Newsletter - Mesothelioma UK

Transcription

Mesothelioma UK
Newsletter
Summer Issue 2015
Court Fee Increases
Limits Access to Justice
Dear Mesothelioma
UK Supporters,
On 9 March 2015 court fees were
increased for money claims; for claims
worth more than £10,000 the new fee
is 5% of the value of the claim.
Firstly congratulations to the team here at Mesothelioma UK for putting
together another excellent newsletter. We receive so many positive
comments about the content, the trials ‘pull out poster’ is proving particularly
popular. We need your help to keep this up to date, if you hear of any trials
other than those listed please let us know.
For claims more than £200,000 in value, the fee
is now £10,000. The maximum court fee before
these enhanced court fees were introduced
was £1,920. This represents a staggering 420%
increase. The increase in fees will affect all litigants
and will have a detrimental impact on a number
of court users. Those affected by a personal
injury, who may be of limited financial means, will
undoubtedly struggle to afford the extra court fees,
particularly if they have been out of work for some
time due to their injury or are elderly. The increase
in court fees will deter some victims of personal
injury from pursuing a claim for compensation,
put off by the price of litigation. There will be a
shift in the manner in which mesothelioma cases
will be defended by insurance companies. They
will be eager to avoid litigation and the prospect
of paying £10,000 court fees in each case.
Insurance companies will employ delaying tactics
and protracted pre-litigation in an effort to avoid
court proceedings. Arguments will surface from
the defendant that claims have been issued
prematurely. All will serve to delay the progress of
a case, which presently progresses swiftly through
the mesothelioma list in the Royal Courts of
Justice. The rise in charges will make England and
Wales one of the most expensive jurisdictions in
the world to bring civil claims.
There has followed widespread criticism from
many legal professional bodies, including The Civil
Justice Council, who expressed grave concern
that the increase in fees will have “potentially
far-reaching and damaging consequences for
access to justice”. The Judiciary of England and
Wales issued a response expressing concern that
the research evidence carried out in 2013 and
2014, was too insubstantial. Only 31 civil users
were questioned, just 18 telephone interviews took
place and moreover, just 12 of the 2014 research
interviewees were pursuing claims above £10,000,
which is the area where the major increases have
been made. The Law Society president, Andrew
Caplen commented “It cannot be right that the
government has based a decision with such wide
ranging consequences on limited small-scale
research and scant evidence. The phrase ‘false
economy’ does not even begin to describe this
disastrous announcement from the government.”
Satinder Bains, Partner, Irwin Mitchell LLP
Please, please keep sending your ideas and
stories into us so that we can be sure and keep
the newsletter very much alive with what matters
most in our Mesothelioma Community.
I would like to extend a warm welcome to the
latest Meso UK Team Recruit – Caroline Barry.
Caroline is going lead on Mesothelioma UK’s
expertise relating to welfare benefits. Feel free to
contact Caroline with you thoughts, questions
and benefits issues through the usual Meso UK
contact numbers/email. The MARS 2 study has now opened, Leicester,
Sheffield and Burton are all open to recruitment
and more centres will follow. I understand
Meso 2 and TRAP are ready to move to the
next stage meaning more trial opportunities for
Mesothelioma patients. A recent international
oncology meeting in the USA (ASCO) saw a
number of presentations reveal exciting data
from a variety of agents being used in other
cancer types. Our national meso medical
enthusiasts are negotiating hard to get these
agents into mesothelioma trials and in the UK.
It is likely we will see a number of mesothelioma
studies being planned involving these agents
over the coming months/year...watch this space.
Action Mesothelioma Day (AMD)is upon
us, please link up with the National theme
highlighting the need for more research funding
and profiling the IMIG 2016 http://imig2016.org/
meeting which the UK are hosting.
Many groups are holding afternoon cream teas,
releasing doves and asking attendees to write
their mesothelioma wishes for the future on a
paper dove that will be displayed on AMD. We
are hoping these same wishes will welcome
the many clinicians, researchers and scientists
that descend on the IMIG 2016 event in May
next year.
Finally please be sure and support Lord Alton’s
Mesothelioma (Amendment) Bill [HL] 2015
which was introduced in the House of Lords by
Lord Alton of Liverpool on June 2, 2015. The
bill calls for a mandatory research levy to be set
on UK insurers to provide funding for research
into mesothelioma.
Best wishes to you all,
Liz Darlison
On behalf of the Local Organizing Committee and its Co-Chairs Dr. David
Waller and Prof. Dean Fennell, it is a great pleasure to announce and
inform you that the UK has been selected by the Board of the International
Mesothelioma Interest Group (iMig, President Prof. Dean Fennell) as the host
for their international Conference in 2016 (iMig 2016).
The conference will be held from May 1 – 4,
2016 at the International Convention Centre
in Birmingham, UK. Building on the success
of preceding meetings in Boston in 2012 and
Cape Town in 2014 the Conference will feature a
highly interactive, stimulating and multidisciplinary
program including workshops, plenary sessions
as well as oral abstract and poster sessions.
Under the theme of ‘Towards Personalized
Care’ the meeting will address the entire patient
pathway and look beyond the scientific topics
alone. The Conference will provide the ideal forum to
stimulate ideas and establish collaborations as well as
to initiate intense discussions. Extended networking
opportunities will foster communications between
delegates. This is an exciting time in Mesothelioma
in the UK and we are expecting more than 500
delegates from around the world to attend. We look
forward to welcoming you to Birmingham in 2016.
Contact:
Grit Schoenherr, Senior Conference Manager
Email: [email protected]
Phone: +1 604 681 2153
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.
Members of Bristol & Beyond Asbestos Family Support
held their 5th Annual Patient and Carer Conference at
Bristol Zoo Gardens on 20th March 2015
Ginny Chalmers welcomed members
and their families to this popular event
to hear speakers sharing practical and
encouraging advice on lifestyle and
health for people with asbestos related
diseases as well as enjoying valuable
social time.
Gerry Slade, Mesothelioma UK Nurse
Specialist for the South West, started
the day with a presentation on the work
and support provided by Mesothelioma
UK. Gerry provided an engaging insight
into how Mesothelioma UK operates and
how the charity aims to provide support
and treatment to sufferers of asbestos
related diseases. Gerry also shared
her experiences from involvement with
the Mesothelioma Nurse Action Team
(M-NAT) and the Papworth Mesothelioma
Support Group (MSG). Gerry described
the many social events that MSG has
organised; these range from line dancing
to BBQs. Gerry finished her presentation
with advice to sufferers on how to relieve
breathlessness with tips such as slowly
moving a hand held fan from side to
side as well as benefits of basic exercise
movements, like standing up and sitting
down, to help expand the chest.
Dr Duneesha de Fonseka, Clinical
Research Fellow at Southmead
Hospital, followed with a presentation
on the availability of new and innovative
clinical trials and research into
mesothelioma. Duneesha spoke at
length about the many trials currently
underway in the UK and in particular in
Bristol. These included the RESPECT
Mesothelioma trial which is looking at
the possible benefits of introducing early
palliative care to patients suffering from
mesothelioma and which aims to see
if this can improve the life and comfort
of the patients and their carers. Also
is the TARGET trial which is looking at
PET scans highlighting areas where the
tumour is active and which is hoped will
improve the accuracy of biopsy.
There are 15 trials currently available
or soon to be available and it is very
encouraging to know Duneesha and her
colleagues are so active in the field of
mesothelioma research.
Following a delicious buffet lunch,
Alistair Macfarlane, Exercise Referral
Manager at Everyone Active Leisure
Centres explained to members how
exercise can help reduce cancer related
fatigue. He advised members to look for
a graduated exercise programme and
to be realistic with expectations. Alistair
also described what could be done at
home such as playing with children and
grandchildren, gentle chair exercises, like
sit to stand and lifting tinned food.
The final speaker was Robert Cronin,
Specialist Dietician at Southmead
Hospital. He gave invaluable tips on
maintaining weight which is a common
issue for mesothelioma sufferers. He
advised snacking on cheese, nuts and ice
cream and avoiding gas producing foods
such as beans, onions and beer – also not
to fill up on drinks before you eat. Robert
informed members that there is now a
Macmillan Centre at Southmead offering
consultations to discuss diet. This clinic
can be accessed on a self refer basis.
After a great day, the conference
concluded with an Ask the Expert panel
discussion allowing BBAFS members to
ask a panel of legal and medical experts’
questions on treatment, government
benefits and legal issues. Thanks to
Gerry Slade and Sarah Smith, Lois
Philips, Karen Gough - Macmillan
Welfare Benefits Adviser and Isabelle
Selley of Irwin Mitchell for taking part.
Sarah Smith, Lung Cancer Nurse
Specialist at North Bristol NHS Trust,
continued the day with a report of her
visit to iMig 2014 in Cape Town. The
audience were fascinated to hear that
300 worldwide experts in the field of
Mesothelioma attended the conference.
Sarah stunned the audience by sharing
that one of the facts that she had learned
at the conference was that asbestos is
only banned in 55 countries today!
Most exciting was that in May 2016 iMig
is going to be held in Birmingham, UK. It
will be a fantastic opportunity for the UK
to host this eminent, global conference
devoted to mesothelioma.
The atmosphere in the conference room
throughout the day was as warm as the
beautiful spring day – after the eclipse
that is! A wonderful turn out once again of
members and experts sharing knowledge,
advice and support. After a fun raffle
raising funds for mesothelioma research,
members took the opportunity to take a
stroll around the zoo and gardens.
MesobanK
For those who have not heard of MesobanK, we have been funded for three
years by the Mick Knighton Mesothelioma Research Fund and British Lung
Foundation to collect archived samples of mesothelioma tissue from Pathology
Departments as well as samples of pleural fluid, blood and tumour from newly
diagnosed patients in selected hospitals across the UK.
These samples will all be processed for
researchers to use, with the hope that in the
not too distant future, research will assist in
finding improved treatments. MesobanK is
the only mesothelioma tissue bank in the UK
and we hope that by pooling samples from
major diagnostic centres in the UK, we can
collect a significant number of samples
allowing researchers access to a very
valuable resource.
