Newsletter - Mesothelioma UK

Transcription

Mesothelioma UK
Newsletter
Winter Issue 2014
Introducing Nurse
6 - Lorraine Creech
My name is Lorraine Creech
and I am the 6th Mesothelioma
UK Clinical Nurse Specialist for
Greater Manchester and Cheshire.
Welcome to our final
newsletter of 2014, and what a year it has been for the
charity. We really are going from strength to strength.
Debbie Neale is manning the helpline as if she has being doing it for years.
Ghislaine Boyd has settled into her Business Manager post here at HQ!
I am based at
University Hospital
South Manchester
Foundation Trust
and funding has
been secured for
this four day week
post, two days from
Mesothelioma UK and
two days from the North West Lung Cancer Charity.
I trained at University Hospital South Manchester
and went on to hold posts in general medicine,
community nursing and hospice care. I became a
Macmillan Palliative Care CNS in 1990 and in 1999
I developed the Macmillan Lung Cancer Nursing
Service at East Cheshire NHS Trust. In 2007 I was
appointed as the Macmillan Lung Cancer Lead
Clinician at East Cheshire ( one of only 2 posts
nationally that I was aware of ) and I was also the
Non Medical prescribing Lead for the Trust.
We are delighted at now having 6 nurses
funded by Mesothelioma UK, working
in Bristol, Cardiff, Leicester, Manchester,
Portsmouth and Sheffield. Posts in Oxford,
Northumberland, London and Glasgow will be
up and running before the end of the financial
year and we sincerely hope Cambridge
manage to recruit to the seemingly unfillable
gap left by Gerry Slade. Gerry retired earlier
this month; we sincerely wish her well and are
tremendously grateful for the commitment and
hard work she has shown Mesothelioma UK
and of course Papworth hospital.
In the past I was the first nurse representative on
the British Thoracic Society Lung Cancer Working
Group, a committee member for the National
Lung Cancer Forum for Nurses and the Vice Chair
of the Greater Manchester and Cheshire Cancer
Network Lung Clinical Sub Group. I was also the
M-NAT representative for Greater Manchester and
Cheshire. Earlier this year I was elected as a Trustee
for NLCF for Nurses and I am the clinical nurse
representative on the Manchester Lung Cancer
Board. I have always been extremely proud to be
a Macmillan Nurse and I certainly hope that my
representation of Mesothelioma UK develops as an
ambassador for the Charity. My aspirations are to
develop a specialist Mesothelioma nursing service
in Greater Manchester, having a local, regional and
national remit.
Mesothelioma UK’s first annual Research Grant
will shortly be announced through the British
Lung Foundation. The Charity has allocated
£150,000 for research this year and hope to
be able to do this (and more) every year.
Lorraine Creech
Senior Clinical Nurse Specialist
Mesothelioma The Neil Cliffe Centre
University Hospital South Manchester
Southmoor Road, Wythenshawe
Ghislaine has been negotiating with the
Citizens Advice Bureau (CAB) and we shall
soon launch a national benefits advisor post
that will be funded by and based in the Meso
UK offices but provided by CAB.
Our Annual Patient and Carer conference
back in October was extremely well evaluated
with over 121 attendees. Plans for next year
are already underway. If there is something or
someone you would like to see on the program
for the day please let us know.
A team of UK clinicians attended the
International Mesothelioma Interest Group
meeting in Cape Town, South Africa in
October. The UK presence was evident
throughout the event; a brief summary of the
meeting is in this newsletter. The UK team
were delighted that Professor Dean Fennell has
now taken over as IMIG President and it was
also announced that the UK bid to host IMIG
2016 was successful. We will host the 2016
IMIG Meeting in Birmingham.
The UK Trials portfolio is growing each month.
We have had so many positive comments
about our centre page pull-out that lists all the
trials. This is a working, live document and
we really do rely on everyone to help us keep
it up to date. The more people feel informed
(patients, carers, nurses and doctors) the more
likely we are to spread the word about available
trials. In addition to trials being good news for
those affected by the disease the UK’s ability
to recruit to Mesothelioma trials is extremely
evident, this success will not go unnoticed by
drug companies looking for potential countries
and centres to trial their product. Please help
us keep the trial information up to date and
share it as widely as you can.
I would like to point out the Mesothelioma
Practice in Cancer Care Accredited module
that is run through the Royal Marsden School.
If you are interested in the course, register your
interest as it is currently only provided to meet
registered demand – you will find the link on
the Royal Marsden website.
The Mesothelioma UK Board of Trustees
are keen to recruit more trustees particularly
individuals with an accounting, marketing or
business background. If you are interested
please get in touch by emailing
mesothelioma.uk@uhl-tr.nhs.uk
Finally a huge thank you to the Meso UK
team (HQ, trustees and nurses) for their
ongoing passion for the work we do and
more importantly to the many supporters who
donate time and money that enables us to
continue and grow.
Sincere best wishes to you all for the
festive period.
Liz Darlison
If you would like to be removed from (or added to) the mailing list for the newsletter, please call
freephone 0800 169 2409, email mesothelioma.uk@uhl-tr.nhs.uk 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.
International Mesothelioma Interest
Group, Cape Town, South Africa
October 2014
Swindon & Asbestos
Support Group
Christmas Event
Opposition is Growing to Government
Plans to Increase Legal Costs for
Mesothelioma Victimsatt
Almost 300 people gathered in Cape Town for IMIG 2014. The meeting
was spread over three packed days with a welcome reception on the
evening prior to day 1. It was wonderful to see many UK representatives
there including several nurses.
On 14 December at 12pm the
Swindon Asbestos Group for
widows, wives and partners of
asbestos sufferers will meet at
Blunsdon House Hotel in Swindon
for their annual Christmas lunch
which is a very special affair
attended by a large group of ladies
from the South West
As we all know Mesothelioma patients and their families often take legal claims
for compensation. Everyone knows they do not want to take such action but
for many it is the only way to provide their families with a financially stable future.
There was a
strong air of
optimism at
the meeting.
Clearly the
more we
learn about
cancer cell
biology the
Liz and Lorraine at
more it seems
the Conference dinner
mesothelioma
complete with tribal
face paint.
shares
characteristics
similar to cancers associated with
better treatment and outcomes.
The international portfolio of trials in
mesothelioma is expanding rapidly and
the UK’s ability to recruit, as evidenced
by the COMMAND study has not gone
unnoticed. Trial outcomes are eagerly
awaited with positive anticipation;
across the three days there were many
references made to personalising
treatment in mesothelioma. The closing
plenary even asked if we should dare to
believe we might find a cure!
industry still reaps and the manipulation
this can lead to.
Professor Dean Fennell from Leicester
has taken over as IMIG President for
the next two years. I accompanied
Dean to the IMIG Board Meeting where
we presented a UK bid to host IMIG
2016. Other bids were submitted by
Antwerp, Belgium and Paris, France.
I am delighted that at the Conference
Dinner Birmingham UK was announced
as the chosen host for IMIG 2016.
A full report of my conference notes
is available on the Mesothelioma
UK website or by email request to
Each day the ‘Best of IMIG’ was posted
on the internet, you can view the
content using the following links.
There was also, for the first time,
a strong sense of cohesion at the
meeting. In particular there was more
agreement than ever before regarding
surgical approaches and support for
the surgical trials being developed.
IMIG this year for the first time
included a social advocacy panel.
