PARLIAMENTARY DEBATE
NHS Blood Cancer Care - 17 January 2018 (Commons/Westminster Hall)
Debate Detail
[Phil Wilson in the Chair]
That this House has considered blood cancer care in the NHS.
Mr Wilson, it is a pleasure to serve under your chairmanship.
Like many people in this room today, I have lost a family member to blood cancer. Five and a half years ago, my mother died from acute myeloid leukaemia, also known as AML, an extremely short time after diagnosis. I have been touched by the many stories of families in Crawley and nationwide who have contacted me to share their own experiences of losing a family member to blood cancer. With conditions such as AML, there is an incredibly short time—sometimes just a matter of days—between being diagnosed and this form of blood cancer taking a life.
It was with those stories in mind that in 2016 I was pleased to set up the all-party parliamentary group on blood cancer. I place on the record my thanks to all colleagues, including those who left Parliament last year, for their work in getting the group up and running and in starting our inaugural inquiry on NHS blood cancer care. While the inquiry, held last year, and the report, to be launched in the Palace of Westminster right after the debate, focus on the implementation of the cancer strategy for England, we are keen to learn from examples of good practice in Scotland, Wales and Northern Ireland and have made approaches to the devolved Administrations accordingly.
I was going to say that, from four o’clock, right hon. and hon. Members are very welcome to come along to Strangers’ Dining Room for the launch of our report.
Does the hon. Gentleman agree that in this area, as in stem cell research, great progress has been made over recent years, and we do not want to lose that progress? Financial budgets are tight, and we realise that the health service faces many challenges, but we need to keep the research going. There has been great progress in this area and we must not lose it.
The APPG’s work focuses on blood cancer—as my hon. Friend the Member for Henley (John Howell) said, it is a hidden cancer—on the differences between blood cancer and solid tumour cancers such as breast cancer and prostate cancer, and on the ways in which patient outcomes can be improved with Government, medical professionals and local healthcare bodies working in partnership.
It is not an exaggeration to say that blood cancer is one of the great public health challenges of our time. We know it is the third biggest cancer killer in the UK, the fifth most common cancer overall, and by far the most common cancer among people under the age of 30, as we heard from an intervention earlier.
A key factor in ensuring early diagnosis is a greater knowledge and understanding of the symptoms of blood cancer. Diagnosing one of the 137 different types of blood cancer can be complex because symptoms such as back pain or tiredness can, of course, easily be misunderstood or misdiagnosed. Other symptoms of blood cancer include night sweats, weight loss and bruising, and in the first instance can often appear similar to feeling “run down” or having the flu, as was the case with my mother. We thought she had flu for a couple of weeks beforehand, and then she sadly passed away in a very short time.
As was said in an earlier intervention from my hon. Friend the Member for Henley, unlike solid cancer tumours, blood cancer cannot be surgically cut out, and the experience of blood cancer patients is therefore very different from that of those with other forms of cancer. Blood cancer patients are not currently receiving the treatment and support they deserve, which is one of the key points that I hope the Minister will take from the debate.
The Government and NHS England need to address, as a matter of urgency, the specific needs of blood cancer patients and take immediate steps to improve their care. Something that may seem as simple as the terminology surrounding blood cancer can have an effect on ensuring support for patients. As I said, there are 137 different types of blood cancer—we have heard a number of different examples already—including various strands of leukaemia, lymphoma and myeloma. In each of those, one common word is missing: cancer. The lack of that important word when telling somebody they have one of those forms of blood cancer runs the risk of their not fully comprehending the gravity of their condition. The APPG’s report found that clinicians and patients said that the increasing use of the overarching term “blood cancer” has helped patients who have been diagnosed recently to gain a greater understanding, not only of how the disease is part of a wider clinical area but that there is an entire community of health professionals, charities, and patient groups to help them.
I am grateful to all those who took the time to respond to our web consultation and answer the questions, including those on early diagnosis. After analysing the responses, the APPG’s report outlines three main audience groups where increased awareness could benefit patient outcomes. The first is the general public. While greater awareness of the symptoms would lead to people seeking medical intervention sooner, I also appreciate the words of caution from some in the medical profession, who reiterate that this must be handled carefully to avoid undue concern, particularly given the commonality of the symptoms. There is agreement that blood cancer awareness is far behind that of other common cancers, as we have heard.
The second group is GPs. Recognising and diagnosing blood cancer symptoms can be difficult, and many patients reported frustration at having to see their GP a number of times before their blood cancer was diagnosed, as we have heard. The third—as I turn to the Minister—is cancer policy makers. We heard that blood cancer was not always at the forefront of their minds. As such, we seek the extension of policies and initiatives designed to ensure broad benefit to patients with solid cancer tumours to those with blood cancer.
