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.

September 2017 Issue 6

4. Get purple

Wear, play, bake or shave to raise funds and save lives this November.

6. We did it!

Abraxane has finally been approved for use on the NHS in England.

8. Future Leaders

There’s a new home for ground-breaking research in Glasgow.

11. Take on a run

Pull on your trainers and sign up for a running event.

Get purple and save livesPancreatic Cancer Awareness Month

2 Progress Issue 6 September 2017

Progress / News & Feature

Upcoming September 2017Order your Christmas cards

Spread some festive cheer with our Christmas cards and help support our vital services. Order via post or online before stock runs out charitycardshop.com/pancreaticcanceruk

October 2017 An Evening with Suggs & Friends

Don’t forget to buy your tickets for this evening of fantastic music, food and fun. Suggs will be joined by Jools Holland and other surprise guests soon to be confirmed. pancreaticcancer.org.uk/suggs

November 2017 Pancreatic Cancer Awareness Month

Wear, play, bake or shave to raise funds and save lives this November. Join us and get purple.

December 2017 Christmas Carol Concert

Our annual evening of carols and readings takes place on 18th December in the beautiful St Paul’s, Knightsbridge. More details coming soon.

This December we say goodbye to our Chief Executive Alex Ford. Our first ever member of staff, Alex has helped transform us into the UK’s leading pancreatic cancer charity. She has made a huge contribution to the fight against the disease for which we are extremely grateful and we wish her all the very best for the future.

We are delighted to welcome Diana Jupp, as our new CEO and she will be joining us in November from Bloodwise, a charity dedicated to beating blood cancer. Diana has over 20 years’ experience of working for cancer charities and brings with her a wealth of expertise. We are thrilled to have her on board.

Shockingly, 9600 people and their loved ones will face a pancreatic cancer diagnosis this year. And with that number set to increase, we need to take urgent action. Early diagnosis is vital if we are to save lives. That’s why we’ll be getting purple this Pancreatic Cancer Awareness Month to get people talking about the disease and our work. On page 4 you can find out how to get involved this November.

As a survivor, I understand the impact of pancreatic cancer only too well. Without the generosity and commitment of people like you, Pancreatic Cancer UK would not be able to take on the disease. You make our work possible and I can’t thank you enough for your support.

Lynne Walker, Chair of TrusteesPancreatic Cancer UK

3pancreaticcancer.org.uk

Progress / Feature

When Alex joined the charity in 2009, she became our first ever paid member of staff.

Alex’s first challenge was to set up our Scientific Advisory Board to decide which areas of research we’d support. She recruited a team of leading experts and together they funded our first research projects.

That year, Pancreatic Cancer UK invested £505k into research and began calling for a significant increase in the amount spent on the disease in the UK. To date, we have awarded grants of more than £5.7 million, seen survival rates double and helped ensure that the life-extending treatment Abraxane was approved for use on the NHS in England, Scotland and Wales.

Our support for patients and their families has also expanded under Alex’s leadership. Through our Support Line, publications, information stands and patient support days, we are reaching thousands of people every year. We now have two Regional Nurses providing local face to face support and working with health professionals, along with three Community Coordinators who are working in the community to promote our services and involve people in our work.

Alex is a passionate advocate for the charity and our cause. Over the years, she’s given

Goodbye Alex, and thank you!

“I’ve heard great things about Pancreatic Cancer UK throughout my career and under Alex’s leadership the organisation has gone from strength to strength. It is a huge privilege to be joining the charity at this point in its journey and I am thrilled to have the opportunity to be able to continue and build on Alex’s many achievements; I cannot wait to get started!”

Diana Jupp, incoming Chief Executive, Pancreatic Cancer UK

countless interviews, lobbied governments and hosted international conferences. She has worked tirelessly to raise awareness of the disease and built a committed team of more than 50 that will continue her work in transforming the future for everyone affected by pancreatic cancer. Her recent inclusion on the shortlist for The Charity Times UK CEO of The Year 2017 is testimony to her effectiveness on behalf of our charity.

