(12 years, 7 months ago)
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Lord Aberdare
To ask Her Majesty’s Government what steps they will take to improve both the quality of care and the overall survival rates for pancreatic cancer in the United Kingdom.
Lord Aberdare
My Lords, pancreatic cancer is in some respects the poor relation of major cancers. It is the fifth most deadly cancer in the UK after breast, lung, bowel and prostate cancer. However, its survival rate, unlike those of the other cancers, has hardly improved in the past 40 years. In addition, there is evidence that pancreatic cancer patients often do not receive an adequate standard of care. Pancreatic cancer is all too often seen as a death sentence, leaving little or nothing to hope for. I sought this debate to try to focus on ways in which the Government, working with others concerned, might help to bring some hope—something more to live for—to sufferers from pancreatic cancer and their friends and families.
My concern about the issue is purely that of a layman without medical or specialist expertise. Two friends of mine died from pancreatic cancer in recent years. One was a business acquaintance who battled with it for several years, the other a friend who died within weeks of diagnosis. At least three others lost parents at a relatively early age, while another currently has the disease and is doing his utmost to beat the odds. He has been lucky enough to be treated privately at the Royal Marsden Hospital. Through the efforts of his medical team he was given a drug called Folfirinox, which is not approved for this purpose by NICE but which shrank his tumour to the point where it could be operated on. He is convinced that without that operation he would have died.
As I prepared for this debate, I was struck by the number of people who have had direct experience of friends or relatives falling victim to pancreatic cancer. When I looked at the statistics relating to it, I found them shocking. There are more than 8,000 diagnoses of pancreatic cancer in the UK each year, which represents less than 3 per cent of total cancer diagnoses. However, it accounts for nearly 5 per cent of deaths, and the length of time between diagnosis and death is typically less than six months. More than 80 per cent of patients will die within a year of diagnosis. Three-year survival rates in the UK range from 3.6 per cent to 11.9 per cent, and five-year rates from 0 per cent to 10.4 per cent. Only 3 per cent of patients survive for five years. The figures have hardly improved since the 1970s, yet countries such as the USA, Canada and Australia achieve five-year survival rates that are twice as high, and a number of European countries also do better than the UK. Furthermore, there are significant variations in outcomes between different UK regions. London and the south-east have better results than the north of England, Scotland, Wales and Northern Ireland.
Of equal concern is that the 2010 NHS National Cancer Patient Experience Survey showed that pancreatic cancer patients had a poorer NHS experience than most other cancer sufferers, for example in the information they received, in the management of their pain, and in the confidence they had in their medical teams. One aspect of this is the support available from clinical nurse specialists. Although most pancreatic cancer patients surveyed said that they had access to a clinical nurse specialist, research by Pancreatic Cancer UK found that those specialist nurses were concerned that they were not receiving the support and resources they needed to do their job well. Moreover, although it is estimated that some 20 per cent of pancreatic cancer patients may be suitable candidates for surgery, which is recognised as the only effective way of tackling the disease, only about 10 per cent receive it. Noble Lords may share my view that these figures are deeply disappointing and raise serious questions about whether we in the UK cannot and should not do considerably better for those unlucky enough to contract this dreadful disease.
There are three issues I should like to highlight as needing to be tackled. The first is to increase research into the many aspects of the disease which are not yet adequately understood. Despite accounting for 5 per cent of cancer deaths, pancreatic cancer attracts only 1 per cent of cancer research funding. Any prospect of improving survival rates must start from better data about what causes or contributes to the disease and what sorts of treatment are effective in tackling it. Experience, for example with breast cancer, has clearly shown that research does lead to improved survival rates.
The second issue is to find ways of diagnosing pancreatic cancer earlier. There are no straightforward ways of recognising the disease, and many weeks or months often pass before a firm diagnosis is reached, with almost 30 per cent of patients visiting their GPs five times or more. However, the prospects for successful treatment—or even for high-quality palliative care—depend largely on how soon the disease is identified. In addition, many patients do not have the chance to participate in clinical trials for new treatments because their condition is already too far advanced by the time they are diagnosed.
The third issue I want to raise is the quality of care for all pancreatic cancer patients, which needs to be improved, for example through better information for patients and their carers, better co-ordination between those involved in treatment, better support from clinical nurse specialists and a more consistent service across the UK.
I know that the Government share my concern about the need to improve the experience of pancreatic cancer sufferers. Paul Burstow, a Minister in the Department of Health, has met Pancreatic Cancer UK and indicated his support for its Campaign for Hope, and I welcome the fact that two pancreatic cancer-related research studies are to be conducted under the aegis of the National Cancer Intelligence Network.
I very much look forward to the Minister's response to this debate, as well as to the contributions and suggestions of other noble Lords who have much greater experience and knowledge of this issue than I do, but who none the less get three minutes as opposed to my 10. I am sure they will do much better with it. Government, of course, cannot provide all the answers; but in partnership with other organisations and interested parties—the medical profession, research bodies, funders, charities, carers, and of course patients themselves and their families and friends—they can offer encouragement, support and resources.
