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Pancreatic Cancer

Volume 545: debated on Wednesday 23 May 2012

Thank you, Mr Scott, for calling me to speak; it is a pleasure to serve under your chairmanship. I am pleased to have secured this debate, as it is on a subject of huge importance to thousands of families across the UK. It is also a subject that is close to my heart.

This debate was originally scheduled for the last week of the previous parliamentary Session. However, the cause of Prorogation it was cancelled, so I am particularly lucky to have been drawn again so quickly. Whether that was because of pure luck or the Speaker’s Panel taking pity on me, I do not know, but I am grateful none the less.

As it happens, the timing for this rescheduled debate could not have been better, because last week we established the all-party group on pancreatic cancer. It is chaired by Lord Patel, the Cross-Bench peer, who has huge experience of the medical profession, and it has a most fantastic treasurer in the hon. Member for Scunthorpe (Nic Dakin), who is here in Westminster Hall today. The all-party group aims to work with Pancreatic Cancer UK, Cancer Research UK and others to increase awareness of pancreatic cancer, and to help campaign for better care and treatments, which will lead to improved outcomes.

The simple fact is that we need better care and treatment. The number of people diagnosed with pancreatic cancer is rising. In 2008, around 8,100 cases were diagnosed—about 22 cases a day. Compared with other types of cancer, those numbers are quite low. However, there is a very poor prognosis in pancreatic cancer cases, with only 3% of patients surviving for five years or more. In my own particular case, my partner survived for only seven weeks after being diagnosed.

Despite advances in technology and improvements in survival rates for other forms of cancer, that figure of 3% has remained unchanged for 40 years, which is quite incredible. There are also wide regional variations in UK survival rates, the so-called and much cited problem of “the postcode lottery”. On a national level, that survival rate—only 3% of pancreatic cancer patients in the UK survive for five years or more—is the worst in the developed world. To put it into context, it is half the survival rate of the US, Australia or Canada. Those countries’ survival rates are obviously still low, but they are much better than the British survival rate.

There have also been reports from people with pancreatic cancer that the care provided in the UK has fallen below expectations. The 2010 NHS national cancer patient experience survey found that pancreatic cancer patients fared significantly worse than patients diagnosed with other cancers. That needs to change. Some things will be easier to rectify than others. For instance, improving the patient experience seems an obvious and relatively easy thing. However, we can and should work on improving awareness, diagnosis, treatment, care and—ultimately and most importantly—the survival rate across the board.

One can look at the impact of the advertising to increase awareness of bowel cancer, which is a difficult cancer to deal with. We are looking to achieve a similar impact in terms of increasing awareness of pancreatic cancer. Increasing awareness is vital, because too often pancreatic cancer is diagnosed at far too late a stage. Although symptoms may have manifested themselves for several months, many people do not visit their doctor until it is too late and the disease is quite advanced. In fact, 50% of pancreatic cancer patients are diagnosed only as a result of an emergency hospital admission and more than 80% of pancreatic cancer patients are diagnosed only once the tumour is inoperable. Those are startling, sobering and depressing statistics.

Let me refer again to my personal situation, in which the pancreatic cancer was diagnosed only after a series of what were just stomach aches, and tests were carried out only after those stomach aches and after a number of visits to the GP.

For the record, the symptoms of pancreatic cancer can be quite vague and varied. They can include weight loss and pain in the stomach, which both appeared in my particular experience of the disease, as well as back pain and jaundice. But if someone does not have any knowledge of the disease—neither I nor my partner had any such knowledge at the time—how would they realise that, because one is feeling tired every day there is something particularly wrong, until the stomach aches develop? Even then, in my personal experience the stomach aches were not significant in terms of pain. We had no awareness that that feeling of tiredness was anything to do with cancer.