UK based Laurie Kazan-Allen from
the International Ban on Asbestos
secretariat gave a revealing insight
during her plenary session into the
global asbestos disaster and the
work of advocates. The presence
of the advocates at IMIG cannot be
underestimated not least because they
recognised a less honourable individual
who through a poster presentation
used the meeting to add credibility
to toxicology findings that support
the asbestos industry. Sometimes
we health care professionals are
so focused on disease, treatment,
cure and care we are naïve to the
commercial benefits the asbestos
2
Day 1 - http://imig.org/archives/1858
In addition Laurie Kazan-Allen from
the International Ban on Asbestos
Secretariat, has prepared the following
review of the meeting:
http://ibasecretariat.org/lkainternational-mesotheliomaconference-2014.php
Whilst at the event, Lynne Squibb,
from the Hampshire Asbestos Support
Group presented a cheque for £15,000
for Meso UK.
Liz
Mesothelioma Newsletter - Winter Issue 2014
Most of the ladies have lost their
husbands from mesothelioma. They
normally meet monthly but once a year
they meet in a local hotel for a special
Christmas meal. Following the meal
they have secret Santa whereby all
the ladies bring a small gift which are
then distributed amongst the ladies
so everybody goes home with a small
gift. After lunch all the ladies gather in
the lounge and sit by a log fire with the
Christmas tree and chocolates and
coffee and chat amongst themselves.
All the ladies dress up to make it very
special. It is an opportunity for ladies
who have lost their husbands from
mesothelioma to make new friends
following their bereavement and to have
support from others who understand
what they are going through and offer
help at difficult times. Some of them
even plan to go on holiday together in
the summer months.
Also on Monday 24 November the ladies
will be meeting at Dobbies Garden
Centre near Cirencester for special
Christmas tea and cakes in the specially
decorated restaurant and afterwards use
the opportunity to look for Christmas
gifts in the large garden centre.
Wishing you all
a Merry Christmas &
Happy New Year
from the
Meso UK Team
xxx
Because such action is often necessary
patients, their families and support
groups have always argued that the
process should be as simple as possible.
That is why so many were concerned
when the Government changed the
legal aid rules in 2012 and started to
impose legal costs on people taking out
‘conditional fee agreements’, known by
most as no win- no fee agreements.
These costs are for success fees and
the premiums of insurance policies taken
out to cover legal costs if a case is lost.
Previously they had been paid by the
defendants, in most mesothelioma cases
the insurance company concerned. The
changes were designed to ensure people
shopped around for the most economical
legal advice. Many in Parliament found
it impossible to support such a change
in the rules for mesothelioma sufferers.
They believed that people battling
this terrible illness should be able to
concentrate on their treatment not on
studying lawyers legal costs. That should
be a job for the Courts.
Therefore they put into the Legal Aid,
Sentencing and Punishment of Offenders
Act 2012 (LASPO) a section exempting
mesothelioma cases from these changes
until the Government had carried out a review
of their likely consequences on such cases.
The Government claimed they were
fulfilling this obligation by including a
question on the LASPO exemption in a
consultation paper concerning the general
reform of mesothelioma cases in the winter
of 2013. This was such a transparent
attempt to carry out a review in name only
that the Asbestos Victims Support Groups
Forum decided to initiate a judicial review
of the Government’s actions.
When Tony Whitston launched this action
on behalf of the Forum many said it
as just the usual suspects making yet
another complaint.
Then others began to take notice,
especially when it emerged during the
process of the judicial review that the
Government had signed a secret deal
with the insurance industry agreeing to a
series of their demands, including ending
the exemption.
In the spring of 2014 the Parliamentary
Justice Select Committee looked into this
matter and published a damning report
into the Government’s conduct. They
concluded the review was “maladroit
and “unsatisfactory” and called on the
Government to start again.
In September the Honourable Mr
Justice William Davis handed down his
judgement of the judicial review in the
Royal Courts of Justice. He ruled that
the Government had not complied with
the requirements set out in the Legal Aid
Act. Commenting on the ‘review’ the
Government did undertake he concluded
that “no reasonable Lord Chancellor,
faced with the duty imposed on him
by Section 48 of the Act, would have
considered that the exercise in fact
fulfilled that duty”. He called on the Lord
Chancellor to carry out a proper review.
Until this review is concluded
the Government cannot implement
the changes.
This is a very welcome development and
we hope the Government will see it as
an opportunity to take a new approach
based on justice for victims. They
need to carry out a proper review, one
based upon evidence, and they need to
understand that it will take three to five
years for that evidence to emerge.
Most of all they need to realise that
sufferers, their families and the support
groups are not going to stay silent. We
are going to continue arguing for better
treatment, more medical research and
access to justice. It is time for them to
listen and to do the right thing.
“Are you going for a winter walk? If so come and join the
Meso100Challenge & help us to fight this cancer caused by Asbestos
exposure. 100 steps! 100 pennies! - Text SWPX 78 £1.00 to 70070 or click
the donation button and pledge £2.00 ‘Together we can fight this disease’.
IATP
With Christmas nearly upon us, here
at the IATP we are thinking ahead
into the New Year and preparing for
our 2015 Annual Charity Dinner on
Saturday 31st January.
The Annual Dinner is not just about
the IATP members, it’s about bringing
people together in a more social
atmosphere, to raise awareness and
funds for charity. All funds raised
this evening will go to the Asbestos
Awareness & Support Cymru (A.A.S.C),
to help them continue the great
work they do providing assistance to
those, whose lives are devastated by
asbestos related diseases.
We also present the IATP Recognition
Awards. These awards are presented
to individuals or groups for their
outstanding contributions to our
industry. This year’s awards will be
presented to:
• JUAC
• Kieran Brewer
• Lord Saatchi
Should anyone be interested in
finding out more about the dinner or
attending it please visit:
www.iatp.org.uk/iatp-2015-annualdinner-awards-winter-wonderland/
Wishing you all a very Merry Christmas
& a Happy New Year
From all at the IATP
3
National Mesothelioma Report 2014
Dr Mick Peake, Chair of the Board of Trustees of Mesothelioma
UK and Clinical Lead for the National Lung Cancer Audit
A report on Mesothelioma in England and Wales covering the period
2008 to 2012 was recently published by the National Lung Cancer Audit
(NLCA) team (available via the Health & Social Care Information Centre’s
website – link below).
Data for the NLCA is collected by
Multi-Disciplinary Teams and whilst
focussing on lung cancer, data on
mesothelioma has been collected
from the outset. Because it is lung
teams who are collecting these
data, the report is confined to pleural
mesothelioma. Data on 8,740 patients
(405 of which are from Wales) were
available for analysis – making it,
to our knowledge, the largest case
series ever published and we estimate
represents around 85% of all cases
and virtually all of those patients that
reach hospital. The median age of the
patients was 73, but there were large
numbers aged 50 to 70 and small, but
significant numbers under 50. 7266
(83%) were men and, as one would
expect there were wide differences
in the number of cases being seen
in different parts of the country, the
pattern reflecting the location of
asbestos-related industries.
Mesothelioma remains a relatively rare
cancer with median number of cases
that each hospital team sees each year
being only 10. This means that there
are many teams who care for only 2-3
cases per year. What is apparent is that
there is wide variation in treatment and
outcomes across the country.
For example, overall around two-thirds
of patients receive some sort of active
anti-cancer treatment (chemotherapy,
surgery or radiotherapy) that proportion
varies between 46% and 74%
between cancer networks. The time it
takes for a diagnosis to be made also
varies hugely varying from an average
of 15 days in one cancer network to
44 days at the other extreme.
There are several very positive
findings, perhaps the most
important of which are firstly, that
the proportion of people being
treated with chemotherapy has
risen from19% in 2008 to 36% in
2012 and secondly, that the survival
is improving with the proportion of
patients alive one year after the date
of diagnosis has risen from 38% in
2008 to 43% in 2012.
Other studies have shown that this
is part of a longer term trend for
improving survival since around 2001.