In particular, I ask the Minister to answer four questions. First, will he look into conducting a full audit of current pancreatic cancer services, to assess why different regions currently achieve different results, and what structures and systems work best to provide pancreatic cancer patients with an optimum quality of care?
Secondly, will he ensure that pancreatic cancer is firmly included in the national awareness and early diagnosis initiative to assess what can be done to shorten the time to diagnosis?
Thirdly, what steps will he take to increase the amount of funding going to pancreatic cancer, both for research and care, in line with its significance among major cancers in the UK? Finally, how will he seek to improve the experience of care for pancreatic cancer patients?
Progress on other major cancers has shown how much improvement can be achieved through focused efforts to raise awareness and improve diagnosis and treatment. Surely we can also improve the outlook for pancreatic cancer sufferers and give them some real hope for longer lives, better care and greater fulfilment in the time that remains to them.
The Earl of Selborne
My Lords, every Member of the Committee will be enormously grateful to the noble Lord, Lord Aberdare, for making this debate possible. I am sure we all congratulate him on his speech. Pancreatic cancer is indeed the poor relation. It is disheartening to find what little progress has been made over 40 years compared to the great successes in most other cancers.
I shall confine my remarks to the need for earlier diagnosis and try to explore some of the reasons why it is difficult to achieve at the moment. Pancreatic cancer is usually diagnosed late in its progress, making surgery very much harder to accomplish. With earlier diagnosis, there is a small chance that the progress of the disease can be slowed down, thereby prolonging life and there is a possibility that the patient may be fit enough to take part in clinical trials. Again, with later diagnosis sometimes clinical trials simply are not an option.
The difficulties of early diagnosis cannot be denied, though. Like the noble Lord, Lord Aberdare, I stress that I am a complete layman, but I recognise that there are no simple tests and indeed that many patients do not experience symptoms until the cancer has spread from the pancreas. Sometimes, however, families are able to recognise with hindsight that a range of symptoms had manifested themselves which, had they led to a diagnosis some time earlier than was eventually the case, might have given some more hope for treatment and trials. Often this manifested itself in more frequent visits to GPs and to hospital before potentially triggering an emergency presentation like jaundice.
The barriers to early detection have been well set out by Pancreatic Cancer UK’s Study for Survival. Its informative summary notes that GPs themselves record that there is a lack of sufficient information and knowledge about pancreatic cancer’s signs and symptoms, a lack of sufficient formal evidence relating to them to support the development of effective referral guidelines, and a lack of access to risk assessment tools to support GPs to identify patients with a pancreatic cancer concern.
We need to develop tools, such as a risk assessment tool, and to improve access to diagnostics. Doctors should always include the possibility of pancreatic cancer in their index of suspicion when presented with a patient with symptoms that do not seem to add up, and should always be ready to refer the patient to a consultant for investigation in such circumstances and without delay.
Baroness Warwick of Undercliffe
My Lords, I, too, thank the noble Lord, Lord Aberdare, for securing this debate and for his thoughtful and compassionate speech. It is clear that I am not the only speaker today who has had the harrowing experience of seeing a beloved family member or friend suffer from this lethal disease. My sister-in-law died of pancreatic cancer, and her story mirrors much that has been said today. She was prescribed pills for depression and had a late diagnosis, first of pancreatitis, which was not considered serious, and only much later one of pancreatic cancer. There was little understanding from her GP—not indifference, but perplexity over the symptoms of a disease that we know GPs will see as a new case perhaps only once every five years.
The statistics speak for themselves and I will not repeat them, except to remind the Committee that this is the fifth most common cause of cancer death in the UK, yet it receives less than 1 per cent of overall cancer research funding. For the 8,000 people a year in the UK who are diagnosed with the disease—that is 22 people for every day of the year—the outlook is grim indeed. Figures from the excellent body Pancreatic Cancer UK suggest that these patients have the least satisfactory health service experience of all patients diagnosed with major cancers. Its Campaign for Hope has two ambitious goals: to double survival rates within the next five years and to move the experience of pancreatic cancer patients from being one of the worst to one of the best.
How can we do that? We need, as others have said, to increase early diagnosis; we need greater investment in research and effective treatments; and we must improve the quality of patient experience for those with pancreatic cancer. A first step would be, as the noble Lord, Lord Aberdare, said, to place it firmly on the national awareness and early diagnosis initiative agenda, and I would like the Minister’s response on that. A review would look at, for example, how we can develop and provide risk assessment tools for GPs.
Then we need to be sure that any new commissioning arrangements and guidelines provide GPs with sufficient information about pancreatic cancer and referral criteria. Will the Minister confirm that this cancer will receive the attention that it deserves within the Government’s Improving Outcomes strategy for cancer?
We need a significant increase in research investment, and we need to increase clinical trials. What steps are the Government taking to ensure that clinicians and patients are fully informed about all available pancreatic cancer clinical trials?