We need to ensure that doctors are making the right diagnosis. Nearly 30% of pancreatic cancer patients will have visited their GP five times or more before being properly diagnosed; that was true in my situation. So we need to make sure that GPs are provided with the proper tools and training to recognise the symptoms of pancreatic cancer. Moreover, we need to ensure that GPs are able to refer their patients swiftly to hospitals for further tests when they suspect a case of pancreatic cancer.

As part of that process, Pancreatic Cancer UK is holding an early diagnosis workshop next month. Hopefully, that workshop will help to come up with more concrete actions that could be taken. I understand that the Minister’s colleague, the hon. Member for Sutton and Cheam (Paul Burstow), has agreed to support that workshop, which is an encouraging sign.

Put simply, late diagnosis means that the few treatments available might not be an option, so it is absolutely imperative that we improve awareness and diagnosis.

Let me turn to treatments. The uncomfortable fact is that few options for curative treatments exist. One of the reasons why survival rates for pancreatic cancer are so low, compared with those for other types of cancer, is that pancreatic tumours are relatively highly resistant to chemotherapy. Having said that, I note that Cancer Research UK has said that it believes there is some kind of breakthrough in terms of a new class of drugs, details of which it announced in April; that new class of drugs looks quite promising in terms of being able to improve treatment.

I congratulate the hon. Gentleman on securing this debate on a very important issue; every one of us will have constituents who will be affected by it. Does he share my concern—and, I suspect, the concern of many people—that pancreatic cancer is the fifth most deadly cancer in the whole of the UK and yet only about 1% of cancer research is on pancreatic cancer? Also, does he feel that it is now time for the Minister to work with all the regional bodies across the UK—the Scottish Parliament, the Welsh Assembly and the Northern Ireland Assembly—to introduce a UK-wide strategy to reduce deaths from pancreatic cancer?

The hon. Gentleman can obviously read minds, because that point about research is in my next paragraph. His other suggestion about a UK-wide strategy is a really interesting and positive one, because pancreatic cancer obviously does not respect any boundaries, or any devolved Government or national Government. So he makes an interesting point, which the all-party group can perhaps consider.

Effective cures for pancreatic cancer remain stubbornly elusive, but we need to try to find ways to prolong patients’ lives and to ease their pain and suffering, while always remembering that, with cancer, it is not only the patient who is affected but the people around them, including their family. Cancer affects not just one person; its effect spreads to other people. I had not entered the cancer world before my own personal experience—I call it a separate world, because it is like entering a separate universe that has never been experienced before. Patients’ loved ones also experience suffering.

First, I congratulate my hon. Friend on securing this very important debate. I know how personal this issue is to him. Linked in with the point that he has just made, does he agree that this issue shows why it is so important that we have a strong hospice movement in our country? That is because hospices have the expertise and are able to treat conditions such as pancreatic cancer with a holistic approach, so that it is not only the patient but the extended family and loved ones who receive support—support that they need, too.

My hon. Friend represents Pudsey, a Yorkshire constituency, so he says it like it is. I will go on to say something about hospices; what he said about them is true. In a sense, for a lot of families cancer is almost like the end. With pancreatic cancer, proper treatment is vital and nobody should underestimate the work of the hospice movement. As I say, I will go on to say a couple of things about hospices.

I congratulate the hon. Gentleman on securing this very important and timely debate. I also pay tribute to his passion for this issue and to the personal experience that he brings to this debate; he brings real understanding. In addition, I pay tribute to Pancreatic Cancer UK, which is doing excellent work, and to campaigners such as Maggie Watts, a campaigner in my constituency. She has direct experience of this issue and is driving an e-petition forward on it.

Does the hon. Gentleman not agree that we need more support from the Government in the area of research into cures? Only 1.6% of research funding is spent on pancreatic cancer, and the Government can move things forward here.

I thank my colleague from the all-party group for his intervention. Like the hon. Member for Strangford (Jim Shannon), he seems to have a copy of my speech—my next paragraph is about research funding. We are all in this together, as it were, particularly on this one.