Thank you, Alex – you’ll be missed.

“A real highlight of my time at the charity has been the chance to work with such committed and passionate supporters, staff and trustees. We’ve achieved so much together in the last eight years, and I have huge confidence that we will secure the funding and make the breakthroughs we so urgently need for patients and families. I feel genuinely privileged to have been part of it all – it’s been the best job I’ve ever had - and I have real hope for the future.”

Alex Ford, outgoing Chief Executive, Pancreatic Cancer UK

“It’s been the best job I have ever had.”

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Progress / Campaigns

9600 people and their loved ones will face a pancreatic cancer diagnosis this year. And the numbers are set to increase. Early diagnosis is vital if we are to save lives. So it’s time to take urgent action by raising awareness of the disease and raising funds for research into earlier diagnosis.

This November we will be getting purple for Pancreatic Cancer Awareness month and encouraging supporters to join us and save lives. There are six fantastic ways for you to fundraise.

• Bake It - Dazzle work colleagues with your sensational sweet treats or invite your nearest and dearest to enjoy your baking brilliance at home with coffee and a catch up. You bake them, they buy them.

• Move It - In the UK, 24 people die from

pancreatic cancer every day. Walk, run or ride 24 miles in November over a day, a week or a month. You choose the way and the number of days.

• Wear It - Dust off your lilacs and lavenders and wear something purple. Choose your own dress down day or join us on the 16th of November for World Pancreatic Cancer Day.

• Style It - If you can shave it, grow it or dye it, do it!

• Quiz It – Use our purple quiz to challenge family, friends or work colleagues to the ultimate battle of the brains! Hold your quiz in the office or get your local pub involved.

• Game It - Get your gang together and enjoy a night of fun, frolics and fierce competition! Remember someone special or share hope for the future with family favourites or crazy capers!

Visit our website today for lots of tips and ideas to make your November activities a success.

Sign up now and encourage your friends and family to get involved too! Let’s make this Pancreatic Cancer Awareness Month one to remember, and help transform the future, today.

To find out more visit pancreaticcancer.org.uk/pcam

Get purple and save lives for Pancreatic Cancer Awareness Month

5pancreaticcancer.org.uk

Progress / Campaigns

Thursday 16th November is World Pancreatic Cancer Day and it’s our chance to join forces with people and charities around the world to raise awareness of the disease.

With activities and events throughout the day, make sure you check worldpancreaticcancerday.org for more information.

World Pancreatic Cancer Day

Purple is the colour associated with pancreatic cancer across the globe. This November we want to turn as many landmarks purple as possible nationwide to put a spotlight on the disease.

Light up this NovemberThe Welsh Assembly and Blackpool Tower are just two of the many buildings that have taken part in Purple Lights in the past and turned purple to raise awareness of pancreatic cancer. But this year with your help, we want to make an even bigger impact. Could you contact your favourite local landmark and ask them to get involved this Pancreatic Cancer Awareness Month? A call or email is all it takes to start the ball rolling.

You can find full details at purplelightsuk.org

When Maureen lost her husband Peter to pancreatic cancer in 2011, she organised a collection for Pancreatic Cancer UK and began a fundraising and awareness campaign that continues today.

Over the years Maureen has organised countless events in Peter’s memory, and has been joined by friends who have also lost loved ones. Together with her daughter, Sarah Parker, and friends Claire Grant and Rebekah Stubbs they have put on coffee mornings, car boot sales, cricket matches, charity discos and more. They have taken part in Pancreatic Cancer Awareness Month, pulled on their aprons for Bake a Difference and turned the local church purple for Purple Lights.

Maureen the marvellous fundraiserBut they’re still not done. Coming up is a Coffee Morning Fayre Extravaganza, featuring stalls, raffles and lots of cake. And for this year’s Pancreatic Cancer Awareness Month they will once again be lighting up their local church.

In total the group has raised nearly £10,000 towards our game-changing research and services for patients. They truly are fundraising superstars.