Looking at how long different
specific groups of patients with
mesothelioma are now surviving,
we can see that those with the
epithelioid type whose general
health have a much better chance
of longer term survival with well over
10% of them still being alive 5 years
after diagnosis.
So, whilst those researching into
new and more effective treatments
still have a huge amount of work
to do, there is evidence of modest
improvements. That there is such
wider variation in treatment rates is
a major worry and we will continue
to feedback data such as this
to hospitals with the hope and
expectation that they will drive up
standards of care and lead to better
outcomes for patients.
Link to the report:
http://www.hscic.gov.uk/catalogue/
PUB14876/nati-lung-canc-audisupp-prog-meso-2014-rep.pdf
If you have news,stories, updates or information
on any mesothelioma trials then please let us
know. Contact us on 0800 169 2409 or e-mail us at
4
Nintedanib in
Mesothelioma
TRAP Trial - Tumours Requiring Arginine to Assess
ADI-PEG20, CisPlatin and Pemetrexed (TRAP) Trial
The aim of this study is to see if the
addition of Nintedanib to chemotherapy
followed by Nintedanib alone is more
effective at delaying progression of
disease than treating with chemotherapy
with placebo and then placebo alone.
We have recently completed ADAM (ADI-PEG20 and Mesothelioma), the first trial to
show that starving cancers of arginine led to a doubling of the progression-free survival.
This study was presented in 2014 at the American Society of Clinical Oncology in
Chicago in the plenary lung cancer session.
Patients are eligible for this trial
if they have not received any previous
chemotherapy to treat their disease.
The trial is currently open across the
world including 5 hospitals in the UK.
Currently 52 patients have entered the
trial and recruitment will continue until
the end of 2014.
Further information on this study can be
requested from the following hospitals;
Local Investigator: Dr Sanjay Popat
Centre: Royal Marsden Hospital
Chelsea and Sutton
Contact email:
Sanjay.Popat@rmh.nhs.uk
Status: Open and recruiting
Local Investigator: Prof Allan Price
Centre:
Western General Hospital, Scotland
Contact email:
Allan.Price@luht.scot.nhs.uk
Status: Open and Recruiting
Local Investigator: Dr Nicola Steele
Centre:
Beatson Oncology Centre, Scotland
Contact email: n.steele@nhs.net
Local Investigator: Dr Paul Taylor
Centre:
Wythenshaw Hospital, Manchester
Contact email:
Paul.Taylor@uhsm.nhs.uk
Status: Open and recruiting
HSV1716 TRIAL
This is a trial of an oncolytic virus, seprehvir
(HSV1716) given into the pleural cavity
through an indwelling pleural catheter,
such as the Rocket or PleuRx systems.
We have now completed the phase I part
of the trial, which tested one, two and four
virus treatments given once weekly.
We have found that the virus treatment
is safe and remarkably well tolerated.
We are now looking for more patients
to be treated on the 4-dose schedule to
establish whether it might be effective in
treating mesothelioma. Anyone interested
should ask their consultant to contact me.
The follow on trial called TRAP is testing whether the arginine depletor ADI-PEG20 will be
more effective when combined with standard chemotherapy for mesothelioma, namely
cisplatin and pemetrexed (Alimta), based on new data published from our laboratory. We
showed that starving mesothelioma cells of arginine improves the activity of pemetrexed
and may lead to higher response rates (Allen et al, Cancer Research 2014).
All patients enrolling onto the TRAP study will have their tumour tested for low levels of the
enzyme called ASS1. ASS1 is needed to make arginine, a key amino acid needed for growth
and multiplication of tumour cells. Normal cells have sufficient ASS1 and can produce
arginine for their own growth and survival. However, some mesotheliomas cannot make their
own arginine due to low levels of ASS1 and, therefore, must obtain it from the bloodstream.
ADI-PEG 20 depletes the blood supply of arginine, causing these cancer cells to die.
In this trial up to 47 patients with ASS1-negative mesothelioma and lung cancer
(adenocarcinoma) will receive weekly doses of ADI-PEG 20 in addition to standard
chemotherapy with cisplatin and pemetrexed. Tumour response will be measured
using CT and PET scans. Patients will also have their blood counts and organ function
measured regularly in order to monitor their progress.
TRAP opened in July 2014 at the following phase 1 centres: St Barts, Guys and St
Thomas’ Hospitals and Addenbrookes, Cambridge. Cohort 1 has completed accrual
with good safety and tolerability. Cohort 2 opened in November and is recruiting
patients. Once the maximum tolerated dose of the three drug combination has been
determined, a further 10 patients with mesothelioma and 10 patients with lung cancer
will be enrolled with assessment of disease response using FLT-PET (to monitor cancer
cell multiplication) in addition to standard CT scanning. The FLT-PET studies will be
performed at St. Thomas’ Hospital, London in 2015.
Dr. Peter Szlosarek of the Centre for Experimental Cancer Medicine, Barts Cancer Institute,
Queen Mary University of London and St. Barts Hospital is the lead investigator of the study.
Dr Peter Szlosarek
E-mail: peter.szlosarek@bartshealth.nhs.uk
MARS 2
Description of trial: To determine if it is feasible to recruit into a randomised trial comparing
(extended) pleurectomy decortication versus no pleurectomy decortication Treatment Pattern
and Visits: 2 cycles of standard of care chemotherapy, CT scan to evaluate if disease is within
surgically resectable limits, then randomisation to surgery versus no surgery with both groups
receiving 4 further cycles of standard of care chemotherapy. Follow up visits at 6 weeks, 3, 6, 9,
12, 18 and 24 months and annually thereafter for 5 years. Centres open and recruiting: Centres
not open yet but Sheffield and Leicester will be the lead surgical centres and approximately 15
medical centres will also participate Contact Details: Trial Managers: Dr Vikki Hughes and Dr
Belinda Lees, email: mars2study@papworth.nhs.uk
Short statement: “We are delighted to announce that MARS 2 has received Ethics approval
and is in process of setting up the participating sites. It is anticipated that recruitment will
commence in the first quarter of 2015”
RUXSAC TRIAL
The RUXSAC trial is examining the effect of the
addition of Ruxolitinib to standard pemetrexed/
cisplatin chemotherapy in pleural mesothelioma.
Ruxolitinb is an oral drug that inhibits the effects
of a molecule called STAT3. STAT3 is important
in mesothelioma for three reasons. Firstly, the
growth of many mesothelioma cells is stimulated
by a molecule called IL-6 and IL-6 signals by
activating STAT3. IL-6 also causes mesothelioma
cells to produce substances that cause new
blood vessel formation thus improving the supply
of nutrients to the tumour.
Thus, inhibition of STAT3 should prevent these
adverse effects of IL-6. Secondly, there are
cells called myeloid derived suppressor cells in
mesothelioma tissues that prevent the immune
system form recognizing and attacking the
malignant cells. STAT3 is a key molecule driving
MDSC production and immune suppression.
Thus, inhibiting STAT3 should improve immunity
against mesothelioma. Perhaps of most interest
is that when mesothelioma cells are treated with
pemetrexed, many of the cells, as a direct result,
produce substances which cause some of the
other treated cells to become highly aggressive
chemo-resistant cells that seed many more
malignant cells. The activation of STAT3 is a key
event in this process and so inhibition of STAT3
with Ruxolitinib should reverse this negative effect
of the main drug we use to treat the disease.
The trial is due to start in early 2015 and will be
for patients receiving first line treatment. Professor
Gary Middleton is leading the trial from the CRUK
Clinical Trials Unit in Birmingham and there is an
exciting programme of anciliary studies which will
aim to fully understand why the drug works and
how in patients on the trial.