As of February 2015, MesobanK has collected
data and samples from over 70 donors at nine
sites (see below). New sites at Oxford, Preston
and Liverpool are almost ready to begin
identifying patients for consent to donation.
We are extremely grateful to those patients
who have generously given their consent to
donation when approached. If you have
donated samples to MesobanK and would like
to tell us about your experience, we would be
very pleased to hear from you.
Every hospital donating samples has been
given access to a database to collect data
about the patients’ diagnosis and treatment.
This information, which will help researchers
better interpret their results, is supplied in a
completely anonymous way which means that
the researchers can not tell who a sample
comes from. We have also supplied sample
kits and instructions on the best way of storing
samples. This helps us to ensure that every
sample is potentially valuable and can be used
to maximum benefit by researchers.
We have had enquiries from researchers
wishing to use samples from MesobanK and
have started the formal application process. I
hope we can give you some good news in the
next newsletter should we be allowed to
contribute again!
MesobanK has been fortunate to recruit a
permanent administrator – Jo Lemon started
with us in October 2014 and has fast become
Bristol & Beyond Asbestos Family Support
always welcomes new members. Our
next event is at Whitehall Garden Centre,
Whitchurch on 20 May 2015.
Please telephone our secretary, Sarah, on
07544 213475 for further details or visit
our website www.bristolasbestos.co.uk
or follow us on twitter @asbestosbristol
Should you require any information with regard to any of the above events/information
please contact Debbie Neale on 0800 169 2409 or email me directly at [email protected]
2
Mesothelioma Newsletter - Summer Issue 2015
an invaluable member of the team. The Project
Team is headed by Dr Robert Rintoul and is
also fortunate to have the input of Mr Marco
Scarci, a Consultant Thoracic Surgeon based
at Papworth who operates on many of the
patients referred to Papworth for treatment; Dr
Stefan Marciniak, Clinical Research Fellow and
Consultant Physician from University of
Cambridge; Dr Doris Rassl, Consultant
Pathologist specialising in Mesothelioma from
Papworth Hospital and Dr Vikki Hughes who
currently leads the Research and Development
Department at Papworth Hospital.
Wemanaged to get (most!) of the team
together very recently for a photo:
Left to right:
Dr Robert Rintoul, Jacki Gittins, Dr Doris
Rassl, Dr Stefan Marciniak and Jo Lemon
If you would like to know more about
MesobanK or feedback your thoughts on our
work, please feel free to contact us.
Contact details:
Mrs Jo Lemon, Administrator
(Usual days of work are Mon – Thursday)
Mrs Jacki Gittins,
MesobanK Project Manager
(Usual days of work are Monday – Wednesday)
Tel: 01480 364903
For the first time ever, Mesothelioma
UK is offering a grant to support
UK mesothelioma research.
Mesothelioma UK has enlisted
the help of the British Lung
Foundation, who is administering the
applications, evaluation and awards
process using its well-established
research grants award system.
This research grant is available for
laboratory based or clinical research,
including epidemiological and/or palliative
care studies into mesothelioma lasting
up to three years and to a maximum of
£150,000. The first step for interested
researchers was the submission of a
‘preliminary application’ which provides
summary details of the proposed
study and resource requirements. The
deadline for the submission of preliminary
applications was 2nd February 2015
and nine applications were received.
These have been evaluated by the
BLF’s Scientific Committee and two
representatives from Mesothelioma UK,
resulting in the short-listing of the top
six applications. Relevant applicants
have been invited to complete a “full
application” that will provide extensive
details of the proposed work and the
resources needed to carry it out. These
full applications will be peer reviewed by
global mesothelioma research experts
and then discussed at a meeting of
the BLF Scientific Committee and
Mesothelioma UK representatives in June
2015, where funding recommendations
will be made. We’re looking forward
to the outcome of this process and
to supporting a truly groundbreaking
mesothelioma research study.”
Ian Jarrold
Head of Research
73-75 Goswell Road
London EC1V 7ER
Tel: 020 7078 7916
Web: www.blf.org.uk
3
My journey with Peritoneal Mesothelioma
“I didn’t sign up for this” I thought when the consultant told me I had
peritoneal mesothelioma. It was 2010 and I had just married Bob, my
second husband, and cancer was not on our radar. I was 54 and looking
forward to a long and happy future second time around with Bob.
The news was devastating. The only
real symptom I had was a swollen and
uncomfortable stomach and breathlessness.
I had been gaining weight rather quickly and
thought I needed advice about dieting! What
a shock to find the weight gain was due to
ascites fluid.
I immediately had a drainage and started
chemotherapy with pemetrexed and
carboplatin. I had five rounds of this. The
side effects of this were very unpleasant
and I was given steroids to help with the
symptoms. Unfortunately, the combination of
chemotherapy and steroids gave me type 2
diabetes and I had to be treated for that as
well. The cancer was held at bay for about two
years before it returned and I needed more
chemotherapy. This time it took some weeks
before funding issues were in place as my
oncologist had to apply elsewhere for funding
approval. Eventually, I had six more rounds
of pemetrexed, only two with carboplatin as
this time the carboplatin caused me to go into
anaphylactic shock and had to be stopped.
In late 2013 the mesothelioma again returned
producing lots of abdominal ascites. I had a
number of drainages each producing over 7
litres of fluid. I was breathless with a swollen
stomach and very uncomfortable. Once again,
funding was sought for pemetrexed. This time
it was declined on the basis that there was no
evidence to support using it a third time. I was
offered palliative care, regular drainage and
an older, cheaper and arguably less efficient
drug. As far as I could see this meant I was no
longer being offered any meaningful treatment.
I felt let down and abandoned by the NHS.
However, my husband and family sprang
into action, not accepting that my time was
up yet. They carried out their own research,
seeking the opinions of various experts
in both the UK and USA and concluded
that the only possible route to substantially
increase my lifespan was urgent access to
a team of surgeons at Basingstoke hospital
for cytoreductive surgery and I was referred
to Mr Tom Cecil. Despite warnings that this
surgery offers no guarantees the cancer
won’t return, it seemed to me it offered the
best and only option I had left and in March
2014 I was admitted for major surgery. In the
USA this surgery is regularly carried out as
first line treatment with considerable success
for some people. I believe Basingstoke is the
only place that does so in the UK. I requested
an urgent referral and was seen a few weeks
later by Mr Cecil at Basingstoke. He agreed
I was a suitable candidate for surgery and
within a few weeks I received cytoreductive
surgery with HIPEC.
4
It took four surgeons over eight hours
to remove the cancer, the peritoneum,
omentum, gall bladder and ovaries. I had
been advised it may also be necessary to
remove the spleen and part of the bowel.
However, this was not, in fact, necessary.
Laser knives were used to remove any
residual cancer, followed by a hot and
chemotherapy wash (HIPEC) to the
abdomen. I spent two weeks in hospital and
then returned home for further recovery. It’s
the quickest way I know of losing 3 stones
in weight! This was over a year ago. Yes, I
have some discomfort from my bowels, I
still get tired easily but, hey, I am still here
leading a meaningful life! I cannot thank
these wonderful surgeons enough as they
have given me a chance of life. From the
wider point of view I feel I have experienced
both the best and worst of the NHS.
The best because of the great care and
amazing surgery I have experienced but the
worst because of the withdrawal of certain
chemotherapy funding on the basis of lack
of evidence. There are very few people
diagnosed with peritoneal mesothelioma
per year (about 200 annually throughout
the UK) so it is hard to obtain “evidence” of
this drug or that surgery is working. Indeed,
at the time of writing this, NHS England
are considering withdrawing funding for
cytoreductive surgery. Why can’t the findings
of other countries (such as USA) be taken
into consideration?
We have this disease due to successive
governments, over a period of at least fifty
years, failing to protect us from asbestos
exposure. For most of that period, they
knew that there was a definite link between
asbestos and cancer yet failed to adequately
inform or protect us. More people die from
pleural and peritoneal mesothelioma every
year than die on the roads and billions of
pounds are rightly spent on road safety,
police etc. to help reduce this figure, yet
many people have never even heard of
mesothelioma, nor is it given priority funding.
I hope my story can help raise awareness
of this disease and encourage others that
when life seems bleak sometimes there is
help around the corner. My journey continues
with its ups and downs. Once again, I am
anxiously awaiting the results of a regular
scan but, at least, this time, there’s a good
chance it will be ok.
Josephine McLaren
May 2015
Nurse 9
– Hannah Ball
Slater & Gordon appoint
Asbestos Support Worker
I was thrilled and delighted to be
appointed as Mesothelioma UK nurse
specialist number 9, based at Oxford
University Hospitals NHS Trust as
from April. Like most of the other
nurses Mesothelioma UK fund my
role for 2 days a week
Alison Blake is Slater and Gordon’s Asbestos Support Worker.
She brings years of support work, knowledge and skills for those
diagnosed with an asbestos related disease.
I trained as a
nurse at Liverpool
University, where I
also completed my
specialist practitioner
in oncology certificate.
I spent my first years in
practice consolidating
my nursing skills in
general medicine and
cardiology before returning to my home town
of Oxford. I returned to my interest in oncology
and took a staff nurse job on a medical oncology
ward, where I quickly progressed to the junior
Sisters post. Following this I became a specialist
chemotherapy nurse during which time I led on
developing the in-patient chemotherapy service,
where I created and ran a clinic reviewing patients
before each cycle of chemotherapy.
In 2008 I was appointed as Advanced Nurse
Practitioner in Mesothelioma and Lung Cancer,
for which I lead for mesothelioma nursing care
for the Thames Valley area. I joined the National
Mesothelioma Nurse Action Team (MNAT) led
by Liz Darlison, a group which has inspired me
to think about the specialist needs and care of
patients and carers with this disease. As a result
of this I became a volunteer to help cover the
national Mesothelioma helpline.
I was pleased to be involved in the setting up and
running of the Thames Valley Mesothelioma and
Lung Cancer Patient and Carer Group, which
has been running for over 18 months now. This is
currently on hold due to needing to find a change
in venue, however I look forward to re-launching
this soon. Last year I graduated with my Masters
degree, for which my dissertation examined
the psychological care needs of patient with
Mesothelioma, again driven by my passion for
raising awareness of the specific care needs of
this group. I am a member of the National Lung
Cancer Forum for Nurses (NLCFN) and have
acted as chair for our local Thames Valley Lung
Cancer Forum for Nurses.
