Striving to increase survival rates in pancreatic cancer in the UK

Rebecca Aris interviews Alex Ford

Pancreatic Cancer UK

As our disease focus this month is on gastrointestinal and hepatic disorders, we interviewed the CEO of Pancreatic Cancer UK to hear more about the aims of the charity.

Pancreatic cancer is the ninth most common cancer in the UK1. It has a poor prognosis and a low survival rate. Evidence suggests that of all the cancers, the experience of having pancreatic cancer is one of the worst. As such, the key aims of Pancreatic Cancer UK are to increase survival rates in and improve the experience of pancreatic cancer.

Alex Ford is the Chief Executive Officer of the charity, providing the overall direction and leadership for Pancreatic Cancer UK. She speaks with us here on the charity’s aims and the upcoming advances that she hopes to see in this area in the next ten years.

Interview summary

RA: What are the main aims of the charity?

AF: The fundamental aims of the charity really are directly related to our Campaign for Hope. We launched Campaign for Hope about a year or so ago. The two key aims which we are working towards underneath the banner of that, are to double the UK five survival rates of pancreatic cancer within five years, and to change the NHS experience of pancreatic cancer patients from being one of the worst, which we have evidence that it is at the moment, to being one of the best.

Those are our long-term goals. Obviously, we’re not going to deliver all of those directly, but part of the work we’re doing is to engage other people, such as politicians, clinicians, policy makers and individuals who have been affected by pancreatic cancer, to enable us to move together to achieve those goals.

Pancreatic Cancer UK essentially fights pancreatic cancer on all fronts, we provide information, support, we campaign, and we fund research. So we’re a fairly broad based charity at the moment.

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“…this is a cancer that’s been very much forgotten.”

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RA: What kind of information do you find that patients are seeking on your website?

AF: We know that the most popular sections are the facts about pancreatic cancer, which includes the basic information about diagnosis, types of pancreatic cancer and signs and symptoms.

We find that a lot of people visiting have a new diagnosis, and because of the poor prognosis of the disease they’re often trying to find out if there are other treatment options available, or the best place to get treated.

RA: What would you say appear to be patient’s unmet needs in this area?

AF: Sadly enough in pancreatic cancer there are a huge amount of unmet needs. One of the issues that we’ve been hearing about a lot on our support line is about the management of dietary symptoms. A lot of people are experiencing problems with diet relating to pancreatic cancer, and they haven’t always been given good information on how to manage that.

RA: Can you tell us about the aims and the outcomes of the Study for Survival?

AF: The primary aim of the Study for Survival was to conduct the first ever comprehensive mapping of pancreatic cancer in the UK. It draws on the experience and views of over 1,000 people living and working with cancer. But it also looked at, through data analysis, the experience and challenges related to pancreatic cancer patients within the NHS.

It was an attempt to map the patient experience right from pre-diagnosis through to death, and to identify where the real challenges and opportunities are.

We are a very broad based charity, and we wanted to have evidence and a clear indication of where our activities can make the most difference, particularly in terms of our campaigning work. We also wanted to provide insight for all the other partners and people that we work with, so that we can all work together in an evidenced way.

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“…pancreatic cancer is significantly underfunded in terms of research…”

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RA: What do you think can be done to raise awareness in this area, and why is it so important?

AF: The breast cancer cause has actually achieved an awful lot from raising awareness. In many ways providing awareness within the public and in a political arena is actually the first start to getting the cause recognised and more understood.

Three or four years ago, pancreatic cancer was really not known at all, people didn’t even actually know where their pancreas was. But over the last few years charities and the pancreatic cancer community have been trying to get the disease on the agenda, get people to understand and recognise the fact that the death rates are appalling, and that this is a cancer that’s been very much forgotten. Those death rates haven’t changed for some considerable time.

Once the public is more aware of it, then we can actually start achieving a bit more public pressure and bit more political pressure.

It’s particularly challenging for us, because of the fact that our patients don’t survive very often, which means that we haven’t got that large group of survivors out there (such as with breast cancer), who work so hard and on an ongoing basis to raise the profile of the cause.

It is hugely important that people who care about this disease, who are often the people sadly left behind, do help us in this work. We also need to raise the profile of the disease specifically with particular health professionals. GPs will only see about one new pancreatic cancer patient every five years, so it’s not a disease that’s top of mind when patients present with symptoms that could indicate a concern. Pancreatic cancer patients visit the GP many more times than other cancer patients before being diagnosed, 50% are diagnosed in an emergency situation through emergency admission to hospital. So that’s also a very particular opportunity to tackle the disease in terms of awareness raising with a particular group of health professionals.

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“…it’s responsible for 5% of cancer deaths, and yet it only gets 1% of cancer research funding.”

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RA: What advances in this area do you hope to see over the next 10 years?

AF: The main thing we’d like to see is a change in the five survival rates, because they’re 4%, which is at least 1% more than they were three years ago. But they’re still very small. We’re talking about a 96% death rate, which in this day and age the opportunities in cancer and the fantastic progress that’s been made in terms of new technologies and new treatments is a really appalling legacy for the disease.

So we are calling for a doubling of five year survival rates, and also we want to do something about the pancreatic cancer patient experience in the NHS. So in terms of what we’d like to achieve over the next say five to 10 years, those would be our calls to action.

Obviously we want more research, we have clear evidence that pancreatic cancer is significantly underfunded in terms of research, so it’s actually the fifth biggest cancer killer in the UK, and it’s responsible for 5% of cancer deaths, and yet it only gets 1% of cancer research funding.

There are starting to be opportunities in terms of biomarkers, early detection and possible emerging treatments, so there are things that can be supported in relation to research funding.

In terms of health professionals we feel that early diagnosis is key to increasing those survival rates. We had an early diagnosis summit recently, which attracted about 70 or 80 health professionals including GPs. We agreed that we need to find ways of raising awareness with GPs in relation to pancreatic cancer symptoms, and providing support for them to enable them to quickly refer on to an appropriate secondary care setting, and request appropriate tests.

So there are a number of very specific actions that we can achieve in relation to that area. Those are just a few. One of our real challenges for pancreatic cancer I think is a sense of lack of hope, because it’s such a poor death rate, and because nothing has changed for 40 years. I do believe there’s this strategic leap of faith to make. I know many people have been doing amazing things, but we have to raise the public profile, we have to get these issues on the agenda and we have to get more funding into research, because otherwise in another 10–20 years we are going to be the biggest cancer problem of the future!

RA: Alex thank you very much for your time today.

References:

1. Cancer Research UK –Key facts:- http://publications.cancerresearchuk.org/downloads/Product/CS_KF_PANCR.pdf

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About the interviewee:

Alex Ford has been CEO of Pancreatic Cancer UK since 2009. Before then she worked for six years in gynaecological and breast cancer charities, having moved on from a career in higher education following a diagnosis of ovarian cancer in her early thirties.

How can we achieve earlier diagnosis of pancreatic cancer?