout the year and ‘Moustaches for Meso in March’...(Details on the website).
At the Patient Carer Day last October, we were able to roll out the new Mesothelioma UK patient information leaflets and the Mesothelioma Good Practice Guide and all these achievements were made possible because of your support.
Our vision is to ensure everyone diagnosed with this disease has the same access to support, care and quality of treatment. The education that Mesothelioma UK provides to healthcare professionals is vital to achieving this.
We had a fantastic 2010; let’s make 2011 even better...
Spring is in the airPut a spring in your step and take up the Pedometer Challenge. We encourage good health and keeping fit and active for all the family, so why don’t you join in and have some fun, send for your pedometer today.
Mesothelioma UK Charitable Trust 1126083
Fundraising News
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 vital services of Mesothelioma UK.
Fundraising
2010 was an eventful year for Mesothelioma UK Charitable Trust. The Charitable Trust’s main aim is to raise funds to support Mesothelioma UK and raise our profile.
In This Issue • 2010Overview• Spring • Moustaches • OurFabFundraisers
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Log on to www.mesotheliomaukappealfund
.co.uk and “Buy a minute for a pound”. We thank you for your
support. Every little helps.
Our aim is to raise the funds
necessary to sustain Mesothelioma UK which requires:-
£170,000 per year Moustaches for Meso in March
Why not get together with your work mates or family members and hold a competition to grow the longest, bushiest, curliest, funniest moustache! Ask your family, friends and colleagues to sponsor and support you, every donation helps.
Ladies, don’t you feel left out, why not have a wear a ‘Moustache to Work Day’! Get the children involved, speak to their teachers and have a ‘Wear a Moustache to School Day’. Asbestos is dangerous, let’s do something about it and get involved...
Here is just a smattering of what our wonderful fundraisers did last year:
Skydives, Treks, Marathons, Runs, Biking, Tombolas, Cake Stalls, Head Shaves, Pedometer Challenge, Moustaches for Meso, Fancy Dress Pub Crawl, Golf Tournament, Charity Donations and many more...
Our Fab Fundraisers
Details of all sponsorship, donations, fundraising and successful grant applications are posted on our website at www.mesothelioma.uk.com
Jill Lemon Fundraising Manager
DO SOMETHING GOOD TODAY
- SUPPORT MESOTHELIOMA
UK
8 Mesothelioma Newsletter - Spring Issue March 2011
Forthcoming EventsMesothelioma: The Next Decade25th March 2011Venue Cymru - LlandudnoDelegate Fee £5.00 payable on the dayContact Katrina London on 0161 838 3059 / 0870 1500 [email protected]
ESTRO InternationalOncology Forum - European Society for Therapeutic Radiology & Oncology8th - 12th May 2011Londonwww.estro-events.org
Mesothelioma Patient/Carer Day17th May 2011Hilton Hotel, Maidstone, KentTel. Frances Mckay on 01634 825212 or Caroline Williams on 01634 825391
Mesothelioma Nurse Action Team Meeting23rd May 2011 [email protected]
ASCO 20113rd - 7th June 2011Chicagohttp://chicago2011.asco.org/ 14th World Conference on Lung Cancer3rd - 7th July 2011 Amsterdamwww.2011worldlungcancer.org
ECCO 16, ESMO 3623rd - 27th Sept 2011Stockholmwww.esmo.org, www.ecco.org.eu
ERS (European Respiratory Society) Annual Congress24th - 28th September 2011Amsterdamwww.ersnet.org
Mesothelioma UK/BTOG Mesothelioma Scientific Study Day 2011Friday 30th September 2011Novotel London St Pancras, London
NCRI Cancer Conference6th - 9th NovemberBT Convention Centre, Liverpoolwww.ncri.org.uk
BTOG Conference 201225th - 27th January 2012Dublinwww.btog.org
The Mesothelioma UK Charitable Trust exists to raise funds to support the services provided by Mesothelioma UK and any sponsorship, grants or donations made to the charity support this. To run Mesothelioma UK for 1 year £170,000 is required.
With grateful thanks to our sponsors for 2010/11
The Mick Knighton Mesothelioma Research Fund has kindly provided a grant of £49,660 to fund the Mesothelioma UK Helpline for one year. Gold Sponsors Silver Sponsors Bronze Sponsors
To order patient information booklets please call our freephone helpline on
0800 169 2409 or email