Professor Gary Middleton
g.middleton@bham.ac.uk
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 mesothelioma.uk@uhl-tr.nhs.uk
Penella Woll
5
Mesothelioma UK Charitable Trust 1126083
Fundraising News
We are reaching that time of the
year when the leaves are turning
the most beautiful of colours and
the long nights are drawing in, but
the season of good cheer is just
around the corner and this year
just seems to have flown by.
Up and down
the country
our wonderful
fundraisers and
supporters have
been raising
awareness about
the dangers of
asbestos and
mesothelioma.
There is an
array of activities going on to see us
throughout the rest of the year, which
is absolutely fabulous and if you decide
you want to come and join us and do
something, then give us a call and we
will be there to help you every step of the
way. It doesn’t have to be big, you can
hold a coffee morning, do a bare faced
selfie or even the Ice Bucket Challenge,
it all raises awareness and funds.
Wishing you all a very Merry
Christmas and Happy New Year!
Jill Lemon
Fundraising & Marketing Manager
Debbie Wright
“Vic Wright, my Dad, passed away from Mesothelioma last
year. He was only 61 years old and had so many plans for the
future after his retirement. It was a devastating loss for myself,
my sister Vicky, and our Mum, Angie. It came as such a shock
because he only went to the see the doctor in April with a
cough and slight breathlessness, and by August he was gone.
The doctors initially gave him up to 18 months but sadly, he only
made it four. He was so very brave and strong until the end and
we were by his side in the Peace Hospice when he passed.
Most people have never heard of Mesothelioma
because it is such a rare form of cancer. If they have
heard of it, they tend to think of it as a “workman’s”
disease that people get who have worked in the
construction industry. Yet my Dad was a Sales
and Marketing Manager. He was only exposed to
asbestos for a few weeks in the early stages of his
career when he was required to work on the shop
floor as part of training. It just goes to show that
Mesothelioma is a very virulent form of cancer that
is not always caused by prolonged exposure to asbestos over many years. In October last
year, my sister and I ran the Twilight Race for Life in memory of our Dad in our hometown,
Watford. It took place in Cassiobury Park, which is a special place for us all. Dad used to
like going there and watching their model train. We raised over £1000 for Cancer Research
UK just by running 5km. Last year, we raised money specifically for Mesothelioma UK by
asking people to donate at the funeral rather than give flowers, but we felt like we wanted to
do more for the sufferers of such a little known disease. My sister decided to do the Race
for Life again this year at the park on Father’s Day, and I joined her. This time, we raised
money for Mesothelioma UK rather than Cancer Research. We both completed the race in
good time, and so far have raised over £400. Like last time, my Mum was there supporting
us, and waited on Dad’s special bench near the finish line. It’s such a small thing to do but
it really helps raise awareness of the illness as well as some much needed funds. We have
been lucky in that so many people have been willing to donate to the cause and we could
not be more grateful. Dad was so well-loved with so much life left in him, and his passing is
such a tragic loss. We know that he would have been proud that we are hopefully helping
other sufferers and their families in his memory. We hope that our story will motivate others
to do something, however small, to help the fight against Mesothelioma.”
John Gyte, Ian’s Colleague
We worked with Ian for 18 years at Glanford Brigg Power Station, he was one of the most affable and easy going people to work with
and a loyal friend. Unfortunately just after he retired he was diagnosed with terminal Mesothelioma. Despite battling bravely against the
disease with his usual optimistic attitude, he passed away this year. One of his wishes was that other people with the disease would not
have their life shortened so we are supporting Mesothelioma UK Charitable Trust by taking on a cycling challenge in the Yorkshire Dales.
Two routes, very challenging with four large climbs or challenging with two large climbs – one of the climbs was included in the Tour
de France this year. Any donations will help with research into the disease and support for those unfortunate enough to contract the
disease. Sadly it’s too late for Ian, but with your help we can turn the memory of Ian into something positive.
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
6
Linda Lakin, ‘A Bit of a Do’
In February 2014 I received the shock diagnosis that I have
Mesothelioma. I worked in a dry cleaning shop in the early
1970’s where the steam pipes were lagged with asbestos
and now, 40 years later this exposure has given me this
disease. I had pleural decortication surgery in March and
am now well on my way to recovery. Fortunately, all of
the cancer visible at that time was removed so now I am
playing the waiting game for it to come back. Then I will
need to have chemotherapy. In the meantime I do not plan
to give in – I am going to fight this to the end. The support
I have received from both the surgical team and Mesothelioma UK has helped me
enormously and so I have decided to organise a ball to raise money to enable the charity
to continue its work. Since March 2015 marks my one year survival that is the date I have
chosen for ‘A bit of a do’. It will be held at Leicester City Football Stadium on 21 March
and tickets will cost £40 per head. For this you will get a 3 course fixed menu meal, with
vegetarian and special diets catered for, live entertainment provided by Karen West and a
raffle with lots of goodies donated by local and national businesses. For anyone travelling
distances there are special rates available at Holiday Inn Express which is at the edge of
the stadium site. A deposit of £10 secures your ticket with balances due by 7 February.
Why not round up your friends and make a table of 10. For more information and to book
your tickets contact Linda Lakin on 07802756357 or by email linda_lakin@yahoo.com
Thank you for your support, Linda Lakin
Kellyanne Truman & Danny,
Reebok Spartan Race 2014
I decided to do the Spartan Race in September 2014
which was a personal challenge to myself. I had never
done anything like this before. It was a race of just under
5 mile with various obstacles along the way, I then had to
decide on a charity (after all if I was going to put myself
through this I might as well raise some money) I would
normally always go for the
usual and more general cancer charities, but I decided to
raise much needed funds for Meso, I know funding is not
in the ballpark of that of other cancer charities so with my
Granda’s passing it made perfect sense. I hate running
and the race was hard but I knew my Granda was with me
all the way, and I knew I had to do it for the charity to help
raise awareness and hopefully find a cure in the future. I
always thought my Granda would be around forever. He
was one of life’s good guys! Why he had to be struck down
with this horrible illness I don’t know....maybe God needed
him more than we did x
A bit about my Granda:
Joe Doherty my Granda worked every day of his life
to provide for his wife and 10 children, and never
had a sick day in his life, I remember him going
to the doctors having smoked for 60 odd years
being told he had a better lung capacity than a 21
year old, he was quite chuffed with this. His health
started to deteriorate around the age of 84 which
we put down to old age. But in September 2012 he
was diagnosed with Mesothelioma. He never once
showed his fear of dying and continued to attend
mass every Saturday until the cancer really took
hold. He was admitted to hospital a few days before
Christmas where he remained strong, humorous
and the heart of the family until his passing on New
Years day 2013! He is our Dad, Granda, Great
Granda and most importantly our hero! Sadly
Missed Always Remembered RIP x
Naomi Troy - My story
Team Centrica Yorkshire
Cycling Challenge
“Our
wonderful
Dad Ian
Webb, was
diagnosed
with malignant
Mesothelioma
in September
2013 and we
knew straight away that is was terminal.
Despite a brave battle and treatment,
Dad sadly passed away 10 months later
in July 2014. Throughout his illness Dad
maintained a positive outlook and was
an inspiration to everyone with his ‘just
get on with it’ attitude. Dad had always
loved his job working at power stations
as a Mechanical Engineer and despite his
illness being related to his job he wouldn’t
have changed it for the world. He made
so many life long friends throughout
his career and it was his latest team
of colleagues who were so saddened
by Dad’s passing that they decided to
organise a charity bike ride in Dad’s
memory. The ride covered a grueling
55 miles, through North Yorkshire, one
of Dad’s favourite places, and included
two sections used by the Tour de France
2014. One of Dad’s wishes was that
other people with the disease would
not have their life shortened or at the
very least should have the support they
and their families’ need, so the team
decided to support Mesothelioma UK,
who provide this much needed support.
