- Pancreatic Cancer UK

May 2016 Issue 2
Progress
Every issue we look at the progress being made in the field of pancreatic cancer. We feature
your stories, expert opinions, information on the research we invest in and how, with your
help, we are lobbying for greater recognition of the disease.
Tough Mudder, April 2016
2.
Key to Survival
Our new campaign
puts patients at the
heart of developing
new treatments.
5.
He did it!
Super fundraiser
Richard Farquhar has
walked 3,000 miles
for us.
7.
Purple Lights
Paul Hallett tells us
why he is lighting up
Blackpool Tower for
the third year.
9.
Support for you
Julie Simper tells us
how the Pancreatic
Cancer Survivors
Group has helped her.
Progress / News
Up and
coming
July 2016
RideLondon – Surrey 100
Join 29,000 riders in the
UK’s fastest growing cycle
ride on 31st July.
September 2016
Great North Run
The world’s largest halfmarathon takes place on
11th September.
Will you be taking part?
Thames Path Challenge
A true test of stamina
and determination. Tackle
100km with a target time
of 24 hours, 50km in under
12 hours or 25km in 6
hours (10-11th September).
December 2016
Christmas Carol Concert
On 2nd December we will
once again be welcoming
the festive season with
carols and readings. Details
on our website soon.
Together we
can take it on
It’s been a busy few months at Pancreatic Cancer UK
with the launch of our new campaign, Key to Survival, to
ensure that patients across the UK get access to the best
available treatments on the NHS. We also unveiled our
Patient Charter which sets out the minimum level of care
patients should expect, because for too long they haven’t
received the care and support they need and deserve.
Find out more inside.
I want to say a special thank you to Richard Farquhar who has
just completed his Walking The Courses challenge. In the last
year Richard walked to every race course in the UK, clocking
up 3,000 miles and raising hundreds of thousands of pounds
for our work. He also helped raise awareness of pancreatic
cancer, its symptoms and what we are doing to help tackle it.
I also want to thank you all for your on-going support. Whether
you’re a regular giver, a marathon runner, helping us to
campaign or are supporting us in another way, you really
are making a difference.
The fight against pancreatic cancer is tough, but together we
can take it on. Thank you.
2
Progress Issue 2 May 2016
Alex Ford, Chief Executive
Pancreatic Cancer UK
Progress / Feature
Our new Key to Survival campaign
Putting patients at the heart of developing new treatments
“Despite some
recent progress,
pancreatic cancer
still has one of the
worst survival rates
and every year
thousands of families
lose loved ones
to the disease. It
shouldn’t be that way; and things need to
change. That’s why we’ve launched Key to
Survival. The campaign will call for changes
to be made that will foster an environment
where more new treatments for pancreatic
cancer can be researched and trialled and,
if proven to be effective, approved for use
on the NHS across the UK.”
Anna Jewell, Director of Operations
Pancreatic Cancer UK
Our Key to Survival campaign goals:
1. Unlocking access to new treatments
2. Unlocking access to current clinical trials
3. Unlocking more clinical trials for the future
• Videos of patients and research nurses
talking about what trials are, the benefits
and drawbacks of trials, and what you might
expect if you take part
• Short, easy to understand online
information on current trials.
When Karen was diagnosed with operable
pancreatic bile duct cancer in 2010 she
was told there was no chemotherapy for
this type of pancreatic cancer. So she
entered the five year BILCAP trial which
compares surgery and Capecitabine
(chemotherapy) with surgery alone.
“Clinical trials are very important. If you
think about it, everyone who has chemo
now is on a drug that someone at some
point took in a clinical trial.
So hopefully by doing this trial, someone
in the future can be given this drug which
will help extend their life and give them
more time with family and friends.”
Watch Karen’s full story on our website.
We’ve already made progress in tackling these
goals. In February we called for changes
to the way new drugs and other treatments
are assessed by the National Institute of
Health and Care Excellence (NICE). And, to
coincide with International Clinical Trials Day
on 20th May, we launched our new online tools
and information for patients, carers and health
professionals including:
•Our Trial Finder – to make it easier to find
out which pancreatic cancer trials are open
across the UK
Karen Stead
To find out more visit pancreaticcancer.org.uk/keytosurvival
pancreaticcancer.org.uk
3
Progress / Views from the field
My Clinical
Pioneer Award
By Keith Roberts
healthcare professionals and their strategy for
the future. We were all impressed. We then
pointed patients in the charity’s direction for
information and support and thought of them
for funding for our research projects.
