Pancreatic Cancer

Nic Dakin Excerpts

Monday 8th September 2014 Westminster Hall

[Nic Dakin (Scunthorpe) (Lab)]

I beg to move,

That this House has considered the e-petition relating to research funding for and awareness of pancreatic cancer.

It is a pleasure to serve under your chairmanship, Mr Chope. I thank the Backbench Business Committee for granting this important debate. That citizens of the United Kingdom can, through their petitioning, move issues up the national agenda shows the strength of our democracy. Pancreatic cancer has not had the strong public spotlight of concern that some other diseases have had, so it is fantastic that the public’s voice has led directly to this debate, which I am proud to initiate. I thank every one of the 106,398 people who signed the petition by 8 April, and all those who have signed it since.

I pay particular tribute to my constituent, Maggie Watts, who started the petition with a determination to push pancreatic cancer further into the public’s conscience and higher up the political agenda. That we are here today in a packed Westminster Hall debate is tribute to her efforts and to those of everyone in the pancreatic cancer community—the charities, clinicians, patients, survivors and family members and friends of patients—who energised the nation to say through the petition that the time is right for us to up our collective game on pancreatic cancer.

It is worth pausing to consider the powerful testimony of the petition text, which asks the Government to:

“Provide more Funding & Awareness for Pancreatic Cancer to aid long overdue progress in earlier detection and, ultimately, improved survival rates”.

It reminds us that pancreatic cancer is the

“5th leading cause of UK cancer death with the worst survival rate of all cancers yet it receives only c1% of research spend. 5 year survival of 3% hasn’t improved in over 40 years, whilst survival rates for other cancers have… More funding/more public awareness is vital so that progress can be made in earlier detection and, ultimately, better survival rates. Often termed the “silent killer”, many of PC’s symptoms mirror other less critical illnesses. Sometimes GPs may not recognise these early enough, looking first at other possible causes resulting in lost time before diagnosis. By this time, in many cases, the prognosis is terminal.”

The petition calls for action:

“Another 40 years can’t pass without change. The requirement is for significantly increased research funding and inclusion in the National Awareness & Early Diagnosis Initiative (NAEDI) Public Symptoms Awareness Campaign”.

Pancreatic cancer is the fifth most common cause of cancer death in the UK. It has the worst five-year survival rate of the 21 most common cancers, and that has not changed in 40 years. Maggie Watts’s husband Kevin died of pancreatic cancer exactly 20 months from diagnosis, aged 48. His mum died 40 years earlier of the same disease, aged 27. Maggie said:

“What shocked me the most when I started to research pancreatic cancer is that, actually, Kevin stood no better chance of survival in 2009 than his mum did in 1969. Their deaths were 40 years apart yet there was no change in survival rates in all of that time. I found that hard to understand—there is not a lot in this world that hasn’t changed or improved over a 40 year period, including most other cancers but, for pancreatic cancer, survival rates are still shockingly low.”

She concluded that

“there must be a direct correlation between the lack of funding allocated to pancreatic cancer and the lack of progress in the disease.”

The lack of funding has meant that there has been no progress in 40 years. It has not been a public or political priority, and that has to change. As Dr Andrew Millar of London Cancer told the all-party group on pancreatic cancer last week, the very fact that people have only a one in 90 chance of getting this cancer, but a 95% chance of dying once it is diagnosed means that it is less likely to attract commercial funding than the more treatable forms of cancer. As he said, that is exactly when the Government need to step up to the mark and step in, yet site-specific funding for pancreatic cancer research is very low in real terms when compared to other forms of cancer. Only £5.2 million, or just 1% of the National Cancer Research Institute’s 2013 budget, was spent on pancreatic cancer research—that equates to just £625 per death per year on pancreatic cancer, compared with £3,426 per death per year on breast cancer—despite pancreatic cancer being responsible for 5.2% of all cancer deaths in the UK and deaths from pancreatic cancer increasing between 2002 and 2013, while deaths from most other cancers declined.