With only a few weeks to organise the
event, to train for the 55 mile ride and
a fundraising target of £2,000 the team
had set their goals high! The day came
and the weather took a turn for the worse
with strong winds and rain, but the brave
21 riders, including a tandem, battled
the weather to complete the challenge
with great success. We had been invited
to join the riders after the challenge for
a celebratory meal and it was amazing
to meet everyone and to hear their
stories of the day and to feel the buzz
that they all felt after completing it. And,
the best news of all they had smashed
the fundraising target, raising a fantastic
£2,843.75 for the charity so far.
We can’t thank
everyone
enough. To
organise such
a fantastic
event in the
short time
and to raise
so much for
this great cause is unbelievable. We know
Dad would have been overwhelmed by the
support from everyone and that this was all
organised in his memory.”
7
Jane Devalle, Tricia Lilley and
the Gravelly Barn Team
Alison Hudson
Machu Picchu
Jane, Tricia and the Team at Gravelly Barn organised
a two day VIVACE Art Inspired by Music event at the
Gravelly Barn in Braughing. The event took place on
Saturday 20th September where there was a Lunchtime
Recital with Robin Ward, International Harpist. Over the
two days there were displays of all the artist’s works,
which included ceramics, painting, contemporary
basketry, glass, photography and hand built harps and
this wonderful day was held to raise money in memory of their dear friend Ann Smith who
was herself an artist. Over the two day event they raised a fabulous £1,750 incl gift aid.
This is what
Alison has
to say about
this wonderful
challenge….
”It’s my half
century this
year and I
wanted to
make it memorable. Machu Picchu is
a place I have dreamed of visiting so I
decided to take the challenge of trekking
through the Andes to get there. The
trek took 4 days and is at high altitude
(between 3,800 and 4,600 metres), so it
wasn’t easy! In completing this challenge
I hopefully have raised awareness while
raising money for Mesothelioma UK, a
charity close to my heart. Mesothelioma
is a disease caused by exposure to
asbestos. This charity funds research and
supports families affected by it.
Boyes Turner Trekkers Thames Path Challenge
On the 13th and 14th of September 2014, 11 of Boyes
Turner’s asbestos team participated in the Thames Path
Challenge and walked an incredible 437km between
them, covering the Thames Path between Putney and
Henley-on-Thames. Together with the lovely scenery,
sunshine and excellent
refreshments at the rest
stops, there were some
testing times for the team
with fields of cows to
adverse conditions, fatigue, blisters and aching limbs.
The six 100km and 50km participants walked through
the night, pushing through dark uneven paths lined with
stinging nettles with the only light coming from their head
torches or mobile phones. The Boyes
Turner Trekkers team are pleased to have finished the challenge
and are delighted to have raised between them over £3,000 for
Mesothelioma UK. The Boyes Turner Trekkers are grateful for the
support given to them and to everyone who sponsored them in
their Thames Path Challenge. A big thanks to Fiona, Amy, Oliver,
Annabelle, Rob, Gurminder, Dennisha and Sarqa.
I have self funded the trip therefore every
penny I have raised has gone directly to the
charity. Sadly I lost my Mum to this disease
and it is unknown how many people in
the future will
discover they
have acquired
mesothelioma”.
Alison
completed
her challenge
and raised
a wonderful
£1,208.00.
Hayley Pattrick – My Story
“It started with a bad cough and cold in Sep 2012 that wouldn’t shift and after a weekend away in Euro Disney
with me, mum, sister, brother in law and his beloved young grand daughters, we realised it was serious when
dad collapsed a couple of times whilst walking around Euro Disney. The day after returning from the short holiday
mum and dad went straight to the doctors, where dad was sent for tests straight away and was diagnosed with
Mesothelioma. Dad had worked as a carpenter from the age of 18 (he really wanted to become a footballer!) and
so had worked with asbestos on and off through out his working life. He had 6 months of chemo from Jan 2013
and the chemo was shrinking the tumour and we really thought things were on the up. My dad was as strong as
an Ox and still very young but each month the chemo was taking more and more from dad.
The chemo stopped in July for dad to have break and he felt fit and quite well for 1 month but things turned very nasty from August last year and we
was all shocked including dad of how quickly it all went downhill rapidly. On the 21st Oct 2013 my boyfriend and I got engaged and I am pleased
that my husband got the chance to ask my dad’s permission for my hand in marriage. We lost dad just 4 days later at just 62 years of age.
So far this year I have been trying to arrange as much awareness and fund raising as I can for the
Mesothelioma Charity as I find it helps me focus on something positive from something so awful and heart
breaking. I have placed Mesothelioma charity pots in various pubs and petrol garages around my local town,
I arranged a quiz night at my dad’s local working mens club and in July my sister and I and our 2 best friends
achieved half a marathon in honour of dad and all those people currently fighting this dreadful disease.
Altogether we proudly raised £1,950.00 for Mesothelioma UK. I married a wonderful man in Sep 2014 and it broke
my heart that my dad wasn’t there to walk me down the aisle or to witness my special day, but my mum kindly gave
me away and I had photos tied around my wedding flowers of dad, we also had memorial table at our wedding
with a lovely photo of dad and also placed a candle next to the photo which shined brightly all night for him.
This Christmas will be the 2nd without dad and we still miss him and think about him every day. My dad was a great
dad and was always the most happiest when he was with all his family, having a beer and watching Spurs! Dad has left
some great memories for us and he will always be loved.”
8
Vince Hagedorn - Raising funds
for Mesothelioma UK in the
name of Carole Anne Hagedorn
(1950 – 2014)
Carole Hagedorn taught students in asbestos ridden
schools, she taught children how to speak different
languages ensuring their lives could be well lived,
but sadly losing her own in the process. Carole sadly
died unexpectedly on 20th June 2014 and there is to
be an inquest in spring 2015. She had suffered from pleural mesothelioma since the
summer of 2008 and she was amongst the 1% of sufferers surviving more than 5 years
after diagnosis. The cause of her death is yet to be established by the inquest but her
mesothelioma was stable and apparently not the cause of her actual death.
This is Vince’s story:
“Carole’s brother Mick Colinese did the Great North Run on 7th September raising I
believe £2,500.00 for Mesothelioma UK, the charity that did so much to help and support
us during her illness., I obtained a BMWi3 electric car for Carole as a surprise from Elms
our local BMW i-dealer, they delivered in six days when the waiting list was 3 months but
sadly it arrived two days after Carole died. It met every feature on her wish list including a
Sat Nav that wouldn’t fall in to her lap while she was driving! After discussing it with our
family friend Louise, I decided to do the Lands End to John O’Groats run for the first time
in an Electric Vehicle (EV) as supplied and with out modification or special support from
BMW. So starting on 8th September, the day after Micks gallant run, we naturally chose
the title of ‘The Great North Hum’ for this journey..
The trip was to take us from Cambridge to Lands End
to John O’Groats (via the Eden Project) to Dunblane
in Scotland where Louise went home by train, then to
Lowestoft as it is the most Eastern part of the island the
and back to Cambridge.
So far as we know, each leg of this journey was a new
record for an EV, which is defined as one driven by an
electric motor clone. Louise wrote splendidly and her
blog is very well illustrated by photos of the journey.
I just drove and drove and drove and drove...For
2,000 miles in less than 6 days! I have now covered
more than 10,000 miles in three months and it is
believed to be that I am the most experienced i3
driver in the universe!!
Carole was my wife, my trouble and strife, the centre
of my life, my companion, my help, my support and
love of all loves; I hope that the funds raised in her name will help Mesothelioma UK to
give help and support to other victims of this dreadful disease”.