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Progress / Lead feature

We are thrilled to announce that the life-extending drug Abraxane is now available on the NHS in England. This landmark decision by the National Institute for Health and Care Excellence (NICE) could give hundreds of patients the chance to spend more time with their loved ones. Abraxane is one of the very few treatment options for people with advanced pancreatic cancer, many of whom don’t survive more than six months after diagnosis. The drug was hailed a game-changer when it was first developed and on average gives patients two extra months to live.

Abraxane is already available in Wales and Scotland but was withdrawn from the NHS in England and Northern Ireland in 2015 over concerns about its value for money.

We were outraged by the 2015 decision, which denied people access to a life-extending treatment on the basis of where they live. It prompted us to campaign with supporters to bring Abraxane back – most recently via our Every Month Matters petition for fairer access to life-extending treatments. Supporters like you played a crucial role in making the campaign a success, from fundraising and filling in surveys to writing letters and signing petitions. Thank you.

NHS England approves Abraxane

To find out more about Abraxane and our continuing campaign to make it available again on the NHS in Northern Ireland, visit pancreaticcancer.org.uk/abraxane for the very latest.

People with the six less survivable cancers – pancreatic, lung, oesophageal, brain, stomach, and liver – in England are almost five times less likely to survive beyond five years, compared with patients with one of the 11 more survivable common cancers.

This shocking disparity cannot be allowed to continue, and we have come together

with the British Liver Trust, The Brain Tumour Charity, Action Against Heartburn and Core to form the Less Survivable Cancers Taskforce.

The Taskforce aims to level the playing field so that patients with the six diseases have the same chance of surviving cancers such as prostate and breast. It seeks to:

• Raise awareness of symptoms

• Diagnose and treat the cancers quicker

• Raise the number of clinical trials and treatments approved

• Set targets with Government for survival

• Increase investments in research.

These objectives hold the key to saving lives and ensuring that everyone with cancer has a fair chance of survival.

To find out how you can help the Taskforce to close the gap between less and more survivable cancers, visit lesssurvivablecancers.org.uk

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Progress / Your Stories

I was fit and active when the stomach pains began in October 2013. I saw my GP who gave me a good prod and diagnosed a pulled muscle. The following January I went back as the pain hadn’t gone away and I was in a lot of discomfort. This time I was prescribed medication for stomach cramps.

That February I returned yet again to the GP with stomach pains, discomfort and constipation. Thankfully, I had just turned 60 so the GP said I was eligible for the new NHS bowel cancer screening programme. She made the referral and took some blood, including one looking for signs of cancer. I saw a consultant within 10 days who then ordered a colonoscopy and a CT.

Being diagnosed early saved my lifeby Roy Bowdery

The colonoscopy was clear but the blood result suggested it could be cancer. When I went to see the consultant after the scan, he said they’d found a tumour in my pancreas. He referred me to a specialist cancer centre.

Fortunately, the next consultant I saw said that my cancer was operable and that he’d do a Whipples procedure to remove it. To my great relief the operation was successful and they discharged me seven days later.

I’ve now been cancer free for three years. I still have some lingering effects; I don’t seem to be able to put on weight, I have to take iron tablets and Creon multiple times a day, and I’m diabetic. I’ve lost track of the number of different clinics I’ve been to over the years!

Life, however, is good. I regularly mind my daughter’s energetic dog and can take him on long walks. I am also actively involved in childminding duties for my two grandsons, and I am back supporting my local football team with the regulars. We enjoy a pre-match visit to the local pub beforehand for a glass or two of wine - it makes the team’s performance appear a lot better!

Read more about Roy’s experiences at pancreaticcancer.org.uk/roy

“I was lucky, I was diagnosed early when the cancer was still operable. I just hope others can be so fortunate.”

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Progress / Views from the Field

One of the main barriers to progress in pancreatic cancer research is the shortage of specialist scientists. To save lives, we desperately need to support new researchers as they begin their careers, and that’s why we’ve launched our Future Leaders Academy at the Beatson Institute in Glasgow.