Finally, we need to improve the experience of patients. I know that specialist nursing support—clinical nurse specialists—can make a huge difference to the experience of pancreatic cancer patients, but access to these amazing individuals is limited. Does the Minister recognise the vital role these CNS staff play in helping to improve the experience of patients, and can he offer any assurance about future provision?
There is no excuse for patients in the UK faring so much worse than those in other countries. We must improve survival rates and the quality of care—and of life—for those with this terrible form of cancer.
Baroness Jolly
My Lords, I join with others in extending thanks to the noble Lord, Lord Aberdare, for securing this debate, and to Cancer Research UK and Pancreatic Cancer UK for such excellent briefings.
One in three of us will get cancer in our lifetime, and that diagnosis, for the most part, is quite straightforward. The past decade has seen phenomenal increases in survival rates, such that fairly soon 2 million people will be living with and beyond cancer. That number is growing. This is real cause for celebration, but sadly not yet for those with pancreatic cancer. It has one of the highest incident-to-mortality ratios for any disease. The problems of difficult and late diagnosis, leading to late treatment—often too late for surgery—have been well outlined by noble Lords.
The coalition Government’s document, Improving Outcomes: A Strategy for Cancer, was published on 12 January this year. It set out a range of actions to improve cancer outcomes. Care Minister Paul Burstow said that the strategy,
“sets out our ambition to bring England's cancer survival rates in line with the European average by 2014-15”.
He added that this,
“shows that if England’s survival rates were as good as the best in Europe we would save 10,000 additional lives per year”.—[Official Report, Commons, 7/11/11; col. 139W.]
He said that the Government estimated that of those additional lives saved, 75 would be those with pancreatic cancer. That is all to be welcomed, but 2014-15 is only three years away and we therefore need to understand what actions are being taken.
It is tragic that at the moment in England there is little hope for most patients with pancreatic cancer. The Government have acknowledged difficulties in late diagnosis, the need to consider biomarkers for pancreatic cancer because there are often no symptoms until late stages, the 2005 NICE guidelines for urgent referral of patients, the high incidence of late decisions around surgery—often too late—and some suggestion of reluctance on behalf of clinicians to recommend surgery.
In his summing up, I should be grateful if my noble friend the Minister could address three issues. What mechanisms and levers are there within the Health and Social Care Act that will be able to reassure carers and those who have pancreatic cancer that these aspirations can be met? What role does value-based pricing have in the long term? What engagement is there between the department and royal colleges to address the deficits in doctor training and continuing professional development in this area that is so particularly fraught?
Long-term research needs to be supported and accelerated and, on a brighter note, a few weeks ago, Kirtana Vallabhaneni, aged 17, from West Kirby, beat 360 other entrants to be awarded Young Scientist of the Year for 2012 for her work as part of the University of Liverpool’s research projects. She—at 17—was working on identifying the harmful cells that cause pancreatic cancer. We need many more like Kirtana to increase the level of care and survival rates that are so deserved by those with pancreatic cancer and their carers.
Baroness Morgan of Drefelin
My Lords, I congratulate my noble friend on securing this important debate and I declare my interest as CEO of a cancer research charity. I am also proud to be a patron of Pancreatic Cancer UK, and I am particularly proud of its work in its Campaign for Hope, which is a very important initiative. As a vice-chair of the All-Party Parliamentary Group on Cancer, I wanted to try to put together some of those interests and to talk about the work that the all-party group is doing that is important to patients with pancreatic cancer.
As we have heard, people with rare cancers are often diagnosed later and suffer poorer outcomes than those with more common cancers. I should like to thank the Government for listening to the all-party group and others for including one-year cancer survival rates alongside five-year rates for breast, lung and colorectal cancer in the NHS outcomes framework.
We believe this focus on the NHS implementing interventions that improve early diagnosis—which is key to better survival—is important. However, we must not forget that 53 per cent of people who die from cancer in the UK have a less common cancer such as pancreatic cancer. We have to ensure that improvements are made across the board and that the gap in survival between patients with less and more common cancers does not widen but starts to narrow. This is why the All-Party Parliamentary Group on Cancer has called for the one-year and five-year indicators in the NHS outcomes framework to be expanded to cover all types of cancer. I would be grateful if the Minister could provide an update on what consideration his department has given to broadening out these indicators to include less common cancers and pancreatic cancer in particular.
I would like to make a couple of points on patient experience. We know that the experience of cancer patients must improve, particularly for those with pancreatic cancer. The 2010 National Cancer Patient Experience Survey revealed that patients with rarer cancers had less positive views of their treatment than those with more common cancers. Pancreatic Cancer UK has today illustrated this further through its briefing for this debate. If we are to encourage commissioners to take action to improve this situation, the National Cancer Patient Experience Survey must be conducted annually and be included as an indicator in both the NHS outcomes framework and the commissioning outcomes framework. It would be helpful to know what progress has been made towards this.
