Pancreatic Cancer

Andrew Smith Excerpts

Monday 8th September 2014 Westminster Hall

[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.