The point that the hon. Member for Scunthorpe makes so well is that more research into the cancer is absolutely imperative, to find new and more effective treatments. Pancreatic cancer receives just 1% of cancer research funds, despite being the cause of 5% of cancer-related deaths. More research funding will help us discover why this type of cancer is so resistant to treatments that can cure other forms of the disease, and identifying early markers will help to establish screening programmes and lead to earlier diagnosis.

In addition to funding new and expanded research programmes, it is key that we increase patients’ take-up of clinical trials. According to the National Cancer Research Network, fewer pancreatic cancer patients enrol in trials than people with other cancers. I do not know whether that is due to the poor survival rates, but it is fundamental that we encourage more of those patients to take part if we are to get the research we need.

Finally on the subject of treatment, we desperately need to find out why there are such regional variations in survival rates. I am sure that the hon. Member for Scunthorpe will agree that the amazing thing at last week’s inaugural meeting of the all-party group was the personal evidence from three survivors from different parts of the country.

One survivor in particular had had to push doctors and fight to get the treatment, and he ended up—I think he came from the midlands—in Reading or somewhere in the south. That was due to his own perseverance, however, and it should not be like that, because once there has been a diagnosis of cancer everything goes to pieces for the family and friends. That man’s will was the most powerful thing about that meeting; he is living evidence that something can be done. We need to ensure that GPs learn from successful parts of the country and that effective procedures are copied wherever possible. That will need top-down leadership, and I hope that the Minister will be able to comment on how that matter is being addressed.

Treatments, including surgery, for pancreatic cancer are few and difficult, but that is no excuse for poor patient experiences. The 2010 NHS national cancer patient experience survey found that pancreatic cancer patients fared significantly worse than those diagnosed with other cancers. For instance, nearly a third of pancreatic cancer patients said that they felt their diagnosis should have been communicated more sensitively, compared with 18% of all survey respondents. The survey also showed that 41% of pancreatic cancer patients were not given information about their cancer when it was diagnosed, compared with 27% of all respondents.

Although I was given a great deal of support, for which I pay tribute to Homerton hospital in Hackney—I will come on to talk about cancer specialist nurses; we had a brilliant one—when coming back from surgery to relieve some fluid, my partner, who was slightly drugged up from the operation, asked the doctor, “How is it?” and he simply turned around and said, “It’s terminal.” That was the first time that either I or my partner had been so informed.

I do not know why doctors find it harder to explain things to pancreatic cancer patients than to other cancer patients—perhaps it is because of the low survival rates—but although effective treatment might not always be possible, we need to do more to improve the patient experience and, as I keep saying, that of family and friends. Other than by way of better information being more sympathetically delivered at the point of diagnosis, that can be done through the support and care provided by clinical nurse specialists. We were lucky, because there was a cancer specialist nurse in the hospital, who guided us through what was going on. The national cancer patient experience survey, which is proving to be a fundamental part of my speech, also found a link between positive patient experiences and access to a clinical nurse specialist. Is the Minister able to comment on that?

I should state that although there can clearly be improvements in patient care, with such low survival rates much of the care can end up, as my hon. Friend the Member for Pudsey has said, being provided in hospices. My experience of St Joseph’s hospice in Hackney was for only two days and two nights, but it was unbelievable, and I pay tribute to everything in the hospice movement. The treatment is holistic, with the family and everyone involved.

As some kind of conclusion, I want to place on the record how grateful those of us who have personal experience of this dreadful disease are to charities such as Pancreatic Cancer UK and Cancer Research UK, which drive the case for change and generally help to give people hope that the situation will improve in the future. Also, we should all pay tribute to the doctors and nurses who provide care and treatment for sufferers, especially in their last days, and I again praise the hospice movements. Their efforts and attitude help to make an extremely difficult time for patients and their friends and family a little more bearable—if it is bearable.