Why did you apply for funding from the
Clinical Pioneer Awards scheme?
Our project fits perfectly with the aims of the
Award. We had high hopes that the project
would genuinely offer improved patient
experience and outcomes and so the charity’s
help was sought.
Keith Roberts and Fast Track
Nurse Yvonne Steele
Keith Roberts is an NHS surgeon and
clinician who specialises in pancreatic
cancer. His current research is funded
through our Clinical Pioneer Awards
scheme which supports innovative
research in a clinical setting that may
otherwise not get funding. Keith tells us
about his work.
Why are you interested in pancreatic cancer?
During my training I observed big, positive
changes in the outcomes of people with
different cancers. Pancreatic cancer stood out
for the wrong reasons. I can’t believe that in
the future the outlook will still be the same
and I wanted to be part of the reason
outcomes improve.
When did you first become involved with
Pancreatic Cancer UK?
Pancreatic Cancer UK visited surgeons
and other clinicians at University Hospitals
Birmingham in 2014 to tell us about the
charity, what they did for patients and
What is the focus of your research and what
does it entail?
Most patients who have surgery for
pancreatic cancer develop jaundice. The
majority of these have a stent placed to
relieve the jaundice before surgery. However
this takes time, is unpleasant and associated
with complications and doesn’t help to
treat the cancer. So it seemed that the only
reason to place a stent was the failure of the
wider system to be able to operate on these
patients more quickly.
Pancreatic Cancer UK’s funding has been used
to provide an external review of the pathways
that patients with pancreatic cancer take from
diagnosis to surgery. This includes a new ‘fast
track’ pathway that enables people to have
early surgery to avoid stenting, that is being
developed at University Hospitals Birmingham.
What impact do you hope your research
will have?
With all of the reasons to perform surgery
early without placing a stent, why are we not
already doing this within the NHS? We hope
to understand this and more importantly learn
how to deliver and then continue to deliver
early surgery for our patients. We hope that
lessons learnt will be transferable throughout
the NHS across the UK.
To find out more about our Clinical Pioneer Awards visit our website at
pancreaticcancer.org.uk/pioneerawards
4
Progress Issue 2 May 2016
Progress / Your stories
My Story:
Walking The Courses
By Richard Farquhar
Then in 2014, John Hills, a legend in the racing
world, lost his life to pancreatic cancer just two
months after being diagnosed. Like me, he had
four kids and was around 50, and it made me think
again - maybe Walking The Courses could work.
So with the help of my daughter, Minty,
we planned an itinerary, got the support of
celebrities from the racing world and contacted
the courses. The idea was to walk to each
course in time for a race meeting and then
make a fundraising event out of the visits.
Without a doubt, Walking The Courses was
the most extraordinary experience of my life.
My father was diagnosed with pancreatic cancer
in 2011 and until then I knew absolutely nothing
about the disease. Once I’d read more about it,
I decided to do something to help. The stats on
pancreatic cancer are dreadful; there’s so little
awareness and so little progress that I wanted
to do something that mattered, which would get
people talking, build awareness and raise funds.
I’ve always loved horse racing but after a chat
with a friend I realised that I’d only been to 28
of the UK’s 60 race courses. And that’s when
the idea for Walking The Courses started – why
didn’t I walk the length of the country and visit
every race course to fundraise and to raise
awareness of pancreatic cancer in the racing
world? If that’s not the personification of a midlife crisis, I don’t know what is!
And on 20th March 2015, I set off from
Newmarket, criss-crossed the country visiting
every one of the 60 racecourses – that’s 3,000
miles - before arriving back in Newmarket on
14th April this year for the Craven Meeting. I
celebrated my 21st at this meeting with my
father and then went with him every year until
he died, so this was a very special day for me,
in many ways.
The support I received throughout the 13
months of the challenge was incredible. And I’m
proud to say we’ve raised nearly £200,000 for
Pancreatic Cancer UK. It wasn’t always easy but
it has been the most unbelievable, invigorating,
inspiring, fulfilling experience I have ever had.
Richard’s challenge may be complete, but
his and Minty’s fundraising and awarenessraising hasn’t slowed down. Richard has
achieved something truly incredible and
we are extraordinarily grateful for his
dedication, over the past two years,
in realising his dream.
But then I thought about all the reasons why I
shouldn’t, such as my family, and all the other
responsibilities a man my age has. So I put the
idea aside.
