Mesothelioma UK
Newsletter
Autumn Issue 2015
10th Patient &
Carer Day 2015
Welcome to our Autumn
issue of the newsletter
Date: Friday 2nd October 2015
Registration: 9:30am
Venue: Macdonald Alveston
Manor, Clopton Bridge,
Stratford-upon-Avon,
CV37 7HP
Hard to believe that the summer is almost behind us now and that I have
been working with Mesothelioma UK for just over a year, how time flies.
What a year it’s been for me, I have met and worked with so many lovely
people, supporting a brilliant charity in achieving its goals.
Aims to give mesothelioma patients,
carers and relatives the chance to
meet and share experiences with
others, to give up-to-date, unbiased
information about mesothelioma
and to give patients, carers and
relatives the chance to raise issues
and ask questions.
Patients, Relatives and Friends can attend
free of charge. There is a charge for all other
attendees, please see registration form. Due
to the size of the venue priority will be given
to patients, relatives and friends
The programme for the day will include:
• Understanding trials
• Trials update
• Cordotomy for Pain Control
• Patient stories
• Living Well – the whole person approach
• Asbestos awareness
• Fundraising for MUK– a fundraiser’s story
• The role of the MUK Benefits Adviser
The full programme will be available
on our website. To book a place and
for further information please go to our
website where you can download travel
and accommodation information and a
registration form www.mesothelioma.uk.com
or telephone 0800 169 2409.
Kindly sponsored by
Slater and Gordon Lawyers
Many thanks to all who contribute articles,
we greatly appreciate your input. We
continually receive such positive comments
from our readers and I am sure that there
will be many articles in this edition which will
be of interest to many of you.
Well it has been a very busy summer here at
office, especially with it being peak holiday
time. MUK Leicester Action Mesothelioma
Day took place at Leicester Cathedral on
Friday 3rd July. We were lucky enough
to enjoy a lovely sunny day. The Service
of Reflection was a great success, thank
you to Jill lemon and Debbie Neale for
the hard work put into organising the
event and you can read all about the day
in the article contained within this edition
of the newsletter. I would like to take the
opportunity to thank all of those who
attended and our speakers and to the
Cathedral for hosting and supporting this
important day and making it so special.
We have also been busy organising our 10th
Patient and Carer Day, which will take place
on Friday 2nd October, in Stratford upon
Avon, let’s hope that the weather is kind to
us. The event is booking up quickly and we
urge you to register as soon as possible to
ensure you secure a place both on the day
and your accommodation. Details of how to
register can be found on our website
www.mesothelioma.uk.com and also within
the newsletter. I am sure the day will be very
informative. We will, of course, be launching
our 2015 Christmas Cards; the day
wouldn’t be the same if we didn’t! This year
we will also be holding a raffle with some
fabulous prizes, details will appear on the
website nearer the time. We look forward to
welcoming you at the Alveston Manor Hotel.
I would also like to take this opportunity to
thank Slater and Gordon lawyers for kindly
sponsoring the event.
Mars 2 trial – did you know that
Mesothelioma UK are supporting the
travel cost for patients taking part in this
trial and are required to travel to a hospital
outside of their locality? Please ask your
specialist nurse, trials nurse or consultant
for more information.
Mesothelioma UK now has an information
DVD available titled “Insights and
Experiences”, if you wish to have a copy
please contact our helpline either by email
or telephone. Many thanks to all those who
participated in the making of such a useful
resource. These will be free to patients,
carers and health professionals.
With all best wishes
GhislaineBoyd
Christmas is just around the
corner so don’t forget to order
your Charity Christmas Cards
If you would like to be removed from (or added to) the mailing list for the newsletter, please call
freephone 0800 169 2409, email [email protected] or write to: Mesothelioma UK, Glenfield Hospital, Groby Road, Leicester, LE3 9QP.
Please state whether you would like electronic copy (please supply email address) or hard copy.
Forum Judicial Review Challenge to Court
Fees for Mesothelioma Sufferers
Nurse 11
– Jan Devlin
South West support group mark Action
Mesothelioma Day
On 9 March 2015 the Government enacted legislation to increase court
fees for personal injury claims. For claims over £10,000 court fees are now
levied at 5% of compensation with a ceiling of £10,000. For mesothelioma
sufferers whose average compensation is about £150,000, court fees are
now, on average, £7,500. This represents an increase in court fees of 694%.
My post as a Mesothelioma Nurse
Specialist commenced in May 2015,
it is based at the new Queen Elizabeth
University Hospital in Glasgow and
is the first of its kind in Scotland. The
MacMillan Charitable Trust have kindly
funded the post for 4 days a week
for an initial two- year period while I
continue as a Lung Cancer Clinical
Nurse Specialist for one day per week.
Bristol and Beyond Asbestos Family Support (BBAFS) members gathered
together at Bristol harbour to mark Action Mesothelioma Day on 3rd July
2015. The event was a huge success with over 50 members attending on a
beautifully sunny day to raise awareness of the asbestos-related illness.
The Government justified the astronomic
increase in court fees saying: “It is fair and
proportionate for those who can afford to
pay should contribute more to the costs
of the courts so that access to justice is
preserved, and the cost to the tax payer
is reduced.” Thus, the new fees are to
reduce the overall costs of the court and
tribunal service, which is why they are
described as “enhanced fees”.
For those who arguably cannot afford
to pay such exorbitant fees, the Fee
Remission Order allows those who have
less than £16,000 disposable capital to
benefit from an income sliding scale which
can reduce the fee to nil. However, since
almost all mesothelioma sufferers 2
receive an average lump sum payment
of £16,000 from the Government most
would not be eligible for any fee remission.
For most mesothelioma sufferers the
prospect of paying up to £10,000 up front
in enhanced fees, even if these fees are
recoverable at the end of a case, is such
a daunting prospect that many would
baulk at claiming compensation. For this
reason the Asbestos Victims Support
Groups Forum UK (Forum) challenged
the introduction of enhanced fees by
way of Judicial Review arguing that the
enhanced court fees would inhibit access
to justice for mesothelioma sufferers.
The Government resisted the judicial
challenge arguing that on the basis of
a £16,000 lump sum payment and a
fee order of £10,000, claimants would
have to pay no more than two thirds
of their disposable capital in order to
issue a claim. Yet, at the same time
the Government deemed that it would
be too costly for a commercial entity
with considerable financial resources
to pay more than £10,000 in court fees
for a claim worth £20 million, 0.05% of
disposable capital!
Permission was granted to Judicially
Review the enhanced court fees and
a hearing was set for 23 and 24 July
2015. However, on the 3 July 2015 the
Government agreed to exclude lump
sum payments from the definition of
disposable capital and to pay the full
costs of the Judicial Review. Although
2
a Statutory Instrument has to be laid
before Parliament to effect the exclusion,
the Lord Chancellor has exercised his
discretion to make the exclusion effective
from the 3 July 2015.
Although not all mesothelioma sufferers
will benefit from the exclusion as they
may have personal disposable capital in
excess of the capital threshold, many will
not have to pay any court fees at all. The
judicial challenge forced the Government
to make a significant change to the
Remissions Order which will benefit many
asbestos victims.
This is the third Judicial Review
challenge by the Forum, represented
by Leigh Day solicitors, on behalf of
mesothelioma sufferers in as many years.
The first challenged the Government
consultation which proposed a
mesothelioma pre-action protocol and
fixed costs which would have seriously
disadvantaged mesothelioma claimants.
The Government abandoned those
proposals but determined to proceed with
another part of the consultation which
stood as the review of the temporary
exemption for mesothelioma sufferers
from paying success fees and after the
event insurance in compensation claims.
On the basis of the so-called review
the Government decided to end the
exemption for mesothelioma sufferers.
The second Judicial Review challenge
argued that the review to end the exemption
was unlawful and on the 2 October 2014
after a two-day hearing the judge, William
Davis J, ruled that the Lord Chancellor had
acted unlawfully and that the Government
had not conducted a proper review and that
it must be held again.
It is more than regrettable that
mesothelioma sufferers have had to take
legal action on so many occasions to
protect their right to compensation and
attain access to justice – it is shameful
that they have had to do so.
TonyWhitston
Asbestos Victims Support Groups Forum
www.asbestosforum.org.uk
Mesothelioma Newsletter - Autumn Issue 2015
I started my nursing
career at St James’s
in Leeds before
moving to Glasgow to
train as an RGN at the
Western Infirmary and
RMN at Gartnavel
Royal. In that time
I worked within the
acute medical directorate covering all aspects
of acute medical nursing care as well as acute
psychiatric management.
In 1984 I was appointed as Respiratory Ward
Manager, managing a 33 bed unit at the
Southern General Hospital, Glasgow gaining
experience in the care of the acute respiratory
patient. During this time I took the opportunity to
train to deliver lung cancer chemotherapy at the
Beatson Oncology Centre, Glasgow. With this
training and experience I was able to introduce
an integrated care pathway for the delivery of
chemotherapy within the ward setting. This
allowed me to develop the skills required in
assessing a patient’s physical and emotional
status, past health history, health practices, and
both the patient’s and the family’s knowledge of
the disease and its treatment.
In 2002, I was appointed to the newly created
post of Lung Cancer Clinical Nurse Specialist
at the Southern General Hospital. As well as
the treatment and care of an ever increasing
number of lung cancer patients over these
years, a requirement to address the demand
from pleural cases began to emerge. In the
last four years there has been an increased
demand for the specialisation of the pleural
service which identified the need for a stand
alone post of Mesothelioma Specialist Nurse. A
post I was appointed to in May 2015
My aim is to ensure that all mesothelioma
patients diagnosed in the West of Scotland
receive the information they require and
specialist supports they need to make informed
decisions about their future care.
I am delighted to have joined the Mesothelioma
UK team who have already given me support in
undertaking this new venture.
Sufferers and their
families assembled at
the M-Shed in Bristol
along with those who
have sadly lost family
members to the
illness. After a catch
up over tea, coffee
and cake at the cafe,
the members went
outside to the harbour. Gerry Slade,
Mesothelioma UK Specialist Nurse and BBAFS
chairman, spoke to members about the
importance of raising awareness of the
dangers of asbestos. Support group member
and mesothelioma sufferer, Rob Thompson,
shared with the group his moving and
courageous journey following his diagnosis
with mesothelioma and subsequent treatment.
Rob is a huge inspiration and support to other
members and their families with his positive
spirit and determination to continue to live life
to the full. Rob gave thanks to medical
professionals who are a great support to
sufferers like himself and to his wife, Viv, for her
care and support.
After these thought provoking words, two
mesothelioma sufferers and support group
members, Ann Rogers and Michael Warwick
released doves across the Bristol harbour. The
doves gave a beautiful display as they
disappeared into the distance, signifying hope
for the future.
For further information about Bristol and
Beyond Asbestos Family Support, please
contact Gerry Slade on 07500 121668 or
Sarah Smith on 0117 414 1010. Information
can also be found on our website www.
bristolasbestossupport.co.uk.
Support Group Launch in the North East
Mesothelioma Day
October will see the exciting launch of a new support group for patients and
carers in the northeast of England. The Paul Readhead Asbestos Support
and Awareness Group (PRASAG) will hold its first meeting on Tuesday
6th October. The group will be run by Samantha Cox who has first hand
knowledge of the impact of a mesothelioma diagnosis, having cared for her
father during his illness.
Sam often accompanied her father to his local
support group (HASAG) meetings in Dorset
and was overwhelmed by the support she and
her father received. Her father sadly died in
January, but Sam, who is a trained counsellor
knew she wanted to use her own experiences
to benefit others. I met with Sam after she
called the Mesothelioma UK helpline, along
with Chris Knighton, founder of the Mick
Knighton Mesothelioma Research Fund. At
that very first meeting the idea for a support
group was decided; several meetings, phone
calls and coffees later and PRASAG is ready to
go! Having Chris for support has been
invaluable; guiding us on the do’s and don’ts
from her experience of running self help groups
for over 10 years.
The group will be based in Darlington and will
hopefully be ideally placed for people across
Durham, Darlington, North and South Tees,
although everyone is welcome regardless of
location! We look forward to meeting lots of
new people and making this new venture work
to support people affected by asbestos related
illnesses. Look out for more updates after the
launch in the next newsletter. 6
The first meeting will be held on Tuesday 6th
October from 11am to 1pm at Blackwell
Grange in Darlington.