Outside of work I am busy looking after my two
young sons, tending my allotment and really enjoy
running (albeit slowly!). My aim is to complete a
half marathon later this year. I am greatly looking
forward to working with the team at Mesothelioma
UK and am looking forward to using this role to
further develop the information, care and services
for those with and those caring for Mesothelioma
both locally and nationally.
Hannah Ball
Alison was
previously the
Manager of
Asbestos Action
Tayside charity
from 2008 to
2014. Throughout
this period she
provided both
support to victims
of asbestos
related diseases
and their families. This support ranged
from home visits, assistance with applying
for Government benefits and other
practical support.
Alison is a respected campaigner and
fighter within the asbestos support
community and is keen to use her
knowledge and experience in the Kent and
South East of England region for asbestos
victims and their families.
Alison can also provide educational
information and support to lung cancer
nurses, chest physicians, Coroners,
community advice bureaus and other
advice agencies in the region.
“Having supported over 300 mesothelioma
sufferers and their families, I know how
valuable it is to be able to talk to someone
in the comfort of your own home.
Sometimes about fears, concerns but
even just to have a normal every day
conversation about ‘other things’ has
proven to be so beneficial for everyone.”
Alison’s knowledge and experience
together with her empathic personality
will make her a valued member of the
Chest and Asbestos Disease Group at
Slater and Gordon.
Mobile: 07790 551968
Mesothelioma News from Wales
Jo and Lorna from Asbestos Awareness and Support Cymru (AASC) have
established a working group with Naomi Horne Mesothelioma Specialist Nurse
for South Wales to help plan and co-ordinate a national ActionMeso Day event
for Wales this year.
The group includes representatives from
the legal and union sectors. We are
looking forward to having two events held
in Cardiff this year, one (1st July) in the
Senedd (Home of the Government of
Wales) at which we will be targeting
politicians and health professionals with
our message and the second event (3rd
July) is for patients and their families in the
National Museum of Wales. We will keep
you updated on this as the dates loom
nearer. AASC was delighted to meet up
with Meso Warriors and were so pleased
to receive a donation from the sale of their
2015 Calendars. We have also been the
nominated charity of IATP and were
honoured to be presented with a cheque
for £3308.81! AASC has been offering
help and support to patients with
mesothelioma and other asbestos related
illnesses across Wales since 2011. We
organise monthly lunches and also
monthly support group meetings as well
as dropin information sessions and
produce a quarterly newsletter, and our
telephone line is ready for your call! If you
are in Wales living with mesothelioma and
you have not yet reached out to AASC
then please get in touch. We need to hear
your story.
Call Jo 02920 363 550 or email
[email protected] follow us on
twitter @AASC2 or check out our
facebook Asbestos Awareness & Support
Cymru we also have an active website
www.a-a-s-c.org.uk Get Wales talking
about asbestos and mesothelioma and
lets support one another!
Workers’ Memorial
Day 2015
In Great Britain, up to 50,000 of
us die every year in preventable
incidents or illnesses caused by
work. Deregulation, ‘austerity’ cuts,
and attacks on workers’ rights are
letting employers get away with it.
On 28 April in Manchester, trade unionists
and the families of those killed attended
an event to ‘remember the dead and fight
for the living’. This year the focus was on
preventing people being killed or made
ill at work by hazardous substances like
asbestos. Members of GMAVSG attended
and Christine Alderson spoke movingly of the
loss of her husband Robert to mesothelioma.
Visit our website at
www.asbestos-victims-support.org
The History of
Asbestos
Most people nowadays know that
asbestos is a danger to your health
– but how much do you know about
the history of asbestos? Ask a friend,
and they might say that asbestos
was an industrial discovery of the
20th century.
But in fact, the history of asbestos goes far
beyond that. And it’s a story which could
even be said to mirror the development of
civilisation itself - through Greek and Roman
times to the Mongols, through the Crusades
and World Wars, all the way to the present!
Join us below as we shine a light on the
weird and wonderful history of asbestos.
http://www.asons.co.uk/resources/
the-history-of-asbestos
5
The Asbestos Victims
Charter for Justice
In the UK in 2015 more people will die of asbestos related diseases 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.
and this means that sufferers are often forced to choose
between settling for less during their lifetime or dying with
 Industrial Injuries Disablement Benefit (IIDB) should be the uncertainty of an outstanding claim.
retained and improved. It should also be disregarded for
We believe in the right to decent medical treatment
the purposes of calculating a person’s entitlement to
means tested benefits such as Pension Credits and Local  It is time to review the 2007 Mesothelioma FrameHousing Allowance.
work. The Framework has led to improvements but access
 Posthumous payments made under the Pneumoconio- to the best treatment can still be a post code lottery. That
sis, etc. (Workers Compensation) Act 1979 and the 2008 is why the uptake from a revised framework must be made
mandatory.
Diffuse Mesothelioma Scheme should be made at the
same rate as in life payments.
 Every area of the UK should have a specialist mesoWe believe in Welfare Justice
 Constant Attendance Allowance should be automati-
cally awarded at the intermediate rate where IIDB has
been awarded for mesothelioma or lung cancer.
We believe in fair a compensation system
 Payments from the Diffuse Mesothelioma Payment
Scheme should help all asbestos victims. All people who
have had payments should receive 100% of average
awards, all prescribed asbestos related diseases should
be covered by the scheme and the scheme should be put
on a sound financial footing. The levy on the Insurance
Industry should be written into law at a minimum level of
3%.
 People who are suffering from lung cancer which has
only developed because of exposure to asbestos should
be treated in the same way as mesothelioma sufferers
when making a civil claim. We believe in amending the
2006 Compensation Act.
 Compensation claims which are settled when the suf-
ferer is alive should be treated in the same way as those
settled after death. Currently they are treated differently
thelioma nurse to ensure the spread of best practice.
We believe in properly resourced medical research
 The UK is becoming a world leader in medical research
into asbestos related diseases. We believe in ensuring this
continues by putting in place a sustainable, ongoing
source of funding.
 Part of that funding should be provided by the monies
raised by the use of recovery of benefits legislation on
Diffuse Mesothelioma Payment Scheme payments.
We believe in preventing future tragedies
 We need a national public information campaign on
the dangers of asbestos in the workplace, home and
public environments. We need a tough regulatory
framework that ensures people who break the control of
asbestos regulations get prosecuted.
 We need to address the issue of asbestos in schools.
We need a national audit of all schools to identify the
presence and condition of asbestos and a long term policy
to eradicate asbestos from our schools.
I support the Charter for Justice:
Name: .................................................................... Position (if applicable): .......................................
Address: ..................................................................................................................................................
................................................................. Post Code: ............................................................
Email: ......................................................................................................................................................
Please return to the Asbestos Victims Support Groups Forum UK, 138 Digbeth, Birmingham, B5 6DR
or email [email protected]
6
Judge Makes Highest Award for
Pain and Suffering to a Trainee Nurse/
Healthcare Support Worker
Harminder Bains, Partner at Leigh Day, dealt with Mrs Ghoorah’s case. Her
husband died from mesothelioma as a result of being exposed to asbestos at
various hospitals throughout Essex, including St Margaret’s, Runwell, Harold
Wood and Little Highwood. Mr Ghoorah worked as a trainee nurse and
healthcare support worker between 1993 and 2003.
In some of these hospitals, he was
exposed to asbestos by pipes lagged with
asbestos leading from radiators along the
walls, corridors and ceilings of the hospitals
and, in addition, whilst living in nurses
accommodation.
Sadly Mr Ghoorah was only 45 years old
when he died. The Judge awarded a
substantial sum to ensure that Mrs
Ghoorah and her two young children have
enough money to take care of their financial
needs for the rest of their lives.
Harminder Bains said: “This was a sad
case as Mr Ghoorah was a medical
professional who spent his life taking care
of the sick. Yet his employers seemingly
disregarded his health and safety.
I admire Mrs Ghoorah. She is also a medical
professional and the Judge said he was
impressed by how she had shown great poise
by continuing with her career and managing
to look after her two young children”.
In addition to awarding compensation to
include loss of earnings, cost of childcare,
the Judge recognised the pain and
suffering which Mr Ghoorah endured and
awarded the highest sum for pain and
suffering made to a victim of mesothelioma
in the UK.
Photograph shows the Ghoorah family.
Chalkboard
TV have been
commissioned by
major broadcaster
to make a new
6x60 min series.
My Wonderful Life (working title)
will give people who are dying the
opportunity to take control over how
they say goodbye to family, friends
and others who have touched their
lives in a unique and special way. The
series has the support of the National
Council for Palliative Care, which
leads the Dying Matters coalition.
For further details contact:
Harminder Bains
Partner
Leigh Day
Tel: 020 7650 1166
E-mail: [email protected]
About me! Caroline Barry
– Welfare Benefits Adviser
Each episode will feature one main
contributor. We will help them record a series
of personal and distinct messages; to arrange
for the delivery of gifts and organise surprises.
All of which are delivered to the intended
recipients after that individual has died.
I have recently taken up the newly created role of Welfare
Benefits Adviser with Mesothelioma UK. The post is a joint
venture with the Citizens Advice Bureau in Leicestershire.
I have worked with CAB for almost 7 years
and during that time I have been involved
in advising clients on welfare benefits and
helping them through what can only be
described as a complex maze of rules and
regulations. The skills and knowledge which
I have built up during this time will prove
invaluable in taking up this new position.
In addition, I have the support of our team
of specialist caseworkers within CAB who
have a wealth of knowledge of the welfare
benefits relating to cancer patients.
through the benefits system is a daunting
prospect for anyone, but when you are ill
it can sometimes appear overwhelming. I
believe passionately in helping people to
access the benefits to which they have a
legal entitlement.