Vince raised £2,339.30 and you can read the full story
of this wonderful journey as written by Louise Rayner
at http://thegreatnorthhum.wordpress.com/ who was
Vince’s ‘Personal Assistant’ who braved the risks and
uncertainties to come, navigate blog, support and
manage Vince in this fantastic enterprise.
Danny Parr’s Meso Ball
“On 25th October
2014, almost 150
people attended
Rochdale Football
Club for a Meso
Ball, hosted by
Danny Parr in aid of
Mesothelioma UK,
primarily in memory
of Richard Parr and
John Vaughan.
The evening included a ‘Bucks Fizz Drinks
Reception’, a Four Course Dinner, a Secret
Auction for signed sporting goods, a Raffle,
Games, local comedian Clayton Jones, Triathlete
and author Andy Holgate, and the chance to win
an iPad. All this was followed by a disco, and
an opportunity to dance! The evening was well
supported by friends and family, as well as local
businesses and organisations, giving the raffle a
fantastic array of prizes. We’d like to say a huge
thank you to all those who have donated and
supported this event. Overall, the evening raised
over £3,500 (and rising) and all attendees had
a fantastic time”. Danny is a true inspiration and
has continued to support the charity in respect
and in memory of his lovely Dad Rick, who
sadly passed away in February 2011. Danny
said “a lot of planning and hard work went in
to setting up and running this event, but to
see so many people enjoying themselves, and
to see the amount of money raised, makes
you realise it’s all worthwhile!” Professional
pictures from the evening are available for free:
http://ianhowarthphotography.zenfolio.com/
mesocharity
Kate Godier’s London Marathon
“After 3 attempts I finally made it into the London Marathon through the ballot....scary stuff! This is a personal
achievement for me as it’s an event I have also wanted to do for many years. Sadly my Dad was taken away from
me because of this horrible disease called Mesothelioma, on the 10th March 2009. At the time there wasn’t much
information available regarding this cancer as it’s such a rare disease, but as the years have passed more people are
becoming aware as Mesothelioma can incubate in the body for up to 50 years.
The saddest part is my Dad never even worked with Asbestos, he was a Piping Designer who designed Oil Rigs.
I miss my Dad every day and wish he was here to see me complete all my sporting challenges, especially completing
the London Marathon. So the charity I have chosen to raise awareness for and which is closest to my heart is
Mesothelioma UK who relies solely on fundraising and voluntary donations to be able to provide patients, families and
carers with the support they need”. Well Kate did it she, she ran the marathon and raised a fantastic £855.25.
9
Andrew Lilley and Alex Hudson – Salford Triathlon
Claire Warrington
Andrew and Alex from the Industrial Diseases department at JMW Solicitors have taken
part in the Salford Triathlon back in August and this is what Andrew has to say… “we
are raising money for a somewhat unfashionable but very worthy cause that many of
you will already be very aware of. Alex and I have entered the Salford Triathlon to raise
desperately need funds for Mesothelioma UK. This supports further research into the
disease, raises awareness of the illness and provides support for specialist lung cancer
nurses caring for those suffering with mesothelioma”. Andrew and Alex have swum 1500
m cycled 40k and run 10k and Alex did it in a time of 3hrs 01.47 and Andrew in 3hrs
48.06 which is just marvellous and they have raised a fantastic £1,355.00.
“Many of you know that my lovely mum
was diagnosed with Mesothelioma earlier
this year. This asbestos related cancer has
no cure, and many do not survive beyond
their first year of diagnosis. Fortunately,
Mum was lucky and diagnosed very early,
and she has an amazing chance of living
for several years yet (those of you that
know her know that she’s not going to
let something like cancer take her down
without a fight!). Mesothelioma UK support
people like mum and their family and
friends, providing a wealth of information,
and are also working to raise awareness of
this disease so I took part in the Bollington
10k to raise awareness and funds to
support the charity and thank you to all
those who supported me.” Claire raised an
amazing £207.50
Sonia Weir and her TeamTrainHappy Ladies
TeamTrainHappy are made up of a few mad
ladies who will be doing this 7k Military Assault
Course in August! It’s all in aid of Mesothelioma
and they are taking part because Sonia
Weir’s lovely mum has been diagnosed with
mesothelioma. She is battling this cancer brilliantly
and is being very brave. So these mad ladies
will be doing ‘The Nuts Adventure Race course’ which is around 7km of the most
challenging army assault courses out there. It was originally designed by personnel
from the British Special Forces to push the individual to their limit and these lovely mad
ladies have raised a wonderful £1,087.50
Debbie Maslen and her Ladies Charity Afternoon
Debbie and her friends held a Ladies Charity Afternoon on the 13th September in
memory of their dear friend Alan Hayden. They raised funds by way of a raffle and
they had ‘Cake and Prosecco’ what a lovely way to spend an afternoon… and these
wonderful ladies raised an amazing £1,302.50.
Julia Baines and her ‘Just Jules Charity
Ladies That Lunch Party’
Julia held and hosted a Charity Ladies Lunch at her home selling an array of her
wonderful bags, scarves, clothes, jewelry, candles and home accessories. She provided
a lovely lunch of sandwiches and cakes and refreshments. The ladies had a wonderful
afternoon and it was a great success. Julia very kindly donated 10% of her sales and she
also held a raffle and raised a fantastic £313.00.
Natalie Green - Leicester Half Marathon
I work on ward 26 at the Glenfield Hospital which is a Thoracic ward and
we look after patients with mesothelioma. I feel that it is a type of lung
cancer that more people need to be aware of. I have been running for the
past 2 years and thought that it could be a great way to help raise money
and awareness in my local area, so I entered the ‘Leicester Half Marathon’.
I have been overwhelmed with the amount of support and sponsors from family, friends and
colleagues. One of our patients very kindly sponsored me too and their son asked me what time
I would like to finish the race in, my own personal goal was to achieve a time of 2 hours and 15
minutes and his response to this was ‘If you finish within your chosen time I will donate £100.00’.
I actually beat my personal goal and finished in 2 hours 12 minutes and on returning to the
ward there was an envelope waiting for me and in side was a cheque for a £100, this wonderful
gentleman had kept his word, I was absolutely speechless!!
Everyone has been so generous and I managed to raise an amazing £493.00 to date and
it is still rolling in…. Helping raise money for this charity has been a fantastic and above all
rewarding experience, knowing that the funds raised will be going to such a worthwhile cause
is what inspired me to take on this challenge and I hope that my story will inspire others to go
and achieve their own personal goals while raising awareness and funds too.
10
Jennifer Douglas ~ My
Lovely Mum, Winifred
Thacker
“My Mum was 67 years old when she
was diagnosed with mesothelioma on
the 2nd July this year and sadly just
a couple of months later she died on
10th September. This horrible insidious
disease appeared without any of us
knowing although it had been asleep
for 40 to 50 years. My Mum worked in
a Steel Foundry when she was 16 years
old as a clerical assistant and every day
unbeknown to her she was breathing in
the lethal asbestos dust which makes
us her family so angry that she was
exposed to this every day by just going
to work. Mum suffered from a pain in
her back and the CT scan showed there
was a tumour in her lung and that it
had spread to her liver and she was in
renal failure. When Mum was told her
diagnosis she was ready to fight this
cancer head on, however on the Friday
my Mum lost the power in both her legs
and became paralysed from the waist
down. Shortly after that the cancer
spread through her body and peacefully
at home on the 10th September my
beautiful Mum and my best friend
passed away with my Dad and myself
by her side. We are still in shock and
cannot accept how quick it all happened
and all so needlessly, we have lost
the rock of our family, my Dad lost his
beloved wife and my daughter lost her
best Nan, and I lost my Mum. In memory
of my Mum and to raise awareness
about the dangers of asbestos, we
asked for donations instead of flowers
at her funeral and we would like to say
thank you to all who made donations
and helped us to raise £1,000.00 and
the money raised will go towards helping
those with this disease.