Under the directorship of Professor Owen Sansom – a leading expert in pancreatic cancer research – the Academy will fund five of the very brightest PhD students as they investigate how pancreatic cancer grows and spreads – and find ways to stop that happening. Their research could also help develop powerful new drugs that patients so desperately need.

We call these young scientists our Future Leaders and the future of pancreatic cancer research is in their hands.

Professor Sansom said: “For many years there were few treatments for pancreatic cancer, but now there are exciting new therapies in development. The next generation of researchers will need to understand how these

treatments work and find ways to predict which patients might benefit from them.

So, our Academy will train young scientists to understand both the biology behind the

development of new therapies and how to move these developments through into clinical testing.”

When the academic year starts in October, the new Pancreatic Cancer UK Future Leaders will join one of the country’s leading research teams, and develop the skills and know-how they need by working in state-of-the-art labs using the very latest equipment. They will be mentored by some of the leading figures in pancreatic cancer research, sharing their findings and building on each other’s work.

The Future Leader Academy is a hugely exciting step forward in the fight against pancreatic cancer. Nothing about the disease is easy, and it will take time to make the discoveries we’ve all been waiting for. But by investing in the professors of tomorrow today, we can change the future for people affected by pancreatic cancer.

Future Leaders Academy – the brightest young minds in pancreatic cancer research

“It is the complexity of pancreatic cancer and the potential to help make big improvements that motivated me to become a Future Leader.”

Ricky Cunningham, a Pancreatic Cancer UK Future Leader

Discover more about the Academy and meet our brilliant new Future Leaders at pancreaticcancer.org.uk/futureleadersacademy

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Progress / Services

To find out more about the 10 Top Tips for GPs, visit pancreaticcancer.org.uk/health-professionals/educational-resources

Pancreatic cancer is tough to diagnose. Its symptoms are vague and this often leads to it being misdiagnosed with other more common conditions. This means that by the time a person receives a diagnosis of pancreatic cancer, it’s often too late for surgery - the only possible cure for the disease.

Pancreatic Cancer UK is determined to improve the rates of early diagnosis, and we joined forces with Macmillan Cancer Support recently to produce 10 Top Tips for GPs to help them in diagnosing pancreatic cancer.

To devise the tips, we held a workshop with Macmillan GPs and members of our Patient and Carer Advisory Board. During the session, we shared insights and discussed the barriers that often prevent GPs from diagnosing pancreatic cancer. We also talked about the issues we wanted to highlight, such as how a family history

of pancreatitis or diabetes may increase the risk of developing the cancer, and how difficult it is to see the pancreas on an ultrasound. We’re pleased that these recommendations are now included in the 10 Top Tips.

By working with Macmillan on this project, we can reach thousands of GPs in the UK. We can help them recognise and treat pancreatic cancer earlier, and we can change the future for everyone affected by the disease.

“We hope these simple practical tips will help to increase GPs’ confidence in early diagnosis of pancreatic cancer and improve the experience of patients who are worried about pancreatic cancer.”

Dr Sinead ClarkeGP Advisor Macmillan Cancer Support

Working together to diagnose pancreatic cancer earlier

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Progress / Policy & campaigning

How to help

• Write to your MP using our template at pancreaticcancer.org.uk/researchatrisk

• Spread the word via social media - encourage your friends and family to do so too.

• Tweet your local MP using the hashtag #ResearchAtRisk

There have been some important discoveries in pancreatic cancer research recently which could change the future for patients. However, that progress could be under threat unless the Government guarantees to protect EU research funding and access to EU clinical trials and expertise after Brexit.

In the summer, we asked researchers and clinicians working in pancreatic cancer what impact they thought Brexit would have on their work and patients. Their response was unequivocal: 89% said they felt it could have a very negative or negative impact on pancreatic cancer patients. 74% also thought that Brexit could have a very negative or negative impact on clinical trials for pancreatic cancer.

We cannot afford to take a backward step in the fight against the disease. It is already the fifth biggest cancer killer in the UK and

Support our #ResearchAtRisk campaignwithout access to clinical trials, the treatment options could be even more limited.