Much of the work on blood cancer awareness is undertaken by the charity sector. To that end, I pay tribute to the Spot Leukaemia campaign organised by Leukaemia CARE, which I am pleased to say was supported by my local community through Crawley Town football club, which made the cause its charity of the day at a game just last September. I ask the Minister for his assurance that the Department of Health and Social Care will engage with such campaigns, to ensure that the full power of his Department and the NHS can be used not only to work in partnership with such charities but to give greater consideration to non-solid tumour cancers when developing policy.
If blood cancers are taken into greater account, it will lead to improvements in the patient experience. As we heard in an earlier intervention, the patient experience of those with blood cancer differs from those with other cancers. The sad reality is that some patients with some chronic blood cancers will never be cured. They will instead require treatment for the rest of their lives, with the cancer managed as a long-term condition. Patients who have had access to a clinical nurse specialist have been clear on the role that a CNS has in the patient experience. Indeed, respondents to the APPG’s report were clear that access to a named CNS was the single most important factor that improved their experience.
Again, the charity sector is working to support patients in this area. By April, the Anthony Nolan charity will have funded nine CNS posts in stem cell transplant centres across the UK. These specialists provide support for patients, including assistance in getting back to work or school, as well as dealing with the physical and emotional aspects of a stem cell transplant—a potentially curative treatment for blood cancer, as we heard in an intervention, for which I am grateful.
Some patients will be put on a watch and wait programme, as I mentioned earlier. That literally means that a patient’s blood cancer is monitored, and it can sometimes take years for it to reach a point where treatment can start. The very nature of such a scenario will place unbelievable pressures and strain not only on the patient fighting that cancer, but on their family, friends and wider support network.
Tailored psychological support, which I am grateful to my hon. Friend the Member for Kettering (Mr Hollobone) for mentioning, needs to be made available for patients—particularly those on a watch and wait regime.
I pay tribute to organisations such as Macmillan, which is very worthy of our support and does amazing work for those with not only blood cancers but all chronic and terminal conditions. I ask the Minister for his assurance that, as recommended by the cancer strategy, all blood cancer patients have access to a clinical nurse specialist or equivalent model of support.
One of the points raised in the two oral evidence sessions held by the APPG last September was the work of charities to provide support for patients and their networks. As my hon. Friend the Member for Hornchurch and Upminster (Julia Lopez) said, a lot more support needs to be given to patients and their families on issues not related to treatment, such as financial advice, so that they can devote their time and energy to getting better.
I have mentioned a number of organisations, but I reiterate the fine work of Macmillan, which offers help to cancer patients and their families up and down the country. In my constituency of Crawley this week, one of the charity’s information hubs will be open in the County Mall shopping centre until Saturday. Its staff are on hand, as they are all the time, to answer questions about symptoms, side effects or any other issue relating to support locally.
We can be thankful that an increasing number of blood cancer patients are living for many years after their diagnosis, and I thank hon. Members for giving examples from their constituencies. The cancer strategy says that all cancer patients will have had access to the recovery package by 2020. That helps patients after their treatment has finished, so that they can return to their normal lives as much as is possible. Of course, there must be recognition that patients can go from having regular access to a healthcare professional while receiving treatment to feeling like they have no support at all after treatment ends. It has been described as like falling off the end of a conveyor belt, with no one to talk to about after-effects, dietary needs and the everyday activities they had enjoyed before treatment started.
I come back to the issue of how blood cancer is different from solid tumour cancers. I hope the Minister and his colleagues at the Department of Health and Social Care will work with NHS England to consider how all patients can benefit from aftercare support, including ensuring that the recovery package takes into account the differences. It is difficult to go from, in some cases, constant access to a CNS during treatment, including communication being available by mobile phone, emails and texts, to support coming to an end when a patient is sent home. There are long-term effects of blood cancer that need to be taken into account.
In particular, for patients treated with a stem cell transplant, the transplant itself is only the beginning of a long journey to rebuild their lives. By 2020, it is thought that there will be more than 16,000 people living post-transplant, and a significant proportion of those people will experience long-term side effects of their treatment. They will require specialist support, and it is incumbent on us to ensure that people across England receive it with greater consistency.
I move on to the issue of new treatment access and research on the differences between blood cancers and solid tumour cancers. It is important to remember that blood cancers are often not treatable using surgery or radiotherapy. Blood cancer is therefore more dependent on the development of and access to new drugs in order to continue enhancing patient outcomes.