Contact:
Leah Taylor, Mesothelioma Nurse Specialist
[email protected]
South Yorkshire
Mesothelioma
Support Group
A new Mesothelioma Support
Group starts in South Yorkshire
on 16th September. Anyone with
a mesothelioma diagnosis, along
with their carers, from Sheffield,
Doncaster, Rotherham or Barnsley
are very welcome to come along.
The meetings will include invited speakers
covering areas such as treatments and
trials, complementary and supportive
therapies, welfare rights, legal information
and practical help. This will be followed by
an informal coffee and a chat.
It will be jointly run by Sheffield and
Rotherham Asbestos Group and local
Mesothelioma UK nurse specialist
Helena Stanley.
The meetings will run from 1-3pm,
alternately at Sheffield Quaker Meeting
House, 10 St James St, Sheffield.
S2 2EW and Doncaster CVS, 5/6 Trafford
Court, Doncaster. DN1 1PN.
The first 6 dates are as follows:
• 16/9/15 - Sheffield
• 13/10/15 – Doncaster
• 11/11/15 - Sheffield 14
• 9/12/15 – Doncaster
• 6/1/16 - Sheffield
• 3/2/16 – Doncaster
Book your place for
the Patient and Carer
Day Conference
2nd October 2015
Stratford - Upon-Avon
Mesothelioma Newsletter - Autumn Issue 2015
3
Service of Reflection and Hope for
Leicester Action Mesothelioma Day
The Leicester Service of Reflection was hailed a great success, being
very well attended in excess of 100 attendees. The glorious sunshine
helped to bring out optimism and hope in patients and carers alike. The
cathedral as always is a place for quiet reflection.
Urban Canon, Barry
Naylor on behalf of the
Cathedral welcomed all
attending guests. The
Service of Reflection
and Hope commenced
with Reverend Mark
Burleigh, Master of
Ceremonies introducing
and welcoming Lord Lieutenant, Lady Gretton,
The Right Worshipful Lord Mayor, Councillor Ted
Cassidy and his consort Mrs V J Sharma, the
High Sheriff of Leicestershire Mr Gordon Arthur
and Mrs Janet Arthur, Chairman of LCC David
Snartt and Mrs Joan Snartt, Councillor Peter
Lewis of LCC, Councillor Abdul Osman, LCC
and Councillor Manjula Sood of LCC.
After this the guests were invited to place their
message doves onto the tree of reflection.
Dr Jonathan Bennett,
Respiratory Consultant
spoke on behalf of
University Hospitals
of Leicester to give
an update about the
work the Leicester
team are involved in for
Mesothelioma patients
within Leicestershire, he also spoke about
the pioneering work in research and trials that
Professor Dean Fennell is currently leading and
that Leicester is a Thoracic Centre of Excellence
which was well received by all attending.
Lady Gretton spoke about people living with
mesothelioma and the importance of making
the communities aware of the dangers of
asbestos exposure.
Jill Lemon from
Mesothelioma UK spoke
on behalf of Dr Mick
Peake, Respiratory
Consultant from
UHL and Trustee for
Mesothelioma UK to give
an update on the national
picture of mesothelioma
and the fact that there wasn’t an awful lot to
report this year. Research remains at the forefront
along with clinical trials. He pointed out the
importance for patients to be entered into clinical
trials which will help research in finding a cure.
Leicester remains at the front of mesothelioma
treatment and research, boasting the largest
Multi Disciplinary Team meeting in the country.
Mesothelioma UK, are going from strength to
strength and Jill thanked everybody for their
continued commitment to the work carried out.
Mr David Brown a patient living with
mesothelioma spoke about his personal journey
and about the way he is coping with the disease
and the effects it is having on his family and life.
He is a truly inspirational person whose feisty
character was loved by all. Following David’s
4
talk, Yvonne Bloor,
classical guitarist,
played a beautiful piece
she had composed,
for everyone to reflect
what had been
discussed during
the service.
Joanne Gordon from Derbyshire Asbestos
Support Team kindly read personal poems on
behalf of patient families.
Liz Darlison, Nurse
Consultant for
Mesothelioma UK
spoke about the vital
work Mesothelioma UK
do and how the country
is moving forward with
more research projects
and clinical trials. She
told how Mesothelioma UK are now funding
their first research project and that the charity
now funds 11mesothelioma specialist nurses
around the country and how important it is that
they are in strategic areas to promote research,
trials and support groups.
The Right
Honourable
Lord Mayor,
Ted Cassidy
was the final
speaker, he
also spoke
of how the
Leicestershire
community could support those with
mesothelioma and how we can all take
responsibility to keep ourselves safe by raising
awareness about the dangers of asbestos not
only in industrial areas but in homes, schools
and public areas.
Reverend Mark Burleigh then closed the Service
of Reflection asking everyone to move outside
into the glorious sunshine for the releasing of the
doves where Lady Gretton, the Lord Mayor Ted
Cassidy and patient David Brown participated in
this action.
Everyone then went back into the Cathedral
for tea and cakes, which was jointly funded by
Mesothelioma UK and DAST.
The whole occasion was awe-inspiring and
showed the true optimism of patients and
carers’alike. Mesothelioma UK Charitable Trust
would like thank the Cathedral for supporting
and hosting Action Mesothelioma Day and to
the White Rose Café who kindly served the tea
and cake to all attending in support of Action
Mesothelioma Day.
Jill Lemon & Debbie Neale
Mesothelioma UK
Mesothelioma Newsletter - Autumn Issue 2015
MARS 2 Study
Action on mesothelioma
MARS 2: A study to determine if it is
feasible to recruit into a randomised
trial comparing (extended) pleurectomy
decortication versus no pleurectomy
decortication in the multimodality
management of patients with
malignant pleural mesothelioma.
As part of its mesothelioma research campaign, the British Lung Foundation
(BLF) has teamed up with the British Occupational Hygiene Society’s (BOHS)
breathe freely campaign to promote healthier workplaces.
Research has shown that chemotherapy
can improve the quality and length of life of
people with malignant pleural mesothelioma.
This treatment is the current standard of care
for patients with mesothelioma.
Recently it has been proposed that a lungsparing operation (meaning the lung is not
removed) called “extended pleurectomy
decortication” might be a treatment option
for people with this condition. This lungsparing operation aims to remove the visible
cancer and the hardened and thickened
fibrous outer layer on the outside surface of
the lung (decortication) and to also remove
the pleura or lung lining itself (pleurectomy)
and sometimes an extended procedure is
performed where part or all of the lining of
the heart (pericardium) and diaphragm is
removed.
It is currently unclear whether patients who
have been diagnosed with mesothelioma
should be offered lung-sparing surgery as
well as chemotherapy.
MARS 2 is a study that has been designed
initially to assess if it is feasible to recruit
patients into a study of extended pleurectomy
decortication (surgery group) compared to
no surgery (no surgery group), in patients
with malignant pleural mesothelioma, and
ultimately to determine if the operation can
influence length or quality of life.
The MARS 2 study has received grant
funding from Cancer Research UK and is
being managed by an expert team of doctors
who are experienced in treating patients with
mesothelioma. The study is being undertaken
at hospitals throughout the UK. The study
started recruitment in May 2015 and is
scheduled to finish recruitment in 2017.
If you would like further information about
the MARS 2 study, please either contact the
doctor who is managing your mesothelioma
or the Mesothelioma UK helpline:
Freephone 0800 169 2409
(Mon to Fri 08:30 to 16:30)
Email: [email protected]
N.B. MESO UK are funding travel for
patient’s taking part in the trial, who travel to
hospital outside of their locality.
Mesothelioma is a long-winded word that
many of the general public won’t have
heard of, yet it has the dull ring of
familiarity for those working in trades and
construction. A type of cancer affecting
the lining of the lungs, mesothelioma is
most common among those people who
at one time worked in these industries.
New figures published by the Health and
Safety Executive (HSE) on mesothelioma
mortality for the years 1958 to 2013,
show that the UK continues to have the
worst mortality rates for mesothelioma in
the world – and this has not even peaked
yet. Unless new treatments are found, it
is estimated that 60,000 people will die of
mesothelioma in the UK over the next 30
years. Well-funded research is the only
thing likely to change this harrowing
prognosis. That’s why, for Action
Mesothelioma Day this year, we urgently
called for greater investment in research
- the sooner we have this investment, the
sooner we can start saving lives.
Plumbers, joiners, shipyard workers,
electricians, pipe fitters, sheet metal
workers, painters and decorators,
labourers: these professionals, to name a
few, are all at higher risk of developing
the deadly disease.
This is because the main cause of
mesothelioma is breathing in asbestos
dust. The long-lasting and devastating
damage this lethal fibre would do in
decades to come could not have been
predicted, and consequently asbestos
was widely used until the 1990s in
construction and other industries to
insulate and fireproof buildings.
Many of those affected by mesothelioma
developed the disease just by working in
a building containing loose asbestos, and
even unwittingly exposed their family
members and loved ones to stray
asbestos on their clothing. Mesothelioma
is also more common among those who
were exposed to asbestos while serving
their country in the navy.
While the disease is still little-known
among the general public, this terminal
cancer kills around 2,500 people every
year in the UK. Prognosis is poor and
unfortunately most mesothelioma
patients will die within mere months of
their diagnosis – fewer than one in 10 will
survive three years.
The disease is cruel in its dormancy, only
developing years – sometimes decades
– after the time of the original exposure to
asbestos. Despite the fact that
mesothelioma kills numbers on a par with
well-known cancers, such as myeloma,
the disease is severely underfunded. More
investment into research is essential if we
are to discover a cure or new and effective
treatments for this disease, saving the
thousands of people affected by
mesothelioma as well as providing support
for those caring for them.
The failure to afford mesothelioma
research the same levels of funding as
diseases with comparable mortality rates
is simply unacceptable. Researching vital
new treatments to help those who have
developed the disease is a priority area
for us, but we are also keen to ensure no
one is exposed to asbestos in the first
place – stopping this cancer in its tracks.
While asbestos was banned in the UK in
1999, it is still found today in many
buildings – including homes, schools and
hospitals. Harmless if undisturbed,
asbestos is nevertheless a dormant
danger lurking behind the walls.
The British Lung Foundation feels
passionately about protecting the UK’s
workers from the hazards of asbestos.
That’s why we’re partnered with the
British Occupational Hygiene Society’s
Breathe Freely campaign, which aims to
prevent occupational lung disease
through the implementation of effective
exposure control. By working with the
Breathe Freely campaign and other
supporting organisations, we hope to
promote healthier work places for
construction workers so that no one is
put at risk of developing a lung disease
simply because of their trade.
Dr Penny Woods
Chief Executive of the
British Lung Foundation.
For more information
www.blf.org.uk/Page/mesothelioma
Peritoneal
Mesothelioma Update
For us at Mesothelioma UK, the past
few months have been all about
planning and preparing in relation to
peritoneal mesothelioma. Hopefully we
will soon be able to show some results
from our work behind the scenes.
The Facebook support group should be up
and running in October. Those of you who
have shown an interest will be contacted
when it goes live, but if there is anyone else
with peritoneal mesothelioma out there who
would like to be involved, please let me know.
I am also currently writing a peritoneal
mesothelioma leaflet which is nearly finished,
plus a pocket guide. The pocket guide came
about after a very good suggestion from one
of our contacts, as something that could
be easily carried around and used to inform
people, health care workers included, about
peritoneal mesothelioma. Hopefully it can be
something really practical and useful.
As I write this, it seems like there is a real risk
that funding will be withdrawn in England
for Cytoreductive surgery and Hyperthermic
Intraoperative Chemotherapy, a treatment
that is considered standard treatment for
peritoneal mesothelioma in many other
developed countries. It is a very sad
and troubling situation, but whatever the
outcome, Mesothelioma UK will continue
to campaign for better treatment options
for all patients with mesothelioma including
peritoneal mesothelioma. There was a recent
consultation at NHS England, and we are
waiting for the final outcome from this, but if
you feel like raising the issue, try contacting
your local MP, I have already done so.
