Newsletter - Mesothelioma UK

Transcription

Mesothelioma UK
Newsletter
Summer Issue 2014
About me! Debbie
Neale – Helpline
Co-ordinator for
Mesothelioma UK
Well, here I am. I have now been
with the Mesothelioma Team for
four months – how time flies. I had
a hard act to follow when Tracy
left the team but slowly but surely
I’m beginning to forge bonds with
my peers and I am really enjoying
working for such a worthy cause.
Working
within the
Lung Cancer
Team here at
the Glenfield
Hospital for the
last 11 years
has given me a
good foundation
for working
with this team,
having built up good knowledge and
compassion for helping patients/carers
alike. I have a good proactive approach
with everything I deal with and helping
others is my main aim.
If you have anything you would like to
feature in our next Newsletter, please
do not hesitate to contact me at
[email protected] or call
me on 0800 169 2409.
I look forward to hearing from you.
Debbie Neale
Welcome to the
Summer edition of our newsletter
It is packed with news and information to help everyone and anyone involved
in the mesothelioma community. I am delighted to report the successful
recruitment of two more Mesothelioma Nurse Specialist both posts being made
possible through Mesothelioma UK funding and your generous donations.
Lorraine Creech will be based in Manchester
and Sarah Smith in Bristol, both have
many year’s experience working in thoracic
oncology, are extremely experienced and well
respected for their commitment and passion.
Welcome aboard ladies and thank you for
wanting to join the mesothelioma dedicated
workforce. Posts 7,8 and 9 in Sheffield,
Oxford and the North East are continuing to
progress so hopefully our next newsletter will
bring news of who has been appointed.
Action Mesothelioma Day (4th July) is just
around the corner. The focus for this year is
RESEARCH FUNDING. All events planned
will aim to raise awareness about the much
needed funding mesothelioma requires to
develop research and trials. Mesothelioma
UK will be preparing an E-newsletter to
advertise events, let us know if you want to
be added to the circulation list. In preparation
asbestos support groups are circulating a
Pledge to Beat Mesothelioma; this is a call
to government to ensure proper funding for
research and is linked to an Early Day Motion
set down by Tracey Crouch MP. Please
contact your local asbestos support group
or Mesothelioma UK for a copy to sign to
show your support. The National Cancer
Research Institute held a hugely successful
Mesothelioma Workshop on 2nd May in
London. Attended by the great and the
good from many research institutions as
well as those already active and committed
to mesothelioma. The day provided a
glimpse of what might be possible in terms
of collaborative working in mesothelioma
research in the UK and beyond. Those
clinicians present that have been working
in the field for many years were enthused
beyond measure about the level of interest
displayed to the mesothelioma cause.
Hopefully this will result in more trials, positive
results, and better treatment and most
importantly better outcomes. Mesothelioma
UK in partnership with the British Thoracic
Oncology Group is holding a Mesothelioma
Management in the UK 2014 meeting on
12th September this year for health care
professionals and of course our annual
Patient and Carer conference will be on
Saturday 4th October and this year again it
will be held in Leicester.
I hope you are all finding our newly revamped
website helpful, please do send us your
comments and advice through. You will see
in this newsletter, for the first time, we have
included a quick guide to clinical trials. Again
comments please and if you hear of other
trials not included on the list please do let
us know. We hope to have this information
available on the website too before long.
Liz Darlison
Macmillan Mesothelioma Nurse Consultant
The 9th Patient & Carer Day will take place on Saturday 4th October 2014
at the Mercure Leicester, the Grand Hotel.
Contact us on: 0800 169 2409 or email: [email protected]
for more information and your registration form.
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.
Gerry Slade
Well, it has certainly been a very busy start to 2014! It has now been two
years since Mesothelioma UK funded me to work for 15hrs a week at
Papworth Hospital in Cambridge.
This was indeed
an exciting
challenge with a
remit to support
mesothelioma
patients and
their families
across the
region. Several
visits to
Lung Nurse
Specialists across the Anglia Network
highlighted the need to start up a
monthly Mesothelioma UK Nurse
Led Clinic at one of the busiest local
District General Hospitals with a higher
incidence of mesothelioma patients.
In 2008 when I joined Papworth, a
patient highlighted the need for contact
with others in a similar situation. After
some research, questionnaires and
great response from patients and
carers alike, and helped by one of
my colleagues, Claire Haslop, the
Papworth Mesothelioma Support
Group was formed.
Peter and Sarah Robinson, whose
father was a patient, were involved
from the start and Peter now Chairs
our Support Group Committee. A
loyal group of helpers, the committee
work tirelessly organising outings and
events. Now with the additional help
of one of our Lung Nurse Specialists,
Katie Peduto, the group has gone
from strength to strength, receiving
Charitable Status in 2013, with 30 – 40
people attending the lively monthly
meetings. A second and separate
meeting, a “Carers Only” group, also
runs monthly. This aims to give the
sometimes-neglected families of
the patient, opportunities to share
experiences and concerns.
“Just to let you know that I was very
glad that I attended the Meso Support
Group on 26th Feb (carers group). I
was surprised at how much “lighter”
I felt afterwards. It is the fact that
everyone there understands what we
are all worried about”
“I am writing to thank you and your
wonderful group for being so kind to
us and giving us support and helpful
information when we needed it most
and had nowhere else to turn. We
were truly touched by the courage of
the ladies there and the welcome that
we received.”
“You should be really proud of your
group as there are not many out there
and it does make all the difference to
families like us.”
Visit our website www.mesopapworth.
co.uk . All are welcome irrespective of
where treatment is received. Many travel
across the region from as far afield as
Harlow, Peterborough and Essex.
In April, inspired by the courage and
stories of our patients and their families,
I entered the White Horse Half Marathon
in Oxfordshire to raise funds for
Mesothelioma UK. A challenge indeed
for a non-runner! But nothing compared
to the journey that many of you are
facing. Due to the huge generosity of
so many, the amount raised to date has
been an amazing £3.400.
Another huge “thank you” to
Mesothelioma UK and Liz Darlison
in particular who have given me the
opportunity and, more importantly,
TIME, to devote to trying to improve
the quality of life for patients and
families living daily with the disease.
To Run Mesothelioma UK for 1 year
£377,000 is required.
You can Sponsor A Day in
Memory or Support of a loved one.
Contact us for more details.
Nintedanib in
Mesothelioma Study
Phase I Trials - what are they, who can
take part, how do they help?
A phase II study has recently
opened for patients with first line
unresectable malignant pleural
mesothelioma who have not
previously had chemotherapy for
their disease.
All patients with advanced cancer including inoperable mesothelioma,
eventually exhaust all available treatments; for some cancers there may be
no effective treatments at all.
The study will assess the safety and efficacy
of nintedanib in combination with first line
pemetrexed and cisplatin followed by
continuing nintedanib in these patients. The
study is being led in the UK by Dr Sanjay
Popat from the Royal Marsden Hospital,
London and is sponsored by Boehringer
Ingelheim who produce nintedanib. It is also
open in Glasgow and Edinburgh and will
soon be open in Manchester.
Nintedanib is in development and does
not have a license in the UK. Nintedanib
is an oral treatment which affects tumour
growth by interfering with the development
of the blood vessels that bring nutrients and
oxygen to the tumour. It’s known as a triple
angiokinase inhibitor. Chemotherapy on the
other hand slows the growth of tumours
by attacking all rapidly dividing cells in the
body. Attacking cancer in two different ways
at the same time can be more effective than
using a single approach. The main aim of
the study is to establish whether nintedanib
in addition to chemotherapy followed
by nintedanib alone, is more effective at
delaying progression of the disease than
treating with chemotherapy together with
placebo followed by placebo. The study will
also be looking at other measures of clinical
benefit including safety, survival and any
improvement in pulmonary function. We
know from previous trials in other cancers
that nintedanib is safe and well tolerated
and can be administered in combination
with chemotherapy.
Generally nintedanib is well tolerated, yet
some patients may experience side effects
such as diarrhoea, nausea and vomiting,
and liver enzyme changes. Most of these
side effects are mild to moderate in severity,
may improve over time, and should not
interfere with daily activities.
The study aims to treat a total of 86 patients
globally and they will be randomised
between 2 arms, either nintedanib plus
chemotherapy or chemotherapy alone.
Patients will receive oral nintedanib or
placebo, taken twice a day continuously in
addition to their chemotherapy.
Maddie Parrott
Medical Liaison Manager
2
Mesothelioma Newsletter - Summer Issue 2014
At this point, palliative care becomes a
priority and is aimed at controlling any
cancer related symptoms. However, for
some patients, alongside palliative care,
there is an opportunity to take part in
Phase I clinical trials.