The process of how the National Institute for Health and Care Excellence and the drug manufacturers negotiate can affect patients. Where NICE has offered negative draft guidance on a particular cancer drug that, after further negotiations between NICE and the manufacturer, changes to final positive guidance, the period when patients are left to think that potentially life-changing or life-saving treatment may not be available can cause huge anxiety. Our report calls for final negotiations to be undertaken before negative draft guidance is published.
I have mentioned the work of the charity sector in supporting blood cancer patients. That is perhaps most significantly represented by the financial investment made by blood cancer charities to fund research, develop a good research base and ultimately produce relatively good survival rates. I ask the Minister to ensure that further support is given to that research, to not only provide financial backing but ensure that blood cancer patients are at the heart of cancer policy.
I am conscious of allowing other colleagues the opportunity to make substantive remarks, but on the subject of NHS commissioning, local decision makers should look for opportunities to bring care for chronic blood cancers closer to the patient where appropriate. I will be writing to my local clinical commissioning group in Crawley to share a copy of the APPG’s report, and I encourage colleagues to do likewise with their respective CCGs.
I am sure that all of us here today can name people in our local areas, as many hon. Members have, who have experience of dealing with blood cancer in their family and working to raise funds for those who want to make life easier for patients and their support networks. In my constituency of Crawley, I am grateful for the work of the Mark Henry Archer tribute fund at Bloodwise, which was set up by my constituent Jayne Archer in memory of her late husband, Mark, who sadly lost his battle with lymphoma in 2010.
I mentioned at the start of my speech that blood cancer is the most common cancer among people under the age of 30. Someone can be in the peak of physical fitness and it can still strike. Just a week into this new year, Juan Carlos Garcia lost a three-year battle with leukaemia. He was just 29 years old and a professional footballer who had played in England for Wigan Athletic and at the 2014 World cup for Honduras. Blood cancer quite simply can strike anyone at any time.
I would like to thank the patient advocate and medical professionals who took the time to come to Parliament and answer the APPG’s questions at our evidence sessions last September. I also express my sincere gratitude to Bloodwise for providing secretariat support to our APPG, assisting blood cancer patients up and down the country, and playing a leading role in the research that is necessary to improve outcomes and the patient experience.
I know that many people in this room will be aware of one family that has been affected by blood cancer in the last couple of months. The Sky Sports presenter Simon Thomas and his eight-year-old son Ethan lost their wife and mother Gemma, aged just 40, last November. Just three days after being diagnosed with acute myeloid leukaemia—the same form of blood cancer as my own mother—Gemma passed away. Incidentally, my mother’s diagnosis came just hours before her death. Our thoughts are with Simon, Ethan and their family and friends, and every patient affected by this disease.
It falls to each of us here to make sure we redouble our efforts to bring as much help, comfort and support to blood cancer patients as possible, and I ask the Minister for his continued diligence in such matters. I have seen at first hand how quickly those who have blood cancer can be taken from us. In a previous debate that I was fortunate to secure in Westminster Hall on 7 July 2016, I said:
“I look forward to ensuring that the issue of blood cancers is further advanced and that awareness is increased.”—[Official Report, 7 July 2016; Vol. 612, c. 395WH.]
With the progress of the APPG and the support of colleagues here and those who will be attending the launch of the group’s report from 4 o’clock in Strangers’ Dining Room, I am pleased to stand here today and say that we are making great strides. There is much more to be done, and we will continue to make progress.
I shall focus my comments today on the commissioning of stem cell transplantation and the inconsistencies in post-transplant care. There is a common misconception that if a blood cancer patient finds a matching donor and undergoes a stem cell transplant, they are out of danger—that that is the beginning of the end of their journey, the point from which they get better. In reality, nothing could be further from the truth. Although a stem cell transplant is a potentially curative treatment for blood cancer patients, recovery can be a long and difficult journey. Many of those living post transplant will experience severe and debilitating physiological and psychological side effects from their treatment, not only in the first few days, weeks and months after the transplant, but many years down the line. Indeed, a transplant patient is often described as “a patient for life”.
The side effects include physiological problems, such as graft versus host disease and a higher risk of second cancers, infections, infertility, premature menopause and fatigue, as well as psychological effects, including isolation, depression, anxiety and post-traumatic stress disorder. Patients dealing with the impact of a stem cell transplant, and particularly those receiving an allogeneic transplant, therefore require ongoing support from appropriately qualified health professionals.
The problem is that the provision of high-quality post-transplant care varies significantly across the country, leaving vulnerable patients at the mercy of the often fragmented and inequitable postcode lottery NHS, in which some get very good support but others get very little.