If you wish to contact me, please do so at:
[email protected]
Helena Stanley
Mesothelioma Newsletter - Autumn Issue 2015
5
New Trial: GlaxoSmithKline FGF117360
TARGET Trial Summary
This is an ongoing Phase 1b trial investigating the safety, tolerability and
efficacy of an investigational medication called GSK3052230 in patients
with malignant pleural mesothelioma (MPM), and also squamous nonsmall cell lung cancer (sqNSCLC). This medication will be given alongside
chemotherapy according to the disease type you have, which for
Mesothelioma patients would be Pemetrexed and Cisplatin.
Malignant pleural mesothelioma is
cancer of the lung lining occurring
as a consequence of asbestos
exposure. It is an aggressive and fatal
tumour that is still on the increase in
many parts of the world.
We know from research that some
non-small cell lung cancers have a
change to a gene called FGFR1 and
mesotheliomas a change in FGF2.
These changes in the genes tell cancer
cells to divide and grow. GSK3052230
is a biological therapy acquired and
developed by GlaxoSmithKline that
stops the signals from the FGFR1 gene,
essentially stopping the cancer cells
from dividing and growing.
The main objectives of this trial
are to find out:
• The best dose of GSK3052230 to
give with chemotherapy
• How safe it is to give GSK3052230
with chemotherapy
• How well GSK3052230 with
chemotherapy works for non small
cell lung cancer and mesothelioma
in the chest
• What the side effects of GSK3052230
alongside chemotherapy are
• What happens to GSK3052230
in the body
• How it affects quality of life
To determine if you qualify for this
study you will first be asked to read
and sign a consent form and provide
a sample of your cancer to see if you
have the change in the FGFR1 gene.
You must also:
• Have an area of cancer that can be
measured on a scan
• Be well enough to carry out all your
normal activities, apart from heavy
physical work, and be well enough to
be up and about for at least half the
day (performance status 0, 1 or 2)
• Have satisfactory blood test results
• Be willing to use reliable contraception
if there is any chance you or your
partner could become pregnant
• Be at least 18 years old
If you meet all of the entry criteria
you will be given GSK3052230 as
an infusion once per week for 3
consecutive weeks.
6
You will also receive Pemetrexed
and Cisplatin on Day 1 of each
treatment cycle.
As this is a Phase I study, and as such
very few people have previously been
tested with this new medication, the
first few people taking part will have a
low dose of GSK3052230 alongside
chemotherapy. If they don’t have any
serious side effects, the next few people
will have a higher dose of GSK3052230
and so on, until they find the best dose
of GSK3052230 to give. This is called a
dose escalation study.
Throughout the study the researchers
will perform various assessments and
take various samples from you in order
to understand how the medication is
working in your body, with your disease
and also with the other chemotherapy
you are given. Below are just some of
the assessments you would need to
have done:
• A physical examination
• Blood tests
• Heart trace (ECG)
• Heart scan (ECHO)
• CT scan, MRI scan or PET CT scan
• Bone scan
• Urine test
• Breathing tests 10
You shall continue on the study so
long as your disease remains stable
or shows improvement, up until the
designated end date of the study.
This study is looking for approximately
12 eligible subjects across 3 different
locations in the UK. Currently, we have
sites open at Guy’s Hospital (London),
Nottingham University Hospital – City
Campus, and the Leicester Royal
Infirmary. Enrollment is ongoing.
For further details about this study
please use the following link:
https://www.clinicaltrials.gov/ct2/
show/NCT01868022?term=Phase+Ib
+Mesothelioma&rank=3
Mesothelioma Newsletter - Autumn Issue 2015
Due to its long latency period from exposure,
patients may not develop mesothelioma up to
30 to 40 years from exposure. Unfortunately,
once diagnosed the average life expectancy is
9 to 15 months, as no curative treatments are
available for mesothelioma.
Diagnosis of mesothelioma can be challenging
in the absence of pleural fluid, to perform a
thoracoscopy for direct visualisation and biopsy
of the pleura. Computed Tomography (CT) or
Ultrasound (US) guided biopsy of the pleura
are two of the commonest techniques used
in this situation but the diagnostic rate is low.
PET scanning has proved itself a useful tool in
diagnosing and staging lung cancer. It identifies
areas of high metabolic activity, which is a
feature of malignant disease, by highlighting
areas of uptake of the radio labelled glucose
analogue Fluorodeoxyglucose (FDG). We
hypothesise that targeting the CT guided biopsy
to these highlighted areas on PET may increase
the diagnostic yield.
This multi-centre randomised controlled
study will recruit patients from 6 respiratory
departments over a 24 month period or until
78 patients have been recruited. Patients will
be randomised either to receive a PET targeted
biopsy or a standard CT guided biopsy using
an online randomisation tool provided by the
Bristol Clinical Trial Evaluation Unit (CTEU). The
experimental group will undergo a PET scan
which will be reviewed by a local radiologist
to identify the most suitable area for biopsy,
then a CT guided biopsy targeted to the afore
highlighted area. The standard CT group will
have a repeat CT and a biopsy from a site
identified as per the local radiologist. Standard
Operating Procedures (SOP) will be in place to
minimise variation.
The diagnostic yield for the two biopsy methods in
identifying malignancy will be compared using the
chi-squared test for proportions. Final analysis will
occur once all recruited patients have undergone
a second pleural biopsy and a tissue diagnosis
confirmed or 12 months follow-up occurred.
This study will assess whether a PET-CT
guided biopsy is superior to a standard CT
guided biopsy when obtaining pleural tissue in
suspected pleural malignancy, in patients who
have already undergone one non-diagnostic
pleural biopsy.
If this superiority study is proven successful, it
would shorten the patient’s cancer journey and
reduce the number of invasive investigations
they undergo. An early diagnosis may
allow more patients to have life prolonging
chemotherapy that they may not be able to have
at a later stage in disease if they are too unwell.
Mesothelioma patients have a very poor survival
and often some of this time may be spent in
hospital. An early diagnosis would allow patients
earlier access to treatment options.
Victory for the Asbestos Victims Support
Groups Forum UK (the Forum)
The Forum who represent charities dedicated to the support and welfare of
asbestos victims and their families recently won two landmark court cases.
The Forum instructed Harminder Bains of Leigh Day Solicitors to represent
them in each of the cases.
In the Supreme Court case of Coventry and
Others (Respondents) v Lawrence and
Another (Appellants) the Respondents argued
that the scheme for the recovery of no win no
fee insurance premium and success fees
from the losing party in a legal case under the
Access to Justice Act 1999 and associated
costs rules (“the 1999 Act scheme”) was in
breach of the defendants’ rights under the
European Convention on Human Rights. The
Respondents argued that the Claimants
including mesothelioma victims should pay
these costs.
If the case had been lost, it would have
resulted in victims of mesothelioma being at a
financial disadvantage and could mean their
spouse not only losing a partner but seeing
their income slashed. This would have been a
double injustice.
would have fallen outside the scope of those
entitled to benefit from the fee remission
scheme which is capped at £16,000.
The Forum was given permission from the
court to Judicially Review the Government’s
decision. A few days before the hearing in the
Royal Courts of Justice, London, the Lord
Chancellor agreed in a letter to ‘exclude’ from
the definition of ‘disposable capital’
compensation awards made to
mesothelioma sufferers under the PWC Act,
the 2008 Scheme and the Diffuse
Mesothelioma Payment Scheme.
Therefore, this will enable a substantial
number of mesothelioma sufferers to be able
to receive remission of their court issue fee,
therefore allowing sufferers to continue to
have access to justice via the courts.
The case was regarded with such importance
that it was heard before seven Judges
including Lord Neuberger. Five Judges
agreed with the Forum that the 1999 Act
scheme did not constitute a breach of Article
6 and therefore the losing party will continue
to pay the costs of the Success Fee and the
Insurance Premium in mesothelioma cases.
The second legal action was brought after the
Government implemented two pieces of
legislation which would have seen sufferers of
mesothelioma being charged £10,000 or
close to it to commence court proceedings
against negligent employers. Invariably
mesothelioma sufferers recover a ‘lump sum’
payment under the Pneumoconiosis Etc
(Workers’ Compensation) Act, of around
£15,000; that meant that, provided sufferers
had a nominal amount of other capital, they
From left to right: Achas Burin (Counsel),
Tony Whitston (Forum Trustee),
Harminder Bains (Partner, Leigh Day),
Robert Weir QC and Harry Steinberg
(Counsel) at the Supreme Court hearing
For further details contact:
Harminder Bains
Partner, Leigh Day
Tel: 020 7650 1166
Email: [email protected]
NOTE: MESOTHELIOMA UK
INFORMATION DVD IS NOW
AVAILABLE “INSIGHTS &
EXPERIENCES”
FREE FOR PATIENTS, CARERS
AND HEALTH PROFESSIONALS
To obtain a free copy of the above,
please contact us via the Helpline 0800 169 2409
or email www.mesothelioma.co.uk
Supporting
Mesothelioma
Patients and
Families in the
South West
Having moved from Papworth last
October where I was Mesothelioma
UK CNS for the East Anglia Network,
I was not expecting to find myself
starting in the same role for the South
West on April 1st! New faces, new
challenges and hills!!
My main passion has always been to develop
a good support system for mesothelioma
patients and carers. At Papworth along with the
help from Peter Robinson and his wife Sarah,
whose father had mesothelioma, we formed
a vibrant Mesothelioma Support Group. This
remains today as one of the largest and most
successful in the country attracting members
from all over the region to regular monthly
meetings and outings.
Bristol too had a large active support group,
BBAFS (Bristol and Beyond Asbestos Family
Support) so there was a solid base on which
to work and scope for further development.
The “South West” is a large geographical area
to cover and the main problem seemed to be,
how to reach out further and support those in
the areas away from Bristol. After meeting with
several nurses and patients across the region,
we decided to form not one, but two support
groups each being held monthly, one to the
north of the region – near Stroud in a place
called Whitminster and the other near Cheddar,
at Axbridge These groups will hopefully come
together for important dates like the Christmas
Lunch! All are welcome so please visit our
website for more details of these meetings;
www.www.bristolasbestossupport.co.uk
It’s still early days for me in this post, but if you
are reading this and live not far away – please
do get in contact and come and meet me at
one of the group meetings!
Gerry Slade
Tel 07500 121668 or email [email protected]
Mesothelioma Newsletter - Autumn Issue 2015
7
Mesothelioma – My Story
Mesothelioma - a word I had never heard of until my visit to Norwich and Norfolk hospital back in Sept 5th 2014.
My wife Valerie and I had come back from France after a touring holiday in our motor home for 5 weeks. We had
done plenty of walking, cycling and swimming. I was feeling pretty good with life and looking forward to starting
a major loft conversation on our bungalow.
I started work by removing a studwork wall
but developed a cough and some shortage
of breath. I put this down to our daughter
and her family had visited us the previous
week and all had heavy colds. The shortage
of breath got worse and I was not eating my
usual intake. It was a Friday and I had to rest
on the bed after some physical work and
my wife said to me I think you should ring
the health centre and see if you can see a
doctor before the weekend arrives. I made
the call and a GP returned my call and
asked me to come down immediately. I was
taken to their emergency room and
diagnosed with an acute lung infection
possibly pleurisy and then went straight to
Cromer hospital for a chest X ray. There was
no waiting it was straight in, but the
radiologist asked me after to wait in the
waiting room. She called us in and said she
was unhappy with the scan and had made
arrangements for me to go directly to the
AMU at Norwich Hospital where they were
waiting for me.