David Wingate – Ride 24 Paris
Here’s David’s account of the challenge which takes in all
the twists and turns of his dramatic yet determined bike
ride challenge:
“Well it’s over – not quite completed but has been an
incredible experience. By noon on Saturday 6th November,
I was at the start line in London and raring to go. The
weather was perfect for cycling, no wind or rain with a
decent amount of sunshine. The countdown started and
off we went – 57 riders heading to Paris.
The first leg took us to Dover via Lenham. The group wasn’t too spread out and was
going at a reasonable pace when noticed I had a puncture. After years of practice, that
was sorted in a matter of minutes and I was back on the road. In all it took me six hours,
including a stop to refuel, to get to Dover where the ferry awaited. I had planned to get an
hour of sleep on the ferry but I was far too excited so I drank lots of coffee instead!
By 10pm we were off the ferry at Calais and were heading towards Paris, 90 miles
completed, 180 to go. I had got into a steady rhythm of eating and drinking to keep my
energy levels up, however tiredness was setting in having been awake for 21 hours by 2am.
Pannone Charity
Netball Tournament
By 3am it had become extremely foggy. Not only was it tough to see where I was going
but even hard to tell if you were going uphill or down. All you could see was a white blanket
all around with no idea where you were and little indication of how far to go to the next rest
stop. The other weird thing about the fog was how it would alter your body temperature
really quick. I think the humidity caused my temperature to drop and I couldn’t get warm – I
was actually starting to worry about hypothermia.
By then I was fighting the urge to sleep. It was something I had been worried about in the
lead up so I had bought some pro-plus tablets and energy gels with added caffeine. With
hindsight, I should have slept for 20 minutes at a rest stop but I hadn’t because I didn’t
want to lose time. Disaster then struck. I must have had what is known as a micro sleep on
the bike. The next thing I knew, I was heading towards a pavement head first. I immediately
got up but didn’t feel right and realised I had blood all over me. My bike looked a wreck and
the owners of a car that stopped to help looked rather concerned about me.
They patched me up pending the arrival of the support team who took me to the next rest
stop. Whilst at the stop the team doctor had a look and said I shouldn’t do the next stage
as I had a head injury. My bike was in bits too so I couldn’t go anywhere – I was utterly
gutted, despondent and wanted to go home.
I went with the support team to the next stop and managed to get 30 minutes sleep but
had missed chance to cycle 50 to 60 miles of the 280. With that bit of sleep and some
warm food inside I felt a lot better. I retrieved my bike from the lorry and got to work fixing
it. It was in a mess but with the help of the team mechanic we got it sorted and I was
determined to get underway, although the Doctor got me to promise to telephone him and
stop cycling if I felt at all dizzy.
Having got back on the bike I realised I could get to Paris and
that I was going to be okay. I had about 4 hours left to get to
Paris, the fog had lifted and the sun was coming out. It was
lovely to see some of the French countryside as the foggy
darkness meant couldn’t see anything before. I was sore all over
but still enjoying the ride despite the pain. I remember seeing the
first sign saying Paris and feeling elated. By the time I got to the
outskirts of Paris I was feeling jubilant, 4 miles left and how long
could it take me? An hour!! The longest and most frightening hour of my life! Every traffic light
was against me, the traffic incredible with the worst bit being the Arc de Triomphe. The Arc
is one of the biggest most chaotic roundabouts in the world and I had to go round it twice
as I missed my turning! Not long afterwards, I was at the finishing line by the Eiffel Tower
feeling many mixed emotions. I was exhausted, glad it was over, disappointed to not have
completed the full distance but happy not to have hurt myself too badly. Most of all I was
amazed at all the support I had received from friends and relatives on Facebook who had
been tracking the whole of my trip online. From there I went straight to A&E to be patched
up! It has been the most amazing few days after many months of training. I still feel a sense
of regret about not completing it but I am really pleased I picked myself up and got back on
the bike when I could have easily given up.
I have had some amazing support, from words of encouragement to donations on
JustGiving. It has been the experience of a lifetime (until I do the next one!) and I’m so pleased
to have raised a fantastic sum for Mesothelioma UK.” David raised an amazing £2,360.00.
Pannone part of Slater & Gordon held a charity
Netball Tournament. The tournament was held
at Wright Robinson School in Manchester to
raise money for both Cancer Research and
Mesothelioma UK. The ladies who took part
were Dee Williamson, Lynsey Robinson, Clare
Morton, Moji Sobowale, Annabel Toleman,
Zita Spencer, Lewis and Lauren Woodworth.
We Rachel Craig and Jeremie Gayout from
Pannone part of Slater & Gordon also ran a
charity tuck shop at the tournament also. They
raised an amazing £756.00 which was split
between the two charities and each received a
wonderful £378.00
Rebecca Jones & The
Novum Team
“On the 27th September, myself and colleagues
from Novum Law took on the Yorkshire Three
Peaks Challenge. The Yorkshire Three Peaks
Challenge involves the excruciating task of
climbing the peaks of Pen-y-Ghent, Whernside
and Ingleborough. These peaks form part of
the Pennine range, and encircle the head of
the valley of the River Ribble in the Yorkshire
Dales National Park. The aim was to complete
the walk in under 12 hours. The walk covers
a distance of 37.5 km (23.3 miles) to 42 km
(26.1 miles) (depending on the route) with nearly
1,600 m (5,249 ft) of ascent and descent. We
raised a fantastic £515.25.”
Fa la la la la la la la la!!
Merry Christmas....
11
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13

The Royal Marsden School
Fulham Road,
London SW3 6JJ
Tel: 020 7808 2900
Email: school@rmh.nhs.uk
www.royalmarsden.nhs.uk/school
Cuckoostones Challenge Walking In The Peak District
And The Manifold Valley
“My younger sister Clare was diagnosed with mesothelioma just before Christmas 2013.
After nearly 3 months of hospital appointments all around our region, differing opinions,
tests and investigations a diagnosis was made. The diagnosis when it came was quite
unbelievable as we had no reason to believe she had ever been exposed to asbestos.
Once Clare had a diagnosis Mesothelioma UK were in touch with her and the help and
support she has received from them has been amazing. As a nurse, I of course had an
awareness of mesothelioma but had never had any experience of the charity, it’s work
an dhow it is funded, Having become aware, initially my niece Clare’s daughter, the I and
the rest of the family were galvanised into fundraising for the charity. As a keen walker
and having the facilities to hold an event, I proposed that I would arrange a sponsored
walk, not envisaging how it would take off or how much planning it would require. From
the initial concept we soon had a great deal of interest then had to restrict numbers
when it looked as if we might not be able to manage the event as numbers grew, at
the same time not wanting to reduce the fundraising capability. As the day drew near
and the weather deteriorated the walk was in jeopardy, I began to think we might have
to cancel the walk, however the day dawned bright if a bit windy. Apart from losing a
gazebo in the wind, an issue with parking due to a wet field and the route becoming very
muddy in places, all went well. The last walkers returned just before the first shower of
the day and were greeted by a beautiful rainbow over the valley. The event took place
on the 19th October and I had devised a circular walk with options to suit all walking
abilities, 70 people attended the event which included marshals, walkers, supporters the
caterers and their children.
Dates to be confirmed – Register your interest now
Mesothelioma Practice in Cancer Care (on-line)
This module critically examines the complex nature of mesothelioma, exploring the
advanced practice skills required to care for and manage the subsequent impact of
the disease on the patient and family, with particular reference to the implications
for carers after the patient’s death.