As we all know, cancer networks have been extremely important in driving up standards in the last few years. Once the reforms are implemented, CCGs will be responsible for non-specialised cancer services while the NHS Commissioning Board will undertake specialised commissioning. For patients with rarer conditions, such as pancreatic cancer, this means that some parts of their care pathway will be commissioned locally while others will be commissioned nationally. Cancer networks play an important role in overseeing commissioning plans and ensuring that seamless care pathways for patients are delivered. Could the Minister update us on the Government’s plans for cancer networks?
I thank my noble friend Lord Aberdare once again for securing this important debate and Pancreatic Cancer UK for its vital work.
Lord St John of Bletso
My Lords, I am grateful to my noble friend Lord Aberdare for giving us the opportunity for this important and very topical debate. At a time when there have been so many dramatic improvements in the cure and treatment of cancer, it is sad and very alarming that there have been little to no such improvements as regards pancreatic cancer. As my noble friend mentioned in his alarming statistics, the situation has not improved for almost 40 years.
It is also very concerning that the National Cancer Patient Experience Survey in 2010 showed that pancreatic cancer patients have some of the worst overall experiences of all cancer patients. In my allotted few minutes today, I want to touch on just two issues: diagnostics and research. There is currently no screening test for pancreatic cancer and, given that we now know that the disease takes 10 to 15 years to progress and that there is significantly more understanding of the biological and genetic makeup of the disease, what assurance can the Government give that more funding will be made available to provide this effective test?
Secondly, I understand that most drug trials for pancreatic cancer in the UK are currently focused on testing combinations of existing drugs. Given that there have been significant developments in the understanding of the biology of pancreatic cancer in recent years, what actions can the Government take to ensure that more trials are conducted on new drugs which build on the existing research? Essentially, we need a far more radical and creative approach to pancreatic cancer. Time restricts me from speaking on the scope for more surgery, but I cannot understand why, when 20 per cent of patients are eligible for surgery, only 10 per cent have the opportunity of having it.
In conclusion, I applaud the tremendous work of the charity Pancreatic Cancer UK and its Campaign for Hope. I sincerely hope that today the Minister can give us all some encouragement that more financial research and support can be given to address this important campaign so that the UK can achieve its potential for doubling survival rates.
Lord Ribeiro
My Lords, I declare an interest as a retired general surgeon who previously operated on patients with pancreatic cancer but was wise enough to give way to more specialised surgeons of this condition.
I support the development of pancreatic cancer centres, as suggested by the noble Baroness, Lady Morgan of Drefelin, because these 28 specialist centres in the British Isles are endeavouring to improve the standard of care for patients with pancreatic cancer. However, there are marked variations between the centres, and their outcomes should be the subject of a national audit.
I join others in thanking the noble Lord, Lord Aberdare, for bringing this debate, in this short time, to highlight some of the problems that exist. The cardiothoracic surgeons have shown the way by their national survey, over many years, of cardiac surgery outcomes. For the second year they have published the National Thoracic Surgery Activity and Outcomes report. It is important that all specialist associations take part in an audit so that it is possible to compare the outcomes between different centres and, frankly, highlight the ones that are good enough and those that are not good enough, so that at least those who know that they fall outside a 95 per cent confidence limit will improve their practice, find out how to do it better, or perhaps desist, as I did.
The argument for centres undertaking large-volume surgery is now accepted, but this needs to be underpinned by proven expertise, and I would say it takes years to actually develop that, within teams, to come up to the standards. It also needs to be underpinned by good research. Resection rates as high as 20 per cent, with 2 per cent mortality, are achievable in some centres, while others report mortality of 14 per cent.
A German study found that cancer cells in the liver and bone marrow appear in some 36 per cent to 76 per cent of patients. Undetected, these patients may well be subject to surgery, only to develop recurrent disease later. Does my noble friend the Minister acknowledge that we need greater investment in research beyond the current 1 per cent of overall cancer research funding, as suggested by the noble Lord, Lord Aberdare?
Exciting new modalities involving genomics, gene therapy and immunotherapy to complement neoadjuvant therapy are in development and need support. Let us be clear: pancreatic cancer is a difficult and complex cancer. Unlike the one-stop-shop diagnosis that can be achieved for breast cancer—which, by the way, is a very visible and obvious cancer—it can take up to six weeks to investigate and diagnose pancreatic cancer in patients prior to surgery.
Commissioners of health need to understand that this is not a cheap cancer, and they need to negotiate with the providers of healthcare and make sure that the complexity and cost are taken into account when managing pancreatic cancer.
I hope that my noble friend the Minister will use the current anti-smoking campaign to draw attention to the 70 per cent increased risk of developing pancreatic cancer among smokers as compared to non-smokers.