I did all the driving that day and still not
thinking it was anything serious as we
arrived at the hospital. They were expecting
us and I was accessed by a thoracic doctor
who told me my right lung was being
swamped by fluid between the two lung
linings. I was asked what my profession was
before I retired in 2007. I was and still am a
multi skilled Technician but served an
apprenticeship as an electrician. I was then
asked if had been in contact with asbestos,
then the penny dropped. I knew asbestos
was bad for your lungs and had heard of
asbestosis but not mesothelioma. I was told
they needed to drain this fluid from my lung
and was I happy that a trainee doctor could
do the procedure under supervision. It was
not a situation that I would wish to repeat as
the conversation went “what if I puncture
the liver” during the drain being inserted. It
went well and within a short period about 2
litres of fluid was drained and my cough
ceased. I was then admitted and taken to a
thoracic ward. I know my wife was very
worried at this stage probably more than
me. During a period of 7 days on the ward
with various tests and samples taken for
biopsy, the results had come back from the
Laboratory. It was Thursday 11th
September evening when the Thoracic team
arrived at my bedside to give me the news
but wanted my wife there. She was at home
25 miles away but I wanted to know and I
would tell her. So we all went to an
unoccupied day room where I was told I
8
had mesothelioma an incurable terminal
cancer of the lung pleura. Yes it was still a
shock but I had done plenty of reading of
the literature that was available on the ward
and knew it was serious. Obviously the next
question was what is the prognosis. I was
told I had 6 to 18 months to live. The team
were very supportive to me and I was left
with the ward sister whom was of great
comfort to me. I then called my wife and my
son and daughter it was the most traumatic
time of my 68 years on this planet. The next
day a talc was injected though the drain
tube to stick the pleura together to stop the
fluid build up ((pleurodesis). I was
discharged from hospital Sunday 14th Sept.
Wednesday 17th Sept there was meeting to
discuss what treatment would be decided
upon, I don’t know if a surgeon was
present. It was decided that I was eligible for
chemotherapy. It took 2 weeks before I
could see the oncologist. He told me that
my cancer was terminal and with the
Chemo I could expect 6 to18 months to live.
It then took a further 4 weeks before
treatment started only after telephone calls
asking for a date and me pointing out it is
now 6 weeks since their meeting. I started
my chemotherapy treatment on Thursday
30th October 2014 with a Folic acid
injection and blood test. My first Chemo
treatment was 5th November with
Carboplatin and it would be the first of 4
treatments 3 weeks apart. I think the side
effects from the chemo I was fortunate I was
never really disabled. However nausea,
hiccups, constipation, heartburn, hair
thinning, sore eyes, was an issue but I never
really suffered from fatigue and kept really
active. I decided to carry on with my loft
conversion, I found my tools laid where I had
left them, that I found upsetting. My brother
(twin) a retired builder came and helped me
with the work. There were periods where I
would sit and watch him work when I ran
out of puff. Having this project kept me from
having black days and a sense of purpose. I
have always had a project all my life it keeps
your mind active and how to plan the job
where to buy materials at the best price. I
finished my 4th Chemo on 7th January
2015. Christmas was not good; we decided
not to have all our family for Christmas as for
the risk of infection, cold etc with my
immune system very low. We missed this
family time together.
So another year had started and Friday
January 16th I had a CT scan in a mobile
Mesothelioma Newsletter - Autumn Issue 2015
unit. The Chemo unit and the radiology
department at Norwich is bursting at the
seams. I had a meeting with the Oncologist
on the 28th Jan with my wife, we waited
with trepidation. He showed us the scan
and said the tumours had shrunk to virtually
nothing and would not want to see me for 3
months. It was news worth waiting for, I had
responded to the Chemo very well. At this
meeting I asked if was possible to be
referred to Papworth Hospital to see a
thoracic surgeon who specialises in surgery
for lung cancer. There was no problem and
he and his secretary organised it.
This change of thinking on my part came
from my daughter Joanne who had done a
lot of research and found Mesothelioma UK.
I called Mesothelioma UK and had a long
conversation and the nurse confirmed that
because my health was so good and my
fitness levels high I might be eligible for lung
surgery to remove as much of the tumours
as possible. This was how I found the
surgeon and had a consultation with him on
25th Feb where he had a copy of a recent
CT scan I had at Norwich. He explained to
me that because the Chemo had shrunk the
tumours and my present health was good
he would perform a pleurectomy with
decortication. This is the removal of the lung
linings and scraping the tumours off the lung.
It would be major surgery that would not be
curative but still palliative. I had made up my
mind before I met the surgeon that I would
go ahead with surgery and a date was set
for 13th May. As there was a window of
opportunity and my oxygen levels were high
so we took a long awaited vacation in Spain
for 2 weeks flying down to Andalucía.
On the 15th April we visited Papworth for
the pre med blood tests, ECG, etc and met
the team where the procedure was
explained including pain management. We
left with plenty of reading material. After our
holiday I carried out many tasks around the
bungalow as I knew after the surgery, I
would not be doing any physical work for a
few weeks. My wife and I arrived at
Papworth on the afternoon of May 12th and
checked in at the ward. After my
assessments I managed to sleep that night.
Early next morning after a shower with
special soap I was wheeled down to the
theatre. Unfortunately a serious heart patient
took my place and I was wheeled back to
the ward for a 2 hour wait , I was taken back
to the theatre where the team inserted an
epidural before the anaesthetist put me to
sleep. The operation took between 2 to 3
hours and I woke up in the recovery room.
Back on the ward after 2 hours the
physiotherapist came and we went for a
short walk still connected to the terminal via
drains and drips etc, amazing and relief for
me that the operation was over. The next
few days I suffered bad nausea and
sickness due to the amount of pain relief I
was taking. But daily walks with the
physiotherapist and by myself after the
drains were removed. After 6 days I was
home and started my daily walks to improve
my lung capacity. I managed to walk further
each day. The one thing I found very tiring
was showering in the morning, I would lay
on the bed for 30 minutes after to recover,
and then start my day.
I finally made a decision to apply for a
disabled badge but I still felt a fraud as I had
improved my fitness and was continuing
with my building work. It was sent back to
me in a few days the 12 word Mesothelioma
on the application form made it almost
automatic .I use it mainly at hospital
appointments it helps with parking. I
stopped taking pain relief although still with
some pain, my nausea subsided and I
started to eat much better. My recovery has
been good although sensations and sharp
pains in the chest cavity remind me of the
major surgery I have had. I know the surgery
was palliative and a recent scan has shown
some thickening of the pleura that could not
be removed. I have a window now before
my next scan in October. My building work
is now finished and I am so pleased with the
outcome. The daily work project has been
good for me, no sitting around and
pondering the future.
A NEW SUPPORT
GROUP BEGINS
IN MANCHESTER!!
LIVING WELL WITH
MESOTHELIOMA
PATIENT AND
CARER SUPPORT
GROUP!!
From October there will be a new mesothelioma patient and carer support
group in Manchester! Join us on the first Monday of every month at
Cross Street Chapel, Cross Street, Manchester, M2 1NL. The Support
Group will meet from 1.30 to 3.30 pm and will be supported by the
Greater Manchester Asbestos Victims Support Group. (GMAVSG)
The support group will be an informal, social
event where patients and their carers can
benefit from networking and peer support.
Each meeting will have an informative
session relating to mesothelioma.
Hospices provide invaluable assistance and support to people suffering with
mesothelioma and other asbestos related illnesses. They are usually run as
independent charities (charitable trust) and receive little or no funding from the
NHS or local authorities. Many rely on donations and in a tough economic
climate hospices are finding it increasingly difficult to raise the money that they
need to continue their work and meet local community needs.
It is possible to help hospices recover the
cost of the in-patient and home/community
care that they provide. This recoverable
from the insurers/former employers and
other organisations held responsible for
causing the mesothelioma or other asbestos
related illness as part of a civil claim for
compensation. A hospice cannot make a
claim on its own and the claim must form
part of a civil compensation claim.
I hope my story will be of help to new
patients who are given the standard
prognosis of 6 to 18 month to live. We are
all different and there are other treatments
available so do your research. As usual it is
always a postcode lottery and I am lucky to
live only 2 hours from Papworth. Without the
help of Liz Darlison and her team at
Mesothelioma UK and the internet and not
forgetting my daughter Jo, I would have
accepted the prognosis.
In order to make a claim the cost of the
hospice care will be included within the
civil compensation claim. The hospice
will generally need to provide a letter or
statement from a member of the hospice’s
senior management giving details of:
Norfolk
GMAVSG on 0161 636 7555 or
Lorraine Creech, Mesothelioma Clinical
Nurse Specialist on 0161 291 5320
The recovery of hospice costs in a civil claim
My wife and I discussed buying another
smaller motor home. We found the model
we wanted and just bought it. We have
been down to the Cotswolds and to
Hampshire to see our Son and family. It was
an opportunity to shake it down and fix any
problems. We are now planning a trip to
Andalucía in Spain via France. We will take
our time and will be back in October. Maybe
this will be our last adventure who knows.
John Smith
For more information please contact:
If a successful civil claim is made, a
settlement figure will be agreed or an
amount awarded by the court. Usually
the figure awarded to the hospice will be
stated separately. The court usually directs
the recoverable sum be paid direct to the
hospice and this amount will be returned to
the hospice upon conclusion of the claim.
The inclusion of a claim for hospice care
will not reduce the compensation that the
patient is entitled to receive but the recovery
of the cost will help the hospice continue
the valuable services that they provide to
patients diagnosed with mesothelioma and
other illnesses.
• All admission and discharge dates
for the patient.
• A breakdown of the cost of care provided
during each admission or home care.
• The percentage of the hospices’ funding
from charitable donations.
Most of our clients and their families are
greatly appreciative of the care that their
loved ones receive from their local hospice.
It means a lot to them that they are able
to reclaim this compensation on behalf of
the hospice to help the hospice continue
its work.
The hospice may also be asked to provide
copies of accounts.
Charlotte Osmond & Annabelle Neilson
Associate Solicitors. Boyes Turner LLP
Mesothelioma Newsletter - Autumn Issue 2015
9
A Call For Long Term Investment Into
Mesothelioma Research Is Made In Wales!
Brian’s Update from the Houses,
Politics and Meso in Brief
On Wednesday 1st July 2015, Assembly Members (AMs), healthcare professionals,
Union officials, legal experts and third sector representatives were invited to an event
held at the National Assembly for Wales, kindly sponsored by Mick Antoniw (AM).
Lord Alton of Liverpool who took on the work of the late Paul Coggles MP
last year and who was then successful in pushing through the Mesothelioma
Bill 2014 in both Houses, has re-introduced his Amendment Bill in the Lord’s.
The aim was to highlight the incidence of
Mesothelioma in Wales and call for long term
investment into Mesothelioma research and
improved treatments and care for its victims.
As guests assembled at the Senedd, Mick
Antoniw (AM) opened the event highlighting
the need for awareness and research, also
showing his support for the development of
a Mesothelioma Charter for Wales. His hope
that his Asbestos (Recovery of Medical
Costs) Wales Bill could be resurrected in the
future was also announced which he said
could potentially help with this campaign if
approved. Such is the significance of the
issue that Deputy Minister for Health,
Vaughan Gething made time to show his
support on the day, reminding those present
that the number of Mesothelioma cases is in
fact rising. Mike Payne (Political Officer GMB)
gave a moving account of his own exposure
and talked about the asbestos legacy in
Wales and Dr Jason Lester (Consultant
The amendment which failed in the
Commons in July 2014 by seven votes,
was briefly re-introduced by Tony Kane
MP but fell just before Parliament was
prorogued, running out of time prior to
the recent election. The Amendment Bill
is to establish a levy on active insurance
companies to provide for compensation
for victims but also and importantly
funding for research into a cure for
Mesothelioma.
Oncologist) delivered
an excellent
presentation
highlighting the top
research priorities as
identified in the
James Lind Alliance
(JLA) report and
updated on current
trials. Lorna Johns of
Asbestos Awareness
& Support Cymru
(AASC) then
highlighted the need
for additional support
for Mesothelioma
patients and their
families in Wales and
read out a powerful statement written
by Vernon Jenkins, sharing his own
experience of living with Mesothelioma
at the age of 56.
On 2nd June David Alton re-introduced
his Amendment Bill in the Lord’s at first
reading. The Bill was successful in going
to second reading in the upper chamber
at a date to be determined.
This event was a precursor to Action
Mesothelioma Day in Wales held with
the intention of raising awareness in the
political arena.
Rays Of Sun, Shine On Symbols of Hope and Reflection
on Action Mesothelioma Day 2015 in Wales!
Over 80 guests joined together at the National Museum of Wales on Action Mesothelioma Day this year. After
enjoying some free time at the Museum, families who have been affected by asbestos exposure came together from
various parts of Wales, some having travelled 100 miles to learn more about the JLA research priorities and
the availability of support for those touched by Mesothelioma in Wales.
Guests were welcomed by Jo Stevens
(MP Cardiff Central) who opened the event
showing her commitment to the cause.
Following brief presentations and updates,
families then gathered outside by the
fountains at Civic Offices for a reading and
a moment of Reflection.