Are you inspired by Richard’s story? Find out how you can fundraise for us.
pancreaticcancer.org.uk/fundraise
pancreaticcancer.org.uk
5
Progress / Research
Andrew Biankin
This is huge step forward as it means in the
future doctors could predict which of the current
treatments is most likely to help an individual
patient. It could also lead to the development of
new drugs that combat each of the four
different types of disease.
But this isn’t the only breakthrough.
Latest research
could unlock
new treatment
strategies
Pancreatic cancer is tough; tough to
research and tough to treat, but new
research takes us two steps closer to
transforming the way it’s treated.
The method of treating pancreatic cancer hasn’t
really changed in the last twenty years. And
whilst there are different types of chemotherapy
available, none of them are targeted and doctors
still aren’t able to predict which particular
treatment a patient might respond best to.
But a breakthrough uncovered by Professor
Andrew Biankin and researchers at the
University of Glasgow could change that.
The team examined pancreatic cancer tumour
cells to better understand key aspects of
the disease including the mutational profile
and changes in DNA. And they discovered
that rather than there being just one type
of pancreatic cancer, there are in fact four
different types of the disease. Each sub-type
is distinct with different causes, survival times,
and crucially, different responses to treatments.
6
Progress Issue 2 May 2016
Pancreatic Cancer UK-funded scientists in London
have discovered that the level of a molecule called
miR-21 in the blood stream corresponds exactly
with the level of it found in the pancreatic tumour
itself. This makes it a reliable marker for the
disease and demonstrates that doctors could
identify patients with more aggressive tumours
simply by taking a blood sample.
Funded through our Research Innovation Fund
and devised by Dr Chiara Braconi at the Institute
of Cancer Research, the test was put through
its paces in a small clinical trial on patients
with inoperable tumours which hadn’t spread
outside the pancreas, and who had been given
chemotherapy followed by chemo-radiotherapy.
And the results were clear. The patients whose
miR-21 level was low benefited from the
treatment combination for a year on average,
whereas those with high levels of miR-21
had far more aggressive tumours and needed
alternative treatments after just 3.5 months.
This was a small study, but if these results can
be replicated in a larger clinical trial, it could
mean a quick and easy blood test could show
who would benefit from chemo-radiotherapy
after chemotherapy – a potentially
life-changing discovery.
“The findings from both of these projects
are incredibly exciting for anyone affected by
pancreatic cancer, as they should mean that
in the future patients can be given
the right treatment at the right time.”
Leanne Reynolds, Head of Research
Pancreatic Cancer UK
pancreaticcancer.org.uk/research
Progress / Campaigns
Why I turn Blackpool
Tower purple
By Paul Hallett
Every November since 2014, Paul Hallett
has turned the North West’s most famous
landmark purple for a night to mark
Pancreatic Cancer Awareness Month,
and he’s doing it again this year.
Here he explains why.
Why did you pick Blackpool Tower?
I wanted to choose somewhere that people
had heard of, and Blackpool Tower is probably
the most prominent landmark in the North
West. Plus I’d worked there when I was
younger so I knew better than most just what
an imposing sight it is.
How did you go about organising the night?
By sending lots of emails! At first I couldn’t
find the right person to speak to, but eventually
I spoke to someone who said it might be
possible to have the Tower lit up in purple
on 1st November 2014. They had some
discussions amongst themselves before
finally giving me the nod.
How did you feel when you saw Blackpool
Tower in purple for the first time?
It was amazing - I couldn’t believe we’d done it.
It made all those emails and all the
arranging worthwhile!
What made you decide to get involved with
Pancreatic Cancer UK?
My dad was diagnosed with pancreatic cancer in
2010 but he was lucky really, they found it early
and he was given treatment that worked. Not
everyone is like him though, and I wanted to do
something to help charities like Pancreatic Cancer
UK do more research so that more people can
get treatment, and live with it like my dad has.
Why are you doing it again this year?
Because people need to know more about
pancreatic cancer. Dad was ok, he was one
of the 5% that live more than five years after
being diagnosed, but not everyone is so lucky.
We have to do everything we can to help find
more treatments to beat the disease for good.
Why turn buildings purple?
I’d done a few bits of fundraising for Pancreatic
Cancer UK but I always like to keep my eye out
for other ways to help so when I saw an advert
in their newsletter asking people to get involved
with Pancreatic Cancer Awareness Month by
lighting up buildings in purple, I thought I could
give it a go.
