1. Mesothelioma UK
Newsletter
Spring Issue - March 2011
Save the Dates: Welcome to our
Patient/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 DC
For mesothelioma patients, friendly format, has, for the last six (www.curemeso.com). It would be
carers, 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 do
Email: newsletters to a total of 1760 people get in touch if you are interested in
mesothelioma.uk@uhl-tr.nhs.uk or organisations and our annual attending.
patient conference welcomed over
Action Mesothelioma Day 200 delegates. We look forward to working with
This year’s Action Mesothelioma the National Cancer Action Team to
Day is on 1st July. To request a The first ever accredited educational ensure mesothelioma information
copy of the Action Mesothelioma (degree or masters level) is widely available through the
Day Bulletin containing events mesothelioma specific module was National Pathways and Information
taking place all over the UK. launched through the Royal Marsden Prescriptions initiatives. We are
School of Nursing. We published a planning a National Mesothelioma
Email: Mesothelioma Good Practice Guide Scientific Meeting on 30th September,
mesothelioma.uk@uhl-tr.nhs.uk 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 explore
If you have an event you want financially independent, relying totally means of establishing Mesothelioma
to publicise or you would like on donations to the Mesothelioma UK Nursing posts in areas of high
to write an article for our June Charitable Trust. incidence or treatment. There is a
newsletter please contact us on great deal to be done, so watch this
0800 169 2409 or email: In 2011 we aim to build on our space and please continue to support
mesothelioma.uk@uhl-tr.nhs.uk previous successes. Mesothelioma us.
Liz Darlison
UK will continue to strengthen
Patient Information Booklets relationships with likeminded
To order patient information organisations and I hope to return to
booklets please call our the Mesothelioma Applied Research Macmillan Mesothelioma Consultant Nurse
freephone helpline on 0800 169
2409 or email:
mesothelioma.uk@uhl-tr.nhs.uk
If you have an event you would like to
publicise or you would like to write an article
for a future newsletter please contact
mesothelioma.uk@uhl-tr.nhs.uk
If you would like to be removed from (or added to) the mailing list, please call freephone 0800 169 2409 email mesothelioma.uk@uhl-tr.nhs.uk
or write to: Mesothelioma UK, Hospital Management Offices, Glenfield Hospital, Groby Road, Leicester, LE3 9QP

2. Life is Magical - Odyssey Appeal Dropped in Hospice Care Costs Case Mesothelioma UK
Friday 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 Information
High 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 it
better 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 our
To register your interest please email Aly Purssell: aly@odyssey.org.uk or visit www.odyssey.org.uk
50 years after exposure. Foster Wheeler was ordered to pay to website: www.mesothelioma.uk.com
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. mesothelioma.uk@uhl-tr.nhs.uk with
your order.
that Foster Wheeler Ltd, the company The hospice’s chief executive, Michael
We 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 pad
performance. 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 explain
We are particularly keen to obtain the The venue is situated at: 1 Wimpole is supported by voluntary donations to patients exactly where their
views 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 one
specialist or advanced nursing care power station in 1951 and was cost in providing this care. of these please also call or email
within 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 costs
wide 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 what
disease-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. mesothelioma.uk.com
dying there in March 2007, aged 76.
attend focus group meetings which
will 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 any
last 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 landmark
will take place on Monday, 21st lynne.currie@rcn.org.uk To obtain a travel pack please ruling. But the appeal was dropped judgment against them which will now
March and Friday, 1st April 2011
at the Royal Society of Medicine.
020 7647 3649
mehreen.chandan@rcn.org.uk
call 0800 169 2409 or email
mesothelioma.uk@uhl-tr.nhs.uk
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 UK
2 Mesothelioma Newsletter - Spring Issue March 2011 Mesothelioma Newsletter - Spring Issue March 2011 3