After remembering the impact
Mesothelioma has on our lives and the
lives of others, Hope that research will
continue and that treatments and care will
improve for Mesothelioma victims in the
future was shared.
As the sun shone, the two doves
representing Hope and Reflection flew into
the blue sky above and families were then
invited to return to the Museum for a
delectable Afternoon Tea in relaxed and
informal surroundings. As families came
together socially, new friendships were
formed, confirming that those touched by
Mesothelioma are not alone.
10
Prior to the making of regulations the
Secretary of State will be required to
consult with Insurers, Medical Charities
such as Mesothelioma UK, Research
Foundations and others with an interest
in the Mesothelioma debate. The
Amendment Bill if given royal assent,
will be enacted in England, Scotland,
Wales and N. Ireland. The Bill has a
further nine stages of debate to go in
both Houses before it once again reaches
a Commons vote.
A commemorative
pin badge was
given to each guest
to mark the
occasion and to
remind others that
Hope continues and
the impact of
Mesothelioma will
never be forgotten.
Special thanks to all
who supported
Action
Mesothelioma Day
in Wales this year
and to the sponsors
(Thompsons
Solicitors, Slater & Gordon, NewLaw,
Novum Law, Simpson Millar, Withyking,
Boyes Turner and Hugh James) who made
it possible and to Naomi Horne MesoUK
Specialist Nurse and the Working Group
who helped to plan these special events.
Mesothelioma Newsletter - Autumn Issue 2015
The new Bill will amend the 2014
Act as follows. The regulations must
provide for a levy of 2% of insurance
premiums received - to provide for
compensation payments and include
for a research supplement. The levy will
be a percentage of insurance premiums
charged and will be funded by the
insurance industry. To date this has been
a voluntary condition with only two major
insurers providing funding on a voluntary
basis. The residual levy will be distributed
by way of grants and other financial
assistance to researchers majoring in
Mesothelioma issues.
For more information about events in
Wales and support services, visit
www.a-a-s-c.org.uk or call Asbestos
Awareness & Support Cymru (AASC)
on 02920 363550 or email
[email protected]
Additional information since June, 2015 :
(1) Lord Alton is asking for a 3% levy in
this new amendment, an increase
of 1% on the previously suggested
fig. The previous amendment fell
because of the intervention of the
general election. This increase is
based on revised figs. that upwards
of 50 - 60K persons will succumb
to mesothelioma within the next 10
years. (source HM. Govt. statistics)
(2)The current compensation fund
(funded by the taxpayer) is
administered by the DWP on behalf
of the Treasury. This resource applies
where an applicant is unable to trace
his/her employer/and or insurer.
This fund currently pays out (on
successful claims) approx. 80%
compensation of current successful
litigant claims. (claims through the
Court system)
(3)Under the present voluntary levy
scheme adopted by the last
government only 2 of 116 insurance
companies contacted by the
Sec. of State have contributed to
the voluntary levy, a sum equal
to approx. one million pounds in
total. A 3%. levy ( backed up by an
act of parliament) and of the total
amount collected by all insurers in
the Employer Liability field (policies)
would provide a fund of 3% of
approximately £27 billion in any one
year. An enormous difference.
As the advert says “You do the maths!!!”
Brian Victor Chamen-Wallis
Ambassador
Mesothelioma UK Charitable Trust
THE ASBESTOS
VICTIMS CHARTER
FOR JUSTICE
In the UK in 2015 more people will
die of asbestos related disease
than will be killed on the roads.
Every year the number of people
affected continues to rise.
Asbestos remains the single
biggest cause of work related
deaths. The people affected are
suffering through no fault of their
own and we believe this country
owes a debt of justice to asbestos
victims and their families.
That is why we are proud to
support the Charter for Justice.
We believe these changes will
make a real difference and we
hope you can support them too.
• We believe in Welfare Justice
• We believe in a fair
compensation system
• We believe in the right to
decent medical treatment
• We believe in properly
resourced medical research
• We believe in preventing
future tragedies
DON’T FORGET TO SUPPORT
THE CHARTER FOR JUSTICE
AND RETURN YOUR FORM TO
THE ASBESTOS SUPPORT
GROUPS FORUM UK,
138 DIGBETH,
BIRMINGHAM, B5 6DR OR
EMAIL [email protected]
Mesothelioma Newsletter - Autumn Issue 2015
11
Mesothelioma UK Charitable Trust 1126083
Fundraising News
Well the summer came in fits and starts
and never really got off to boil, lots of
cloudy grey skies followed by more
cloudy grey skies and all we can hope
for is an Indian Summer! But has this
put a grey cloud over our wonderful
fundraisers, well I can tell you it hasn’t.
They’ve been busier
than ever, running
marathons, climbing
mountains, cycling
mile upon mile,
skydiving holding
coffee mornings, bake
off’s, charity sales,
quiz’s and a whole lot
more. What would we
do without you, the
support our wonderful
fundraisers give is just amazing and we love to hear
about your escapades. So if you are taking part in
or holding an event please let us know, we can help
support you with our fundraising materials, we can
also add you to the website to help promote your
event and we can link to your giving page. Don’t
forget to send in your stories and pictures for the
newsletter, that way others can see what’s going on
and maybe inspired to try something themselves,
every little helps and no amount is too small.
Because of all our wonderful committed
fundraisers, supporters and sponsors, this
year so far has been just fabulous, the charity
continues to grow steadily meeting our aims and
objectives with more specialist mesothelioma
nurses joining the team and our new benefits
advisor Caroline Barry, who is now in
Mesothelioma UK’s office 3 days a week.
We are here to support you every step of the
way and if you should need any benefits advice
you can call Caroline or if you have queries
about your cancer journey, treatments, trials
or you just have a question, then give our
helpline co-coordinator Debbie a call. They both
can be contacted on our free phone helpline
0800 169 2409 or if you prefer you can email
us at [email protected]
With your help we can make a difference to
those living with mesothelioma. Thank you for
your continued support.
Jill Lemon
Fundraising & Marketing Manager
Moore Blatch Solicitors
- Action Mesothelioma Day
Afternoon Tea
Staff at the Richmond office of Moore Blatch solicitors
held an Afternoon Tea Event to commemorate Action
Mesothelioma Day, which took place on 3rd July 2015.
The event aimed to raise awareness of the condition, as
well as remembering those that had sadly lost their lives through asbestos exposure. The
Moore Blatch asbestos-related disease team, which includes Michael Osborne, Nicky
Howe and Eman Hassan organised the afternoon’s events.
The team, which works closely with clients that have
been wrongly exposed to asbestos and their families,
is very aware of the devastating effects of the condition
and the support required to help families cope with a
diagnosis. The afternoon consisted of cakes, scones
and sandwiches, a variety teas and a game of Bingo.
Just over £258.00 was raised on the day and all
proceeds will be donated to Mesothelioma UK.
Brenda Hayden in memory of Alan Hayden
We raised £1,000.00 after having a beautiful one
year memorial for my husband Alan Hayden on
a boat in Henley on Thames with 87 family and
friends. We released the balloons across the sky
and it looked spectacular. We also had cup cakes
with a picture of Alan on each one. It was a very
special day and enjoyed by all. Brenda Hayden
Hayley Pattrick
“On Sunday 5th July 15, I held a charity tea party In memory of my
dad - Alec Wright. In Oct it will be 2 years since we lost dad, some
days it feels like he hasn’t gone at all and some days the heart ache of
missing him is unbearable. He was 62 when we lost him and he was
very young fit and well, so it was a great shock to us all when he got
diagnosed with Mesothelioma in Oct 2012. After a brave courageous
fight, Mesothelioma beat him exactly a year later. My dad had a brilliant
sense of humour and had great taste in music and a great love for Tottenham Hotspur. I have
found comfort since he has been gone of watching all of his DVD’s of Fawlty Towers and Monty
Python and listening to his CD’s of Fleetwood Mac and Rod Stewart. I am also finding it helpful
for me to fully support Mesothelioma UK. I try to personally fund raise as much as possible and
I have placed charity pots in local pubs and petrol garages around my local area. I now need to
think about what I will be doing next year for the Mesothelioma Awareness Day in July!!”
Mesothelioma UK • Freephone 0800 169 2409 • www.mesothelioma.uk.com
Details of all sponsorship, donations, fundraising and successful grant applications are posted on our website
12
Mesothelioma Newsletter - Autumn Issue 2015
Tim Argyle Cycling to Skegness
“In August 2013 I lost my dad to Mesothelioma. At the
time of my dad being diagnosed I knew little or nothing
about this cancer related disease. Knowing the outcome
that this terrible cancer has I desperately wanted to try
and give something back to the charity that had tried to
help my dad and our family, not only come to understand
this disease but try and prolong the inevitable.
It took me a year to
decide what I
wanted to do, after
much feedback and
many conversations
with friends the
decision was made
that we would ride
from Leicester to
Skegness.....well Glenfield to Skegness. So I set
about asking the question again of who wants
to ride with me? The response from my family
and friends was amazing, mainly due to them
knowing my dad Geoff and the big character
that he was, once met rarely forgotten! Since
his death it has become apparent that many
have a favourite story or memory of him which
has become a talking point through people
making donations to the just giving page, often
putting a few words about him. Over the 7
months since I proposed the question I had a
strong team of 21 riders many whom many
hadn’t ridden a bike since their youth, but they
saw the cycling bug pretty much take up most
of their lives. There was early morning weekend
winter rides, evening rides and we saw 50, 60,
70 and even 100mile rides completed in
preparation for the event. The commitment from
these riders has been unbelievable.
20th June of this year
fast approached and
the 7 months of
organising quickly
came upon us. The
just giving page had
just ticked over to
£6000 that morning
£4000 more than the
target I had originally set which blew me away.
We arranged to meet at The Forge a local pub
in Glenfield which kindly let us set off from their
car park. It was great to see all the riders in
their custom made Mesothelioma cycling
tops, which had taken some organising but
was well worth it as it made us feel like a real
team! Many of our friends and family made the
effort to come and see us off which created a
real buzz, and a great atmosphere to start the
ride, even if it was 7:30 in the morning! After a
quick thank you to the supporters, a phone
conversation with BBC Radio Leicester
followed by a group photo we set off on the
96.2mile ride to the clock tower in Skegness.
Overall the ride was amazing and I could not
have asked for it to of gone any smoother than it
did apart from the slight detour that 17 of the
riders took coming out of Boston but it was all
ok. We all managed to meet up at the Skegness
sign and this just adds an extra story to what
was an amazing day (I know my dad would have
found it hilarious that some of us went the wrong
way). We arrived in Skegness slightly damp and
wet after the heavens had opened to be greeted
by family and friends and a bottle of bubbly
supplied by my mum for each rider which was
brilliant. I had managed to organise a hotel that
could cater for all riders and their families (over 70
people) which was great. We were all together in
one place and could really celebrate and enjoy
the achievements of the day, there was a great
atmosphere and it was an extension of what
started out and ended as a truly fantastic day.
Since the ride was
completed the money
has continued to
pour into the just
giving site and yet
again we have been
bowled over by
people’s generosity
and kindness to the
cause, and although
at times it has
seemed like a lot of hard work it has also been
a great way to keep my dads memory alive
and even better to know how much he was
loved by the people around him and will always
be alive in their memories too! Our total raised
currently stands at £10,275.00, with gift aid
£12,644.64, here’s to next years challenge!”
“I would like to say a
massive thank you to
the team that rode
with me, without
them this ride would
not of been able to
happen they are;
Rich Scott, Jake
Morris, Ben Tyers,
Rich Carpenter, Luke Morris, Nick Griffin, Jodi
Pickering, Andy Henderson, Neil Platt, Jon
Moon, Paul Saunders, Jon Stonebridge, Paul
Curson, Matt Caswell, Jamie Aston, Scott
Helmkay, Dan Stewart, Keeley Mcnulty-Argyle,
Clare Scott and Steve Holley. Thanks must
also go to the support teams of John McNulty,
Carl Smith, Andrew Morris, John Caswell,
Alistair Fenn and Sophie Moon.