I have a base at Glenfield Hospital in
Leicester and will be able to visit clients at
home who live within travelling distance of
the city. For those of you who live further
afield, I can be contacted by telephone or
email (see below). Trying to work your way
If you have a concern about a particular
benefit issue or just feel that you don’t
really know where to start, then do please
contact me through the Mesothelioma UK
helpline Tel 0800 169 2409 or email me at
[email protected]
It is a privilege to join such an
enthusiastic and dedicated team here at
Mesothelioma UK and I am very much
looking forward to taking on the new
challenges this post may bring.
My Wonderful Life (wt) aims to help
facilitate ordinary people to talk about their
life and experiences, and leave a personal
memorial of their own choosing, in their
own words, for those they have known and
loved. The tone of the series is deliberately
warm and life-affirming, celebrating lives in a
meaningful and uniquely individual way.
We are in the early stages of production, and
with the help of Mesothelioma UK, are keen to
speak to people with a terminal diagnosis of
approx. 3 – 12 months as part of our research.
All conversations are held in strict confidence,
with absolutely no obligation to be involved.
If you would like to find out more information,
please speak to Liz Darlison at Mesothelioma
UK, or alternatively you can contact the
production team directly on 020 8237 1167
/[email protected]
7
Research funding data highlights weak level of Mesothelioma funding
Researchers at the University of Pennsylvania have found that the drug Pembrolizumab, which seeks to block
Programmed cell death protein 1 (PD-1), and was recently approved in the United States for the treatment of melanoma,
has achieved significant positive results in trials in controlling pleural mesothelioma
The researchers conducted a trial using 25
patients with mesothelioma whose
tumours had tested positive for PD-1, and
found that in 76% of the patients tumour
growth was either stopped or in some
cases reversed.
It is always to be welcomed where a drug
developed for one type of cancer can be
found to have positive results in the treating
of other types of cancer, but having said
that, when we consider mesothelioma for
example, such positive developments
should not distract from the clear need for
dedicated mesothelioma research.
With Pembrolizumab being specifically
developed for the treatment of melanoma this
provides us with a useful link into actually
contrasting melanoma and mesothelioma
data. Why it is useful to select melanoma as a
comparator for mesothelioma is that whilst in
the UK there are far greater numbers of those
contracting melanoma than mesothelioma,
mortality rates for both are quite similar.
However, when it comes to the provision
of research funding for melanoma and
mesothelioma there are stark differences
between the two.
I am very grateful to Dominic Dwyer of the
National Cancer Research Institute (NCRI)
for providing the valuable data that has
enabled this comparison to be made. The
NCRI collates data from 22 partner
organisations who provide cancer
research funding, such partner bodies
include the Medical Research Council,
Cancer Research UK, Macmillan and
Marie Curie Cancer Care, but do not
include the British Lung Foundation.
The table below shows that in every year
listed, research funding for melanoma
provided by the 22 partner organisations is
far in excess of what has been provided
for researching mesothelioma.
There are two research funding figures
shown in the NCRI box, the main figure
By looking at the funding and mortality data
for 2012, the year in which we have the
highest recorded level of research funding
provided for mesothelioma by the NCRI
partner organisations, whilst perhaps crude, it
does arguably however highlight the genuine
paucity of funding for mesothelioma.
relates to the total level of funding
provided by the partner organisations for
cancer research. The smaller bracketed
second figure is for research funding
which can be clearly identified as being
provided for a specific condition. The
difference between the two figures relates
to research funding that is not condition
specific and as such could theoretically
benefit the treatment of any cancerous
condition, although without specific
analysis of individual projects no more
than this can be said.
In 2012 there were a total of 161,823 deaths
from cancer in the UK. From our tables we have
the deaths from mesothelioma as being 2535
and melanoma 2281. The percentage of
mesothelioma deaths as a proportion of all
cancer deaths for that year is 1.56% and for
melanoma the percentage is 1.4%. If we were to
use these percentage figures as a basis for
calculating research funding we find the following:
The mesothelioma research funding
boxes also contain two figures, the larger
main figure includes both mesothelioma
only research funding and funding for
projects that seek to research both
mesothelioma and lung cancer; these
dual projects have been included on the
basis of a 50-50 funding split between
mesothelioma and lung cancer. The
second bracketed figure is for
mesothelioma only research funding.
1.4% of £507.3 million = £ 7.1 million
(1.4% of £220.3 million = £3.1 million)
1.56% of the total NCRI Partner funding of
£507.3 million = £7.9 million (1.56% of the
total specific cancer funding of £220.3 million
= £3.4 million).
Contrast these hypothetical figures with the
real levels of research funding provided:
Mesothelioma £1,220,682 - £7.9 million
= a shortfall of £(6,679,318); or using the
cancer specific funding data a shortfall of
£(2,179,318).
Melanoma £5.9 million - £7.1 million
= a shortfall of £(1,200,000); or using the
cancer specific funding a positive balance
of £2,800,000.
2002
2003
2004
2005
2006
2007
NCRI (Total
Cancer Funding)
£257.5m
(£103.7m)
£257.5m
(£103.7m)
£304.4m
(£114.5m)
£348m
(£127.8m)
£392.7m
(£158.7m)
£423.3m
(£173.8m)
Lung Cancer
Funding
£3.5m
£4.3m
£4.9m
£5.7m
£6.1m
£7.8m
Meso Funding
£139,124
(£55,094)
£299,687
(£231,359)
£395,105
(£293,963)
£335,540
(£234,398)
£632,938
(£517,116)
£549,226
(£433,404)
Melanoma
Funding
£2.9m
£2.9m
£2.5m
£3m
£3m
£5.4m
Meso Deaths
(HSE)
-
-
-
-
-
2176
Melanoma
Deaths (ONS)
-
-
-
-
-
2169
Meso Funding as
% of Lung Cancer
Funding
Predicted Cancer Survival Rates
(ONS - 30 October 2014/Cancer Research UK):
3.9%
7%
8%
5.9%
10.4%
7%
2008
2009
2010
2011
2012
2013
2014
1 year 5 years 10 years
Melanoma 97.3%90.2%89.5%
Mesothelioma41.4% 6.9% N/A
NCRI (Total
Cancer Funding)
£480.5m
(£193.8m)
£491.4m
(£201.1m)
£504.3m
(£203.9m)
£521.4m
(£221.1m)
£507.3m
(£220.3m)
£502.8m
(£222.7m)
£498m
(£229.9m)
Lung Cancer
Funding
£9m
£10.2m
£11.8m
£11.5m
£14.8m
£14.1m
£15.3m
Meso Funding
£574,964
(£424,297)
£588,380
(£437,744)
£712,001
(£561,334)
£382,638
(£346,545)
£1,220,682
(£1,172,282)
£893,739
(£858,876)
£819,793
(£796,115)
Melanoma
Funding
£5.5m
£4.2m
£4.9m
£5.5m
£5.9m
£7.1m
£7.5m
Meso Deaths
(HSE)
2265
2336
2360
2311
2535
-
-
Melanoma
Deaths (ONS)
2113
2158
2275
2329
2281
2470
-
Meso Funding as
% of Lung Cancer
Funding
6.4%
5.7%
6%
3.3%
8.2%
6.3%
5.3%
8
Interestingly, £7.1 million was the exact figure
that was provided for melanoma research in
the following year – 2013.
It is also illuminating to look at recent data
that has been produced by the Office for
National Statistics and Cancer Research UK
which shows the variations in survival rates
between different cancers. The figures for
melanoma and mesothelioma starkly differ.
Figures produced by Cancer Research UK for
melanoma survival rates for those diagnosed
in 1971/72 showed:
1 year survival: 81.4%
These figures show the dramatic improvement in
survival rates for melanoma that has been
achieved, and of course it must be questioned
what could be achieved in regards to
mesothelioma survival rates if sufficient continuous
funding were to be made available for research.
NEW TRIAL
VERASTEM
VS-5584
Ongoing clinical trial for a
combination of two oral
investigational medications known
as defactinib and VS-5584 for
patients with pleural or peritoneal
mesothelioma. Defactinib and
VS- 5584 are investigational
medications and have not been
approved for sale or routine treatment.
The trial sponsor, the company Verastem,
wants to find out if treatment with a
combination of defactinib and VS-5584
is safe, tolerable and has potential to
help people with relapsed malignant
mesothelioma.
Cancer stem cells may cause tumor
growth. We believe that defactinib and
VS-5584 target cancer stem cells. The
combination study will help find out
whether defactinib and VS-5584 could be
a safe and potentially effective approach
for treating relapsed mesothelioma. If
you qualify for the study, you will be given
defactinib as two pills twice a day and
VS-5584 on Monday, Wednesday and
Friday. The dose of VS-5584 that will be
administered depends on the status of
the trial. An estimated 50-60 patients will
participate in this study at centers in the
US and the UK.
This study is comprised of 2 sequential parts:
· Up to 6 dose levels of VS-5584 are
studied in Part 1 (Dose Escalation of
VS-5584) in combination with a fixed
dose of VS-6063 at 400 mg twice daily
(BID) with a maximum of 6 subjects
enrolled per VS-5584 dose level, for a
total of up to 36 subjects.
· Up to an additional 20 evaluable subjects
may be enrolled in Part 2, the expansion
portion of the study. Subjects will be
treated with VS-5584 at the recommended
Phase 2 dose and schedule determined in
the dose escalation portion of the study in
combination with a fixed dose of VS-6063.
You may be eligible for the study if you have
either pleural or peritoneal mesothelioma
and meet all of the following requirements:
· You have received at least 3 cycles of
front-line chemotherapy consisting of
ALIMTA® (pemetrexed) + cisplatin or
carboplatin (platinum)
· Archival tumor tissue available for
biomarker analysis or willing to give
consent for a pretreatment biopsy
If you are potentially eligible you would
be given an informed consent form to
read and sign. You would then attend a
screening visit, followed by study centre
visits until you stop treatment.
For further details on the study visit
requirements and a list of UK sites
enrolling for this study please use the
following link:
https://clinicaltrials.gov/ct2/show/
NCT02372227?term=5584&rank=2
Nurses Education Sponsorship
As many will know the NLCFN annual meeting takes
place on 19 and 20 November 2015 in Windsor.
Slater and Gordon has funds available to support
Lung Cancer Nurses attending the meeting.