3. A Patient’s Story Missing Insurance Mesothelioma in the Midlands - Experiences
We 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 vaguely
aware 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 asbestos
aware 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 be
of 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 exchange
sent for an x-ray which showed that the needs and requirements of the current and future treatment, welfare of experiences as well as the more
further investigation was needed. patients and carers, exchanging Sadly, because he cannot prove benefits, support available when living structured sessions. Experiences of
I was admitted to Hinchingbrooke experiences and advice and they which insurance company covered with Mesothelioma and accessing Lung Cancer Nurse Specialists are also
where 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 compare
was 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 include
chest 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 Schools
care 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 as
During the initial consultation at awareness of Mesothelioma and disease (usually several decades), representation from the legal profession Most schools contain
Papworth 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 numbers
was 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 staff
and treatment discussed: when functions to directly aid the Papworth although Government compensation the Derbyshire Asbestos Support Team and children dying of
asked; 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 to
clearly 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 the
enquired 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 policy
A 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 and
indwelling 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 problem
area 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 few
and 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 building
a 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, Asbestos
for 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 not
of 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 the
health, 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 proportionate
the 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 schools
During the many visits to Papworth Our monthly meetings are extremely compensation from Mesothelioma are not equipped to manage
we met numerous people. The well attended, usually with a specialist sufferers received in the last year were their asbestos either effectively or
medical 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 safely.
in particular) were very professional as asbestos, breathlessness, diets, insurers, meaning that many people mesothelioma from washing her husband’s clothes when
and 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 good
who had the same or similar problems aspects of Mesothelioma and in compensation. The figures are
summary of the present situation.
as 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 and
we 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 http://www.guardian.co.uk/
our 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 Oncologist
A 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 60
is 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 asbestos
is 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 asbestosexposureschools.co.uk
worked to set up Carers’ Group rate for these claims.
meetings and Patients’ and Carers’ David & Linda Sayce http://www.lulu.com/product/paperback/meso-warrior/14247964
Michael Lees
4 Mesothelioma Newsletter - Spring Issue March 2011 Mesothelioma Newsletter - Spring Issue March 2011 5

4. Mesothelioma UK Charitable Trust 1126083 In This Issue
Fundraising News
• 2010 Overview
• Spring
• Moustaches
• Our Fab Fundraisers
Support Mesothelioma UK
Charitable Trust for:
Fundraising Our Fab Fundraisers
A Month ~ £14.166
A 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 new
Jill Lemon Mesothelioma not reckoned on YOU! Our Mesothelioma UK patient information
Fundraising & Marketing Manager wonderful, absolutely fabulous fundraisers. leaflets and the Mesothelioma Good
jill.lemon@uhl-tr.nhs.uk 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 your
Mesothelioma UK and wide by all the fantastic fundraising support.
Freephone: 0800 169 2409 events that you have held, took part in,
www.mesothelioma.uk.com 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 the
If you want to sponsor any of our and pictures. The support you so selflessly same access to support, care and
fundraisers, 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 healthcare
click 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
.co.uk 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 www.mesothelioma.uk.com
helps. something about it and get involved...
6 Mesothelioma Newsletter - Spring Issue March 2011 Mesothelioma Newsletter - Spring Issue March 2011 7

5. The Mesothelioma UK Charitable Trust exists to raise funds to
support the services provided by Mesothelioma UK and any
Forthcoming Events
sponsorship, grants or donations made to the charity support Mesothelioma: The Next Decade
this. 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 katrina.london@irwinmitchell.com
ESTRO International
Oncology Forum - European Society for
The Mick Knighton Mesothelioma Therapeutic Radiology & Oncology
Research Fund has kindly provided 8th - 12th May 2011
London
a grant of £49,660 to fund the
www.estro-events.org
Mesothelioma 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 825391
Gold Sponsors Mesothelioma Nurse Action Team
Meeting
23rd May 2011 Birmingham
mesothelioma.uk@uhl-tr.nhs.uk
ASCO 2011
3rd - 7th June 2011
Chicago
http://chicago2011.asco.org/
Silver Sponsors
14th World Conference on Lung Cancer
3rd - 7th July 2011
Amsterdam
www.2011worldlungcancer.org
ECCO 16, ESMO 36
23rd - 27th Sept 2011
Bronze Sponsors Stockholm
www.esmo.org, www.ecco.org.eu
ERS (European Respiratory Society)
Annual Congress
24th - 28th September 2011
Amsterdam
www.ersnet.org
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
www.ncri.org.uk
or email BTOG Conference 2012
25th - 27th January 2012
mesothelioma.uk@uhl-tr.nhs.uk Dublin
www.btog.org
8 Mesothelioma Newsletter - Spring Issue March 2011