Lord Sharkey
My Lords, in preparing for this debate, three things struck me with a special force; the first was that 25 per cent of pancreatic cancer patients experience symptoms up to 12 months prior to diagnosis; the second was that nearly 30 per cent of pancreatic cancer patients visited their GP five or more times before diagnosis; the third was the alarming fact that the disease attracts less than 1 per cent of overall cancer research funding. With regard to the first and second areas, this seems to me to suggest very strongly indeed the need for better information to be made available both to the doctor and to the patient. Will the Minister give urgent consideration to putting in place quickly a pilot campaign whose objectives are to increase awareness among both patients and doctors of the possible symptoms of this disease? I know that the Government have done that very successfully for bowel cancer.
The third area is the question of the very low level of research funding for the disease. I realise that it is not a simple matter to increase the funding for one particular disease, no matter how pressing the case may be. In many ways this is because there is an analogue of the market mechanism in operation when it comes to the allocation of research funds. That is not a criticism of what happens in a general sense; I point out only that relying on the normal processes of allocating research funding is unlikely to result in much of an increase for the rarer types of cancer, such as pancreatic cancer, in any reasonable timeframe.
That is why I ask the Minister to see if there is any way of bypassing or supplementing the normal process of funding allocation and to see if there is any way of directly intervening to generate a substantial and urgent increase in funding. I realise that this is not easy, and it is consistent with the Government’s commitment to improve the treatment of cancer in the UK and bringing our survival rates up to those enjoyed by many advanced countries.
I, too, thank the noble Lord, Lord Aberdare, for giving us the opportunity to debate this vital issue. I hope that the Minister may be able to give sympathetic consideration to the proposals that I have put forward.
Lord Kakkar
My Lords, I join other noble Lords in congratulating my noble friend Lord Aberdare on having secured this important debate. In so doing, I declare my own interest as a practising surgeon and professor of surgery at University College London, where we have an important interest in the management of pancreatic cancer.
I shall focus on four issues in the time available. The first is to explore the problem of the diagnosis of pancreatic cancer in primary care. As we have heard from noble Lords, nearly 30 per cent of patients have three or more consultations with their primary care practitioner before a putative diagnosis of pancreatic cancer is made, along with referral to a specialist for further investigation. Are there any opportunities, or have arrangements been made or strategies considered, for trying to improve the ability of those practitioners in primary care to be sensitive to the rather non-specific symptoms attending the early presentation of pancreatic cancer, so that they might improve diagnostic strategies?
The second issue relates to specialist treatment. Improving the outcomes guidance, which has driven the cancer strategy over the past 10 years, has provided an emphasis on a focus on the management of patients with pancreatic cancer in specialist centres. What proportion of patients with pancreatic cancer is being managed in specialist centres with specialist multidisciplinary teams, comprising hepatobiliary surgeons with expertise in pancreatic cancer, specialist radiologists and specialist medical oncologists, who could well be in a position to provide the best care for patients once diagnosed, in terms of both understanding how later-presenting disease might be downstaged and of course providing the best curative surgical or palliative radiological procedures for these patients?
The third area is innovation. Your Lordships’ Science and Technology Select Committee, chaired by my noble friend Lord Patel, presented an interesting report in 2008 on genomic medicine, which was widely appreciated. What arrangements have been made about the application of genomic and personalised medicine in the area of pancreatic cancer, particularly with reference to the chief executive of the NHS’s recently published review on innovation and the putative development of academic health science networks? Will these networks provide an opportunity for the early adoption of innovation that might improve both the diagnosis of pancreatic cancer and, potentially, the development of biomarkers or other personalised medicine screening tools to improve therapeutic options tailor-made for individual patients to improve their outcomes with pancreatic cancer?
How many trials are open in the National Cancer Research Institute’s portfolio of clinical trials specifically dealing with novel therapies in phase 2 or phase 3 for pancreatic cancer? What impact has the European Clinical Trials Directive, adopted some years ago, had on participation with regard to trials in pancreatic cancer? We know generally that, in our country, participation in clinical trials has fallen from 6 per cent prior to adoption of the European Clinical Trials Directive—that is 6 per cent of all patients in the world participating in clinical trials coming from our country prior to adoption of the directive—to only 1.4 per cent last year. Has the Clinical Trials Directive impacted on clinical research in pancreatic cancer?
Lord Patel
My Lords, I want to report that the All-Party Parliamentary Group on Pancreatic Cancer is in the process of being set up, supported by Pancreatic Cancer UK. It now has the necessary qualifying members and will hold its first meeting soon. I hope that noble Lords present here will join it.
I had a speech prepared, but I have changed my mind because I can tell your Lordships the story of my noble friend Lord Turnberg, who is sitting on my left. He is reported to be a survivor of pancreatic cancer but he is not. His pancreatic cancer was diagnosed in 1997 and he was operated on. I have his permission to tell you this story, so I am not breaching any patient confidentiality. It subsequently turned out that it was acute pancreatitis, which his colleagues had diagnosed as pancreatic cancer. Although that was 1997, it highlights how difficult this disease is to diagnose. Nothing has changed and many noble Lords have commented on this. We need to improve our ability to diagnose pancreatic cancer. I also have personal stories of my own family: my mother and mother-in-law died of pancreatic cancer. Both faced their disease with courage. My mother was operated on and died a few days later. The surgeon was well meaning but did not have the competence to do the complicated surgery. I once watched my professorial colleague operate with a laparoscope for 18 hours. As the noble Lord, Lord Ribeiro, and the noble Lord, Lord Kakkar, have pointed out, it requires a great deal of stamina, courage and tenacity to do surgery for 18 hours through a laparoscope.