[John Hemming (Birmingham, Yardley) (LD)]

I congratulate the hon. Gentleman on taking up this issue in Parliament and the campaigners on raising the petition. Constituents have come to me to explain their concerns about pancreatic cancer. Does he agree that it is important that the campaign continues to do excellent work in raising awareness of the difficulties with pancreatic cancer?

[Nic Dakin]

The hon. Gentleman is absolutely right. The campaign must go on, beyond today and into the future. Campaigners are here today in strong heart and with a strong determination to ensure that that is the case.

Breaking down the NCRI spend into contributions from individual partner members is difficult, but we know from evidence given to the all-party group that in 2013, Cancer Research UK provided £2.3 million and the Medical Research Council provided £750,000. The contribution from the Department of Health was therefore just £700,000. In its 2012 policy briefing, “Study for Survival”, Pancreatic Cancer UK calculated that at least £10 million of investment is needed by 2015 and that £12 million is needed by 2017. The target is £25 million by 2022. The minimum figure of £10 million to £12 million has not been plucked out of the air; it comes from a high-level analysis of other cancers, such as prostate and bowel, which suggests that there is a point where funding starts to grow in a more rapid and, importantly, more sustainable manner. A critical mass is needed to generate a solid research infrastructure—for example, through the establishment of centres of research excellence. A critical mass of researchers generating competitive research proposals needs to accrue, and those investment targets are a key starting point for such progress.

Maggie told me that she considers herself in a way to be lucky. She said that she and Kevin had 20 months post-diagnosis and that he was an incredibly positive man, who refused to give in to the disease. Maggie said:

“When I say we were ‘lucky’ I mean because we got 20 months to do and say everything we wanted to. People that I have met whilst I’ve been working on the e-petition lost their loved ones weeks or even days from diagnosis. They were only just getting their heads around a terminal cancer diagnosis when they were having to deal with death. I’ve heard some incredibly sad stories around pancreatic cancer and I’ve heard lots of them.”

Stories of such shattering losses are not rare. One quick look at the tributes left online for victims is testament to that.

[Mr Andrew Smith (Oxford East) (Lab)]

I congratulate my hon. Friend and the others who have raised this debate, as well as those who have petitioned on this vital matter. Does he agree that, as well as the general need for more research funding, screening tools, which are not presently available, need to be developed to make early diagnosis possible? Such developments have been responsible for so much progress with other cancers.

[Nic Dakin]

My right hon. Friend is absolutely right that the nub of the issue is how to get early diagnosis—the difficult-to-achieve holy grail.

In evidence to the all-party group a week after celebrating six years of survival, pancreatic cancer survivor Ali Stunt said:

“We need to focus on early diagnosis… Those of us who are diagnosed in time for surgery, which is what we want to achieve, have a tenfold increase in the chance of surviving five years… I was lucky. I was told that surgery was an option and that my operation would be booked in for a week’s time. I was told I needed chemotherapy and a week later was in my consultant oncologist’s office. I told him that I wanted to live to see my boys graduate. Following combination chemotherapy for 6 months and then chemo-radiotherapy, my scans were clear. Regular check-ups followed with scans and blood tests—all of which revealed ‘no evidence of disease’. My oncologist finally ‘signed me off’ in April 2013.

This is a story not often heard when pancreatic cancer is involved. These past 4 years since I founded Pancreatic Cancer Action I have met and got to know some fabulous people who have bravely fought and helped me raise awareness of this cruel disease. Not many of them are still alive, but all will have a special place in my heart. It is and always will be my mission to get more people diagnosed sooner—so more can have the same outcome as me.”

I first became aware of pancreatic cancer many years ago when my friend and colleague Martin Newbould became ill with it. Martin was an inspirational individual, a wonderful family man and an outstanding head of maths. More recently, my witty local newsagent Mick Emerson retired only to be diagnosed with pancreatic cancer soon after and then pass away. My friend Sir John Mason passed away just before the summer after a dignified battle against the disease, leaving a massive legacy of good work in the community. Having been ill for some time with an undiagnosed condition, John’s pancreatic cancer was, I understand, finally diagnosed after an emergency admission at Scunthorpe hospital’s A and E.