Phase I trials in oncology are experimental
trials where drugs are being tested for the
first time in cancer patients. The aim is
to find out how safe a drug is, what the
highest safest dose of that drug is, how
the body breaks down the drug, and how
the drug affects cancer cells. Because of
the highly experimental nature of these
trials they are best suited for patients who
are very fit (able to perform light work and
are self caring), with good blood tests, no
other serious illnesses, and able to attend
weekly hospital visits for repeated tests
(and some overnight stays) at a minimum.
The entry criteria for phase I trials can
appear inflexible, but when testing new
drugs, it is important to ensure the safety
of the patients taking part. Because we
have no information on how the human
body handles an untested drug, there is
always a risk of unexpected and potentially
serious side effects; we know that this risk
is higher in patients who are less well. In
addition, any interaction with other drugs
and other serious illnesses with their own
symptoms can make it difficult to say how
safe a drug really is.
As a drug is being tested for the first
time in a phase I trial, we do not know
how effective it will be at controlling
cancer. Because of this unknown, most
patients do not benefit from taking part
in these trials.
However, some do if the drug slows the
growth of their cancer. Scans are used
at regular intervals to find out if a drug is
controlling a patient’s cancer.
There are several hospitals around the UK
that run phase I trials. If your Oncologist no
longer has standard licensed treatments
to give you, you may both consider being
referred to a phase I center to discuss
phase I trials. At the first visit, the phase I
doctors and nurses first explain how phase
I trials work, and, based on your previous
treatments, medical history, fitness and
blood results, discuss whether this would
be the right option for you. Most phase I
centers have several trials running, so it is
only after this first assessment can details
of a specific trial be given to you. Once
a suitable trial is recommended, patients
would then need to go through and pass a
general health check using blood and urine
tests, ECGs (heart tracings), scans and
other special tests (like echocardiograms
[heart scan], eye and lung tests) to make
sure that it is safe for you to proceed.
Phase I trials may be time consuming for
patients. However, all the information we
get from patients taking part in these trials is
vital as it helps us enormously in developing
drugs that may go on to become effective
treatments in the future. In this way they
offer a great deal of hope for us all.
Dr R Molife
Medical Oncologist and Principal
Investigator in Phase I Trials
The Royal Marsden Sutton
The IATP 2014 Meso Warrior Award
We are delighted to announce that Liz Darlison was presented with the Independent
Asbestos Training Providers (IATP) 2014 Mesothelioma Warrior Award. This is a voluntary
organisation that seeks to provide a dynamic and interactive link between those seeking
asbestos training and those providing it. The group holds an annual fundraising themed
dinner for members and related guests with the focus of the evening being the presenting
of several awards. Liz was nominated for the award by the wonderful Mavis Nye and
thoroughly enjoyed the whole evening particularly having dinner with Mavis and Ray. A
huge thank you to Mavis, the IATP events team and Award Health and Safety Ltd sponsor
for the Meso Warrior award from Liz and the whole Meso UK team. Liz said “working with
Mesothelioma in the manner I do is an unbelievable privilege, its an emotional rollercoaster
at times with so many highs and lows. Being given this award feels like a injection of
energy, it’s a real boost and being nominated by Mavis Nye who has become a bit of a
superstar and so very well connected just adds to the gratitude and satisfaction”.
RESPECT TRIAL General Update:
A Multicentre Non-Blinded
Randomised Controlled Trial To
Assess The Impact of Regular
Early Specialist Symptom Control
Treatment on Quality of Life
in Malignant Mesothelioma “RESPECT-MESO”
The RESPECT-Meso study opened to
recruitment at the co-ordinating site,
Portsmouth Hospitals NHS Trust, on 3rd
March 2014. Following this, the first patient
out of our 174 recruitment target was
successfully recruited into the study on 3rd
April 2014 and was randomised into the
Regular Early Specialist Symptom Control
Treatment (RESSCT) intervention arm.
The study is currently open to recruitment at
the co-ordinating site only to allow a 3 month
‘run-in’ phase to check the trial is running
smoothly and to iron out any issues that
arise early on. We anticipate opening up new
sites, in a staggered approach, from June
2014 onwards. So far 15 UK sites have been
selected to open at this point and we remain
happy to consider new sites.
A substantial amendment has been made
to allow a sub-analysis of patient HRQoL
depending on certain baseline features as an
additional secondary outcome. Accordingly
patients Neutrophil/Lymphocyte ratio and
radiological stage (where possible) using
the International Mesothelioma Interest
Group (IMIG) system will be recorded. This
amendment has now been submitted for
research ethics committee approval.
If you are interested in the RESPECT-Meso
study and would like further information
please see the study website
www.respect-meso.org or alternatively
the Trial Manager, Laura Marshall, can be
contacted at [email protected]
or 02392 286000 ext. 5211.
3
4
www.cancerreserachuk.org/
cancer-help/trials/a-studylooking-hsv1716-treatmesothelioma
Dr Nick Maskell
Prof Penella Woll
Mr Eric Lim
24 (see website)
Weston Park Hospital,
Sheffield
Not yet open but planned:
Sheffield
Oxford & Leicester
203
12
50
Proven diagnosis of Mesothelioma
Have had pleural intervention in
past 35 days: open biopsy, VATS,
thoracoscopy, surgical thoracotomy
Large bore chest tube
Indwelling pleural catheter
Patients with histologically proven
malignant pleural meso
Patients with disease which is not
amenable to potentially curative
resection
Histological confirmation
of meso
Disease confined to one
hemi-thorax
Immediate or deferred radiotherapy
Undergo 21Gy in 3# radiotherapy
Followed up 1,3,6,9 & 12 months
after enrolment
1, 2 or 4 administrations of
HSV1716 (at weekly intervals)
between 9 & 15 follow
up visits
2 x cycles platinum/
Pemetrexed chemotherapy
Reassessment
Randomised controlled
trial evaluating whether
prophylactic radiotherapy
reduces the incidence of
procedure tract metastases
Intrapleural delivery of
HSV1716 patients with
Mesothelioma
Does lung sparing surgery
(pleurectomy decortication)
increase survival & improve
the quality of life for patients
with meso?
Not yet open for recruitment
[email protected]
[email protected]
Dr Kevin Blyth
Gartnavel General
Hospital, Glasgow
Stobhill Hospital, Glasgow
Southern General
Hospital, Glasgow
Glasgow Royal Infirmary
Victoria Infirmary, Glasgow
709
Informed written consent
Suspected pleural malignancy
Sufficient fitness for
diagnostic sampling
No treatment as
observational study
To prospectively assess
the diagnostic & prognostic
performance of two
biomarkers of MPM
6
[email protected]
Prof Anoop Chauhan
Queen Alexandra Hospital,
Portsmouth
174
Histological or cytological malignant
pleural Mesothelioma
PS score 0 – 1
The diagnosis of MPM within the
last 6 weeks
Attend outpatient clinic at
weeks at baseline 12 & 24
post randomisation
Multi-centre non-blinded
randomised controlled trial
178
[email protected]
[email protected]
Dr Faivre-Finn
Dr Neil Bayman
42 centres
374
Diagnosis of Mesothelioma
PS 0 -2. Chest wall
intervention (VATS
mini thoracotomy, LA
thoracoscopy, chest drain
Radiotherapy 21gy in 3 #
within 42 days of intervention
Patients receive radiotherapy
or no radiotherapy which is
administered following chest
wall procedure
51
www.cancerresearchuk.org/
cancer-help/a-trial-lookingtype-radiotherapy-called-itpeople-tests-lung-cancercalled-mesothelioma-pit
Prof Dean Fennell
Not applicable
200
Histological diagnosis of
malignant pleural meso
Received 1 line of standard
platinum doublet based
chemo
3 weekly cycles
Phase 2 trial active symptom
control with/without oral
Vinorelbine as a 2nd line
treatment for patients with
malignant meso
1
[email protected]
Prof Dean Fennell
Cambridge, Cardiff,
Chelmsford, Leicester,
London, Manchester
Southampton
Aiming for 370
4 prior cycles Pemetrexed/
Cisplatin treatments
Daily tablet & visits to Trial
Team every 3 – 4 weeks
Randomised trial comparing
Defactinib with a placebo
183
Susan.Zanker
@TMCPharma.com
Dr Sanjay Popat
Glasgow
Edinburgh
London
Soon: Manchester
86
No previous chemo
Histological confirmation
Randomised 3 weekly chemo
+/- oral twice daily tablet
Pemetrexed & Cisplatin
28
Not yet open
[email protected]
www.cancerresearchuk.org/
cancer-help/trials/a-trial-ganetespibpemetrexed-cislatin-pleuralmesothelioma-meso2
Prof Dean Fennell
1 LRI, Leicester
2 University College
London Hospital
3 Weston Park,
Sheffield
Patients with malignant
pleural Mesothelioma
Phase 1 / 2
1st line
Phase 2
Maintenance
Second line
Radiotherapy
Interventional (Band 3)
NIHR Portfolio adopted
Observational Study
Phase 3 RCT
Phase I/IIa
Surgical
MESO-02
Nintedanib
COMMAND
VIM
PIT
RESPECT
DIAPHRAGM
SMART
HSV1716
MARS
Ganetespib
Pemetrexed/
Cisplatin
9
Jason.lester2
@wales.nhs.uk
Dr Jason Lester
Velindre Cancer Centre
26
No previous chemotherapy,
histological confirmation
3 weekly chemo & 9 vaccine
injections over 24 weeks
1st line
SKOPOS
Standard chemotherapy
+ vaccine
17
CONTACT
DETAILS
PRINCIPLE
INVESTIGATOR
CENTRES OPEN
& RECRUITING
PARTICIPANTS
TO DATE
PARTICIPANTS
REQUIRED
ENTRY
CRITERIA
TREATMENT
PATTERN
& VISITS
DESCRIPTION
OF TRIAL
TRIAL TITLE
TRIAL TYPE
(1st or 2nd Line,
Maintenance/ Surgical/
Radiotherapy/
Phase 1/other
MESOTHELIOMA CLINICAL TRIALS
TRIAL LIFE
Steve Wride was diagnosed with mesothelioma in June 2009. That July he
started a clinical trial of Velcade (biological therapy) and Cisplatin. His disease
remained stable for three years following six cycles of treatment but was then
knocked back by six cycles of Alimta and Carboplatin.