Check our website for updates on all the events planned for this year’s Pancreatic
Cancer Awareness Month. pancreaticcancer.org.uk/getinvolved
pancreaticcancer.org.uk
7
Progress / Campaigning
Our new Patient Charter outlines the care
every patient deserves
“Only 73% of pancreatic cancer patients said they
were given a complete explanation of their test
results in an understandable way.”
2014 Cancer Patient Experience Survey (CPES) in England
Too often patients tell us that they haven’t
received the care they’ve needed during
and after diagnosis. We think this is
unacceptable and have launched a new
Patient Charter to ensure that everyone
with pancreatic cancer gets the treatment
and support they need and deserve.
Unveiled at a reception at the Houses of
Parliament, the Patient Charter is a key part of
our Gold Standard campaign, which seeks to
drive up standards of care, and sets out the
minimum standard a patient should expect.
These are:
1. Your case should be assessed by the
relevant health professionals, and you
should be treated by a specialist team
2. Your diagnosis and your treatment options
should be clearly explained to you
3. Your treatment should be tailored to your
own situation and any symptoms and sideeffects should be properly managed
4. You should be treated with compassion,
dignity and respect, and be given practical
and emotional support
Supported by the Pancreatic Society of Great
Britain and Ireland, the Association of Upper
Gastrointestinal Surgeons, Great Britain and
Ireland Hepato Panctreato Biliary Association
(GBIHPBA) and the British Society of
Gastroenterologists, patients can use the
Charter as a tool to raise concerns with their
treatment teams and where necessary, to
demand better care.
“The shock, fear and
lack of information
after my diagnosis
was overwhelming. If
someone had put this
guide in my hand when I
was feeling so vulnerable
it would have felt like gold
dust. This guide may look modest but it
gives patients and loved ones a confidence
that is essential at an incredibly stressful
and awful time. Patients have every right to
be able to ask questions and every right to
expect reasonable care. I want to see every
patient and family given a copy.”
Lynne Walker, pancreatic cancer survivor
5. Your family should be offered information
and support (but patient confidentiality
must be respected)
6. If necessary, you should have access to
high-quality, well-coordinated palliative care.
8
Progress Issue 2 May 2016
You can download your copy of the
Patient Charter today by visiting
pancreaticcancer.org.uk/goldstandard
Progress / Support
The support group for people like me
By Julie Simper
In 2009, at the age of
39, I was diagnosed
with a rare type
of pancreatic
neuroendocrine
tumour. Thankfully
doctors were able to
operate successfully
and I didn’t need
further treatment.
I found accepting my cancer extremely difficult.
Having survived such a rare type, I felt very
alone and in doubt of where to turn for advice.
I suffered from depression once my physical
recovery was complete and sought help from
Macmillan Cancer Support. A real turning
point for me was when I went to one of the
events that they had organised in conjunction
with Pancreatic Cancer UK. Meeting other
patients and sharing stories was a completely
enlightening experience for me, and the other
people there.
To be able to meet other survivors and
ask questions about their experience of
post-operative effects and ongoing medical
problems meant that the feeling of isolation
went, finally there was someone to talk to
who really understood. Unfortunately talking
to others who have had cancer, but of differing
types, is not the same - the pancreatic
cancer experience is so unique. Many of
us commented at the end of the day that
we would like to stay in touch and meet up
regularly if possible. From there the Pancreatic
Cancer Survivors Group UK was born with me
as the group co-ordinator and Pancreatic Cancer
UK helping to support us with arrangements.
We also have a private Facebook group, and
the best thing about this for me, is that we
support one another; that people can feel free
to post without concern that the ‘wider world’
can see it and there is always someone that
answers and offers support. We share our joys
and our woes, we celebrate together (online
of course) and we commiserate together too.
We have also met up twice since the initial
meeting for a weekend gathering at venues in
the middle of the country.
You can join us by searching for the Pancreatic
Cancer Survivors Group UK on Facebook and
clicking ‘join group’. I will then respond asking
for a brief outline of your story. There are now
38 in the group but we want to grow and
would very much welcome new members.
For more information on Support Groups visit pancreaticcancer/supportgroups
pancreaticcancer.org.uk
9
Progress / Fundraising
Emirates Stadium
plays host to An
Evening with Suggs
and Friends
On 17th March our Ambassador and Madness
frontman, Suggs, took over a suite at the Emirates
Stadium to host the annual An Evening with
Suggs and Friends. Suggs was joined on stage
by Jools Holland, Chris Difford of Squeeze and
singer songwriter, Anne-Marie at this sparkling
fundraising party. This year’s event raised nearly
£100,000 to add to the £330,000 already raised
for the charity from previous years’ events.