Currently, a staggering 48% of pancreatic cancer diagnoses are made by emergency admission, which is more than twice the total for other forms of cancer. That is important, as presentation via emergency admission is normally when the disease is more advanced and associated with much poorer survival rates than other routes to diagnosis. For example, one-year survival for patients presenting via emergency admission is just 9%, as opposed to 26% for those diagnosed as a result of GP referral. Over 40% of pancreatic cancer patients visit their GPs three times or more before even being referred to hospital. Some 16% have to visit their GP or hospital seven times or more before the correct diagnosis is made. By comparison, figures show that 75% of all cancer patients combined are referred to hospital after only one or two visits to their GPs.

Such data are only recently known as a result of the National Cancer Intelligence Network’s impressive work. It shows the power of data in helping us to tackle this disease. Further improvements in the collection and application of real-time data have the potential to transform medical practice in this area. Evidence given to the all-party group last week suggests that establishing a tool to collect patient data online would not be difficult to achieve. Such a robust IT system would radically improve data collection. Patients support their data being used for analysis and expect their data to be used to improve care for everyone else. London Cancer’s Dr Millar recommended that patient data be made freely available for use, within the law, for research in return for the free health care received under the NHS. Linking more GP data with that already received through secondary care and the research lab will help to improve early diagnosis in terms of the amount of data that can be analysed.

One issue highlighted throughout the all-party group’s inquiry was the disconnect between primary and secondary specialist care in achieving timely, effective treatment. Pancreatic cancer patients are not transferred quickly enough from primary to secondary care when time is of the essence if better outcomes are to be achieved. Most European countries do not have the same GP gateway as the UK; patients can see a specialist more quickly and clinical outcomes are better. One consultant surgeon and surgical oncologist told us:

“The patient turns up and the chap says, ‘Well it’s not reflux and I’m a reflux doctor. Back to your GP.’ So he goes back to the GP—more delay is coming. The GP says, ‘Well it isn’t reflux. Maybe now he has some back pain or something. We’ll try the spine doctor.’ So he goes to the spine surgeon. The spine surgeon says, ‘Well, it’s not spine pain. Back to your GP.’ This is the common scenario. The patient becomes a tennis ball.”

To get around this investigative ping-pong, it is worth seriously considering whether to allow GPs direct, easier access to CT scans, which would be much more likely to rule cancer in or out at an earlier stage than other investigative measures. One experienced GP told us:

“I think it’s about getting the right test, for the right patient, at the right time. Presently a hospital doctor who has had—no disrespect to my colleagues—two years’ medical experience can request a CT scan for a patient in hospital where I can’t.”

There is recognition that allowing GPs to refer patients directly for CT scans could accelerate diagnosis, but there is understandable concern about how it might work in practice.

[Dr Phillip Lee (Bracknell) (Con)]

Mr and Mrs Stella, constituents of mine who tragically lost their son Robert aged just 26, are sitting in the Public Gallery. I am a working doctor and fully understand how difficult it is to diagnose pancreatic cancer early because of the non-specificity of the symptoms. However, the solution might be in research. GPs require a test and to be able press a button and diagnose something from within the primary care setting. As the hon. Gentleman rightly points out, obtaining tests from primary care is difficult. Does he agree that once we have found such tests, which will come with time, primary care is where funding should be placed, so that earlier diagnosis is more achievable? Pancreatic cancer can be beaten, but to beat it we must diagnose it early.

[Nic Dakin]

I absolutely agree that the need is to find the tests and to have the wherewithal to allow them to take place.

I want to ask the Minister a few specific questions that she may pick up on in her response. Will the Government put in place pilots across the UK to experiment with direct GP referrals for CT scans to see how that might work and what impact it has on what actually happens—the positives and the negatives—so that we can learn from the experience? What actions can she take to boost awareness of pancreatic cancer signs and symptoms among GPs, to which the hon. Member for Birmingham, Yardley (John Hemming) referred earlier? Will the Department of Health consider pump-priming research into more recalcitrant cancers, such as pancreatic cancer, with ring-fenced grants where sustainable research has yet to be reached? As pancreatic cancer survival rates remain stubbornly low, will the Minister consider running specific awareness campaigns for the public through appropriate media?