In late 2013 Steve’s mesothelioma
started growing again which lead
him to take part in a dose escalation
study in early 2014 of Vandetanib and
Selumetanib two biological therapy drugs
which have been used separately in the
past, but not in combination. During
the VanSel1 trial he visited hospital
weekly for tests (bloods, temperature,
blood pressure; pulse, ECG). He
also had regular eye checkups and
echocardiograms (as some patients had
experienced these problems in the past)
and gave PharmaoKinetic (PK) bloods at
intervals over 24 hours, which were used
to assess what happened to the drugs
inside the body over time. Hospital visits
became woven into our lives along with
changes to our daily routine. Drugs were
taken orally twice a day at set times, with
no eating and only water to drink for two
hours before and one hour after each
dose. We chose 11:30 and 23:30 as the
most convenient dose times, but it was
still a challenge to regulate meals and
fasting periods around those times.
Side effects became noticeable two
weeks into the study when taking both
drugs – diarrhoea; fatigue; a severe rash
on his face and upper body, like super
acne; loss of appetite, then the need to
eat quickly to avoid nausea. Life became
very unpredictable and he was reluctant
to venture far from a loo and we became
home-based for much of the time. These
were managed with Imodium, E45 and
hydrocortisone creams and antibiotic
lotion, plus rest and eating food that
could be ready quickly. A less obvious
side effect on Steve’s heart rhythm was
picked up on the ECG before it became
serious, resulting in a week’s break from
medication then resuming the trial on a
reduced dose of Vandetanib. After two
cycles of treatment lasting ten weeks, a
scan showed some disease progression,
although small enough to be considered
stable on current drug trial protocols, it
fell outside the 2011 Vansel protocol and
consequently Steve’s trial is now over.
However, he is proud to have contributed
to the research and is on the waiting list
to participate in future trials. On the bright
side his meso remains confined to one
lung with no new areas of growth, just a
small increase in the size of two lesions.
Now it’s over we have mixed feelings:
disappointment that this drug trial did not
reduce his cancer but also relief as the
side effects of treatment begin to wear
off. We’re more relaxed now there are no
restrictions on when we eat! When you
read this, we will be out and about again
preparing to celebrate five years postdiagnosis in June and keeping our eyes
peeled for new drug trials!
Share our story on
www.doingsomethingpositive.
blogspot.co.uk
Eamonn Martin
My name is Eamonn Martin. I am a forty one year old husband to a
surprisingly tolerant wife, and father to a five year old girl and seven year old
boy. We live a very pleasant existence in Harpenden near London. However
in January 2011 I was diagnosed with stage III pleural mesothelioma.
The prognosis at the
time was a year but
more than two years
later I’m still here feeling
relatively physically
healthy. My outlier position
on the age graph, and
responsiveness to
chemotherapy has no
doubt helped in this regard, but the capricious
nature of cancer, wards against complacency. As
part of my legacy I decided to create a website,
www.whothehelldoeshethinkheis.com that is a
platform for opinion, free thought, and right of
reply, but I have also used this to write about my
story with cancer and the terminal diagnosis in my
articles, ‘Skyfall’ and ‘The Good Delusion’. They
are not regular reports on my progress, they are
the background to my story, the lessons I’ve feel
I have learned along the way and my open and
honest feelings on the issues raised by such a
diagnosis and prognosis. I warn they may seem
‘colourful’ and at times, even facetious, and so
may not be to everybody’s taste, but they are
honest. My hope is that by reading them, they
may help someone who is at the beginning of a
similar journey and help them realise that life is not
over yet and in fact it may just be beginning.
The Asbestos
Frontline 2014
4th April 2014 Hong Kong banned the
“import transhipment supply and use
of all forms of asbestos and asbestos
containing materials”
This government policy was achieved through hard
work and perseverance of ban asbestos activists
by raising awareness of the public occupational
health hazard of asbestos for more than 20yrs. This
regulation is unlikely to affect the massive trade in
asbestos on the Chinese mainland but it will ensure
the health and safety of seven million residents.
This development is an example of progress
being made by the global citizens’ ban asbestos
network, a virtual grassroots movement that has
gone from strength to strength. Campaigners
armed with information and commitment are
challenging powerful political and financial vested
interests in countries which are producing and
using 2 million tonnes of asbestos every year.
Today over 100 asbestos victim groups globally
not only provide assistance and support for those
lives who have been devastated by asbestos
but also play a pivotal role to end the asbestos
scourge. Their stories stimulate political and media
interest needed to change asbestos agendas.
One example the UK victim communities has had
is The Mesothelioma Bill, a piece of legislation
which received Royal Assent on 30th January
2014 which began life in 2007 as an aspiration of
UK asbestos victims led by the national Forum of
Asbestos Support Groups. The next ten years,
insurers will have to pay thousands of sufferers an
average of £123,000; the total projected cost most
of which will be paid for by the insurance industry,
exceeds £322+ million. Japan and the Netherlands
have mounted legal challenges claiming that official
negligence allowed hazardous working conditions
to persist. Italy and France have exposed asbestos
industry-linked scientists and as a result of one
campaign a highly controversial candidate for the
position of head of France’s premier Centre for
Research in Epidemiology and Population Health,
withdrew his application. In difficult and frustrating
circumstances victims working with civil society
partners are progressing educational outreach
projects, investigations and legal actions in Brazil,
India, Thailand, Indonesia, Colombia. In every area
of the globe, asbestos victims and their allies are
leading the campaign to end the use of asbestos
and obtain justice for those whose lives have been
ruined by exposure. The struggle continues!
Laurie Kazan-Allen
5
HER MAJESTY’S CORONER FROM THREE PERSPECTIVES
I decided to submit this article because I have seen the Coroners Court and process from three angles. Firstly I was
a Police Officer, then I became a solicitor and then as a relative I was involved with the inquest into my father’s death
following a Road Accident. Sadly, in every mesothelioma case the Coroner will almost certainly be involved as it is an
industrial disease. I hope my contribution is useful.
I should say that the Coroner is not there to
rule on liability. They seek to establish who
the deceased was, how, when and why
they came by their death. The process is
about what has taken place and not who
is responsible. From this experience, I have
summed up my thoughts below:
2) Ask Questions - either directly yourself or,
if you have one, through your solicitor. You
can get advice and help from the charity
1) Be prepared –The Coroner will be involved.
This may mean a Police Officer attending your
house, the hospice or hospital. They will begin
an investigation and their involvement, even
though not intended, can be intimidating and
upsetting. They are not there to investigate a
crime but to gather evidence as a Coroner’s
Officer. They will then hand this role on to a
civilian whose details you should be given.
There will almost certainly be a Post Mortem.
You may be given a choice about this but
don’t always expect one, it differs from one
Coroner to another. Once this is complete
your loved one is released back to you for
burial or cremation. Your undertaker can
make arrangements from here. Reference
to a Coroner’s undertaker means the people
who take a person to the mortuary. You do
not have to use them for the funeral.
In contrast to when I first started as a PC
the information available now is quite good.
A basic guide, “A Guide to Coroners and
Inquests” can be viewed online at:
The Coroner’s Court Support Service at
http://www.coronerscourtssupportservice.
org.uk/ or on 0207 8024763.
http://www.direct.gov.uk/prod_consum_dg/
groups/dg_digitalassets/@dg/@en/
documents/digitalasset/dg_185904.pdf.
If you are offered the option of a Post
Mortem or about samples taken during the
same , take advice form a solicitor if you are
or think you will make a civil claim.
3) Don’t go through it alone – as obvious
as it sounds and on a completely non-legal
note, my brother, step-mother and I drew
a lot of strength, support and comfort from
each other.