I was impressed by some aspects of Pancreatic Cancer UK’s survey. I would like to highlight three issues. Nearly 25 per cent of pancreatic patients experience symptoms for up to 12 months prior to diagnosis. That is a difficulty in diagnosis. Survival rates are poor but, as has been pointed out, there are, importantly, great variations in survival rates across cancer networks. This needs to be explained, because we need experienced people, particularly surgeons, to look after these patients. Comments have been made about biomarkers and it is true that biomarkers are a way of screening. However, we are a long way from achieving that. Research is being done in this country and in the United States to identify a biomarker and to identify genetic variations and genetic associations of at-risk patients. There is currently funding for research—at Cardiff University there is a programme grant for research on understanding the diagnosis and the variations in results.
The timing of the debate has gone wrong—the clock indicates that I have been speaking for only .07 minutes. That is good—I have time left. I was going to finish by pressing the Minister to look further at providing a full audit of pancreatic cancer services—along the lines of the Healthcare Quality Commission’s national bowel cancer audit—not just focusing on surgery but on all aspects of pancreatic cancers. Such an audit will also help better commissioning in the future and I hope the Minister will address it.
Baroness Finlay of Llandaff
My Lords, I am grateful to the Committee for allowing me to speak in the gap. In this important debate, there has been much focus on research. However, results will take years to come through. Work on early diagnosis and necessary training will also take time. There are patients now with an advanced form of the disease, and there are patients whose disease will recur even when they have gone through treatments that put it in abeyance. Under the new contracting process, how will we ensure that patients with pancreatic cancer have access to anaesthetic intervention services for nerve blocks such as celiac blocks? How will we ensure that clinical nurse specialists work seven rather than five days a week, and that they work as part of multi-professional teams? Without expert medical back-up, the complexity of pancreatic cancer symptoms is difficult to deal with. How will we ensure anticipatory prescribing to reduce the complications of pancreatic cancer such as thromboembolism that sometimes kill patients before the cancer itself? Patients should also have access at all times of the day and night to drugs for pain relief and to combat vomiting.
Baroness Thornton
My Lords, as ever with these debates, particularly when we are disciplined by having a short time, I find that most of the questions that the Minister needs to address have been asked—some of them more than once, and certainly much more ably than I can manage. I start by thanking Pancreatic Cancer UK for its excellent briefings, and also the Library for the excellent and detailed briefing that it produced for this debate.
I will focus on two issues. One is a catch-up on research that I know was published last December and January and was featured by the BBC and at least one national newspaper. I will then ask a question about research that will amplify things. The research linked processed meat to pancreatic cancer. It was done by researchers in Sweden. The World Cancer Research Fund joined in the discussion on that research, which focused on eating red and processed meat. We knew that this had been linked to bowel cancer, but the study published in the British Journal of Cancer analysed data from 11 trials and 6,643 patients with pancreatic cancer. It found that eating processed meat increased the risk of pancreatic cancer. The risk increased by 19 per cent for every 50 grams that someone added to their daily diet. Eating an extra 100 grams increased the risk by 38 per cent.
Professor Larsson, who conducted the research, made the obvious point that pancreatic cancer has poor survival rates, so as well as diagnosing it early it is important to understand what increases the risk of the disease. Has any further research been done on the issue of the link with diet? We know that smoking, too, is a risk factor. I am thinking of the responsibility campaign on food and diet that the Government have been running. Are they using those statistics as part of the campaign on what people should or should not eat?
My second question is about research. We know that there is a commitment to further investment in research into pancreatic cancer. However, I am aware that unless the research is properly commissioned, even if the funding is there, the money will not be spent in a timely fashion. My question echoes that of other noble Lords: are the Government increasing the spend on research in this area? How will they ensure that we develop the kind of critical mass of UK talent that will enable us to deliver world-class, groundbreaking research into pancreatic cancer, as we have done in other areas?
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I thank the noble Lord, Lord Aberdare, for tabling today’s debate. I am aware that this is a very important issue for him and for countless other people and families across the country. The coalition Government’s cancer outcome strategy was published in January last year. It sets out how we will make sure that people with any form of cancer get care and outcomes as good as anywhere in the world, whoever they are and wherever in the country they live.