The petition and this debate will have helped to raise pancreatic cancer up everyone’s agenda. I pay tribute to how Julie Hesmondhalgh—Hayley Cropper in “Coronation Street”—has helped to raise awareness of pancreatic cancer. I understand that she has been nominated for the best soap actress award at the TV Choice awards tonight. We wish her luck with that, because it will move pancreatic cancer yet further up the agenda. It is good to have her here today as part of the campaign. Julie points out:

“What the Coronation Street storyline did for pancreatic cancer awareness is phenomenal, but much more attention and funding is required. I worked with Maggie, along with many motivated people affected by pancreatic cancer and the charities Pancreatic Cancer Action and Pancreatic Cancer UK, to push the petition to the 100,000 signature milestone. This cancer desperately needs to be in the spotlight.”

She is absolutely right. The spotlight shines on it today. We need to seize this opportunity, this moment, this petition, this debate to up our game. Another 40 years cannot pass by without change. We need to set our stall out to make the same progress that we have made in prostate, breast and bowel cancer in the past 40 years for pancreatic cancer in the next 40 years. Nothing less is satisfactory. It is, as our parliamentary inquiry says, time to change the story.

[Mr Christopher Chope (in the Chair)]

I call—[Applause.] Order. It is not customary for us to applaud. We keep quiet and listen. I am sure that the mere presence of so many people in the Public Gallery is an indication of the strength of feeling on this important issue. I call Eric Ollerenshaw.

--- Later in debate ---

[Nic Dakin]

It is a pleasure to see you in the Chair, Mr Davies. It is important that the House of Commons takes seriously issues that are of concern to the general public. As the Minister recognised, that an e-petition can get a subject on our agenda is a big plus for UK democracy and is something of which we should all be proud. Those who worked with Maggie Watts to get the e-petition over the 100,000 mark should be congratulated on helping to secure today’s quality debate and to shine a spotlight on pancreatic cancer.

What a debate we have had! Twenty-five Members of Parliament have been in the room during the sitting and the Public Gallery has been full throughout. As the hon. Member for Pudsey (Stuart Andrew) said, the debate has been varied. As the hon. Member for Peterborough (Mr Jackson) said, it has been Parliament at its best. We had a contribution from the hon. Member for Lancaster and Fleetwood (Eric Ollerenshaw), whom I congratulate on the leadership that he has shown on the issue over the past few years in this Parliament. It is my pleasure to have worked with him. We also heard contributions from my hon. Friends the Members for Worsley and Eccles South (Barbara Keeley), for Stalybridge and Hyde (Jonathan Reynolds) and for Easington (Grahame M. Morris), the hon. Members for Basildon and Billericay (Mr Baron) and for Milton Keynes South (Iain Stewart) and then the shadow Minister and the Minister. Each and every contribution was of the highest quality.

The issues that we constantly returned to were cracking the challenge of early diagnosis, getting faster referrals from primary care to specialist secondary care to improve outcomes, the nature of research and the amount of funding, GP training and awareness, GP access to CT scans and the use of international and intra-national comparisons to help drive our performance. The Minister’s response engaged with the points made in the debate and was full and positive. As she said, the issue is fundamentally hard, but we need to do better. Listening to her, I thought that she shares our determination to ensure that we do better and that, following 40 years of no change, the next 40 years will be transformational in how the disease is dealt with. I welcome her willingness to continue to meet the all-party group and campaigners from outside Parliament to help to improve our performance on pancreatic cancer.

The title of the all-party group’s report is worth repeating as we conclude the debate: “Time to Change the Story”. It is time for action. This is the beginning of the rest of the campaign.

Question put and agreed to.

Resolved

That this House has considered the e-petition relating to research funding for and awareness of pancreatic cancer.