Coroners, their deputies, Police and
Coroner’s Officers are often sympathetic
to your position. Some will have got to
know you quite well and will offer support
if they can. This is true throughout the
process not just during the inquest itself.
They understand the Courtroom can be a
daunting place.
You may be called to give evidence.
You can sometimes ask to go to the
court and before an inquest so it is not
quite so unfamiliar. Volunteers such as
those from the Coroner’s Support Service
can help families and witnesses when
they attend Inquests. Commonly inquests
are “read only”. Here the Coroner or their
Officer reads important information from
investigations out aloud to the Court.
Rarely a positive experience, the
Coronial process can be hard but help
is always available.
James Trescothick-Martin is a solicitor with
Novum Law’s asbestos disease team. He
was a PC in Wiltshire and Avon & Somerset
prior to re-training.
Travel Insurance for Mesothelioma Sufferers
MIA Online Ltd are unique in the Travel Insurance industry, even the Underwriters are confused at how we can make
a scheme that is used mainly by people with severe medical histories (although we are also cheaper for our older
customers) not only work, but work better than other ordinary schemes.
The reasons mainly are the skills and
expertise of the Company Directors which
are readily passed on to all our staff and
far exceed those of even the largest of
Insurance companies, who often come to us
for advice.
We are not just about selling insurance. Our
staff have no time targets or sale targets
but they have a responsibility to get it right
for both our insured and our Insurer. Where
you are going is just as important as your
medical history.
With our specialist Clear2Go policy, we do
not use a computerised screening system.
We talk to you like human beings who
happen to have illnesses and don’t try to fit
you into a box or decline because we can’t
spell the name of the disease! We want to
know how it is affecting you and how you are
coping, what kind of support you will have
when you are travelling.
The premiums are a set amount, with no
additional costs for each new illness or the
6
number of medications that you take. As
such, it does not matter how many illnesses
or how many medications. However, if
you are not completely honest with us,
we cannot help you and you may get into
difficulty abroad with the outcome being your
claim will not be met. Now, that is a waste
of money!
At MIA we provide;
•
•
Travel advice on destinations. There is no
point taking the time to choose a wonderful destination if you then cannot find travel insurance. We are always happy to discuss destinations with you.
•
Affordable travel insurance. Although we are strict on our requirements e.g. use EHIC card and a note on your medical records confirming you are medically Advice for those who have had recent chemo or radio therapy. We advise you on what precautions to take with you or take whilst away.
fit to travel, the cost is worth it. £69.50
for someone 65 years old for 2 weeks
in Spain.
•
Free 1 year MIA Membership. This allows you to store, access and edit any personal and medical information at anytime, anywhere in the world. It comes with an ID card which can be located or shown to emergency personnel so they can contact us and we can pass on any information stored for you.
We need to make this scheme work so it is
around for everyone to use and to do so,
we need your help. Just talk to us openly
and honestly so we can give you the best
advice and suggest the best destination.
All our screeners are lovely so just give us a
call on 01268 783383 even if you just want
a brochure.
Eileen Dalrymple-White
Corporate Director
www.miatravelinsurance.co.uk
The Medicines and Healthcare Products
Regulatory Agency and the Early Access
to Medicines Scheme
At the beginning of April, the Medicines and Healthcare Products Regulatory
Agency (MHRA) launched their Early Access to Medicines Scheme.
The scheme is a way of ‘fast tracking’ a
small number of medicines with the aim
of giving patients with life threatening or
seriously debilitating conditions access to
medicines that do not yet have a licence.
However, these medicines will still have
to be deemed suitably safe and meet a
demonstrably unmet medical need.
The scheme will be overseen by the
Medicines and Healthcare Products
Regulatory Agency. This is the arm’s
length body of the Department of Health
responsible for regulating all medicines
and medical devices in the UK by ensuring
they work and are acceptably safe.
With medicines this can range from a
packet of paracetamol to a flu vaccine,
with medical devices from plasters to
pacemakers. Underpinning all their
decisions are robust and fact-based
judgements.
The aims of the MHRA are to:
• Protect public health through
regulation, by assessing the risks and
benefits of medicines and devices.
• Promoting public health by helping
people who use these products to
understand their risks and benefits.
• Improving public health by encouraging
and facilitating developments in products
that will benefit people.
A licence from the MHRA is required
before any medicine can be used to treat
people in the UK.
To obtain a licence, companies and/or
researchers must apply to the MHRA for
permission to test drugs through clinical
trials, if these trials are to be conducted in
the UK. In order to receive permission to
run a trial, they must first satisfy the MHRA
that they have met strict safety criteria.
All the test results from these trials on
how the medicine is made, the way it
works, who it is meant to treat and its
side effects are sent to the MHRA for
detailed assessment.
The assessment team is made up of
experts from different specialties, each of
whom has undergone additional training
in medicines assessment.
The length of the assessment process
depends on the type of medicine as well
as the quality of the initial information
supplied by the manufacturer.
Once the MHRA is satisfied that the
medicine works as it should, and that it
is acceptably safe, it is given a marketing
authorisation or product licence.
The Early Access to Medicines Scheme
aims to streamline this process, so
instead of granting a licence, the MHRA
will provide a scientific opinion on the
benefit/risk balance of the medicine,
based on the data available at the time of
the Early Access to Medicines Scheme
submission. This information will then be
available to assist doctors and patients in
making treatment decisions.
For unlicensed drugs to be used under
the early access scheme, sufficient data
from several years of clinical trials would
still be needed to show that it looks like a
promising and innovative treatment, so the
number of drugs to be accepted in this
scheme is predicted to be relatively low.
The website link is
http://www.mhra.gov.uk/
Howweregulate/Innovation/
EarlyaccesstomedicinesschemeEAMS/
index.htm
WAY Widowed and
Young – helping to cope
with life after death
WAY Widowed and Young is a national
charity in the UK for men and women
aged 50 or under when their partner
died. It’s a self-help group run by a
network of volunteers who have been
bereaved at a young age themselves,
so they understand exactly what other
members are going through.
WAY was founded in 1997 and now has more
than 1,500 members across England, Wales,
Scotland and Northern Ireland. The charity
provides peer-to-peer emotional and practical
support to young widowed men and women
– married or not, with or without children,
whatever their sexual orientation – as they
adjust to life after the death of their partner.
WAY has lively social groups that meet up
throughout the year – for drinks, meals
out, walks and picnics. Members organise
weekends away for adults and families, go
camping, have parties and offer an alternative
social life that doesn’t revolve around couples.
The charity also provides a secure members
only website and a Facebook group, which
both offer a safe place for members to meet
and chat online.
“Despite our grief, WAY members do know
how to laugh and have fun,” says WAY’s
Chairman Georgia Elms. “Supporting each
other is a great way to learn to live again after
the trauma of watching a loved one die. WAY
has been a lifeline for me. And many people
have made life-long friendships through WAY.”
Visit WAY’s website at www.
widowedandyoung.org.uk to find out more –
and sign up for the Friends of WAY newsletter.
You can also request a set of WAY leaflets at
[email protected].
Follow WAY on Twitter @WidowedAndYoung
Find WAY on Facebook at facebook.com/
WAYwidowedandyoung
7
The day of the Saatchi Bills Launch
I AM NUMBER 4
Mesothelioma UK Follow Up Survey 2014
The Meeting was held in Committee Room 2 at the House of Commons.
I had been invited as I had backed the bill for such a long time. I have
Mesothelioma and I have run out of treatment having had 4 lines of
treatment in the past.
My respiratory nursing career began
during the dark winter of 1998 when,
having worked nights for over 8
years while my children were young,
I figured it was time for a change and
the search for a new challenge began.
The National Mesothelioma Patient survey identified that there is a variation in
how often patients are seen in outpatients following initial treatment.
Mesothelioma Nurse Specialist
8
Nu
s
rse
nc
dO
Me
i
Cl
r
he
Ot
nc
nO
With regard to CT Scanning as part
of follow-up, again there was a range
in practice with the majority scanning
when the patient complains of
symptoms (63%).
All responders, except 2, thought it
would be helpful to have a Mesothelioma
Follow-up guidance document.
Meso UK Follow -Up Survey January 2014
Q5 - How frequently do you re-scan Meso Patients in
follow up? N=107
80
70
60
50
40
30
20
10
0
67
25
Q2 - Do you have a follow up protocol specifically
for Mesothelioma? N=107
With
symptoms
60
Never
3 Monthly
6 monthly
Meso Uk Follow -Up Survey January 2014
Q6 - Would a Meso Follow Up Guidance document
based on expert consensus be helpful? N=107
150
105
100
50
0
0
2
No
Not Sure
Summary
68
80
9
6
Yes
The findings of this small scale
project confirm the variation in
practise described by responders to
the National Mesothelioma Survey.
38
40
20
1
It would seem health care
professional would welcome a
consensus document to support the
follow-up management of patients
with Mesothelioma.