With my personal situation, the biggest thing I would underline is my description of going along in life and assuming that everything is okay and then entering this kind of cancer world, with cancer specialists. The support from other people who are going through the same thing as well is unbelievable, but in 2012, with an NHS of which we are all so proud, why is there such variation, and why has there been no improvement over 40 years in dealing with this virulent form of cancer? I would be grateful to hear what the Minister has to say.

It is a first, and a pleasure, for me to serve under your chairmanship, Mr Scott. I congratulate my hon. Friend the Member for Lancaster and Fleetwood (Eric Ollerenshaw) on securing this important debate. It was very moving to listen to his speech. His real knowledge and personal experience made it more powerful than many of the speeches one hears in this House.

I congratulate my hon. Friend on his appointment as secretary of the newly formed all-party group on pancreatic cancer, and congratulate all the other Members and people from outside this House who have an interest in this particularly nasty and difficult disease and who have recognised the need to set up such a group. I know that my ministerial colleague, the hon. Member for Sutton and Cheam (Paul Burstow), will watch the work of the group with interest, and no doubt the Department of Health will await with eagerness any reports or investigations that the group pursues in the coming years of this Parliament. All contributions, whether from the voluntary or charitable sectors, or from within the Department or the NHS, or at a parliamentary level, are important, because, as my hon. Friend has said, this is a very difficult disease which, sadly, can be extremely swift-moving. Far more needs to be known about it, so that one can address the alleviation of the symptoms and the longer-term management of the condition—if that is possible. Sadly, as my hon. Friend said, during the course of his experiences, time regrettably was not on his side.

We in the Department recognise that we need to do more to bring cancer survival rates up to the standards of the very best. The cancer outcomes strategy sets out our ambition to halve the gap between England’s survival rates and those of the best in Europe, saving an additional 5,000 lives every year by 2014-15. To achieve that, we must tackle common and less common cancers. We know that later diagnosis is a major reason for variation in cancer survival outcomes, and our strategy prioritises early diagnosis. To assist the NHS in achieving earlier cancer diagnosis, the strategy is supported by more than £450 million over four years. That funding is part of more than £750 million in additional funding for cancer over the spending review period.

To improve awareness of rarer cancers such as pancreatic cancer, we are considering piloting a symptom-based awareness campaign covering multiple cancers. Feedback from rarer cancer charities suggests that as a possible approach to improving public awareness. We are considering the results of discussions in order to find the best way forward. I hope that that addresses one of the important points raised by my hon. Friend.

We also need GPs to recognise symptoms and, where appropriate, refer people urgently for specialist care, as my hon. Friend said. A range of support, such as referral guidelines from the National Institute for Health and Clinical Excellence, is available to help GPs assess when it is appropriate to refer patients for investigation of suspected cancer. However, we can do more to support GPs. Cancer Research UK, Macmillan Cancer Support and the National Cancer Action Team are working together to develop a broader GP engagement programme for the coming years, including by working with the senior leadership of the Royal College of General Practitioners on a strategic initiative.

I commend the pancreatic cancer charities for the work that they do to support patients, raise awareness, promote research and identify how we can improve the survival rates of people affected by pancreatic cancer. They do a tremendous amount of excellent work, and we welcome that work and congratulate them on their commitment. We are determined to work with them and others to help minimise the problems highlighted by my hon. Friend.

As I said, we must tackle rarer or less common cancers alongside common cancers. That is why our cancer outcomes strategy set out a commitment to work with rarer cancer charities. Officials have held meetings with numerous rarer cancer charities, including Pancreatic Cancer UK and Pancreatic Cancer Action, to assess what more can be done to encourage appropriate referrals to secondary care for early diagnosis of rarer cancers. The discussions will inform the Department’s future work in the area.

Pancreatic Cancer UK, as my hon. Friend said, is hosting an early diagnosis workshop in June, which will be attended by national cancer director Sir Mike Richards and my ministerial colleague the hon. Member for Sutton and Cheam. The workshop will examine practical steps that can be taken to help GPs and secondary care health professionals diagnose pancreatic cancer at the earliest possible stage. We look forward to receiving the workshop’s findings. As my hon. Friend rightly said, the earlier the diagnosis, the better it is for addressing individual patients’ problems. That is the nub of the challenge facing us all.