Recent research by the charity Anthony Nolan reveals that many patients are struggling to access the services that they need post transplant. It is particularly concerning that only half those who need psychological support, such as counselling or group therapy, receive it. The same is true for practical support, such as help at home or with getting back to work; and one in five is not offered any specialist care to help with elements of their physiological recovery, which includes access to physio- therapists, dieticians and fertility experts.
To address the areas of unmet need, we must reform the commissioning of post-transplant care. Currently, responsibility for commissioning services transfers from NHS England to CCGs after only 100 days. There is evidence that that arbitrary cut-off leads to gaps and variation in the care and support that hospitals are able to provide, despite their best efforts. That increases the burden on patients and their families, making their recovery much more difficult. As recommended by both the APPG report and Anthony Nolan, it is essential that NHS England reviews the 100-day cut-off in order to eliminate the inconsistencies and fragmentation in post-transplant care across the country. I hope that the Minister addresses that point in winding up the debate.
As part of the process, we should consider the creation of a national care pathway for patients for at least five years post transplant. That pathway should ensure that patients have access not only to the full range of physiological, psychological and practical support services after their transplant as well as before and during, but to a clinical nurse specialist—or equivalent model of support—who can help them through their recovery journey, managing their care and plugging some of the gaps that would otherwise exist.
People may know that my husband, Ian, had a stem cell transplant more than three years ago, just after being diagnosed with acute myeloid leukaemia. What I have said today reflects his journey. He has been a beneficiary of cutting-edge research, which has allowed his cure, but we have also experienced some of the inconsistencies along a journey that has been too long to narrate today. It is from that experience, and from my heart, that I ask the Minister to look at a fully funded care pathway for at least five years post transplant, with the specialist care needed to allow people the chance to live their lives again as fully as they can.
In 2015 in the Grampian NHS Board area, which includes my constituency of Gordon, there were 265 new diagnoses of leukaemia, lymphoma or myeloma, forming one in every 12 diagnoses in the area that year. In the same year, 106 lives in the Grampian area were taken by these cancers. It is crucial, therefore, that we leave no stone unturned in the fight against blood cancers. That includes research and development, on which the UK Government have a strong record that I very much hope will continue. The life sciences sector deal announced last year will provide a welcome boost to the industry and help it to strive towards better ways of treating blood cancers
However, quality NHS care is also important. People with blood cancers deserve the best possible care from the NHS, wherever they are in the country. In that light, I would like to take this opportunity to pay tribute to the dedicated staff of Aberdeen Royal Infirmary, which serves my constituency and covers an area of 500,000 people; indeed, it covers the whole north-east of Scotland right up into the highlands. The work of the staff in its oncology department is second to none and has saved countless lives over the years. The start of treatment in Aberdeen Royal Infirmary’s new radiotherapy department in 2014 was a welcome step forward in the treatment of blood cancers and other cancers in the north-east of Scotland. That state-of-the-art new building has enabled the team to deliver new techniques and new forms of therapy to more and more patients—a development that can only be good.
The hard-working staff at Aberdeen Royal Infirmary deserve across the board support from the Scottish Government. However, as with Her Majesty’s Government, budgets are constrained. Oncology at the ARI has not been spared, unfortunately, from the long-running staff shortages. For a department that treats cancer patients not just in Gordon but across the north-east of Scotland and even further afield, that is obviously very concerning. Across Scotland, vacancy rates for consultants and nurses are disappointingly high, with 400 consultant posts now unfilled. Both north and south of the border, shortages are damaging. NHS staff and patients alike must have the security of knowing that their local oncology department is, and always will be, adequately staffed and given the support that it deserves.
My family’s experience of the oncology department at Aberdeen Royal Infirmary and of support from Macmillan nurses has been excellent. There are many ways we can take the fight to blood cancers. Research and development, which has been mentioned, is one vital pillar, and encouraging stem cell donations another. We must be sure to put NHS care at the very centre of our efforts.
As the Democratic Unionist party spokesperson for health, I felt it necessary to make a contribution, even though the onus of where we are is probably England-based. We need to highlight some issues with regard to the NHS and blood cancer care. My father, who is dead and gone almost three years, had cancer—not blood cancer—on three occasions, but he survived those three occasions owing to the skill of the surgeon’s knife, the care of the nurses and the prayers of God’s people. Clearly, we have made great advances—some magnificent advances—in cancer care over the past few years.
May I say to the Minister, the shadow Minister and the proposer of the debate that I, along with others, have a meeting with the Prime Minister at half past three, so I need to get away for that occasion?