Gala Concert
In the iconic Royal Festival Hall on 21st April, almost 1,000 people enjoyed
exquisite pieces of music by Britten, Mozart and Bruch. With some of the
UK’s best known musicians and an appearance from Olivier Award winner
Imelda Staunton, this truly was a gala concert to remember.
Bower Retirement Services
support our work
Pancreatic Cancer UK is delighted to announce that we have been chosen to benefit
from Bower Retirement Services’ first annual charity dinner, to be held in June at the
prestigious Houses of Parliament.
Geoff Charles, CEO of retirement lending
specialist Bower Retirement, says “I am absolutely
thrilled that we are able to host this event with
our clients, aiming to raise as much as we can for
two charities close to my heart, St Francis Hospice
and Pancreatic Cancer UK. It has been 10 years
10
Progress Issue 2 May 2016
since my father passed away from the disease and
hosting this dinner as a tribute is a true honour.”
This special event will see guests enjoying an
evening of entertainment with speakers including
Andrew Rossindale MP and an exciting auction.
Progress / Fundraising
You have sprung into action this Spring
We’re not even half way through the year
yet, but already hundreds of dedicated
supporters have pushed themselves to
the limit to raise funds to help us tackle
pancreatic cancer.
After enduring weeks, if not months, of
training, our supporters took part in a range
of different sporting events across the UK.
This included the Virgin Money Giving
London Marathon – the world’s most famous
marathon – the Vitality London 10,000 and
the first of this year’s Tough Mudders, the
ultimate assault course challenge.
Many of our participants were motivated to
take on a sporting challenge for us because
they have been touched directly, or indirectly,
by pancreatic cancer. Some took on their event
as an individual and some, like those from PR
agency Cirkle, formed a team. Thanks to the
generosity of everyone who sponsored our
fundraisers a combined total of over £300,000
has been raised.
There are still lots of other exciting sporting
challenges to come in 2016. You could pull on
a purple t-shirt and take part in a sky-dive, the
Thames Path Challenge, Great Wall Trek for
Hope or one of the many other events in our
calendar. None of them are easy, but each and
every challenge is a brilliant way to support
our work and create a brighter future for
everyone with pancreatic cancer.
“We’re proud supporters of Pancreatic
Cancer UK having lost a very dear
colleague to this dreadful disease.
We regularly take part in fundraising
initiatives and our latest Tough
Mudder saw 20 of our team take on
the challenge, to raise £7,000 to help
eradicate this awful cancer.”
Caroline Kinsey, Founding Director of Cirkle
“It’s amazing that
so many people are
pushing themselves to
the limit to support our
work. Every step they
take, and every penny
raised, will help us
lead the fight against
pancreatic cancer.”
Leeann Wilmer, Head of Events
Pancreatic Cancer UK
To find your perfect event, please go to our website
www.pancreaticcancer.org.uk/fundraise or call us on 020 3535 7090.
pancreaticcancer.org.uk 11
Progress
Sixteen Sunsets
Music inspired by love and loss
poems that are a testament to the husband
and father they knew and loved.
Featuring some of Roger’s favourite musicians,
Jehane and Hartley’s work has been released
as an album entitled Sixteen Sunsets, which
stemmed from a poem Jehane wrote not long
after Roger was diagnosed and refers to the
number of sunsets that astronauts see each
day as they orbit earth.
When the much-loved actor Roger Lloyd
Pack very sadly died of pancreatic cancer in
2014, his wife Jehane Markham and their
middle son Hartley, found comfort in writing
about their grief. Together, they combined
poetry and rap with blues, folk and soul to
create a poignant collection of songs and
The money Jehane and Hartley have raised,
and continue to raise from the album sales,
will enable us to continue the fight against
pancreatic cancer.
To listen to samples and buy your copy, visit:
sixteensunsets.bandcamp.com/releases
Pancreatic Cancer UK
6th Floor Westminster Tower
3 Albert Embankment
London SE1 7SP
020 3535 7090
[email protected]
pancreaticcancer.org.uk
/pancreaticcanceruk
@pancreaticcanuk
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Registered charity number 1112708 (England and Wales), and
SC046392 (Scotland)
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forum.pancreaticcancer.org.uk
Talk to a specialist nurse via our Support Line:
0808 801 0707 (Freephone)
[email protected]