0
Yes
No
Unsure
Q4 - After initial treatment (surgery, chemo or radio) how
frequently do you see Mesothelioma patients? N=107
36
40
35
30
25
20
15
10
5
0
24
23
13
er
GP
th
O
Ap
Di
sc
n
pe
O
on
m
6
1
to
pt
ly
5
th
th
s
ly
5
on
Anne Moylan
ll
Pa
re
Ca
The majority (51%) of responders
estimated they review between 10
and 30 mesothelioma patients in their
MDT each year. A minority (35%) have
a follow-up protocol specifically for
mesothelioma patients with 80% saying
they have an established follow-up
practice. In terms of the timing of routine
follow-up there was a range in practice
but it was most commonly booked on a
2 or 3 monthly schedule (63%).
ek
MyWeb Page
http://onestopmesothelioma.co.uk/
In November 2013 I was offered the chance to do
a sponsored abseil down the Spinnaker Tower in
Portsmouth. So, on April 18th six of us (Lynne from
HASAG, Lesley Bishop (Consultant), three solicitors
from Irwin Mitchell and me descended 300ft down
this iconic building at various speeds and styles to
a huge welcome from a very supportive crowd. It
was incredibly scary but exhilarating experience
and it was a privilege to be able to raise some
money for both Mesothelioma UK and HASAG in
such an amazing way. Now we just have think of a
way to top that for next year!
sp
Re
ys
Ph
9
6
2
m
We will be watching as the storyline unfolds.
It has proved to be a huge learning curve already.
Answering calls to the Helpline is challenging,
sometimes heart breaking but always interesting.
The variety of care and support available to patients
and their families throughout the UK often astounds
me but people seem so pleased to have someone
listen to them and give some advice and support. I
have really enjoyed
the challenge so far.
rg
Su
ns
eo
19
13
8
3
The other great piece of News is that
Emmerdale have written into the Soap the
story line of Donna being diagnosed with
Mesothelioma. It will run for 5 months. We
Mesothelioma Warriors were so happy that
at last the disease is being given such a
high profile. On Facebook, on the wall of
Emmerdale there was a lot of discussion after
the first showing. It made us realise that there
are still a lot of people who know nothing
about Asbestos and the disease it causes.
They couldn’t see how someone so young
could have the disease. We Warriors tried to
correct them. We know that there are young
people showing signs and suffering with the
disease, whether they were exposed at home
while parents were doing DIY or they may
have sat in a classroom where asbestos may
have crumbled or even to stick a drawing pin
to put up their pictures on the classroom wall
is unknown, but it only takes one fibre in the
lung to cause this disease.
We had discussed the possibility of a mesothelioma
CNS in Portsmouth and were very interested in the
posts supported by Mesothelioma UK. In 2013
we submitted our successful expression of interest
and I was delighted to be appointed as number
4 in the UK. After a stumbling start, sorting out a
secondment for a colleague going on maternity
leave which had to be filled to release me, I started
on January 1st 2014.
50
ly
The politician was joined by a panel of
experts including Telegraph doctor Max
Pemberton in a live video stream from the
House of Lords where they called on the
public to support his Medical Innovation
Bill. Introduced by Lord Saatchi last
year following the death of his novelist
“The argument for this is particularly strong
in the case of cancer treatment.”
Watch at this Link History was made and
I was there https://www.youtube.com/
watch?v=9uxwl0e-DcU
60
50
40
30
20
10
0
th
Dr Max Pemberton chaired the meeting and I
would like to say what a lovely man. He was
so kind and so friendly and helped us not to
have any nerves about the meeting.
The Bill as presented in the Daily Telegraph is
a bill which would empower patients and
doctors to try out new innovative treatments
where standard procedures are failing and has
the potential to speed up medical advances.
Lord Saatchi will explain as he launches a
public consultation on the issue today.
Writing in the Telegraph earlier this month
Max Pemberton said: “If a treatment or
procedure has been suggested to be of
benefit, why not try it, especially as it might
offer new hope to patients?
In 2006 I was approached by Lynne and Diane
- two sisters who had set up a support group
(HASAG) in neighbouring Southampton after their
dad was diagnosed with mesothelioma in 2005.
They were keen to extend support to people in
Portsmouth and we worked together to secure
a venue and meetings are held on the fourth
Thursday of the month.
Mesothelioma UK Follow-Up Survey January 2014 Break down of responders - N=107
we
We all went inside the room and we were
joined by Mary Toms a Meso warrior who
had lost her dear husband to the disease. I
sat in the visitors chairs but was soon moved
as Lord Saatchi wanted me by his side as
Mesothelioma is just what he is talking about.
A cancer that has no cure and is terminal.
“Nothing new is tried and so nothing can
be learnt that might spare others. Scientific
progress is being halted by the law and fear of
negligence bills. This culture has to change.”
In September 2004 after a very interesting few
years, which included setting up an early discharge
scheme for COPD, I took up post as lung cancer
CNS – part time initially increasing to full time 18
months later. Mesothelioma has always been a
special interest not least because my granddad
died from mesothelioma in the 1970’s having
worked with asbestos in the shipyard in Belfast but
also because it seems to add to the difficulty of the
diagnosis to realise that it due to exposure they had
no control over.
The survey consisted of 7 questions and
there were 107 responders. The responders
consisted of 45 medics and 50 nurses.
8
Professor Fennell’s clinical specialisation is in
thoracic medical oncology and early clinical
trials, particularly in Mesothelioma, with a
particular interest in therapeutic targeting of
the core apoptosis pathways. Prof Fennell
leads a Cancer Research UK funded group
with a laboratory focusing on apoptosis,
drug resistance, and signature-based
therapeutics using the connectivity map
for accelerated, targeted drug discovery.
He is currently leading UK and international
clinical trials of novel targeted therapies in
Lung Cancer and Mesothelioma. http://
www2.le.ac.uk/departments/csmm/people/
professor-dean-fennell
Lord Saatchi’s bill has already received
huge public support and health secretary
Jeremy Hunt promised to support
legislation. Lord Saatchi said: “There may
not have been anything to stop Josephine
dying, but the terrible thought that haunts
me is that her death was a wasted death.
“Indeed, all 165,000 cancer deaths in this
country every year are wasted deaths
because science advances not one
centimetre as a result of them.
As fate would have it there was a part time post
advertised in Respiratory Outpatients which
sounded interesting and I took up my post on
March 1st 1999. At that time there was no formal
CNS support for lung cancer patients and we all
did a bit of everything, whetting my appetite for lung
cancer as a whole and mesothelioma in particular.
on
Dean was so pleased he had been asked
to talk and he did so with a very wonderful
knowledge of Mesothelioma. You Warriors
that live in his area of Leicester are so very
lucky to have such a committed doctor.
wife Josephine Hart to ovarian cancer in
2011, the bill seeks to give medics greater
freedom to test out cutting edge treatments
on dying patients. Currently doctors are
forced by the threat of legal action to stick
to standard procedures, even when they
are proving ineffective.
M
I could bring guests
with me so I invited
a Warrior, Ray my
Carer and devoted
husband, Prof
Dean Fennel and
Brian Sullivan from
Verastem, the drug
company behind
the COMMAND
Study. Brian was
in the UK visiting
the hospitals that are running or will run the
COMMAND Trial.
In an attempt to explore this in a little
more details we approached delegates
at the two day British Thoracic Oncology
Conference in January 2014 and asked
them to complete a brief survey about
their approach to follow up with their
mesothelioma patients.
Mesothelioma UK will seek support
from the British Thoracic Oncology
Group and the National Lung Cancer
Forum for Nurses to provide a
national consensus document.
Jill Lemon
Liz Darlison
Oral History service
available from the Boots
Macmillan team, based
in Nottingham
Everyone has a story to tell and you
are invited to record yours with an
experienced oral historian. The service
provides a unique opportunity for
people affected life threatening illness
to talk about their life history.
The offer is available through the Boots
Macmillan Volunteering group who provide
practical and emotional support to people
affected by cancer. By providing oral history
recordings, they are offering something
bespoke and ensure that they meet a variety
of needs for people affected by cancer.
If you are interested, the volunteer will speak
to you about the process and arrange to
meet in a mutual place. The session is no
more than one hour and is private between
you and the volunteer, who will bring along
the recording kit to record your story. You will
then be sent the recording to review, where
changes can be made, or if you are happy
with it, then further copies are made for you
to keep. There is no cost for this service,
other than an hour of your time.
If you are interested, please contact Mandy
(0115 9494325) or Clarita (07917270161).
DONT FORGET
TO LET US
KNOW ABOUT
YOUR ACTION
MESOTHELIOMA
DAY EVENTS
9
Mesothelioma UK Charitable Trust 1126083
Fundraising News
Well as always I am blown away
with how our year has started! as
spring began after a long winter,
you our wonderful fundraisers have
sprung into action and the stories
that you tell are just amazing.