I was delighted to receive information on blood cancer and I take this opportunity to thank all of those who are working so hard to highlight the issue and bring about change, and who supply such enlightening and helpful information. There are almost 250,000 people living with blood cancer in the UK today. Although many forms of blood cancer are rare, as a group blood cancer is Britain’s fifth most common cancer and third biggest cancer killer, claiming more lives each year than breast or prostate cancer. Those figures surprised me. We are all grateful for the advertising that highlights breast and prostate cancer, which affects us men. Unfortunately, we are probably loth to see the doctor, but the Minister’s Department encourages us to be more active and forthcoming about the problems that we have. Advertising keeps these things fresh in our minds and educates us as to the symptoms to be aware of, but the fact is that blood cancer kills more people and we need to be mindful of that when finding additional funding. The Minister always responds in a positive fashion to the debates in Westminster Hall and tries to help.
Northern Ireland has an average of 123 cases of leukaemia diagnosed annually. That may not seem much, but when we take into account the small size of Northern Ireland it is clearly something that is taking its toll. It is also clear that the aftercare of those cases is essential. Although we are discussing NHS England, there is a need for devolved bodies to work together to ensure that we do not have a UK postcode lottery for the treatment of blood cancers and that an equal level of treatment is available UK-wide. Can the Minister outline whether he has had any co-operation with the Department of Health in Northern Ireland? If not, is he willing to undertake to do that?
I have been contacted by Myeloma UK, which asked me to highlight its cause and needs. I am happy to do so in Westminster Hall and for the Hansard record. Some 5,500 new cases of myeloma are diagnosed in the UK every year, which equates to 15 people a day. Although myeloma is a rare cancer, it is the second most prevalent blood cancer, which has no cure as such. It is important to highlight that in Westminster Hall today and with the Minister.
In the past 10 years, with improvements in treatment and care, survival rates are increasing faster than in most other cancers, so there is some good progress, but there is a long way to go. Myeloma remains a very challenging cancer to live with and to treat. To truly get to grips with that cancer means dedicating funding to finding the cure, but also providing a quality of life for those who suffer from it.
In our debates on cancer the one thing that always comes up is early diagnosis. Whether it is prostate cancer, breast cancer, myeloma or bowel cancer, getting it early is the secret. I mentioned us menfolk earlier and how we respond to things. Maybe we need to be a bit more eager to tell our doctor when things are wrong with us. I commend the many charities and groups such as Marie Curie and Macmillan. Along with those charities we also have many church groups and organisations that help and give succour and support to families at a time when one of their loved ones is very ill.
Another issue is that of the 100-day care by NHS England after treatment, which must be reconsidered to ensure that there are no gaps in service, as has been highlighted by the Anthony Nolan trust. The Minister is nodding; I know that he and others in this Chamber are aware of that. The briefing that was provided made it clear that the steps taken by the Government have been welcome, and yet more leeway is needed to allow complete care packages to be in place. If that means going over the magic number of 100 days, there needs to be a mechanism that allows that to take place. Will the Minister fully consider that request—I know he will—and provide a detailed response outlining his decision as to whether the extension of care before transfer to local CCGs can be achieved?
I believe we can make decisions in this place, in this House, in Westminster Hall, in the House of Commons and across the whole of the United Kingdom of Great Britain and Northern Ireland that will allow blood cancer sufferers to have a better prognosis and a better treatment plan. We must do all that we can to bring that about.
As has been said by Members, blood cancers often represent a hidden cancer, but that applies to solid cancers as well, particularly ovarian and pancreatic, which also tend to present with vague abdominal symptoms that simply could be nothing. The general practitioner sits there seeing cases of back pain and tiredness one after the other, and the challenge is to spot the patient among hundreds who might have something else. Obviously, if someone talks about bruising and night sweats, we hope that a GP would do a simple blood test that might flag up that one patient—that canary among the swallows —who needs to be referred to hospital and diagnosed. At medical school, we medics were taught to have a high index of suspicion, to not just go around assuming everything is nothing, but to try to hold those other things in our heads.
The hon. Member for Crawley mentioned that there are more than 130 types of blood cancers, but there are three main groups: leukaemia, lymphoma and myeloma. As a breast cancer surgeon, I dealt with lymphoma patients because they present with a lump. Lymph glands are all over the body and commonly swell up, so they would present with a lump in their neck or under their arm. A woman would commonly be sent to me with a suspicion of breast cancer.