“Here is Jodi’s quote about the ride and
her efforts in raising money for the charity:”
“Being a close friend
of Tim and his family I
have many memories
of good times with
Geoff Argyle. This
coupled with my work
as a nurse caring for
mesothelioma patients
over ten years meant I
was determined to
help raise awareness
and funding for
Mesothelioma UK in
Geoff’s memory. The fact I had never sat on a
road bike didn’t deter me. Having seen first
hand the predicted rise in mesothelioma
patients I knew funding and awareness for this
particular type of asbestos related lung cancer
would give much needed help as it will reach
its peak in 2020. Seeing the will power and
determination in those who undertake noncurative treatments and radical surgeries to
give them more time to spend with their loved
ones gave me the motivation I needed to
complete the challenge.
Many hours of training began and our
fundraising took off. The Glenfield hospital staff
showed us their support as I organised a cake
sale. We were overwhelmed with everyone’s
baking (and eating!) efforts and generosity.
6 months of careful planning and organising
by Tim paid off and our group of 21 riders
took to the road from Leicester to Skegness
96.2 miles later, a tremendous team effort,
determination and an amazing support team
meant that despite the wet weather and a
slight detour we all safely made it with a good
few laughs along the way, to a warm welcome
from supporters.
I would also like to thank my wife Keeley for her
help and support throughout the organisation of
the ride, she was truly amazing.”
It was with a great
sense of pride and
achievement that we
‘did Geoff proud’
raising awareness and
vital funds to give
further support
mesothelioma
patients and their
families and hope that one day their treatment
options will progress in the same way that many
other cancers have and may become curative.”
Tim Argyle
Jodi Pickering
Mesothelioma Newsletter - Autumn Issue 2015
13
Kayleigh Harden’s Skydive
After a nervous 7
hour wait due to
high winds, the
time had come
where there was
no going back...
As I boarded
the aircraft and
we climbed
to 11,000ft my heart was racing. The view over
Morecambe Bay and the Lake District was incredible,
but there was no time to admire it as the doors
opened and it was my turn to jump. Attached to
Brian there was nothing left for me to do but to smile
at the camera man and fall! The wind took my breath
away as we fell almost 6,000ft through the sky. Free fall through the clouds was amazing,
and before I knew it the parachute was pulled and a sudden and absolute silence
surrounded me. This gave me the chance to take in the stunning views as we floated
gently down to earth. Unfortunately due to the wind situation we got ‘stuck’ at 3,500ft
and so Brian had to turn the parachute through a downward spiral in order to get down
to the ground. This was good fun but did start to make me feel unwell! It was only as we
touched back down on the ground that I realised what I had achieved – I had completed
a skydive! And what’s more I had managed to raise donations for such a fabulous charity.
Tower to Tower
Challenge
“Dan Pickup, Dan Whittaker
and Danny Cuffe have recently
completed a none stop 430
mile cycle challenge from the
Blackpool Tower to the Eiffel
Tower in Paris in memory of
Jim Brennan who sadly lost his
life after a 2 year battle with
Mesothelioma on 22nd April 2015.
Jim contracted this awful disease
through asbestos exposure during
his career as a builder. The three
Dans set off from Blackpool on
Wednesday 8th July 2015 with
the aim of arriving in Paris on the
afternoon of Friday 10th July. This
none stop cycle challenge was a
John Hartley - London Marathon
“Following the loss of my step dad, Al Mitchell from Mesothelioma
last November, my husband, John Hartley decided to run his 2nd
London Marathon on 26th April 2015 in Al’s memory and raise funds
for Mesothelioma UK. Al ‘Mitch’ was only 68 years; he was a good
man; loved life, lived life and we felt it to be an appropriate & positive
way to commemorate his life as well as to raise awareness of this
devastating disease. John ran a
great time of 3 hours 48 minutes and
raised a total of £587.00; he is pictured here with his family
at the back of Horse Guards Parade after he finished. My
mum, Jackie Mitchell and all the family are immensely proud
of John and know Al would be too. He is sadly missed
and fondly remembered by family & friends; we have many
happy memories to cherish.” Marie Hartley
14
Mesothelioma Newsletter - Autumn Issue 2015
“In March this year my dad, Joseph Spiteri, sadly lost his battle with
Mesothelioma. He was diagnosed back in November 2013 and in
that time underwent a number of procedures and treatments.
He underwent surgery at Glenfield Hospital in Leicestershire
and was admitted to ward 26 under the exceptional care of Mr.
Apostolos Nakas, assisted by Mr. Kelvin Lau. He also received
excellent care from the team on the ward, whom he held in great
esteem. My dad was always very appreciative of the care that
he received at Glenfield and was very pleased to hear I would be fundraising for
Mesothelioma UK when I signed up for the British 10K London Run 2015. I completed
the British 10K London run on July 12th and managed to raise just over £1,000.00
Although he is no longer with us, I’m sure that my dad would have been extremely
pleased that I’d raised money for such an amazing charity.
Zoe Wright –
Kinder Trespass Trail
Sintons Asbestos Team
The North East of England and Cumbria continue
to have the highest rates of people suffering from
mesothelioma in the UK. Sintons Asbestos Team is
committed to running in as many organised events
as possible across the north east, to raise awareness
of mesothelioma and vital funds for Mesothelioma
UK. So far the Sintons team, have run the famous
North East Blaydon Run and the Grasmere Gallop in
the Lake District, the next stop will be the Kirkley Hall
10k and then the Great North run!
Tributes in Memory of Maureen Whybrow
Instead of flowers, we invited friends and family for
donations to our chosen charity Mesothelioma UK
from those who wish to remember our beloved wife,
mother, grandmother, great-grandmother Maureen
Whybrow. This charity works tirelessly to support
those affected by the disease Mesothelioma, with
which our mum was diagnosed in August 2014 and
which cruelly and prematurely took her from us on
24th July this year. None of us had heard of this
illness before, but it continues to affect many people who at some point in their lives
were exposed to asbestos. supporting their work is a fitting
tribute to our mum, who spent her. We feel that life helping
others. The Tributes in Memory of Maureen are £3,003.01,
we as a family are overwhelmed at peoples’ generosity, we
always knew what a very special person she was but it would
seem others felt the same. If we can spread awareness of this
terrible disease about this terrible disease then we will.
John, Daniel, Julie, Leigh and Sally
Mikeala Spiteri
huge undertaking both physically
and mentally and was made
more challenging due to sleep
deprivation. All three Dans arrived
safely in Paris on the afternoon
of Friday 10th July 2015 and
celebrated their achievement with
a well deserved beer and held a
very special toast to Jim. Due to
the Parisian traffic the trio missed
their scheduled flight home on
the Friday evening and ended up
having to stay in Paris overnight
and booking another flight home
on the Saturday morning. The trio
arrived home extremely tired and
saddle
sore! Jim
is sadly
missed by
the large
family he
left behind.
Jim would
have been
so proud
of what
the three
Dans achieved in his memory.
With gift aid included, the three
Dans raised over £2,500 with
more donations still to arrive.”
Claire Pickup (Jim’s Daughter and
Daniel Pickup’s wife)
Viv Gardener’s Coffee Morning
“The coffee morning we held on the 21st July was in memory
of Maureen Pool. Maureen was diagnosed in 2013 and died
in 2014. Maureen worked with my friend Noleen and I, we
worked together as staff nurses for many years and she was
a devoted nurse, mother, wife and friend missed by so many.
She gave so much to others
during her nursing career and
was so brave during her own
battle with mesothelioma I
am sure she would be very happy that any money
made will help towards relieving the suffering of
others. We were blessed with a nice sunny day and
were able to be outdoors.” Viv and friends raised a
wonderful £220.00. Viv Gardner
In Memory of Mr David M Ritchie
David sadly passed away on 22nd May 2015 after
being diagnosed in February 2014 with Epithelioid
Mesothelioma. David’s family asked for donations
through In Memory Giving and the total amount raised
was £4,155.02 which was generously donated by
family, friends and work colleagues in David’s memory
to Mesothelioma UK. David was one of life’s gentlemen,
and will be truly missed by everyone who knew him.
David’s dear wife Brenda, would like to thank everyone
for their lovely words and anecdotes about David and for
all the generous donations given in tribute to his memory.
“In October last
year I lost my
Mum after a 2
year battle with
mesothelioma.
I know it’s a
bit of a cliché
thing to say
but my mum
was truly an amazing person, she
was so loving and caring and good
fun to be around and she always
had a smile on her face right up to
the very end!, When she was first
diagnosed it was a massive shock
as we learned this cancer develops
anything from 15 - 60 years
after exposure to asbestos, and
unfortunately there is no cure! By the
time most people find out they have
this cancer it is too late and even
chemo would have only extended
her life by a few extra months, so
my mum decided against chemo
but she did under go a clinical trial
but unfortunately this didn’t change
anything. I’ve recently just taken up
walking as a hobby but I haven’t
walked longer than 6 miles yet, so
thought i would set myself a little
challenge for my little legs and walk
the Kinder Trespass Trail which is
around 14 miles and considered to
be a challenge even for a seasoned
Walker. So I thought at the same
time it would be nice to raise some
money and more awareness for this
charity, with
hope that in the
future we might
be able to find
a cure for this
cruel disease.”
Zoe raised
an incredible
£1,523.77
Mesothelioma Newsletter - Autumn Issue 2015
15
Brian Wallis - Spreading the word
for Mesothelioma UK
Brian is an ambassador for Mesothelioma UK and he and his friend Bob Blake
travel all around attending veteran events to raise awareness about mesothelioma.
Sadly, Brian sadly lost the love of his life, his dear wife Rosemary to mesothelioma
who worked along side him in the Royal Air force which is where she was
exposed to asbestos and he has dedicated himself to her memory to support
the vital work the charity does to help those who have mesothelioma and to raise
awareness about the dangers of asbestos.
Brian said “As we go around the various
regional events our support is growing
and we now have an established
presence in E. Anglia - where once we
had to make the first approach, we now
receive invitations to attend. Our 2016
diary is already filling up!” which is just
wonderful news. Brian and Bob have this
year alone visited: The Norfolk Classis Car
Rally, RAF Waddington (The Wave) Open
Day, Northampton Wisbech Armed
Forces Day, Cambridgeshire Hunstanton
Armed Forces Days, Norfolk Fleet
Hargate Military Show, Anglia
Showground, Holbeach, (with the Edith
Ellen Foundation) RAF Marham Friends &
Families Day, Kings Lynn, Norfolk (with
The Edith Ellen Foundation) Heydon
Village Vintage Fair, Norfolk and together
with ‘Friends’ of Meso UK in Essex, Herts
& Stafford and the Rosemary Elizabeth
Chamen - Wallis Trust. Through the
Rosemary Elizabeth Chamen-Wallis Trust
fund Brian has been able to part fund
some of the East Midlands MELU
(Mesothelioma and Lung Cancer)
Luncheon Club days out. Brian very kindly
invited the group in January to the House
of Lords where we very honored to meet
with Lord Alton, Lord Hunt and Admiral
West who were very interested in the
what the group had to say about their
mesothelioma journeys’ we were then
treated to a visit in the House of Lords
where we made a little bit of history, the
group were very privileged to be able to
take a seat while listening to our tour
guide which is not normally allowed. We
then followed with lunch in the
Westminster restaurant and were then
treated to a private tour of the Jewel
Tower across the road. Brian also
arranged a trip to Kirby Hall in May and
the Harringworth Viaduct, which the
group also really enjoyed. The MELU
luncheon Club as a thank you invited
Brian and Bob to their Skegness day out
in July, where they then presented Jill
Lemon Fundraising Manager £1,000.00
cheque from the donations collected from
their regional events adding to the
£200.00 already collected made it
£1,200.00 which was just wonderful.
Brian along with everything else also does
a lot of work in the House of Lords
regarding the Mesothelioma Bill and along
with Bob and their supporters they
continually spread the word about
mesothelioma and asbestos, so if you see
them with one of our stands at these
events please go and say hello, they
would love to see you.
Darren Trundle –
Sahara Desert Trek
“On November 7th 2015 I will be flying
out to Morocco, to spend five days
trekking 100km in the Sahara Desert,
to raise money for Mesothelioma UK.
I am doing this because 3 years ago
my sister Lorraine at the age of 48
was given the devastating news that
she was suffering from Mesothelioma.
Lorraine has undergone numerous
chemotherapy and two major
operations. She stays positive and as
strong as she can.