Everyday
someone gets in
touch with their
personal journey
and experiences,
and wanting to
do something
positive to support
the charity and
help others with
mesothelioma.
This just shows how important it is that
we continue to get the message out there
and raise awareness as much as we can
to try and prevent any one else being put
at risk of this horrible disease.
I was fortunate enough to spend a long
weekend in London to watch a couple
of close friends take part in the London
Marathon and was bowled over to
see the thousands of runners coursing
through the streets in support of their
own personal charities and talking to the
people lining those streets like me who
where there to boost the runners on was
a very humbling experience indeed. I
was so proud that Mesothelioma UK had
four individual lady runners in the London
Marathon but sadly I never caught sight
of them among the thousands of multi
coloured running vests, but still I was
there to wish them all the best and I do
hope they all had a fantastic time and
achieved their own personal goals as I
do with all our fundraisers in what ever
challenge they choose to do. You are
all amazing people and we really do
appreciate your support.
Jill Lemon
Amanda Miller, Fran Milner and Rachel Thackray
2014 Forget-Mesothelioma-Not Spring Ball
“Well what can I say! firstly I am honoured to have been able to help raise
thousands of pounds to help Mesothelioma UK. My Father became ill in
July 2011 and since then my life has completely changed, I have met some
amazing people and made some very special friends.
Turning
such a
negative
thing into
such a
positive
has
helped
me on my
journey
immensely as I’m sure it has everyone
else. In December 2011 I met a lady who
I became friends with called Fran Milner
only by chance did we realise how much
we had in common, Fran’s father died in
2010 of the same condition as my Dad,
mesothelioma. I told Fran I was hopefully
going to arrange a charity event and she
said if I decided to she’d love to help as it
was something she would like to do.
So on 31st March 2012 we held our first
Forget-Mesothelioma-Not Ball at Kellington
Manor, it was a fantastic night and raised a
massive £4,500 and we were completely
overwhelmed and said we couldn’t wait
to do it again the following year. So the
year after in May 2013 we held our second
Spring Ball, and during this time we met
another lady called Rachel Thackray, Rachel
had also lost her father to mesothelioma
in 2012 and she too wanted to come on
board to help us with the preparations so
being as we were all working for the same
goal our team had grown. The second Ball
was held at Drax Sports & Social Club and
by sheer delight we raised a massive £7,500
and because it was such a huge success
everyone was asking ‘you are going to do it
again aren’t you?’ so after a lot of thought
we decided that we would like to make it a
hat trick and do our third and final ForgetMesothelioma-Not Ball.
So with preparations already going ahead
we decided we would hold it at the Drax
Sports and Social Club as they had been
wonderful hosts last year and that it would
take place on Saturday 5th April. Our
special guests for the evening was Kierston
Wareing the actress who recently starred
in Eastenders who is Mesothelioma UK’s
Patron and she was accompanied by her
friend, author B W Knight. We were so very
proud and delighted to have Kierston with
us on the night as she too had lost her dear
mum in 2012 to mesothelioma.
The night went even better than we could
ever have dreamed of and boy what a
way to say ‘au revoir’. We raised a huge
and overwhelming £11,000 and I know
that myself Fran & Rachel are completely
overwhelmed by the support we have had
over the last three years. We would like
to say a big thank you to everyone who
has helped us achieve our goals, raising
awareness about the dangers of asbestos
and mesothelioma and raising over £23,000
which is a wonderful amount to support the
work of Mesothelioma UK as truly without
them it would not have been possible. We
would also like to send our grateful thanks
to Corries Solicitors and Thompsons
Solicitors for there help, not only with the
ball but also personally as well. I am very
lucky that my father Dennis was able to
attend the first two balls however, he sadly
lost his fight on 30th June last year so was
sadly missed by everyone this year and
although Fran and Rachel’s father’s weren’t
there I can honestly say from my heart that
I am sure they would have been extremely
proud of both of them, for all the hard work
that was involved.”
Moustaches for Meso in March 2014
This event is growing in strength year on year and hopefully if all like
minded groups and individual people get together to spread the word
about how dangerous asbestos is, we will protect the next generation
from mesothelioma…Anyone can join in and help raise awareness and
as you will see again this year we have some wonderful pictures and
stories about what you have been up to with your taches!!!
Joanne Tasker - Joanne and her family have been
supporting Moustaches for Meso since 2012 when
her lovely Dad, Dennis Digby was diagnosed with
mesothelioma, but sadly he lost his battle against the
disease last year and
in his memory she has
continued to work very
hard with the local Head
Teacher Ms Kate Rowley
from Snaith primary school and with her wonderful work
colleagues in the Ophthalmology Dept at Goole & District
Hospital and between this wonderful moustache bearing
bunch they have raised £350.25.
Remembering
Alan Edmonds
Paul and Ethan Cowley - “In October 2012 at the age
of 34 I was diagnosed with pleural mesothelioma, since
then I have undergone 2 operations and 6 sessions of
chemotherapy which finished in April 2013. My meso is
now stable and me, my
wife Claire and our 3 year
old son Ethan have been
able to live a somewhat
normal life. When I heard
about Moustaches for Meso in March I really wanted to
help out and raise some money for Mesothelioma UK.
Thank you for your support” Paul and his little supporter
Ethan have raised a fantastic £556.25 including Gift Aid.
Irwin Mitchell - Solicitors across the offices of
Irwin Mitchell joined forces on 28th March 2014 and
successfully raised £566.56 for Mesothelioma UK. The
teams in Birmingham, Bristol and London got stuck
in either by growing or wearing a moustache to raise
awareness and provide funds for Mesothelioma UK.
Alida Coates, Partner at Irwin Mitchell and Trustee of
Mesothelioma UK donned a giant moustache and she
said: “It was great fun to get involved with Moustaches
for Meso this year – we got some very fetching photos from all of the offices! But
it’s particularly important for us to raise awareness of such a worthwhile charity. “In
the Asbestos Disease team we see first-hand how this terrible illness effects’ those
diagnosed with it and their families. It is incredibly important for us to support the
work of Meso UK which provides vital help, support and information to people affected
by the condition.” Phoebe Osborne Solicitor in Bristol
added, “The money raised from the Mo’ inspired bake
sale and dress down day will help to continue to fund
specialist Mesothelioma nurses and the telephone
helpline, the generosity and humour shown by our
colleagues wearing ‘Taches was heart-warming and I’m
sure that ‘Moustaches for Meso in March’ which started
in 2010 will continue to go from strength to strength!”
Alan Edmonds was remembered
in the local community where
the Parish Council asked his wife
Anna to unveil a commemorative
plaque in his memory on the green
alongside three silver birch trees.
As a member
of the Parish
Council from
September
2006 his
views on
planning and
environmental
issues
were always to the fore. He never sought
the limelight but was committed to the
conservation of what is best for the village
and to beneficial change. Ever a man of
action Alan was often frustrated by the slow
pace of progress within local government.
After his untimely death, the Parish Council
wanted to honour him and his dedication to
the village and have placed the plaque with
the trees that are sited on the green. He is
very much missed by all, especially his wife
Anna, daughter Kirsty, and granddaughter
Devon Skye.
Written by Amanda Miller
The 2014 Forget-Mesothelioma-Not Ball was held in memory of three wonderful men who had
touched so many peoples’ lives and who will be sadly missed everyday.
Mr Dennis Digby, Amanda’s Father, Mr Peter Bason, Fran’s father and Mr Toni Spooner, Rachel’s father.
10
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
11
Simon Parkin - The Husky Trail
Charity Challenge April 2014
In memory of Brian Parkin (1945-2013)
“I registered for this charity challenge, supporting the UK Mesothelioma
Charitable Trust, after chatting about the idea with my Dad a couple of months
before he died. He was an active man with a love of adventure and travel.
As young children,
my brother Karl and I
would listen to many
inspiring stories
about his antics and
adventures, which has
certainly impacted on
our lives so far. The
challenge was my way
of remembering and
celebrating his life and supporting a charity whose
great work will help support and provide guidance
to families affected by mesothelioma.
Our group met at 5am at Heathrow airport for
our early flight to Tromso via Oslo. On arrival in
Tromso we were met by our guides for the week
and transferred to the dog sled center, which
would be our base for the first night. At the dog
sled center we ate some pancakes and jam,
drank some coffee and then got down to the
real work…preparing for the next 6 days on the
challenge. The first night was spent in relative
comfort of a Lavvo (Scandinavian Style tent)
sleeping on reindeer skins for comfort.
Early the next morning we transferred to the
drop off point where we set about getting the
dogs harnessed and the sleds packed up with
essential items such as a food box, tents and
sleeping bags. At this point we were all pretty
much novices so we had to be quick learners as
we found ourselves in control of a Husky drawn
sled. Although the dogs are immensely strong, we
soon found that it wasn’t just a case of standing
on the sled enjoying the view letting the dogs did
all the work – it was much more! The first climb
of the day was hard work and we had to assist
the dogs to ensure we had the momentum to go
forward. I had five dogs in my team and over the
week I developed a real bond with them.