If you would like to access these funds please contact
Dominic Smith, email: [email protected]
or tel: 0161 383 3527
Alan McKenna,
Associate Lecturer at University of Kent
9
Mesothelioma UK Charitable Trust 1126083
Fundraising News
Well ‘Spring has definitely sprung’ and
our lovely fundraisers have sprung into
action yet again to raise awareness
and support for the charity.
Cakes have been
baked, tea has been
sipped, marathons
have been run,
mountains have been
climbed and treks
have been trekked!!
What a wonderful
bunch of inspirational
people you are, but
please remember
your stories and
pictures are powerful so please send them in.
You can email your pictures in jpeg format with
your stories at [email protected].
We can help support you in all types of events by
supplying materials which will help promote your
chosen challenge, all you have to do is give us a
ring on 0800 169 2409. Your support is amazing
and the funds you raise go towards the vital
services we provide including our new research
projects and funding for our Mesothelioma
Specialist Nurses. The charity relies totally on
donations and sponsorship and to help us with
this we now have information on how you can
support us in our new Wills and Legacy leaflet,
contact our freephone helpline for your copy.
Action Mesothelioma Day
Ever since 2007 Mesothelioma UK have been
involved in the Action Mesothelioma Day
campaign which takes place across the UK each
year in July. All organisations involved are actively
helping those affected by Mesothelioma and
most importantly, we want people to get talking
about Mesothelioma and about the deadly effects
of asbestos that are still with us today. This year
Action Mesothelioma Day takes place on Friday
3rd July and if you are holding an event whether
it be a coffee morning, afternoon strawberry tea
or conference to raise awareness in your area do
please tell us about it and don’t forget to send
your stories and pictures for the next newsletter.
Mesothelioma UK will again be jointly organising
the Leicester event along with the Derbyshire
Asbestos Support Team so if you live close by
please do come and join us at the Leicester
Cathedral for a service of Reflection and Hope.
To register please contact us on 0800 169 2409
or email: [email protected]
Asbestos is a naturally occurring, fibrous silicate mineral that was imported
into the UK and was used in a variety of products for different industries.
Since 1992 it has been illegal to use asbestos in the UK to make any
new products and in 1999, the selling and fixing of asbestos containing
materials was banned.
Linda Lakin’s ‘A Bit Of A Do’
“In February of 2014 I was diagnosed with Mesothelioma
following 4 years of recurring bouts of pleurisy. It is a
terminal cancer caused by exposure to asbestos - in
my case a very low level exposure. More importantly it is
incurable and there is very little treatment available. It is
generally only people affected by the disease or who have
worked in asbestos industries who are aware of it and
it has so far not been supported by extensive research.
Problems are compounded by the extended latency of
the disease with typical manifestation 30-40 years after
exposure. Typically, victims live less than 3 years from diagnosis but I am hoping to be in the
5% of people who live longer. I had successful radical chest surgery in March but now it is a
waiting game. The only certainty is that it will come back, we just don’t know when. I have
regular CT scans to monitor it and when the time is right I will have chemotherapy. After that
we run out of options. Mesothelioma UK provides specialist nurses around the country to
support suffers of this terminal disease throughout their journey. My journey is just beginning
but I know that they will be with me to the end. They will support me through chemotherapy
when the time comes, help me find alternative treatments if the need arises and help me to
deal with it all. I see the specialist nurse assigned to my area regularly and gain support from
social functions organised by the charity for others travelling their journeys.
So I decided to organise a Charity Ball fundraiser and called it ‘A Bit of a Do’. I held it at
the Leicester King Power Football Stadium the home to Leicester City Football Club.
The evening was a huge success of Drinking, Dining and Dancing and everyone had a
wonderful time in celebrating my first year living with mesothelioma. I would like to thank all
my guests for their wonderful support and to those that sponsored the wonderful prizes
for the raffle and auction and on the night we raised a wonderful £2,933.76.
Michael Parson
“I ran the Blackpool Marathon on 26th April 15 in memory and in
tribute to a great man and for a great cause. On 10th May 2014,
Graham Ralph, (my father-in-law) lost his battle with Mesothelioma,
a rare form of cancer which is a result of exposure to asbestos.
As a way of honouring him, I took on the challenge of running the
marathon to raise funds and awareness of this fatal illness.
Jill Lemon
Fundraising & Marketing Manager
I have been training hard and losing considerable weight in
preparation for the challenge, which whilst daunting, was well
worth it. The race was tough and I was a little disappointed with
my time, but successfully finished it (my first ever marathon)
feeling fairly proud of myself and my family and friends in
particular my wife and mother-law were very proud of me. The
following week was sore but I have made a full recovery from it.
Next year l will be looking for a new bigger challenge.”
Michael raised a wonderful £800.00.
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
10
Action Mesothelioma Day 3rd July 2015
Are you Asbestos Aware?
Are you aware of your work environment?
Residential
Property
Is there asbestos in your work area?
Does your workplace have an Asbestos
Managing Policy?
Ask the questions, don’t put yourself at risk.
Remember to ask your children’s schools
about their asbestos management.
Visit the HSE website for more information
on staying safe…
But did you know asbestos is still a danger
today! it’s in the fabric of our buildings, it’s in
homes, schools, hospitals, public buildings
and places of work. It comes in many forms
from lagging on pipes and boilers, soffit
boards, ceiling panels, textured coatings,
vinyl floor tiles, asbestos paper on wood
fibreboards, putty, asbestos cement, flat or
corrugated roofing sheets, gutters, water
tanks, rainwater pipes and the list goes on.
http://www.hse.gov.uk/search/searchresults.htm?q=asbestos#gsc.
tab=0&gsc.q=asbestos&gsc.page=1
Pictures courtesy of HSE.
Industrial
Property
Are you a DIY enthusiast, would you be
able to recognise it? If the answer is no
or you have any doubt then don’t touch it,
speak to your local council and look on
the HSE website. Take Care and be
Asbestos Aware.
Jodi with the help of her friends and colleagues held a ‘Bake
and Cake Sale’ at the Glenfield Hospital theatre staff room to
help raise awareness about a forthcoming challenge that she is
taking part in ‘The Leicester to Skeggy Charity Bike Ride’.
Tim Argyle who is a close friend of Jodi has organised this epic
challenge in memory of his dear Dad, Geoff Argyle, who sadly
died of mesothelioma in August 2013. There will be 15 riders
taking part in the challenge backed by a wonderful support
team. The Charity Bike Ride is taking place in June.
The cake sale was a huge success and Jodi raised £405.00 and
with gift aid has taken it to £506.25.
The Diffuse
Mesothelioma
Payment Scheme,
initially introduced in
April 2014, allows
those diagnosed
with mesothelioma,
but who are unable
to make a claim against their former
employers, to seek compensation.
Generally speaking, there is a gap
of many years between asbestos
exposure and diagnosis. It is a common
problem that by the time a claim
is investigated, a claimant’s former
employers are no longer in business.
In those circumstances a claim can
only be made if employer’s liability
insurance can be found. Searches can
be submitted to the Employers Liability
tracing Office but it is not always
possible for a policy to be found. The
Diffuse Mesothelioma Payment Scheme
was introduced to deal with this issue.
Initially the payment made under the
Scheme was 80% of the average
amount awarded in civil claims. It
was however announced on the 10
February 2015 that the amount will be
increased to 100% for those diagnosed
on or after 10 February 2015.
Although the increase in payment
will apply to those diagnosed as
of 10 February 2015 the payment
process will only take effect when the
Regulations become law next month.
Jodi Pickering – Baking Cakes to Support
Our Leicester to Skeggie Bike Ride
Jodi said “I work in the thoracic surgical theatre at Glenfield
Hospital and over the last couple of years it is becoming
really evident just how many people there are suffering with
mesothelioma and then when Tim’s Dad was diagnosed with
it was when it really hit home, so that’s why I and others have
become involved in raising awareness about this awful disease.
Increase in payments
under the new
diffuse mesothelioma
payment scheme
A Statement was made by the Minister
for Disabled People, Mr Mark Harper
in which he stated that, “the number of
Claimants has proven to be below the
level anticipated”, hence the ability to
increase the payments.
Whilst pursuing a civil claim remains
the preferred option, the Scheme
offers some compensation to anyone
precluded from making a claim
because no paymaster can be located.
Anyone diagnosed with mesothelioma
should continue to consult a specialist
lawyer who will be able to advise on
the making of a civil claim and any
payments under the Scheme.
Nick Story
Partner, Boyes Turner Industrial Team
11
Jackie and Richard Elsom - Fund Raising
& Awareness for Mesothelioma UK
My husband Richard was diagnosed with Mesothelioma in March 2011 and today
is still striving forward, albeit at a much slower pace. We have been so grateful for
the continued support we’ve received from both Papworth and Addenbrooke’s
and of course the amazing Support Group attached to Papworth.
Whilst making
our memories
and making sure
I enjoy every
moment with my
husband of
nearly 43 years,
we have also
been aware as a
family of the need and opportunity to raise
awareness of this dreadful disease and if possible
raise money too.
In 2012 our grandchildren wanted to do
something and we all decided a ‘Fun Run’ would
be a good starting point. That rainy May Day Bank
holiday a hundred local children joined us on a
green near our house to scoot, cycle, skate and
indeed run round and round. A lot of money was
raised and we gained local coverage in the
newspapers. Chemotherapy and clinical trials, plus
just having fun have filled our time, but late last year
I started to think again about what we could do.
The idea came to me that at Christmas time we
all like to get out and fill our lungs and have a
breath of fresh air. For a patient suffering from
breathing problems, even short festive walks
can’t be taken for granted. I contacted Liz
Darlison and very quickly I was introduced to Jill
Lemon, who helped me set up a ‘Just Giving’
page. I called it ‘Meso 100 Campaign’ as I hoped
people would do the first hundred steps of their
walk and donate just a penny a step.
Within days I was on ‘Twitter’ and ‘Facebook’
and the campaign took off. I have to admit, I was
social media novice so, let loose with this
amazing tool, I did what a child would do and just
played about with it. I tweeted anyone I found on
Twitter; rich, famous, sports people & Olympians.
Princes Charles, William and Harry and lots of
Politicians all got tweeted. I got responses from
the local politician - one asked me to keep him in
the loop as he was often asked what his party
would do for Meso.