Pancreatic Cancer UK’s survival study 2011 confirms what we already know about regional variations in survival rates. “Improving outcomes: a strategy for cancer” makes it clear that reducing variations and tackling health inequalities is essential if we are to improve outcomes and save 5,000 additional lives by 2014-15. To support the national health service in tackling regional variations in cancer survival rates, we are supplying data to providers and commissioners that will allow them to benchmark their services and outcomes against one another and identify where improvements need to be made, so that they can move forward on making the improvements that we all desperately require and seek.

In December 2010, we published the report of the 2010 cancer patient experience survey, which recorded the views of more than 67,000 cancer patients treated across 158 trusts. The results enabled providers to assess the experience of cancer patients locally, benchmark performance against other trusts and identify areas for improvement. It also showed that cancer patients supported by a clinical nurse specialist had a better experience of care overall. My hon. Friend mentioned the importance of ensuring sufficient numbers of clinical nurse specialists. We expect the NHS to consider that in developing policies to improve patient experience. Field work for the 2011 survey is now complete. We will look closely at the results when they are published in summer to see where improvements have been made and more are needed.

The Department is fully committed to clinical and applied research into treatment and cures for cancer. The percentage of cancer patients in trials in England is now more than twice that in the United States. The UK now has the world’s highest national rate per capita of cancer trial participation. I hope that that reassures my hon. Friend.

In August 2011, the Government announced £6.5 million in funding for the Liverpool biomedical research unit on gastrointestinal disease. About half that investment will support pancreatic cancer research. It forms part of this Government’s total yearly spend of more than £200 million on cancer research. Patients and clinicians can find out about trials in all therapeutic areas, including pancreatic cancer, on the UK clinical trials gateway website.

On the important issue of clinical audits, I reassure my hon. Friend that we are committed to extending national clinical audits across a much wider range of conditions and treatments, and to developing their role as a driver of quality improvement. Following a call in early 2011 for new topics for national clinical audit, the National Advisory Group on Clinical Audit and Enquiries provided advice to the Department on new topics to be included as part of the national clinical audit and patient outcomes programme. A proposal for a pancreatic cancer audit was considered as part of that process, but the advisory group’s view was that elements of the proposal should be taken forward as part of the existing bowel cancer audit when it is retendered during 2012. We will ensure that that option is considered when the Department reviews the existing arrangements for the bowel cancer audit later this year.

I reassure my hon. Friend, other hon. Members and the all-party group that, although the challenge of preventing cancers and improving diagnosis and treatment is huge, we are committed to it. Our cancer outcomes strategy, published in January 2011, set out how we will deliver health-care outcomes as good as those anywhere in the world. That is our commitment. The first annual round of the strategy, published in December 2011, highlighted our priorities for this year, which include providing benchmark data to the NHS as a lever for improvement.

Of equal importance is the commitment of the many charities and campaigning organisations that provide vital support to thousands of people with cancer and—as importantly, but sometimes forgotten—to their families. However terrible it is to suffer from cancer, we must not forget the knock-on effects that it has on the emotions of families and friends, who must do so much to support patients through difficult health conditions at a time when they themselves are in a fragile emotional position. They also advocate on behalf of family members and friends suffering from cancer. That is a crucial role, and one that we must not forget.

The contribution of the charitable and voluntary sector to our recent cancer strategy has been invaluable, and I trust that we can continue to count on its help in delivering our aims and objectives. I thank my hon. Friend for bringing up this important issue. As he made clear in his remarks, because relatively few people suffer from pancreatic cancer, it may not always get as much attention as more common cancers such as breast cancer and lung cancer. I am grateful to have had the opportunity to outline the Government’s position and assure him that we continue to work towards achievement.

Sitting suspended.