Probably the most important factor affecting the survival rates of any cancer is the speed with which it is diagnosed—I think all noble Lords mentioned that issue. We have addressed that in the cancer outcome strategy, and that is why we are supporting the strategy with more than £450 million over four years. This funding is part of more than £750 million of additional funding for cancer over the spending review period to support our ambitions for cancer care. On top of that, or course, a range of support is already available to help GPs assess when it is appropriate to refer patients for investigations for suspected cancer, such as a NICE referral guideline. However, we can do more to support them.
Cancer Research UK and the National Cancer Action Team are working together to develop a new GP engagement programme for the coming years that will allow them to increase awareness and improve training. This will all help diagnose cancer cases earlier. I can say to my noble friend Lord Selborne that Professor Willie Hamilton is currently developing a risk assessment tool to support GPs in the investigation of pancreatic cancer.
The noble Lord, Lord Aberdare, asked if the National Awareness and Early Diagnosis Initiative could do some specific work on pancreatic cancer. Our cancer outcome strategy says that we will work with a number of charities linked with rarer cancers. There have already been meetings with several, including Pancreatic Cancer UK and Pancreatic Cancer Action, to see what more might be done to diagnose these cancers earlier. The Government’s future work on pancreatic cancer will be informed by what we learn from those charities.
I am aware also that Pancreatic Cancer UK is hosting an early diagnosis workshop in June. The National Cancer Director, Professor Sir Mike Richards, my honourable friend the Minister of State for Care Services and officials from NAEDI will be attending. The workshop will be looking at practical steps that can be taken to help GPs and secondary care health professionals diagnose pancreatic cancer at the earliest stage possible. We look forward to receiving the findings of the workshop.
My noble friend Lord Sharkey and the noble Baroness, Lady Warwick, talked about the possibility of awareness campaigns. Decisions on campaign work in this financial year will be based on the evidence from the pilots that we have run regionally in 2011-12. To further address the need to improve awareness of rarer cancers such as pancreatic cancer, consideration is being given to piloting a symptom-based awareness campaign based on covering multiple cancers. We are talking with stakeholders, including rarer cancer charities, about that work.
Once pancreatic cancer is diagnosed, patients need to have access to appropriate and consistent treatment, delivered to a high standard, across the board. I am aware that there are variations in survival rates across the country and across cancer networks. Pancreatic Cancer UK’s Study for Survival 2011 confirmed that. Quite simply, it is not good enough and it must change. That is why we are providing data to help the National Health Service tackle regional variations. For example, the National Cancer Intelligence Network has made available data collections on survival rates and surgical resection rates across a range of cancers, including pancreatic cancer. These data will allow providers and commissioners to benchmark their services and outcomes against one another and to identify where improvements need to be made. They will then be able to channel resources into improving services in the areas that need to be brought up to an acceptable standard.
The noble Lord asked whether we would develop an audit of pancreatic service and care. The National Advisory Group on Clinical Audit and Enquiries recently considered a proposal for an audit of pancreatic cancer as part of the National Clinical Audit and Patient Outcomes Programme. I understand that the proposal was not recommended for inclusion in the national programme. However, the advisory group suggested that elements of the proposal could be taken forward as part of the existing bowel cancer audit when this is retendered in 2012. I will ensure that this option is considered when the department reviews the existing arrangements for the bowel cancer audit later this year.
In Improving Outcomes: A Strategy for Cancer—First Annual Report, published in December last year, we said that continuing to provide the NHS with benchmarked data,
“as a lever for improvements”,
is a priority for 2012.
Of course, a hugely important element in all this is the patient experience, to which the noble Baroness, Lady Warwick, referred. 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 across 158 trusts. The survey showed that 90 per cent of patients with an upper gastrointestinal cancer, which includes pancreatic cancer, reported having a clinical nurse specialist. The survey also showed that cancer patients who had support from a clinical nurse specialist had a better overall experience of care. We expect the National Health Service to consider this in developing its policies to improve patient experience. A 2011 survey is now in progress. We will be looking closely at the results of the survey to see where improvements have been made and where more needs to be done.
Research featured large in this debate, including in the speeches of the noble Lord, Lord Aberdare, my noble friends Lord St John of Bletso and Lord Sharkey, the noble Lord, Lord Kakkar, the noble Baroness, Lady Thornton, and others. The National Institute for Health Research is making a significant contribution to the search for scientific breakthroughs in pancreatic cancer. The institute’s clinical research network is currently hosting 17 studies of pancreatic cancer and is recruiting patients as we speak. In August 2011, the Government announced £6.5 million of funding for the Liverpool biomedical research unit for gastrointestinal disease. About half this investment will support pancreatic cancer research. The NIHR clinical research network, as mentioned by the noble Lord, Lord Kakkar, is currently hosting 17 trials and other well designed studies in pancreatic cancer that are recruiting patients. In 2010-11, a total of 687 patients were recruited to pancreatic cancer studies hosted by the CRN. The National Cancer Research Institute’s upper-gastrointestinal clinical studies group is dedicated to developing a portfolio of research studies in pancreatic cancer, and has a pancreatic cancer subgroup, which has developed a number of internationally run trials. That is a cause for some encouragement.