Blood cancers are grouped together because of the type of cells they come from, but they behave in different ways. As was said, the challenge is how to get them diagnosed: how to have that index of suspicion. When someone moves to treatment, we use radiotherapy in some patients, particularly in lymphomas if the disease is localised or regionalised. The downside is that they might have radiotherapy over a large area of the body. Most of us are aware that radiation is damaging. I had patients in my breast cancer clinic that were under follow-up because they had had radiotherapy to their chest when they were teenagers and now had an additional risk of breast cancer. As we get more people to survive cancer, the challenge is the risk that they have of other diseases or ongoing side effects.
Dependence on chemotherapy and drug treatment has been mentioned. Of course, the biggest breakthrough was bone marrow transplants to deliver healthy stem cells. Radiotherapy is also used as part of that. The dependence on drug treatment and chemotherapy means blood cancers are even more vulnerable than other cancer types to the difficulties of accessing new and expensive drugs. A new drug, daratumumab, was just passed in Scotland in October. The decision will be made by NICE next month. It is the first immune treatment for one of the diseases in question, and obviously we hope that it will be the first of many that could start to bring about change, but inevitably such drugs, based on monoclonal antibodies, will be expensive, and that raises the issue of drug access.
In Scotland, there is the new medicines fund and in England there is the cancer drugs fund, a slight downside to which is that it is only for cancer. That might not be a problem for the patients that we are concerned about in this debate, but it is for people with some other diseases. However, the fund plays a role for drugs that have not yet reached the point of being passed by NICE, but for which some hope is felt. There was obviously great anxiety when seven key treatments were removed from the cancer drugs fund a few years ago.
Something else that happened a few years ago was that a limit started to be put on the holy grail treatment of bone marrow and stem cell transplant, in that patients with a recurrence were not given the opportunity for a second transplant between the summer of 2016 and the spring of 2017, because that was no longer being commissioned. Politicians and those high up in organisations such as NHS England need to be conscious that trying to balance the books may pull the rug from underneath people. The gap of three quarters of a year will have been catastrophic for some people who might have benefited. That must be recognised when decisions are made.
In the Scottish NHS, we do not have mechanisms such as 100-days commissioning, and hearing about it highlights to me how time, energy and people are wasted in trying to knit together a system that has become fragmented. I hope that the husband of the hon. Member for Coventry North East (Colleen Fletcher) is doing well, and continues to do well; but for the cancer nurse specialists or doctors to have to try to plug a gap, or for patients to fall through the gap because, as was said in one briefing, there are CCGs and commissioning groups that do not even know they are responsible for commissioning that care after the 100 days, is a waste. I spent more than 30 years working as a breast cancer surgeon and I would not want to have to waste clinical time in trying to deal with the gaps between stools. I think that the friction between what NHS England commissions and what CCGs are responsible for must be looked at.
The hon. Member for Crawley highlighted, as did the charity briefings we received, the watch and wait approach taken with patients suffering from one of the more chronic types of blood cancer, such as chronic lymphocytic leukaemia and follicular lymphoma. I do not think that that should be seen as negative. We would not want to put people through tough chemotherapy if they were well; therefore we would not rush to do that. That is probably why many years ago those types were not labelled as cancer: what was referred to as “the C-word” was seen as a catastrophe. There was an attempt to give people the feeling that they were living with a disease; whereas we see cancer as meaning that the clock is running and we must rush to do everything. Therefore using the word “cancer” and then telling someone, “Actually we are not going to do anything about it,” is very challenging. That requires time for the clinician to have an open, honest and informed debate with the patient, so that they understand why they are not suddenly being put through chemotherapy.
Data and the auditing of performance are important for driving through the improvement of any service. I do not mean such things as waiting times, on which we all collect data, but actual clinical standards—how someone is treated and what we would expect. What would all the clinicians in the area think was good practice? I do not mean shutting things down, or units being threatened by the Care Quality Commission. Having developed the breast cancer standards in Scotland in 2000, I can say that sitting in a room with all the breast teams of Scotland and looking at the data in a big PowerPoint on the wall is a dynamic tool for getting people to change practice. No one goes to work wanting to be the worst team in their country, region or area. Having access to actual clinical data is a great driver of quality.
In England, work is being done on setting up cancer dashboards for the four commonest cancers. In Scotland, we have them for the 11 commonest cancers. We have had Scotland-wide breast cancer data since 2003. I have seen the quality go up simply from our all meeting every year, looking at the data and challenging each other and discussing the data—and sharing solutions. Whatever problem a unit faces—whatever the reason for their performance going down—someone else in the room will have had that problem before, and solved it. Such peer review and sharing of practice drives things forward. One of our big hopes for the cancer alliances is that they will redevelop what existed in cancer networks, which we still use in Scotland: people meet, support each other, and share practice.