Over the next 6 days we had a great adventure
in an amazing environment. Each day brought
new challenges along with stunning scenery.
When we arrived at out first campsite, we looked
after our dog teams first and allowed them to get
some rest, food…and a roll around in the snow.
When the dogs were happy, we would put up
our tents, make a cup of tea (using boiled snow)
and then sat (well, squeezed actually) down in
out tents for the ‘main course’ … Drytech meals,
which involved pouring hot water into a bag of
dried stew, curry or chilli con carne, leaving for 5
minutes before eating…yummy. It was great to
spend the first night in the Arctic, hoping that our
sleeping bags would keep us warm.
Just when we thought we were getting confident
on the sleds, we got caught up in a snowstorm,
which lasted for about an hour. During that time
(which seemed like a full week), we were faced
with high winds, icy cold conditions, low visibility
12
“Remembering a Friend”
Performed by the
Michelle School of Dance
“Rachel Dodds was 29 years
old when she died of peritoneal
mesothelioma on 21st May 2013.
She was diagnosed with the disease
just 38 days before her death
and dogs that just wanted to run. It certainly was
a challenge but thankfully we all came through the
experience to tell the tale. After taking a detour
due to the snowstorm we set up camp for the
night and lay in our tents wondering what the next
day would bring.
After breakfast we set off on a beautiful off-piste
route, which just blew my mind. I had never
experienced such stunning scenery. It felt very
peaceful as we were surrounded by white in
all directions. However, when we reached our
campsite, the high icy cold winds picked up again
so we all had to work together to put up the tents,
which just wanted to fly away. We were all feeling
pretty exhausted at this point as the previous two
days had been fairly demanding. After another
night with limited sleep due to the high winds we
were soon up and ready to move onto the next
part of the journey.
The next morning brought more of the same
weather…cold and windy. However, we soon had
our tents packed up, harnessed the dogs and we
were away. The dogs were full of energy after their
breakfast and we set off at a really fast pace over
the frozen lakes. The next part of the route was
spectacular and it was great to have a few breaks
for photo opportunities. We made our way to our
last campsite with no fallers, which was a good
sign that our technical ability on the sleds was
improving. At our final campsite, we built a nice
fire and treated ourselves to some local sausages
cooked on the end of a stick. After a week of
Drytech meals the sausages tasted pretty good.
The final day involved some challenging runs
through the wilderness and ended with a long,
steep and icy run to finish us off. We then had
a two-hour drive back into Tromso for a much
needed shower
and change of
clothes before
heading out for
a celebratory
meal. The
next day after
breakfast we
headed back to
the airport for
our flight back
to Heathrow. The challenge was an amazing
experience in so many ways. I am very grateful
for all the support, kind words and donations
that I have received over the last year in memory
of my Dad. We set an initial fundraising target of
£1,000 but with so much generosity from family,
friends and work colleagues the current total
stands at £2,166.20, which is just amazing and
will support the UK Mesothelioma Charitable
Trust in their great work”.
Written by Simon Parkin
Rachel was a bubbly blonde, lovely to
look at, to talk to and to party with, never
realising how beautiful she was and how
she touched peoples’ lives with her humility
and personality. She had achieved much
in her short life, landing her “dream job” as
a pharmacy technician at the Royal Victoria
Hospital, Newcastle upon Tyne 2 years
earlier and contributing to charity fund raising
with her cycling, swimming and running. But
her great love throughout her childhood,
adolescence and young adult life was
dancing. She attended the Michelle School
of Dance from the age of 5 years, learning,
performing and in time, teaching until work
commitments prevented her from continuing.
Her final performance was at the 2006 show,
when she will always be remembered doing
the Time Warp in the finale.
This year’s concert was dedicated to
Rachel’s memory, to celebrate her life
and to raising awareness of the awful
disease that ended it 6 days before her
30th birthday. Proceeds from the concert,
featuring many dances performed by
Rachel in the past, raised £3,418, which
has been donated to Mesothelioma UK at
the request of Rachel’s family.
The school, ranging in age from 4 to 24
years, managed to give 3 performances
of 23 dances. The concert was a sell out
and for the audience as well as the dancers
old enough to have danced with Rachel,
it was a bitter-sweet occasion, giving rise
to tears as well as laughter and nostalgia.
Congratulations must go to Miss Michelle
for choreographing and producing the event
and her dancers for entertaining us. One
cannot help feeling that although Rachel
would have shunned such attention for
herself, she would have been delighted
to participate in the fundraising for such
a worthwhile cause, especially having the
chance to do the Can-Can!”
Anna Edmonds
‘50’s Rock ‘n’ Roll
Disco Night’
Pulham & St Mary
Horticultural Society,
Cheese & Wine Evening
Anna
organised a
50’s Rock n
Roll Disco
on 19th April
and singer
Garry Slade
performed
music from the
50’s and 60’s;
There was
also a Bar, Large Dance Floor, Raffle
and a vintage 50’s Clothing Sale. The
evening was held in memory of Anna’s
wonderful husband Alan who sadly died
last year of mesothelioma.
Pulham St Mary Horticultural Society
organised a Cheese & Wine evening
in memory and appreciation of Mr
Andrew Smith.
This is what Anna had to say…
“It was a resounding success; the hall
was full to capacity, the singer and DJ
were brilliant, and everyone had a really
good time, and are still talking about
it; there were over 80 people who all
bought raffle tickets and with the £5
entry fee we made over £400, and the
retro clothes rail sale, (which is ongoing
raised over £100 for Meso UK, so far)
but expecting a lot more from people
who did not get a chance to try things
on and some who could not attend
because of Easter commitments so we
will be bringing them to our next rock n
roll night this weekend.”
Andrew was our long term show
secretary, he was always a very active
member, initiating new ideas especially
for our annual shows. He made a great
impression and is sadly missed.
The evening was a huge success,
thanks to all Andy’s friends, workmates
& family, raising a large amount of
£612.50. Pulham St Mary is just a
small village in Norfolk so it was a
fantastic result and so well supported
by everyone. “
Moonlight Colourthon –
Hayley Wright, Natalie
Burge, Karen Hubbard
and Gemma Keeling
Hayley and her sister Natalie
are taking part in the Moonlight
Colourthon along with their best
friends Karen and Gemma in
memory of their lovely Dad.
This is what Hayley has to say; “I am off on
a 13 mile long walk in July in memory of my
dad and to raise awareness of the dangers
of working with asbestos. My dad came
in contact with asbestos in his very early
working days and this lethal disease does not
rear its ugly head for approx 30-50 years later
when men like my dad are then much loved
husbands, dads and granddads.
Tricia Lilley – Soup Kitchen
On the 15th April in Braughing Village Hall, Tricia Lilley
hosted a Soup Kitchen fundraiser in memory of her dear
partner, Ann Smith. Ann sadly died of mesothelioma in
September 2012 and Tricia wants to raise awareness
about the dangers of asbestos in schools and funds to
support Mesothelioma UK.
Tricia said, “Ann had been a primary school teacher all of her working life and was exposed
to asbestos at some point in her career. Exposure to asbestos is the only known cause of
mesothelioma and it may have happened to Ann from anything between 10 and 40 years
before she died. Most of our friends are teachers and ex-teachers. I think it’s important
that we raise awareness of the cancer without frightening anybody. Nobody knows how
many people are affected. There will be other teachers that will be affected by it – not the
professions that you might think of.”
Now, I never walk anywhere so its quite a
challenge for me to set out on this stroll but
I will be thinking of dad the whole way and
the sacrifice he made” and Gemma said “I
am walking 13.1 miles through the night to
support a brilliant cause that effected my best
friend and her family last year, and I wouldn’t
want to see another family go through what
they did. So lets’ stop another SPECIAL
person being taken by this awful disease.”
The lovely girls will be setting out on their
moonlight stroll on the 26th July.
For more information visit www.ride24.com
Following the huge success of the ‘Soup Kitchen’ Tricia said: “I am absolutely delighted
with our soup lunch and I am so grateful to all those who helped me and to all that came
and enjoyed the lunch and so generously donated money for such
a good cause. I had a fantastic team of friends who helped me
make it such a success. They cooked homemade soups, breads
and cakes, as well as organising a raffle and helping me to serve 60
plus friends, family, neighbours and also those people who came
to support us because they knew someone with the disease.” The
Soup Kitchen raised over £700.00 but due to the generosity of a
donator took the total to an amazing £1000.00.