The noble Baroness, Lady Thornton, referred to the research involving processed meat. She is right; Swedish research published in the British Journal of Cancer in January 2012 said that two rashers of bacon or one sausage a day increases the risk of pancreatic cancer by 20 per cent. There is also a link with bowel cancer. The department urges everybody to have a balanced diet. As with other forms of cancer, higher consumption of fruit and vegetables seems to be protective, but I will write to the noble Baroness if I have any further information on that subject.
The noble Lord, Lord Aberdare, referred to new cancer drugs. Our priority is to ensure that cancer patients get the drugs that their doctors believe are best for them. We have delivered on our promise in the coalition agreement for a cancer drugs fund, with £650 million, all told, devoted to it. This funding has so far helped more than 12,500 cancer patients in England to access the cancer drugs that their clinicians recommend. We have listened to feedback on the first year of the fund’s operation, and today are publishing new guidance on the cancer drugs fund, which will further speed up access for patients. The new guidance makes it clear that patients will not normally need to go through the primary care trust funding processes prior to applying to the fund. In most cases, it will mean that patients are able to access drugs within a matter of days of an application being made to the fund. In the longer term, our intention is to introduce a system of value-based pricing for new drugs, with the aim of enabling patients to have greater access to effective and innovative new medicines. The whole premise of value-based pricing is to ensure that the price of a drug will be linked much more closely to its assessed value. It will bring the price that the NHS pays more into line with the value that a new medicine delivers.
My noble friend Lady Jolly asked about that. She also asked about mechanisms in the Health and Social Care Act that might assist cancer patients. The main mechanism is the outcomes framework, which will of course pervade everything that the NHS Commissioning Board does in the way of commissioning guidance, and will inform the way that the commissioning outcomes framework is developed. She also asked about engagement with the royal colleges. Ministers are currently meeting representatives from the royal colleges on education and training—I do not think on pancreatic cancer specifically but certainly on the training of doctors.
The noble Baroness, Lady Morgan, asked me a number of questions. The NHS outcomes framework— I pay tribute to the work of the All-Party Group on Cancer over a number of years—will be updated annually to ensure that the most appropriate measures are used for comprehensiveness, while recognising that we need to keep a broad continuity of indicators year on year. The refreshed NHS outcomes framework 2013-14 will be published alongside the mandate in the autumn. To support the ongoing development of the framework, we are in the process of establishing an independent technical advisory group that will provide advice to the department and the board about current indicators and proposals for new ones.
The noble Baroness asked about the national cancer patient experience survey. With the leave of the Committee, as there is a small amount of time left I propose to utilise it, unless there are any objections. In the first NHS outcomes framework we explained that the approach to Domain 4, which is patient experience, was evolutionary and the initial set of improvement areas for this domain was drawn from existing nationally co-ordinated surveys or from surveys that would be available in 2011-12. Collectively, the improvement areas aim to achieve wide coverage of the interactions that people have with the NHS and focus on different features of patient-centred care. Future work will involve refining surveys and developing new questions and measures to allow existing indicators to be replaced over time as necessary.
With regard to cancer networks, we have already made clear that there is a role for clinical networks such as cancer networks in the reformed NHS, as a place where clinicians from different sectors come together to improve the quality of care across integrated pathways, and the cancer networks are a clear example of how that way of working delivers better quality. That is why the Secretary of State announced last May that we would continue to fund cancer networks this year and that, subject to legislation, the Commissioning Board will support strengthened cancer networks.
The noble Lord, Lord St John of Bletso, asked about quality standards. There is no intention to produce a quality standard for pancreatic cancer as such, but in future there will continue to be flexibility in the library of quality standards to take account of new and emerging priorities, should such need arise.
Our ultimate goal is to improve survival rates and the quality of life for those living with all cancers, including pancreatic cancer. There are many challenges to be overcome but they are not insurmountable. Because of the Health and Social Act, clinical commissioning groups will be free to pursue innovative ways of delivering care that bring better results for all patients, including those with pancreatic cancer, and NHS provider organisations will have the operational independence to determine how best to meet the needs of commissioners.
We have set five ambitious but measureable goals: to prevent people from dying prematurely from cancer; to improve the quality of life for people with cancer; to help people recover from episodes of ill health; to improve the experience of care; and to ensure that all patients are treated and cared for in a safe environment. We will continue to deliver on those goals.
Lord Patel
I am not sure if it is in order for me to do this, but I know that whatever the Minister says is taken as gospel, and he quoted a study from Sweden about the association of eating meat with pancreatic cancer. I do not know about the quality of that study, but it sounds surprising that that amount of meat-eating increases the risk of pancreatic cancer by 20 per cent. I presume that he was talking about relative risk, not absolute risk.
The Deputy Chairman of Committees (Lord Geddes)
The Grand Committee stands adjourned until 4.30 pm, or indeed there may be a Division during that time, in which case it will be 10 minutes from the time when the Division is called.