So please help me to help her and
others who are suffering through this
awful disease I know times are hard
but please donate any amount you
can spare to help raise awareness of
this cancer, and the costs of specialist
nursing and vital research.
You can donate through my just giving
page at justgiving.com and search for
Darren trundle, or put your name and
amount on the sponsorship form.
Thank you so much for your support in
raising money for this cause, which is
close to my heart.
I am also organising a Charity Golf Day
on Friday 2nd October 2015 at Great
Hadham Golf Club Great Hadham
Road, Much Hadham, Hertfordshire
SG10 6JE in Aid of Mesothelioma UK.
Four Ball - £180 per team which
includes: Breakfast Bap, Coffee and
Evening Bar Meal, 18 Holes of Golf,
Longest Drive – Closest Pin, so if you
are interested in putting a team together
please contact me on 07976370176,
Robert Trundle on 0758054718 or email:
robert.trundle@[email protected]
with your team name and players.”
Our running costs for this year is £528,000.00 and without your support and donations we
could not continue to provide the vital services for our mesothelioma patients and carers
Linda Lakin’s ‘A Bit Of A Do’
In February 2014 I was diagnosed with Mesothelioma. It was a huge shock as
I had no known exposure to asbestos, although on review a minimal exposure
was identified. Three weeks after diagnosis I underwent pleural decortication
surgery which removed all of the visible cancer.
There
followed a
period of
recovery,
which went
on longer
than I
expected,
before I
started to feel anything like I had previous to
the surgery. In May 2014 I made my first
connection with Mesothelioma UK and
started to attend the East Midlands monthly
lunch clubs. I found these meetings with
other sufferers very helpful. They provide
emotional support, information and social
interaction which have been invaluable. This
led me to decide that I wanted to organise
a fundraising event to raise some much
needed funds for the charity and I decided
on a Dinner Dance which would also
celebrate my one year survival.
After more effort and stress than I could
have imagined 100 guests got together for
A Bit of a Do at King Power Stadium,
Leicester on 21 March 2015. Over the six
months between deciding to organise the
event and it actually taking place everything
that could have gone wrong did go wrong,
but on the night everything fell into place.
My family,
husband, siblings
and daughter,
provided
invaluable support
to bring it all
together and
stopped me from
getting too
stressed about it.
Professional photos were taken of guests
in their finery and we all enjoyed a three
course meal followed by live entertainment
in the shape of a male singer. Raffle prizes
were provided by a few local businesses
and a lot of friends and family and the raffle
raised over £500. There was also a bottle
of champagne and box of chocolates in a
separate draw for all attending. Finally I
also held a blind auction for a golf day and
meal for four which had been donated for
the event and
raised £160.
Altogether the
event has raised
£2,533.76 and a
further £530.00
has been
donated from
people who were
unable to attend.
My thanks go to all of those who were
involved in any way in raising this money. I
hope we have also raised awareness of this
disease and the work of the charity.
However, I think my next attempt at
fundraising will be something a little more
low key – I don’t think I could take the
stress again! Four days before the event
took place I found out that the cancer is
starting to come back and so the next year
is unlikely to be any less eventful than the
last one.
However, I know that my specialist nurse,
Liz Darlison, will be there to help me
through and the charity will continue to
provide me with support to help me
through as it does for many other sufferers
and their families.
Kath & Tracey Burrows
– Charity Night
Kath and Tracey held another
wonderful Charity Night in
memory of Les Burrows in
Leicester. The entertainment
was as usual top class,
with fantastic singers and
entertainers and everyone had a wonderful time. Kath and
Tracey would like to thank all those involved in putting the
show together and the wonderful support they receive each
year in memory of a lovely husband, father and friend, Les.
The Charity Night raised a fantastic £1,146.10
Sam & Tomas
- Ramathon
“We (Tomas and Sam) ran
the Derby half-marathon or
“Ramathon”, as it’s known on the
7th June 2015. It is a 13.1 mile
run starting at the iPro (Pride Park)
Stadium, before moving onto the
surrounding areas.
It is more than either
of us have ever ran
before, but we have
both been training hard
(ish!) and had hoped to
get respectable times.
The reason we are ran
this race was to raise
awareness of an illness
called Mesothelioma. It is a form of cancer that
is contracted by working around asbestos, in
most cases it has an offset of around 30 years.
People who worked in such conditions in the
80s may be having contracted the illness,
but currently in a dormant state. On average
people diagnosed
with the illness
die within 3
years of it kicking
in. Obviously
awareness of
this illness needs
to be raised,
with so many
people at risk
due to working
conditions in the past. If the illness is diagnosed
and treated early, life expectancy can be
increased greatly. It is a cause that means a lot
to both of us, and to our whole family and we
have managed to raise £1,264.83 and would
like to thank all those who donated and our
family and friends for their support.
Sam & Tomas
16
Mesothelioma Newsletter - Autumn Issue 2015
Mesothelioma Newsletter - Autumn Issue 2015
17
Caversham Swans Remember Alan Hayden
Sarah Woods
Caversham Swans are an under-15 girls’ football
team. They are a wonderful team of girls who
enjoy football and enjoy life. Sadly in June 2014
Alan Hayden, a parent of Jodie Hayden our
leading goal scorer, died from mesothelioma. Alan
was a wonderful man and a huge support for
Jodie and the entire team. Alan is sorely missed
by us all. Jodie and her teammates wanted to
show their support for the great work that Meso UK do for mesothelioma sufferers by
displaying their Meso UK sports bags and water bottles with pride..
“In April 2014
myself and
my family
received the
devastating
news that
my mam
had been
diagnosed with Mesothelioma at
the age of 55. There has been very
little research carried out into how
best to treat Mesothelioma and
currently there is no cure. Unlike
other more common cancers most
GP’s and nurses will never care for
a patient with Mesothelioma.
I wanted to raise money so that
more crucial research can be
undertaken so I signed up and
took part in the Great North Swim
in the Lake District and thanks to
my supporters raised £1,759.50,
come on people Lets beat cancer
sooner!!!!!!! Thank you.”
Danny Parr, Ambassador for Mesothelioma UK
This lovely couple, Jonny and Kate Cartwright got
married recently in Lymm Cheshire. Jonny is a close
friend of Danny Parr who sadly lost his father Richard
to mesothelioma. Danny was best man at Jonny and
Kate’s wedding and a sweepstake was arranged for
the combined time of all of the speeches, including
Danny’s!!!! Jonny was very fond of Danny’s Dad
Richard and had no hesitation in donating the funds
to Mesothelioma UK. A couple of years ago Danny and Jonny took part in a triathlon
to not only raise awareness and funds for the charity but also
to get fit. They raised a fantastic amount in memory of Richard
who was loved by all who knew him and is missed every
single day. Danny continues to support the charity through his
Ambassador role, and this wonderful initiative of ‘sweepstake
speech timing’ has raised a fantastic £100.00 Mesothelioma UK
would like to send their congratulations to the happy couple and
wish Jonny and Kate a wonderful and happy life together.
Grace and Evie - Ironkids Challenge
Grace and Evie were inspired to do something for
charity and they chose to do this years’ ‘Ironkids
Challenge’ 2015 Staffordshire which took place at
Shugborough Hall on Saturday 13th June 2015. They
joined with other children in their age groups and ran
a massive 1,000m. After a very soggy morning, the
girls managed to do their races in great time and are
already saying they want to sign up for next year! How good is that... Grace and Evie
would like to thank everyone so much for all the support and kind messages they
have received, and a bigger thank you for all of the kind donations too, both Grace
and Evie are amazed that you helped them to raise a fantastic £233.25
John Baird – Edinburgh Festival Full Marathon
John took part in the Edinburgh Festival Full Marathon on 31st May 2015, in
memory of his colleague Alistair Borland. This is what John had to say....” In
February 2014, one of my colleagues, Alastair Borland, was diagnosed with
Mesothelioma. Alastair sadly passed away in October 2014. Mesothelioma,
at this time, cannot be cured and can strike anyone, even those, like Alastair,
who never even realised they had ever been exposed to asbestos. Treatments
are being developed and Alastair did take part in some early research treatment, but the funding
for this research depends upon sponsorship in events like the Edinburgh Marathon. Our
company agreed to match all donations made up to £200, so for every £1 you sponsor me
it will raise £2 for Mesothelioma UK. Mesothelioma UK doesn’t hit the big headlines like some
other cancer charities, but when you read about this condition you realise that it needs all the
support you can give.” John completed his full marathon run and raised a fantastic £2,146.25
18
Mesothelioma Newsletter - Autumn Issue 2015
Irwin Mitchell
are hosting the
Mesothelioma in
the West Midlands
Study Day which is
being held at the
Hilton Metropole,
NEC Birmingham
on 22nd
October 2015.
For more
information or to
register interest,
please e-mail:
mike.holmes@
irwinmitchell.com
Craig Budsworth - Les Grande
Montagnes 75km Uphill Bike Ride
“I’ve been very lucky in my life to have known a lovely
bloke who, even in the face of the death sentence that is
mesothelioma, always had a positive outlook on life. To be
friends with your competitors in any industry, speaks volumes and Steve was this to many.
He was also my mate, offering sage advice, roommate on occasion and umbrella sharer on
the day it rained all day at the Ryder Cup at Celtic Manor. He wanted to ‘fight this b****’ so I
thought I’d try and help raise funds by riding up a couple of hills. Steve had been ‘technical
support’ on a previous daft challenge when I raced in the Rad am Ring (a 24 hour relay
cycling race round the Nurburgring) with a bunch of our other friends and so riding up Alpe
d’Huez seemed a fitting tribute to a wonderful man. The Alpe has 21 hairpin bends, climbing
up at more than 8% for more than 8 miles. Whilst sounding tough, cyclists are completely
respected in the whole area, with wonderful Tarmac and perfect cafes. If you’re looking for a
charity challenge next year then this is definitely for you. Thank you to all of my supporters;
with your help I have raised £2,116.25 in memory of my friend Steve ‘Johno’ Johnson.”
Stuart Henderson –
A Gig in memory of
Brian McIvor
Natalie Benson – Two Castles Run
Mesothelioma is a hard word to say and a very hard thing to live with. Mesothelioma is
caused by exposure to asbestos and affects the lining around the lungs. People who
work in building trades are particularly vulnerable. There is no cure so far and I would
like to help to beat this cancer by facilitating research into new therapies so on the 14th
June 2015, in memory of my dear uncle Rodger, I took part in the Two Castles Run.
My uncle Rodger was diagnosed with Mesothelioma Cancer in 2012. He dealt with
his illness in a way that typifies Uncle Rodger’s attitude to life was he just got on with it
and gave it everything he had. Uncle Rodger was a true gentleman, and if my two boys
grow up to be just half the man he was, I would be a very happy mummy!! A big thank
you to all those who supported me and helped me raise a wonderful £125.00.”
Helena Stanley and Alida Coates The Birmingham Triathlon
On the 19th July 2015 in the city of Birmingham, Helena
a Mesothelioma UK Specialist Nurse and Alida a Trustee
took part in a Triathlon to both raise awareness about
mesothelioma and asbestos and
funds for the charity. They had
a fantastic time and thoroughly enjoyed this challenge
so much that they have signed up again for next year!!
Helena raised £862.50 and Alida raised £1,650.00
making a grand total of £2,512.50 just fantastic...
The David Richardson Memorial Walk for Meso
Tina Poultney, her son Ryan, her mum, Pat Richardson
and others will be doing ‘The David Richardson
Memorial Walk’ on Sunday 20th September 2015.
David took part in the 6 mile walk for Mesothelioma
UK last year with his family and
friends completing the walk
in good time where he was
met by the Mesothelioma UK and Mr Nakas outside the
Glenfield Hospital. Sadly David lost his battle to mesothelioma
and passed away in May this year, so in support of what
David started, his family and friends and members of the
Mesothelioma Uk team, Jill and Debs will be getting together
to complete this walk in David’s name.
On 19th June 2015, Brian McIvor,
a long time fixer of all things
electronic and musical, sadly
passed away following a short but
brave fight with mesothelioma,
a form of cancer that effects the
lungs. Brian worked with Sound
Control and then formed his own
company Soundwave Music
Repairs. With over 25 years of
service to the music community
in Dunfermline and surrounding
areas, Brian repaired, sorted and
generally helped out musicians to
enable them to keep on gigging
and playing the length and breadth
of the UK. Artists such as Big
Country, Nazareth were among the
people he kept live as well as the
numerous wedding, local and solo
artists that needed his services.