The importance of research has been mentioned. As a great believer in the European Union and the things that we have gained from it, I am anxious about our leaving the European Medicines Agency, about the loss of its support mechanism on rare diseases, and about the possibility that we will be outside the clinical trials regulation system, which is designed vastly to reduce the paperwork involved in taking research forward in a clinical trial. In the end, what we want to come from research is new treatment—new drugs. The UK is dynamic in the life sciences and the development of new pharmaceuticals, but the rather bizarre thing is that often our doctors do not get to use them. For people working in hospitals, that is getting to be a negative feedback loop. We do not get paid extra if we put patients into trials. There is an enormous amount of paperwork, and people inevitably stay well after time to make sure that things function. If suddenly at the end of the trial period, when they might be getting the drug funded, they cannot get access to the drug for several years, until it gets through NICE in England or the Scottish Medicines Consortium, those people feel, “Who is gaining? It is not my patients.”
We require a different conversation with the pharmaceutical firms—some form of risk sharing by which perhaps a drug can be provided at a much lower price to the NHS. Instead of access simply ending and our going generic when the patent is finished, there could be a deal as to how many patients are treated with the drug before the NHS uses generic drugs. In that way the firms would know they would get a return on their money. The way things are at the moment, at the end of all the trials the price is worked out from how much time is left and how many patients are likely to be treated. If, as when Herceptin came in, it is a matter of thousands of pounds—Kadcyla was £90,000 per patient—it becomes almost impossible. While we tinker at the edges of the pharmaceutical price regulation scheme and what is done with the money we need a much deeper conversation.
Obviously we want to promote awareness of blood cancers. Public awareness of the blood rash was mentioned; but also doctors need to think about having a high index of suspicion, and doing a simple blood test. For legislators and those who oversee the NHS systems in which decisions are made, it must be important that when a patient goes to see the doctor they set off on a smooth pathway that does not involve negotiations, hassles and disruptions, and that we support them all the way through that journey.
As we have heard throughout this debate, blood cancer is the third biggest cancer killer in the UK, and the fifth most common cancer, with more than 230,000 people living with the disease. For those people and their families—some of whom are here today or watching the debate—action is needed to improve the treatment and support on offer. That includes some of my own constituents who contacted me prior to this debate, and it is for them that we are here today. There is much that we can do to improve treatment and support, as so eloquently put by the hon. Member for Crawley, and others who have spoken today, including my hon. Friend the Member for Coventry North East (Colleen Fletcher), and the hon. Members for Gordon (Colin Clark), for Strangford (Jim Shannon), and for Central Ayrshire (Dr Whitford), who all made excellent speeches.
Blood cancer patients need to see their GP many more times before being referred to hospital than those with other cancers. Indeed, 35% of blood cancer patients had to see their GP three or more times before being referred, compared with only 6% of those with breast cancer, and 23% of those with all other tumour types. Such figures must be the fire beneath that spurs us on to do more, otherwise we will be failing the 230,000 people who live with this disease. Today I want to pick up on three key issues: first, patient experiences, and specifically the “watch and wait” principles of treatment and support; secondly, the improvements needed in research and access to treatments; and finally I will discuss post-stem cell transplant care.
Each year, 5,000 people with slow-growing blood cancers do not start treatment straight away, but instead are placed on a regime called watch and wait. That means that patients are monitored until they reach a point where treatment must start. It can take many years for that to happen, which can add much pressure to a patient’s life, including the psychological struggles that they might face. That is understandable: it must be excruciatingly difficult for someone to live with a cancer, including a blood-borne one, yet not receive any treatment, even though they know they have the disease.
To help fully understand this struggle, I want to read from a case study that was sent to me by Bloodwise, and written by the blogger who writes the “Diary of a ‘Fake’ Cancer Patient”. It states:
“About a month after diagnosis, I went to pieces and sat in front of my consultant panicking, crying and generally not coping.”
Reading the full case study is harrowing but heart-warming at the same time. That may sound peculiar, but it shows the scale of the struggle that blood cancer patients face under “watch and wait”, and also that when support is offered they can lead as normal a life as possible, and have the support to cope with the disease and the situation in which they find themselves. That is why Labour supports calls for tailored psychological support for patients who are on watch and wait, and it would be welcome if the Minister addressed that point when he replies to the debate.