Written by Michelle Hankinson
13
Boyes Turners’ Marathon Girls - Niamh, Enisa & Jo
H u lme
C h r is t ia n
da
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a n ra is e
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£250.00
e ll
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Ru
Mu dd y
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id M acB
ea
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h us b a n d , a wo n de r f u l
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Tr iat hlo n
£766.88
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9.75
Ja ne W
il s o n s’ C
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g £190
Jame s E
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B o o tc am
p C h a lle
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710
e ld –
ie C a nfi o r
n
a
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me s o in n a n d ra is e d
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z ing £
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a
an
“Until 6th April 2014 I thought running a marathon
was reserved for people who were slim with long
legs who ran like Mo Farah. My self and my friends
Enisa and Jo do not fall into this category. Whilst
we enjoyed running we tended to run for an hour
or so exchanging our favourite recipes as we run
around. For some reason food seems to be the
most popular topic. I still am not quite sure how
but we ended up entering the Brighton Marathon.
Although each of us had run a half marathon, none of us had run a full marathon. We had
lots of lovely timetables and schedules all discussed over a glass of wine. The scheduled
training did not quite go to plan. Each of us fell ill at one point or another along the way,
and we ended up running whenever we could. As the day drew nearer we honestly did not
know what to expect. We were excited and terrified in equal measure. The day started
well, we were up at 5am and the excitement and adrenalin kicked in. After a ridiculous
number of trips to the loo we lined up at the start. Paula Radcliffe started the Brighton
Marathon so it was wonderful to see her and a real boost as all the runners ran past her at
the start. Having never been to Brighton before, I thoroughly enjoyed running around the
streets of Brighton and Hove. The support was tremendous.
Unfortunately early on in the race our friend Jo began to struggle and retired at 13 miles. Enisa
and I carried on, replenished by bananas which Enisa’s husband Steve gave to us at Mile 13.
Mile 13 onwards was totally new territory for us. We knew from reading about other
marathon runners’ experiences that we would eventually hit the wall. All I know is that Mile
17 and Mile 21 were really tough so we think we hit two walls!
We made sure to take every available drink. By the end of the race we were fit to explode
we were so full of fluids. The people of Brighton were extremely generous with their gifts
of banana cake, nuts and of course those very welcome Jelly Babies. As we struggled on,
we looked in awe at all those amazing runners who ran in costume, including the rhino, the
tiger and the Storm Trooper. We were running close to Peppa Pig for a lot of the race and it
was really uplifting to see the look on the children’s faces as Peppa Pig ran by.
At the end of the race we were almost pinching ourselves, we could not believe that we had
actually completed it. Thank you to all the volunteers and organisers for such a great event.
As we were running and when it got tough we thought of all the people who had supported
us and helped us and we are absolutely thrilled and delighted to have raised £1,066.00
for Mesothelioma UK, far exceeding our target. I honestly believe that it was the donations
and good wishes of family and friends that was the difference between finishing and not
finishing our first marathon. I would say to anyone if you have ever thought or even dreamt
of completing a marathon, do it! If we can do it, anyone can! We raised £1,291.25!
Je n n if e
r Jac k s
on
L o ndo n
M a rat h
£1,699.5 o n
5
Written by Niamh Sherwood
Lo uise
Me ad
the R
ra n
M a ra e adi ng H a l
f
th on
and r
aise d
£767.
50
Gerry Slade
nn an –
C h r is Bre
H a lf £855
Wilms lo w
n
ie r L o n do
K a te G o d
5
n £855.2
M a rat h o
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Je s s ic a L o
6
.0
4
9
n £5,0
M a rat h o
Gerry is a Mesothelioma UK
funded Specialist Nurse. Gerry
and her son Laurence took
part in the ‘White Horse Half
Marathon’ and here is what
Gerry has to say… “Yay!!
Delighted to report mission accomplished! Official
timings not yet announced, but think we did it in 2hrs
22 or thereabouts! With both daughters pregnant (it’s
amazing what lengths they were prepared to go to!) my
younger gorgeous son stepped in to keep me going,
shielding me from the strong wind. With fabulous family
support and thinking so much about you all, it was a
great day! Gerry and Laurence have raised an amazing
£3,608.43 and the funds raised can help towards
training more Specialist Nurses to support patients and
their families suffering from this devastating disease.
Gerry and Laurence raised a fantastic £3,400.
Anne Moylan
Anne Moylan a Mesothelioma UK
funded Specialist Nurse joined
Lynn Squibb from (HASAG),
staff from the Queen Alexandra
Hospital, Portsmouth and staff
from Irwin Mitchell in an early
morning
abseil down
the Spinnaker
Tower
on Good
Friday 2014.
Mesothelioma
UK and
HASAG were benefactors of
donations from friends, family and
colleagues. Meso UK received a
fantastic £800.
Chris Scopes –
Sheffield Half Marathon
“So here I go again running the
Sheffield Half Marathon 2014,
hoping to beat last years’ time
(2 hours 7 seconds).
I’ve had my
running shoes on
and I am on track
and feeling more
confident than
this time last year.
When my dad was
diagnosed with
Mesothelioma a year ago we did not know
what to expect and feared the worst. Having
undergone one batch of chemotherapy and
briefly being told he was in remission, he
is now once again undergoing fortnightly
chemotherapy in London. He is a fighter and
continues to remain true to his character.
Never a complaint or bad word has left his
lips, ask him how he feels and he quietly
nods and says “yes alright”. He never gives
up, still loves playing with the grandkids,
going dancing (although not so much actual
dancing at the moment) and enjoying life
whenever he feels well enough. He simply
gets on with it and takes whatever is needed
to beat this. New treatments are being
discovered and trials are developed. Every
new discovery is a positive step towards
people with Mesothelioma living a fuller
longer life. That is why I am raising money
for Mesothelioma UK Charity Trust. Wish me
luck and thank you so much for your support.
Many of you have taken this journey with us
and for that I am very grateful.”
Update: “Just thought I’d drop a quick email
to let you know that even though the Sheffield
Half Marathon was ‘officially’ cancelled due
to lack of water at the water stations, I was
one of the many runners who chose to run
anyway. Luckily, the timing chips remained
active and I managed to complete the course
in 1:58:41 secs, which beat last years’ time of
2:00:07 secs”.
Chris also raised a wonderful £673.75!
14
15
William Prinn
William is 17 years old and has very recently lost his lovely Grandad
Eugene, so in his memory he put on his running shoes and took part in
the Bupa Great Manchester Run on the 18th May.
Williams mother Gean said, “I have had a
very emotional day, but am brimming with
so much pride for William in doing this run in
memory of his Grandad! I have attached a
before and after picture of Will before the run
and after sporting his wonderful medal with
his sister Poppy and after the race we went for a celebratory meal and
the song on the juke box was “Hello Eugene”! He was definitely with us
today! R.I.P. Eugene Morgan.” William raised a fantastic £500.
Action Mesothelioma Day
Earlier in the year Mesothelioma UK held a meeting with like minded groups across the
UK to discuss this years Action Mesothelioma Day to discuss what the differing groups
thought about how we could make this a unified national event and what the focus should
be about on the day.
Having debated and discussed, it was decided that the focus should be Research. The
groups’ decision was that we would call for long-term investment into Mesothelioma
Research and to further unify all events across the country whether it be a service of reflection,
a conference type of event or a coffee morning we would finish off with a Strawberry Tea
to mark the days occasion. We do hope that everyone around the country will join in and
advertise their ‘Strawberry Tea for Action Mesothelioma Day 2014’ which will take place on
Friday 4th July. If you would like to advertise your event on our website please do contact us
on 0800 169 2409 or email: [email protected] and if after the event you would
like to put your write up and pictures about your Action Mesothelioma Day on our website or
in our newsletter again please send them to our email address as above.
Remembering Trevor Lewis
Trevor Lewis was a cricketer who having hit six sixes in an
over while playing in his local team made national headlines,
and so in honour of Trevor, a local charity cricket match was
organised on 5th May.
Trevor during his cricketing days played for Royton, Crompton,
Milnrow, Castleton Moor and Werneth, but Royton was
the club closest to his heart. The teams were made up of a
Royton XI and a mix of players from Crompton & Milnrow. The
Crompton & Milnrow XI was led by Trevor’s son-in-law Carl
Taylor and many of the players in both teams had played with Trevor when he was secondteam captain, which led to his notoriety on the pitch while leading his team as captain hit six
sixes in an over against Crompton.
The day was a huge success and very well supported by
the local community and a minutes silence was held before
the start of the game in respect of Trevor. Carl married to
Gillian, said of his father-in-law “Trevor was always the first
person I rang after a game at Crompton. Everybody loved
Trevor. He was one of the nicest people you would meet
and was very funny, too.”
The Charity Cricket Match raised over £7,000 and the family wish all proceeds will be
shared between Mesothelioma UK and GMAVSG (Greater Manchester Asbestos Victims
Support Group). Trevor’s daughter Elisabeth Lindley said “It remains a mystery as to
where my father was actually exposed to Asbestos as he never worked in any of the
associated industries, so we must continue to fight the good fight - for all the affected
victims and of course their families”.
16
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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