Facebook went global and with that I found a whole
community out there; people who are actively
campaigning for funding and research. It was an
amazing experience for the whole family. My twelve
year old grandson said, ‘Grandma I cannot believe
you tweeted Harry Styles’. I hadn’t realised they
were all watching me every step of the way.
The weeks prior to Christmas meant a trickle of
money came in. Considering how much families
are already asked for at Christmas, I wanted it to
be a small, affordable amount and one pound
seemed reasonable. As the New Year
approached, I was approached by our local
‘Cambridge Newspaper’ and asked if I would do
a piece for the paper to go out on New Year’s Day.
I felt that a young family living close by would be a
far better story - Paul was only 36 and had a little
12
boy of 4 years old. The paper did their story on us,
giving us a full front page, which with a little boy
and his dad was a truly remarkable start to the
year. The story ran for several days in all the free
papers and the editor also wrote a marvellous
caption saying well done to these two brave
families, which gave all of us a tremendous lift.
That seems a while ago now and although over
£2000 pounds has been raised for Mesothelioma
UK, I feel it has a life still. Recently I watched the
story of the ‘Dime March’ for Polio back in the
1950s and how it was people power that raised
money and awareness that forced the
government to get involved. My own brother had
polio and of course, I like most people of my
generation remember outside shops there was
always a collection point for pennies with a child
wearing callipers with crutches. I remember
always asking for a penny to put into the slot.
Polio is now eradicated in the modern world. It
reminds me of the story of asbestos; it too could
be eradicated, with everyone aware of how it
affects human lives and devastates families. It
needs the same determined approach that Polio
got back in America in the 1950s.
Asbestos will leave
a long legacy of
people suffering
Mesothelioma and
similar diseases as
it still exists in many
buildings today.
Young DIY
enthusiasts may unknowingly be exposed to
asbestos. School children and teachers are
becoming more aware of their environment.
The new government needs to take this enormous
challenge on. I wrote to our outgoing MP asking
why they pledged 50 million pounds for the new
Holocaust Memorial, when they could have
instead donated the money to make ALL schools
safer places for the next generation. Each school
could have made their own memorial garden with
some of the money, allowing children to learn
about history at the same time. He replied thanking
me and in particular my comments on ‘providing
ongoing safety measures in schools and
workplace for future generations’. More walks,
more marching and more making a noise to the
new government seems a good place to start.
July 3rd is Action Mesothelioma Day and I hope
many people will take this opportunity to join a
small walk whether at school or at work and raise
awareness and perhaps a few pennies. More
information will be available in due course.
www.Justgving.com
/Mesothelioma-UK-CharitableTrust
Twitter: @meso100 campaign
Facebook: Meso 100 Campaign
Kevin Watkins and
ex-work colleagues
and friends from 360
Assurance ‘RunandWalk’
with Linda Lakin.
“Well, this
slightly more
detailed
account
of the
fundraising
walk and
run just missed the 3rd edition of ‘The Circle’
but you can blame year-end for that I’m
afraid. On the plus side at least it includes a
picture of everyone who took part in the event,
which to date has raised £683.00 plus an
additional £147.00 in gift aid, the vast majority
of which will be added to the total passed
on to Mesothelioma UK by Justgiving.com. I
say ‘to date’ in the hope that this article and
the ‘Rogues Gallery’ that is the photographic
evidence of the day may prompt those who
may have meant to visit the website but have
so far forgotten to do so. (It’s www.justgiving.
com/360runandwalk by the way).
Anyway on to the event: Tim, Susan and their
friend Denise did a great job in hiring the village
hall, laying on hot jacket potatoes and drinks
for all involved. Everyone who came brought
some food with them in our usual ‘fuddle’
style, which meant of course that by the time
we had all finished eating any positive impact
of the exercise we’d got on the walk and run
was well and truly lost!
We were very pleased that Linda was able
to be with us, fresh from the success of
the Charity Ball that she organised for the
previous weekend. As reported in ‘The
Circle,’ she is hopeful that the Ball and
our Health & Wellbeing Event will raise
a combined total of around £4,000 for
Mesothelioma UK by the time the tax is
reclaimed on donations made. So many
thanks to all who took part in the run and
walk, those who sponsored us and to those
who were able to attend Linda’s Charity Ball.
You can see from the photo (check out Andy
‘professional runner’ Mellor – the only one
brave enough to wear shorts) that quite a
few joined the walk (including some with 4
legs), which at around a couple of miles was
just right for Leanne’s and Ruth’s children
who came along. Andy, Leanne, Kevin and
Kevin’s brother Mark tackled the run, which
was just over 4 miles. Predictably Andy left
the others for dust and quickly vanished into
the distance, whilst Leanne pulled into a clear
second with about a mile to go, leaving Kevin
and Mark to bring up the rear. Everyone had
a great time and there’s talk of organising
something similar in the future. If anyone has
any ideas or suggestions about what we
could do next (preferably with a healthy theme
in it somewhere!) please email Kevin. He’ll be
giving the H&WB Torch to someone else soon
of course but will make sure any ideas are
passed on”. To date the 360runandwalk have
raised including gift aid a whopping £877.50.
Ross Williams ‘7 Marathons
in 7 Days’ 25th April - 1st May
Go big or go home!”
“This is my 2nd endurance challenge I’ve volunteered to
do & because my family and I have been victims of this
awful rare form of cancer, it means a great deal to me.”
WHY I’M
DOING THIS:
“My Dad
worked as an
Engineer and in
2003 was
diagnosed with
Mesothelioma.
Doctors told
my Mum that
my Dad most
likely inhaled asbestos whilst in his 20s in
the 1970s and unbeknownst to him, the
disease escalated throughout his 30s, 40s
and early 50s. Sadly about 6 months after
he was diagnosed – he was gone. I would
hate to see other families go through the
heartache losing a parent can cause.
Whatever money I raise will contribute to
paying the wages & costs of specialist
nurses who will then dedicate their time to
focus on patients specifically diagnosed
with Mesothelioma. Hopefully you can
appreciate my motivation & donate to give
me a (much needed) boost!
ABOUT THE CHARITY
MESOTHELIOMA UK:
2 key services:
• Promotes development of specialist
nursing practice (i.e. funds specialist
nurses dedicated specifically to this
disease 2 days a week, every week)
• Provides impartial up to date info on
malignant cases of Mesothelioma
“ WHAT IS MESOTHELIOMA & WHAT
ARE THE FACTS?:
* Rare cancer caused by exposure to
asbestos (used in industries such as
engineering and construction) * UK has
highest number of people with
Mesothelioma in the world! * Kills 1 person
every 5 hours in the UK * Currently there is
no cure * 6% of UK population don’t know
what the disease is * 2,500 diagnosed a
year * Survival usually measured in months
rather than years
That’s a Rap!!
“So on Friday I
finished my ‘7th
marathon in 7 days’.
I just wanted to drop
you a quick line to
say thanks for your
support, information about Mesothelioma
UK & encouragement with my challenge.”
Mesothelioma UK opened in September
2004 (having received grants from
Macmillan) 2009 onwards:
• Charity Status (today is 100% self-funded)
• Website gets 2,500 hits a month
(71% are new visitors)
• Free phone line & email service
(2,000 calls/emails received a year
• Newsletter sent to 3,000 contacts
4 times a year
• 11 is the number of specialist nurses today
in the charity dedicated to Mesothelioma
• £20,000 is the cost of 1 nurse a year
• £516,050.60 is the cost of running
Mesothelioma UK per year
Ross has raised a fabulous £5,128.06
including gift aid.
Angela Tod - Walking the Calderdale Way
Over the May Day Bank Holiday weekend I joined a group of
people walking the Calderdale Way. I wanted to raise money for
Mesothelioma UK. Mesothelioma can affect anyone, it is a cancer
caused mostly by exposure to asbestos. Treatment may involve
surgery, chemotherapy and radiotherapy but it does not offer a
cure. With well over 2500 cases a year (and still rising) the UK has
the highest incidence of the disease in the world.
What is Mesothelioma UK? Mesothelioma UK provides specialist mesothelioma information,
support and improved care and treatment. Mesothelioma UK has a small team of nursing
and administration staff who totally focus on addressing issues related to mesothelioma.
Their services are free of charge; they rely totally on donations, legacies, fundraising and
sponsorship for financial support.” Angela raised £315.00
Altrincham Injury
Solicitors holds
cake sale for
Mesothelioma UK
Staff at an Altrincham based Injury
Solicitors held a cake sale and
raised money for Mesothelioma
UK, prompted by the findings of a
report the company commissioned
on asbestos exposure.
The staff at Jefferies
Solicitors, an
industrial disease
compensation
specialist based
in Ashley House,
Altrincham
organised the one-day cake sale, raising £84.00 for
the charity. The survey commissioned to mark thirty
years since the UK banned the import and use of
both blue (crocidolite) and brown (amosite) asbestos,
found that the majority of Greater Manchester based
tradespeople are becoming complacent about
asbestos exposure, despite it continuing to be the
country’s biggest workplace killer.
Regional findings have shown that while two-thirds
of Greater Manchester tradespeople can identify
asbestos and 38% know somebody that has been
affected by the majority of people still believe that
stress is the bigger threat to their health.
Worryingly, only half of the tradespeople questioned
have had training to deal with asbestos, despite 38%
claiming that they have been exposed to asbestos
at some point in their working lives. Michael Jefferies,
managing director of Jefferies Solicitors comments,
“The results of this survey are certainly surprising. We
expected awareness to be much higher about the
risks of asbestos exposure, but in fact, the results
show that tradespeople are becoming complacent
about the dangers. “While asbestos may be banned
from being used in buildings today, it hasn’t gone
completely, which is why we are urging the trade
who think they have been exposed to asbestos to
look at recent government advice on how to claim
compensation. Recent guidelines have changed
which means it’s now easier to claim, thanks to a new
support package available for mesothelioma victims
and their families.”
The team at Jefferies Solicitors, are active fundraisers
who dedicate time to fundraising activity for Headway,
The Christie and The Children’s Adventure Farm Trust.