Through our #ResearchAtRisk campaign, we’re calling on the Government to commit to protecting pancreatic cancer research in the face of Brexit. We want them to:

• Guarantee EU research funding for the disease.

• Ensure EU researchers are able to work in the UK and vice versa.

• Safeguard access for UK pancreatic cancer patients in clinical trials.

But we need your help to make our voice heard. Please support #ResearchAtRisk and build pressure on the government to protect EU research funding for pancreatic cancer by taking action today.

Please let your local MP, MSP, MLA or AM know about the sessions and ask them to come along. There are more details on our website: pancreaticcancer.org.uk/PCAM

This Pancreatic Cancer Awareness Month, we are hosting drop-in sessions for parliamentarians in Westminster, Holyrood, Cardiff and Stormont.

Awareness raising in ParliamentThis is a chance for them to meet us and find out about the quality of pancreatic cancer care in their area, and how they can work with Pancreatic Cancer UK to improve it.

#ResearchAtRisk

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Progress / Fundraising

To find out more and join our team, visit pancreaticcancer.org.uk/fundraising-and-events

Make Pancreatic Cancer UK your charity of the year!

If you love running, or you’ve always wanted to take on a challenge, then next March is the month for you!

We have places available in three of the UK’s best running events, including The Big Half – a brand-new half marathon. And we would love to have you in our team.

Don’t worry if you’re new to running or fundraising because we are here to help. We have training plans, fundraising ideas and lots of materials for you to use. So sign up today and let’s take on pancreatic cancer together.

The Big Half | 4th March 2018Created by the makers of the London Marathon, this run takes you past some of London’s most iconic sights. Reg fee: £30 | Fundraising pledge: £350

Bath Half Marathon | 4th March 2018With its traffic-free course and beautiful location, the Bath Half is a must for any keen runner. Reg fee: £15 | Fundraising pledge: £229

Brighton Marathon | 15th April 2018Its scenic coastal route makes the Brighton Marathon a favourite with professionals and amateurs alike. Reg fee: £29 | Fundraising pledge: £399

Come join our team!

This November, will you tackle pancreatic cancer head on and nominate us as your company’s charity of the year?

Workplace fundraising is a vital part of our income and a great way for you to support Pancreatic Cancer UK. It’s fun, it’s social and it gets people talking about pancreatic cancer. Over the years, corporate partners have organised cake sales, car washes, golf days

and more. They’ve taken on challenges and turned their offices purple. And together they’ve raised hundreds of thousands of pounds for our work.

Becoming a corporate partner is easy, and our team is here to support you and your company every step of the way. So why not find out more today by emailing corporate@pancreaticcancer.org.uk. We look forward to hearing from you.

Progress

Machu Picchu Trek

Pancreatic Cancer UK

6th Floor Westminster Tower3 Albert EmbankmentLondon SE1 7SP

020 3535 7090enquiries@pancreaticcancer.org.ukpancreaticcancer.org.uk

/pancreaticcanceruk @pancreaticcanuk

Connect with others in our Forum:forum.pancreaticcancer.org.uk

Talk to a specialist nurse via our Support Line:0808 801 0707 (Freephone) nurse@pancreaticcancer.org.uk

© Pancreatic Cancer UK Registered charity number 1112708 (England and Wales), and SC046392 (Scotland)

Take on an epic adventure and trek to Machu Picchu in support of Pancreatic Cancer UK.

Find out more at pancreaticcancer.org.uk/trektogether or call our fundraising team on 020 3535 7090

During this five-day challenge, you’ll follow the lesser-known Lares Valley route as it winds its way through the Peruvian Andes to the lost city of Machu Picchu. You’ll watch as the sun rises and falls over the spectacular scenery. And you’ll make new friends and memories that will last a lifetime.

Taking on an overseas trek in support of Pancreatic Cancer UK is the perfect way to break out of your comfort zone, whilst helping to change the future for people with pancreatic cancer.