To pay tribute to his outstanding,
courteous and friendly service a
group of musicians that worked
with him have organised a gig in aid
of Mesothelioma UK at PJ Molloys
on Sunday 18th October. We hope
that we can raise some much
needed money for this cause in
Brian’s memory however we know
that Brian’s reach was far and
wide and that some people might
not be able to attend to say a BIG
THANKS to him so please go to
https://www.justgiving.com/brianmcivor
and donate in his memory.
If you have a story to tell
and would like it to feature
in our newsletter please
contact Jill Lemon on
0800 169 2409 or e-mail it to
[email protected]
Mesothelioma Newsletter - Autumn Issue 2015
19
a te s
N adine C o
Mo r n ing
– C o f fe e
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20t h Ju n
20.00
ra is e d £3
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Mesothelioma Newsletter - Autumn Issue 2015
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03.75
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Challenge on 8th August
2015 in memory of Revi na
Well s, our dear ly loved
Mam , who sadly lost her
fight to meso theli oma in
2009 - raise d £497.50
CASA En
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House, J
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Lesley Nort on
– 23rd June 2015.
Rais ed £2,525.00
In Memory of her
husb and Dona ld Nort on
from his fune ral
donation s
K a te M ac
n am a ra
– Sp o n s o r
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Mesothelioma Newsletter - Autumn Issue 2015
21
James Toplis - IRONMAN 70.3 Staffordshire


The Royal Marsden School
Fulham Road,
London SW3 6JJ
Tel: 020 7808 2900
Email: [email protected]
www.royalmarsden.nhs.uk/school
“In 2013 my mom “Jan” was diagnosed as having a Mesothelioma.
Mesothelioma is a rare incurable cancer affecting the lungs and is usually
associated with asbestos exposure. One and a half years later following
one large operation she is doing really well.
When you receive a
diagnosis of Cancer
there is no instruction
booklet with how you
are supposed to
respond or deal with
it, but this inspirational
charity was there to
help and guide our
anguish and
adjustment to our new diagnosis.
Mesothelioma UK based in Leicester is
leading the fight supporting patients, families
and research into new treatments.
Mesothelioma Practice in Cancer Care (on-line)
This module critically examines the complex nature of mesothelioma, exploring the
advanced practice skills required to care for and manage the subsequent impact of
the disease on the patient and family, with particular reference to the implications
for carers after the patient’s death.
This is an innovative e-learning module developed specifically to address the care of the patient and family
affected by mesothelioma. It will provide students with the necessary specialist knowledge and skills to
care for patients with mesothelioma throughout the disease trajectory. The module is delivered as an elearning package, where students use an online forum (Moodle) to access resources, discussion forums,
activities and e-learning materials. This provides the student with the opportunity to work flexibly,
collaborate with other students whilst being supported by tutors who facilitate on-line learning.
Who is it for?
Health and social care practitioners
Duration
Equivalent to 5 days delivered on-line
Dates
This module will next take place during the academic year 2015/16.
Dates to be confirmed.
Cost
To be confirmed for academic year 2015/16
Academic credits
15 credits at level 6 (degree) or level 7 (master’s)
Assessment
Level 6: Poster and 1,750-word essay
Level 7: Poster and 2,250-word essay
Mom continues to be an inspiration and to
me and has shown me about rising to the
challenge. So I wanted to do something that
is tough, painful and hard to raise some
This stand-alone module also forms part of these programmes
• BSc (Hons) in Cancer Care
• Graduate Diploma in Cancer Care
• Post Graduate Certificate Healthcare Practice (Cancer)
• Post Graduate Diploma Healthcare Practice (Cancer)
• MSc Healthcare Practice (Cancer)
To apply
Please complete an application form and return it to the School. Application forms can be printed from our
website or requested
from the School.
Mesothelioma Newsletter - Autumn Issue 2015
• 1.2 mile open water swim
• 56 mile Bike
• 13.1 mile Run (Half marathon)
Charity events are very popular and asking
for sponsorship often makes you the most
avoided person when the form comes out in
the office! But you my family and friends dug
deep and saw the persons behind the form
and assisted me in raising £1,408.80 to help
the ongoing fight. Thank you to all my
wonderful supporters.”
“My friend, Emma Rawlinson, and I are
taking part in Tough Mudder on the 26th
September 2015 in aid of Mesothelioma
UK. Sadly my Mum has recently been
diagnosed with terminal lung Cancer
(Mesothelioma). My Mum has had a very
difficult past few years. In Aug 2013 she
had a hip replacement then shortly after
that was diagnosed with skin cancer.
She undertook radiotherapy and a very
invasive operation on her face and was
given the all clear. Just as we all thought
she had it beaten we were given the devastating news about the Mesothelioma. I
had already planned to undertake Tough Mudder (13 mile mud run with 25 obstacles
including electric shocks, ice emersion, 8 foot wall etc) but I have now decided to
take part in support of Mesothelioma UK. Mesothelioma UK is a charity that provides
a national resource centre dedicated to ensuring free access to specialist information,
support, education and improved care and treatment. In addition to Emma and I
taking part; as a show of admiration for my Mum’s strength during this difficult time our
children, Louise age 12, Annabelle age 10 and Leah age 7 (from the Hernon clan) and
Katie age 9 and Penny age 8 (from the Rawlinson clan), have all volunteered to take
part in the Mini Mudder.”
Entry requirements
Applicants should currently be caring for patients with lung cancer and/or mesothelioma.
22
The Ironman 70.3 involves:
Rob Hernon and Emma Rawlinson
Key topics
• Diagnostic difficulties
• Supporting patients and carers through treatment and non-treatment options
• Psychological impact of disease related to exposure to toxic substance
• Spirituality, harnessing positive thinking and hope
• Challenges for health care practitioners in caring for people with mesothelioma
• End of life care
• Ethical considerations
money and awareness, and to help those
like mom continue the fight. So I took on the
Ironman 70.3 Staffordshire Challenge, this is
what it is all about!!
Jo Hoyle – ‘Hair today, gone tomorrow’
“My lovely mum was recently diagnosed with Pleural Mesothelioma as a result of
exposure to asbestos when she was a primary school teacher in the 70s. The British
Lung Foundation, believe unless a cure is found we will see thousands of deaths of ex
teaching staff who were exposed to asbestos in the 60s, 70s and 80s. I want as few
families as possible to go through the death of a loved one. I have promised my mum
that I would shave my head in solidarity when she begins chemotherapy, I would like to
use the occasion to do my bit toward supporting the excellent work of Mesothelioma
UK. If we raise over £150 there will be pictures!”
Call for expressions of interest
from NHS Trusts across the UK
for Mesothelioma UK funded
Clinical Nurse Specialists
Mesothelioma UK (MUK) is dedicated to providing specialist
mesothelioma information, support and improved care
and treatment across the UK. We rely totally on donations
to provide our services. We provide funding to support
Mesothelioma Specialist Nurses post across the UK and
currently support 12 specialist nursing posts across the UK.
The funding supports 2 days (0.4 WTE) a week to provide
specialist support for mesothelioma patients, carers
and healthcare professionals. Service level agreements
are set up with the trust for a 2 year period, funding is
usually ongoing as long as the post holder is able to meet
objectives set by Mesothelioma UK. As well as providing
support locally, the appointed nurses also support the
national Mesothelioma UK helpline as part of a rota.
Due to changes within the team and additional funding
availability we are currently looking to support up to a further
4 posts nationally. We are particularly keen to place posts in
Wales and the London area. All posts will be awarded based
on quality and strength of expressions of interest received.
So if your trust:
• Has a specialist interest in Mesothelioma and
• You currently employ enthusiastic and motivated lung
cancer specialist nurses who deal with patients suffering
from the mesothelioma and
• You wish to enhance the role of your specialist nurses and
• You have clinical MDT lead and management support for
the post.
Mesothelioma UK are inviting trusts to submit expressions
of interest for funding to support a Mesothelioma UK
specialist post within your area.
The post holders are supported by our Director of Services
/ Nurse Consultant, team of specialist mesothelioma nurses
and the MUK operational team.
The post holder must be committed to delivery of the
service as set out in the service level agreement and fully
supported by their management team. All expressions of
interest must be supported by:
• The Trust Senior Management
(e.g. Chief Executive orDirector of Nursing)
• Lead Cancer Nurse / Head of Nursing
• Lead Cancer Clinician
For further information and “Expression of Interest”
proforma please contact:
Ghislaine Boyd, Business Development Manager
Email: [email protected]
Telephone: 0116 258 3679 or
Liz Darlison, Director of Services / Consultant Nurse
Email: [email protected]
Telephone: 0116 250 2615
You can also access the “Expression of Interest” proforma
on our website www.mesothelioma.uk.com
Closing date for submissions 31st December 2015
Funding will be released from 1st April 2016
Mesothelioma Newsletter - Autumn Issue 2015
23
Why Slater and Gordon are Sponsoring the
Mesothelioma UK Patient and Carer Day 2015
On behalf of the Chest and Asbestos Disease Group at Slater and Gordon
Lawyers, I am proud to confirm that we are sponsoring the Mesothelioma UK
Patient and Carer Day 2015.
I recently began my role as Asbestos
Support Worker at Slater and Gordon,
joining the Chest and Asbestos Disease
Group who have worked for many years on
behalf of Mesothelioma sufferers and their
families. We have seen first-hand the tragic
effects of asbestos and proudly support
Mesothelioma UK in caring for those who
suffer as a result, whilst raising awareness to
see that future generations are not afflicted.
Mesothelioma is a devastating disease that
can affect patients’ family and friends just as
much as those that are suffering.
Mesothelioma UK Patient and Carer Day
provides mesothelioma patients, relatives
and carers the opportunity to meet others
going through treatment and care, and to
share experiences, as well as receiving
up-to-date, unbiased information about
Mesothelioma and giving them the chance to
ask questions and raise any issues that they
have encountered throughout their care .
Hosted by Mesothelioma UK, the event will
take place at Macdonald Alveston Manor,
Clopton Bridge in Stratford-upon-Avon on
Friday 2nd October, 2015 at 9.30 am.
Patients, relatives and friends may attend
free of charge. The programme for the day
will include information on understanding
trials, patient stories, a “wellbeing session,”
and information on fundraising for
Mesothelioma UK. As well as this,
information and awareness will be provided
on the dangers of exposure to asbestos.
The lack of awareness for the dangers of
asbestos is a worldwide epidemic, with
studies revealing that one-in-three
European workers are exposed in their
workplace. Mesothelioma is not an issue of
the past but of the present and future.
Recent reports have revealed that 86% of
UK schools are contaminated with
asbestos. Mesothelioma causes more than
2,000 deaths every year, and by raising
awareness to the dangers of exposure to
asbestos, many families will be spared
tragedy and suffering in the future.
Should you have any queries regarding the
legal aspects of Mesothelioma and exposure
to asbestos, my colleagues and I from the
Chest and Asbestos Disease Group at Slater
and Gordon will be present at Mesothelioma
UK Patient and Carer Day 2015 to answer
any questions or for an informal chat. We
look forward to meeting you.
Alison Blake
Asbestos Support Worker, Slater and Gordon
The Mesothelioma UK Charity Christmas Cards
will be on sale from the 1st October 2015.
There are 9 designs to choose from and each design is
packed in 10’s for just £4.00.
You can order your cards by phoning 0800 169 2409 and you
can pay by card over the phone or send a cheque to
Mesothelioma UK with your order to Jill Lemon, Mesothelioma UK,
Glenfield Hospital, Groby Road, Leicester, LE3 9QP.
Angels in Red
Fa La La La La
24
Car Dogs
Father
Christmas
Praying Angel
Church at Choir
Mesothelioma Newsletter - Autumn Issue 2015
Geese
Let it Snow
Village Street in Snow
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.
Mesothelioma UK Charitable Trust would
like to thank all of our wonderful sponsors.
If you would like to find out more about
becoming a Corporate Partner or Friend
contact our Fundraising Manager Jill Lemon on
0800 169 2409.