13
Niamh Sherwood
- Cake Sale & Reading Half Marathon
Niamh held a Cake Sale and raised a wonderful £160.00 and on March 2015 she ran
her fifth Reading Half Marathon. This is what she had to say…. “I wouldn’t have thought
it possible but some truly horrendous photos prove otherwise. The goal as always is to
finish in daylight. This year I will run for Mesothelioma UK a charity which is close to my
heart. I work within an asbestos claims team, where we see the impact of mesothelioma
on sufferers and their families. I want to raise funds for this wonderful charity to show my
support for my clients and their families that have battled this terrible disease.
Niamh raised a fantastic £557.43.
Teresa Chetwynd - Leith Half Marathon
“I decided to run this half marathon at Xmas with a school friend who we hadn’t seen
in years - it’s the nearest one to our home town. I confess the promise of a slap-up
meal after was a sufficient draw but I wanted to make all those muddy miles count.
So this is for my wonderful father-in-law Bob who is making the most of life despite
his diagnosis.” Teresa raised a fantastic £682.63.
Jacqueline & Adam Battersby
“In late 2010, my father-in-law, Michael Battersby
was diagnosed with Mesothelioma, a terminal
disease caused by exposure to asbestos. We
learnt of his terminal diagnosis the day before we
found out we were expecting our second child.
A moment of such joy was dealt a terrible blow.
Mick and his wife of 40+ years had just retired their world cruelly ripped apart. At a time when all
hope seemed lost, Mesothelioma UK helped us
in our quest for information, advice and support. We quickly became aware that the
prognosis was not good, that once the symptoms of Mesothelioma start, people can
have as little as a few months left to live - there was a real possibility that Mick would
not see our child be born. We were all devastated.
Fortunately, other than Mesothelioma, Mike was in good health
and because of this he was offered a pioneering operation that
would enable him more time - all we could hope for was extra
time and that he would be able to see our second child be born.
The research that had been carried out before we even knew
what Mesothelioma was, enabled our wish to come true - for
our daughter to meet her grandfather and for both our girls to
have time with him before he died. This operation gave him
two and a half valuable years - years filled with heartache, pain
and sadness but also great strength, joy and a sense of valuing every moment as if it
is your last. It meant our children have memories and photographs of them with their
grandfather - and for that we are forever grateful. We are running this 10k for you Dad/
Mick and for everyone else who is diagnosed with this awful, unforgiving disease. We
love you and miss you everyday x” Jacqueline and Adam raised a wonderful £484.25.
Stuart & George Saunders – Road Trip for Grandad
“Me and George made this ride to raise money for
Mesothelioma UK as George’s Grandad was diagnosed with
Mesothelioma recently. We went from our home to Grandad’s
house which is 60ish miles and we have raised £478.75
thanks to all our wonderful supporters.
14
Hayley’s Half
Marathon - 29th
March 2015. I did it!
“March 29th 2015, I ran 13.1 miles
around Colchester in memory
of Pete, my late Step-father,
who tragically passed away last
September of Mesothelioma,
lung-cancer. I’m raising money
for Mesothelioma UK Charitable
Trust; they support, give advice
and run a helpline amongst many
other services, on this terrible
disease. A half-marathon isn’t an
easy race for me, it will be a real
challenge, and I’m hoping to do
a PB (personal best) time. Thank
you for sponsoring me you have
helped me to raise awareness of
this asbestos related lung-cancer
and furthermore, assisting people
who sadly have it. More and more
mature people are now being
diagnosed as it can lay dormant for
decades... Your donations mean a
lot to me and my Mum, who used
Mesothelioma UK for support &
information during Pete’s illness.”
Hayley raised a wonderful £806.46
Just to let you all know Yayyyy I
Done it! I got my PB, finishing in 2
hours, 10 mins and 25 seconds.
Well pleased. :D
Nicola Jobson
“On the 29 March 2014 my Dad passed away. It has been
very difficult to come to terms with and this is my way of doing
something positive. When I was a little girl, I used to do cross
country running at school and my Dad used to come and watch
me. I wasn’t very good and would always get a stitch and want
to stop but my Dad used to run along beside me (with our black
Labrador Bonnie) and encourage me to finish.
I’m still not very good at running but I think that doing a 5k run in his memory and
to raise money for Mesothelioma UK (the cancer he died from) is very fitting. I was
so pleased to have managed to complete this run and thank you to all those who
supported me and helped me to raise well over my target of £500.00.
Love Nic xx
Nicola completed the race and reached her target and has raised a wonderful £732.02.
Helen Rothwell –
Bungay Half Marathon
Kate & Heidi’s Brighton Marathon 2015
My sister Emma and I sadly lost our Dad, Michael
Green, on 20th September 2014. He passed away
from Mesothelioma, an asbestos related cancer.
I am running the Brighton Marathon on 12th April
2015 with my friend Heidi.
I would like to;
• Raise money for Mesothelioma UK
• Raise awareness of this asbestos related cancer
• Remember and celebrate the life of our Dad who lived in Brighton for over a
decade. You can see the finish line from the flat he used to live in :)
Having done the same marathon 3 years ago, I know how tough not only the day is,
but also the training that leads up to the event. Running for this great cause will keep
us motivated during those long and exhausting miles! If we can help other sufferers and
their families in any way at all then each mile will be worth it. Thanks, Kate & Heidi xx
Update from Kate: Unfortunately I have had to defer my place in tomorrow’s marathon.
I’m really disappointed that I can’t take part, especially having done many, many miles
in training. But, it is on Doctor’s orders, and there will be more marathons to run. I will
however be there cheering on the brilliant Heidi, who will still be running it and raising
money in memory of my Dad. A huge massive thank you to her for running it and for
being an amazing friend xxx Kate & Heidi have raised a wonderful £700.12.
Emma Michael – Taunton Half Marathon
Join Action
Mesothelioma Day
Friday 3rd July
2015 at Leicester
Cathedral
I ran in the Taunton Half Marathon in memory of my Grandad,
William Marsh. I ran this 4 years ago (four?!) and this year
I’m hoping to beat my time and break the 2 hour barrier.
Mesothelioma UK is a
charity very close to my
heart and any help I can
give in raising money and
awareness is a step in the
right direction. All donations
were very gratefully received and big thank you’s
to all those that supported me and helped me to
raise a fantastic £318.75.
DONT FORGET THE 2015 MESOTHELIOMA UK PATIENT AND CARER DAY
FRIDAY 2ND OCTOBER 2015 - ALVASTON MANOR, STRATFORD UPON AVON
“My mum, Mary
Artherton was
diagnosed with
Mesothelioma
aged just 58.
At the time, she
was working
as a nurse for
an end of life care hospital, Priscilla
Bacon Lodge, specialising in palliative
care for patients who have advanced
progressive diseases, including
various cancers. Mum had been
nursing since the age of 17 and she
recalled how she was exposed to
asbestos lagging on the pipes in her
hospital, breathing in the asbestos
dust whilst working in the operating
theatre and cleaning between cases.
Visit: http://www.nursingtimes.
net/the-lethal-legacy-ofasbestos/1975685.article When
diagnosed she had her first grandson
on the way, James, and amazingly
she held on for the arrival of her 2nd
Grandson, Thomas; we rushed from
one hospital to see her in another.
She died 5 weeks later, aged 60.
My mum was very caring, and she
always put others first. At the time of
her diagnosis she campaigned for
asbestos to be removed from public
buildings, to mirror the fact that it
was then being removed from the
Houses of Parliament. She called for
a national register now implemented)
and removal of asbestos to
safeguard future
generations
from this terrible
disease.” Helen
completed her
run and raised
an amazing
£635.00.
15
Michelle’s Asics Greater Manchester Marathon
“I’m running in memory of my dad for Mesothelioma UK
Charitable Trust because he is sadly missed and always in
our thoughts xx After completing my first ever marathon
last year I didn’t think I would do another, it was probably
the hardest thing I’ve ever done! My knees didn’t recover
till about September. However, it’s that time again and in
a moment of madness I’ve entered again. I’m even more
anxious this time as I know what’s ahead! I’ve been hard at
work training. My long run on a Sunday sees me getting up at 05:10 am and running
past Clowbridge Reservoir and then back home. The weather is usually extreme,
rain, snow, hail and wind all in one run. What keeps me going is knowing that my dad
would be proud of me and all of us for raising money for Mesothelioma UK. It is a small
charity for people with asbestos cancer and relies solely
on donations from fundraisers. It also keeps me going and
knowing that I am running towards my dad’s resting place
at the Life for a Life at Clowbridge Reservoir. Thanks again,
I really appreciate your donation, any amount adds up and
last year it was amazing to think that together we raised over
£2000. X.” Well Michelle sadly was unable to take part in the
race through ill health but she raised an amazing £936.25.
Amy Capes, Emily Clark, Wade Cruse, Joe
Power, Nick Rice, Paul Jackson, John Lough
– DHL - Heart of the Wolds Sportive
THE RIDE: The Classic (100km)
“Our Classic route was a real tour de force of the highest
sections of the Wolds, offering a stern physical challenge
to cyclists of most abilities as well as breathtaking scenery
from the rolling peaks. After the modestaround the Great
Wolds Valley, the route past Sledmere sees both climbs
and descents increase in severity and our bike handling
was tested at various points.
The rewards though for these endeavours, are substantial, with most of this route
along largely traffic free single lane roads which wind along deep dales giving a sense
of freedom and joy. The sections into Thixendale and out of Millington were to be
particularly savoured. After Huggate we were grateful for the long descent back into
Driffield and a well earned rest. £455.00.
Andy Hart & Steve Jones
- London Marathon
A few words from Andy…“As part of my drive in 2015 to
improve my overall fitness and wellbeing, I applied to run
the London Marathon (26th April) and to my shock and
surprise I was successful in the ballot!”
My training has started in earnest and
is going well with Mr Steve Jones.
“Although I was successful in the normal ballot, I decided
to run for 2 charities, both of which are very personal to me
which are Mesothelioma (Asbestos related cancer) and the...
Alzheimer’s Society (Dementia) with the help of my wonderful
family, friends and colleagues I have managed to raise a
wonderful £400.00.”