This is an innovative e-learning module developed specifically to address the care of the patient and family
affected by mesothelioma. It will provide students with the necessary specialist knowledge and skills to
care for patients with mesothelioma throughout the disease trajectory. The module is delivered as an elearning package, where students use an online forum (Moodle) to access resources, discussion forums,
activities and e-learning materials. This provides the student with the opportunity to work flexibly,
collaborate with other students whilst being supported by tutors who facilitate on-line learning.
Who is it for?
Health and social care practitioners
Duration
Equivalent to 5 days delivered on-line
Dates
This module will next take place during the academic year 2015/16.
Dates to be confirmed.
Cost
To be confirmed for academic year 2015/16
Academic credits
15 credits at level 6 (degree) or level 7 (master’s)
Assessment
Level 6: Poster and 1,750-word essay
Level 7: Poster and 2,250-word essay
Clare was well on the day and managed the main marshal point with her youngest
daughter for the whole of the day. The youngest participant only 9 years old walked
6 miles raising £50.00, the oldest ran the 10 mile option, 55 people in all completed
3, 5, 6, or 10 mile routes, everyone returned to base without incident and we all
breathed a big sigh of relief. Hot baps, a variety of cake, cups of tea and glasses
of beer were served and enjoyed by all. A total of £2,700.00 was raised which far
exceeded all our expectations.
Thanks to walker, helpers, sponsors, cake bakers and all who supported the event.
A big thanks to Stanedge Grange Butchery, Sainsbury, Leek and Whims Brewery
Hartington for donating the refreshments. Country Attire ONLINE, Sera Bistro Leek,
Buxton Opera House, the Duke of Buxton, Longnor Fish and Chip Shop, Hair and
Beauty Dept, Buxton and Leek College and the Tap House Buxton for raffle prizes which
all helped to make the day the success it was”. By Estelle Wall
Key topics
• Diagnostic difficulties
• Supporting patients and carers through treatment and non-treatment options
• Psychological impact of disease related to exposure to toxic substance
• Spirituality, harnessing positive thinking and hope
• Challenges for health care practitioners in caring for people with mesothelioma
• End of life care
• Ethical considerations
Pete Attewill 100K Cycle Ride
“On Sunday 14th September I took part in a 100km cycle event
for Mesothelioma UK Charitable Trust in memory of my amazing
Dad Jack, and to support the charity for the support they give
to those suffering with this disease and my target is to raise a
£1000. My Dad sadly past
away 5 years ago having been
exposed to asbestos and then
diagnosed with mesothelioma,
he was the most courageous
and brave person I’ve ever
met and I did this challenge for
him.” With the help and support from family, friends and
colleagues Pete raised over his target £1260.91.
Entry requirements
Applicants should currently be caring for patients with lung cancer and/or mesothelioma.
This stand-alone module also forms part of these programmes
• BSc (Hons) in Cancer Care
• Graduate Diploma in Cancer Care
• Post Graduate Certificate Healthcare Practice (Cancer)
• Post Graduate Diploma Healthcare Practice (Cancer)
• MSc Healthcare Practice (Cancer)
To apply
Please complete an application form and return it to the School.
Application forms can be printed from our website or requested from the School.
Team “Make-A-Difference” Bristol Half Marathon 2014
On Sunday 21 September 2014, Rachel Smith, Sian Fletcher, Tina Churchill (from the Adult
Oncology Team at the Great Western Hospital, Swindon), Graeme Chisholm and Tony Grady
(of Novum Law) ran in the Bristol Half Marathon to raise money for Mesothelioma UK. This
wonderful team raised a fantastic £872.42.
‘Mesothelioma UK
- BLF Mesothelioma
Research Grant’
The British Lung Foundation are inviting
applications for Mesothelioma UK’s 1st
Annual Research Grant. The research
may be either laboratory based or clinical,
including epidemiological and/or palliative
care studies into mesothelioma. Grants are
for a specified period of up to three years
to a maximum of £150,000. Applications
may seek costs for personnel, equipment
and consumables where appropriate. The
grant-holding institution must be based in
the United Kingdom. The closing date for
applications is Monday 2 February 2015.
For further details regarding all funding
streams, and to download application forms
and guidelines, please visit:
http://www.blf.org.uk/Page/Available-grants
Lieutenant Norman
Middleton a retired
World War 2 Veteran
was born on 15th
June 1921 and died
22nd August 2014
aged 93 years old.
His lovely family
have very kindly
donated £100.00
from funeral
collections in
support of the work
Mesothelioma UK
do for patients and
their families.
15
Charity Football Match and Night
in memory of James Edwards
“Sadly we lost are lovely Dad to mesothelioma so we decided to
organised a charity football match and charity night to raise money
in support of Mesothelioma UK. Our dad was loved by so many
and is so dearly missed.
We would like to thank everybody that
played in the charity football match and for
all the donations that was collected on the
night which without these wonderful people
it wouldn’t have been possible” x love from
all the Edwards family x
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.
Agenda For Justice Supporting People
Diagnosed With Mesothelioma
I attended a gathering arranged by the Greater Manchester and Cheshire Asbestos Victim
Support Group. Kate Green, Shadow Minister for Disabilities and MP for Stretford and
Urmston gave the address passionately calling for “Agenda for Justice” and supporting people
diagnosed with mesothelioma. She pledged the support of the labour party for a fare deal.
·
·
·
·
·
Guaranteed and sustainable funding for mesothelioma research
funded by a levy on insurers and matched government funding.
100% compensation for asbestos victims
No more cut-price deals with insurers
No cuts in compensation for mesothelioma victims
No more secret Government deals with insurers proper protection
at work from asbestos and other health hazards
Lorraine Creech
Senior Clinical Nurse Specialist Mesothelioma
Mesothelioma in Australia 2013
The Australian Mesothelioma Registry (AMR) has been operational since 2011. It contains
information about people diagnosed with mesothelioma in Australia since 1 July 2010. The
AMR also has a voluntary component that enables the collection of asbestos exposure
information directly from people who have mesothelioma via a postal questionnaire and
telephone interview. The AMR is a national registry involving all Australian cancer registries.
It is funded by Safe Work Australia and Comcare, and managed by the Cancer Institute
NSW in collaboration with the Monash Centre for Occupational and Environmental Health.
The recently published annual report of the AMR includes 575 notifications of mesothelioma
for the 2013 calendar year, received by 31 May 2014. This figure is an underestimate as,
with late notifications, up to 700 new cases per year are expected. Findings of analyses
conducted on asbestos exposure data are presented in the report for 387 participating
patients. Of the 575 people newly diagnosed with mesothelioma in 2013, 465 were males
and 110 were females, and the majority (80%) were aged 65 years or over at the time of
diagnosis. The most common subtype was the epithelioid subtype (47%) and the most
common location was the pleura (94%).
Australia has one of the highest incidence rates of malignant mesothelioma in the world. The
overall rate for 2013, age-standardised to the World Standard Population, was 1.2 cases per
100,000 person-years. Of the 387 people with mesothelioma who completed the asbestos
exposure questionnaire, 350 (80%) also completed the telephone interview.
Among these:
· 213 (61%) were found to have ‘possible’ or
‘probable’ occupational asbestos exposure.
· 137 (39%) provided no information to suggest they had occupational exposure.
Of those, 114 people were found to have asbestos exposure in non-occupational
contexts and 23 people provided no information to suggest they had asbestos
exposure above background levels in either occupational or non-occupational spheres.
The full report can be accessed at: http://www.mesothelioma-australia.com/publicationsand-data/publications”http://www.mesothelioma-australia.com
16

Newsletter - Mesothelioma UK

Transcription

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