16
Laura Davidson London Marathon
When I started the application
process to run / shuffle the Virgin
London Marathon I thought it
would be a bit (understatement)
of a challenge and thought I’d
raise some money along the
way. That was until the week
before Christmas 2014. My family
were given some shocking and
devastating news about my lovely
Father, which totally changed my
reason for running. Pops has been
diagnosed with Mesothelioma,
which is a cancer that can develop
after being exposed to asbestos.
So, I’ve made it my mission to try
& raise as much money as I can
for Mesothelioma UK & Macmillan.
So many people are affected by
this vile disease that is cancer
and not much is known about the
type of cancer that Pops has. So
with the help of my lovely family
and friends I was able to raise a
wonderful £2,339.50.
Charlie Culpan –
London Marathon
£850.00
“On Sunday 26th April I will try
and complete my eighth London
Marathon, things do not look
good, due to injuries. Broken
this, torn that, no cartilidge and
only trained up to 10 miles. I
should really pull out but I lost
my fantastic father last year to
Mesothelioma, a nasty asbestos
disease and he did not even work
with it, please be generous as
this is going to hurt. Also this is
my last charity raising but, you all
either have kids or grandkids, so
you reap what you sow!!! I really
appreciate all your support and
thank you for any donations”.
Well Charlie did it, he ran the course
and raised an amazing £1,181.75.
Emma Malcolm – Brighton half, Wimbledon
half, Surrey Tempest 10, Maidenhead 10,
Frimley10K and BUPA 10K
As my family and friends will know I’m a runner, and with
my Dad’s diagnosis of terminal mesothelioma, despite never
knowingly being exposed to asbestos, as a fundraiser, I can’t
not do something to help, so I’m
going to use my runs this year to
raise some money. This money
won’t help my wonderful Dad
sadly, but it might help someone
else’s Dad so please support me
I have already completed the Brighton and Wimbledon Half
Marathons and so far have raised £625.00 thanks to
my fantastic supporters.
Claire Constable & Tori Scott’s Sky Dive
We Jumped for Mesothelioma in memory of my
wonderful Dad, Paul Rolfe because we need to help find
a cure & end the suffering! Mesothelioma is a terminal
cancer very close to my heart. From diagnosis, in just 6
months, my dad was taken too early. The cancer is cruel
& brutal, it is devastating to watch. The only thing we
could do is TRY to make him
comfortable & make it easier
for him to breath. There is no
cure & Mesothelioma UK do not get any government
research funding. I never want to see anyone go through
this again & would never wish it on anyone. Thank you to
all those that have sponsored and supported me and Tori
you have helped us to raise a fantastic £2,008.90.
Lucie Barnes + 2 - Six Legs, Three Barnes and
No Clue...We are taking on the Liverpool Spring
10K, Part II for Mesothelioma UK Charitable Trust
This is their story….“This time last year, the three of us
ran for some very worthwhile charities for the help they
had given to our friends and family. Sadly a year down
the line, we are missing two of life’s lovely soldiers.
This year, we will be running in memory of ‘our Jack’,
and to help raise money for Mesothelioma UK so that
more research can be provided into this unnecessary
illness and how to care for those suffering with it. Jack bravely donated his body to
this cause; Hopefully, we have pulled hard enough on
your heartstrings to contribute without reading further,
however, we are aware that like last year, some of you
are just here to watch us die with embarrassment as
we try to make it to the finish line without collapsing,
turning an unnatural colour, or being beaten by a women
pushing a wheelchair (it happened).
So if you need another reason to dig deep, just imagine the three of us on the day, all
in ‘healthy’ competition, trying not to leg each other up as we aim to cross the finish
line first and be crowned the ‘Ultimate Barnes’. Your faithful gluttons for punishment,
Uncle Kn*b Head, Crazy Cat Lady, and The Smug Married One xx
“Well we did it and with the help of all our supporters we raised a fantastic £1,061.74.
Stephen Parsons Chubby Boys Cycling
the Way of the Roses
7/5/2015
This is Stephens story….“We ‘The
seven mamils (Middle Aged Men
In Lycra)’ Ewen Pearson, Graham
Parsons, Ian Nelson, Simon Bolton,
Rob Grimshaw, Rik Barker and Myself
Steve Parsons will be attempting this
years challenge of cycling 170 miles
from Morecambe to Bridlington for
Mesothelioma UK Charitable Trust
and in memory of my lovely Mum.
This will be the fourth time that
we chubby fellas have taken on
a bike riding challenge. We have
raised money for the British Heart
Foundation and Candle lighters
in previous years so this year we
decided on this ride to support
Mesothelioma UK and I am told
that it is a very challenging route.....
lots of hills!!! Mothers’ day recently
passed and I was touched by the
really nice messages people wrote
on Facebook with dedications to
their mum. My Mum Janet suffered
with Mesothelioma and sadly passed
away in July 1997. She was an
amazing lady. My Brother and I were
very lucky to have somebody like her
to point us in the right direction in life.
We still miss her.” Well they did it and
raised a fantastic £386.25.
It costs £550,000 to run
Mesothelioma UK a year. Your
donations and sponsorship help fund
our dedicated nurses, administration
staff, our helpline, our information
leaflets and our research projects.
Our aim is to make life easier for our
patients and their carers.
17
Ja ne K ing
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– Bat h H a
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- £1,092 .5
Graham Douglass
– London Marath on
- £443.75
Adam Da n n at
– Lo n do n M
arat h on
- £772 .50
Samuel Bolt on
– Reading
Half Maratho n
- £761.41
b e r b atch
Ju d y C um
add li ng
– 30k m P
t h ro ugh
/R o w ing
u ra n o
Ve n ic e & B
- £459.21
Ala n &
K at ie S
p ro u l’s
L a z y As
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– Edin b
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Gary Nadin
– Wilmso w
Half Marath on
- £479.85
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Pau l & An
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– 100k m
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C am b r idg
18
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Laura Batche
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– Daff odil
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18 Mile
- £63.75
L is a H
– L e ic e s a ll am
te r t o S
k e gg y
Bik e R id
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St ac e y
Le a Ke n
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- £625
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Mo r n ing
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ew by
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h es
– Th re e Pe ak
s
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– 10k Ob
- £369.75
Stephe n
Parson’s
– Chubby
Boys Cyc
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The Way
of The R
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– 170 m
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cambe
to Bridli
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m
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of Jane t
Parsons
- £418.7
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t le y
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- £426.5
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– R a is ing
Awa re ne
ss
in No r f o lk
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2 S is te rs,
Day’
One L o ng
Sue Whybrow
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Fe st iv a l
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Martin Holder
– 3 Peak s in 24 Hours
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19
Andrea O’Hagan
Our Dad was known as Tommy Press up’s and was a bit of a legend amongst his
friends and family. A loyal & long time supporter of Liverpool he got the nickname
when the author, Jegsy Dodd of the ‘The Redmen’ [a book about LFC supporters]
wrote about my Dad dropping down and doing 50 press up’s on request!
Our Dad was a
strong, healthy
and a fit 73yr old
who was a
gardener and
managed 23
gardens a week!
My Dad had
strong beliefs,
values & principles that he lived by and that we all
try to follow...He was actively involved in the trade
union movement and was passionate about
fellow workers being protected in the workplace.
In June 2013 our Dad became breathless, his
words to me at the time were ‘I know its to do
with Asbestos’. When admitted to hospital they
found his left lung had filled with fluid and
arranged for him to have a drain put in, they found
he had a pleural effusion! and more tests were
then arranged. My sisters and I began the
relentless research that begins when something
like this happens. We learnt that the worst
outcome would be a diagnosis Mesothelioma.
In August our
Dad was given
that diagnosis
– we were
devastated
and in shock but
it was not a
complete
surprise. Our
Dad had weaved Asbestos at Turner & Newall in
Wigan, a notorious American company who with
knowledge that Asbestos was killing people in
America decided to bring their company to
England were Health & Safety regulations were
very poor. So at 23yrs of age my Dad went to
work and was offered no protection against this
deadly material. Due to his health & safety
knowledge my Dad knew what dangers he had
been exposed to and had said it was like ‘a ticking
time bomb’.
My Dad was fortunate he was cared for by health
professionals at Wythenshawe Hospital initially
who very were aware of the disease and so he
was given appropriate care & treatment.
He began a regime of daily walks and worked
hard at being up-beat and positive. He wanted to
live and was not ready to die!! The prognosis is
6-12 months, our Dad got 8 months and he
fought for every single day of those months.
Our Dad sadly
died on the 1st
March 2015 at
Wigan & Leigh
Hospice
surrounded by
his loving family.
One of his dying
wishes was that
we make sure that we raise as much awareness
as possible so that people kept themselves safe.
He wanted people to be correctly diagnosed so
that they received the appropriate care &
treatment including palliative care and that all
health professionals’ recognised the signs &
symptoms early. He wanted posters in all GP
surgeries raising awareness of mesothelioma so
we’ve written to local MP’s about this and we are
hoping it is something that they will address..
At Christmas time we decided we wanted to do a
challenge in support of our Dads memory which
would raise money and raise awareness of this
disease. We decided that we would walk the
Yorkshire 3 peaks. This is a gruelling 26 mile walk
over the 3 highest mountains in Yorkshire! 15
family & friends did it on the 30th May, it was
tough to say the least, but well worth it. We raised
money but just as important we managed to
talk to people at our places of work. We gave
people information about Asbestos on social
media...we fulfilled our Dads wish!
We miss our Dad so very, very much, he has left a
huge hole in our lives that nothing will ever fill.
However doing this challenge in his memory and
fulfilling one of his last wishes has helped to begin
to heal our broken hearts.
Keep up your good work, you helped us with all
the information and advice on your web-site and
your news letters reminded us that My Dad and
our family were not alone!
DON’T FORGET
THE 2015 MESOTHELIOMA UK
PATIENT & CARER DAY
Save the Date: Friday 2nd October 2015
Where: Alvaston Manor, Stratford upon Avon
Check our website: www.mesothelioma.uk.com
nearer the time for details of how to register or
Tel. Freephone 0800 169 2409
20
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.

Newsletter - Mesothelioma UK

Transcription

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