It would be of great interest to hear from the Minister whether the Government plan to look at the perceived pitfall in the cancer strategy regarding the recovery package, and the failures to take into consideration the unique characteristics of blood cancer, as well as the use of terms such as “beyond cancer” and “post-treatment”, which can be alienating to blood cancer patients. As we know, blood cancers are very different to solid tumour cancers, and that determines the kind of treatment on offer to patients. For blood cancer patients, treatment is not about surgery or radiotherapy; it is about drugs to help to fight their cancer, and importantly, about access to said drugs. It is therefore crucial that innovation and the development of new drugs is encouraged to help improve patient outcomes. The Government must continue to commit to ongoing research to help save lives, and capitalise on our world-leading position as blood cancer research pioneers.
Lots of this work already happens, including charitable investment and collaboration between public bodies. One such example is IMPACT—a £4 million clinical trials programme that is jointly funded by Anthony Nolan, Leuka, and NHS Blood and Transplant services. By 2020, this exciting and much welcomed project will have established 12 clinical trials involving approximately 1,500 patients. It will play an invaluable role in achieving the vision set out in the Government’s life sciences industrial strategy and—most importantly—it will help to save lives. It is of utmost importance that the Government continue their commitment to this work.
We must also consider how the cancer drugs fund works, and how the temporary collection of data to make appraisal decisions can, for some rare blood cancers, lead to insufficiency in collecting robust data, and therefore to negative appraisals for drugs. I have raised concerns in the past about the way we appraise drugs—indeed, I worked with the hon. Member for Central Ayrshire when we were both co-chairs of the all-party group on breast cancer, and we carried out work on some breast cancer drugs, including Kadcyla. It is therefore disappointing, yet not surprising, that we find similar situations when it comes to blood cancer drugs with, for example, the drug ibrutinib being given to patients with mantle cell lymphoma. That drug received a negative appraisal, and later a positive one. That causes unnecessary distress and anxiety for patients, and it is important that such problems are addressed. I hope that the Minister will give us some steer on when the Government plan to rectify these matters.
Finally, I will touch briefly on the need for support for those living post transplant, and the care that should be on offer to them. It is estimated that by 2020 more than 16,000 people will be living post transplant, and they will therefore be more exposed to physical and psychological effects, such as graft versus host disease, depression and prolonged duress stress disorder. Although stem cell transplants can save a person’s life—that is fantastic—it is important that when someone’s life is saved, they can live it to its fullest. Sadly, only 54% of those who need psychological support actually receive it. That is down to the commissioning of post-transplant services not working for all patients, especially at the 100-day cut-off after a transplant, when responsibility for services moves from NHS England to CCGs, and therefore leads to gaps in the care and support provided. Is the Minister aware of that, and will he commit to looking at how that gap can be filled so that patients receive the best post-transplant support possible?
This debate has been incredibly important, and I am sure it has given the Minister a lot to think about. I hope that when he gets back to his office, he will look at this issue in depth and read the APPG’s report following its launch today—I am looking forward to that—so that all the 230,000 people living with blood cancer can be confident that the Government are doing their utmost to give them the best chance of living.
Let me start by saying that the Government, and this Minister more than ever, are absolutely committed to transforming cancer services across England, and we take an all-cancer approach to doing so. It is true that cancer survival rates have never been higher, but we want cancer services in England to be the best in the world. We want to ensure that every patient, regardless of the type of cancer that they unfortunately get, has access to the treatment, the services and the support that give them the best possible chance of a successful clinical outcome and a successful recovery back into their lives, which are temporarily paused while they go through treatment.
Shortly after this debate, as my hon. Friend the Member for Crawley advertised very well, the all-party parliamentary group will publish its first report. Having chaired the all-party parliamentary group on breast cancer with the shadow Minister for many years—and for a bit with the hon. Member for Central Ayrshire (Dr Whitford)—and produced all-party parliamentary group reports, I know how much work goes into them and how important they are. My hon. Friend should know that they are noticed by Ministers—they are certainly noticed by this Minister. I have here the copy he kindly shared with me. I think it is an excellent and informed piece of work and I congratulate him and the charities that supported him through the secretariat. I assure him that the Government and NHS England will take careful notice of its findings and recommendations. As I always do when I speak in response to the launch of a report, I will see that he gets a response in writing to the recommendations that he has made, in addition to what I will say in today’s response.
The report highlights that someone is diagnosed with a blood cancer every 14 minutes. Nearly 250,000 people are living with blood cancer in the UK today, and it claims more lives than breast or prostate cancer. It is the third biggest cancer killer in our country, so this debate is as timely as it is important. I am pleased to say that many of the recommendations in this report mirror the strategic priorities set out in the cancer strategy for England, which outlines how we will implement all of the 96 recommendations of the independent cancer taskforce, chaired by Sir Harpal Kumar of Cancer Research UK, who will shortly step down from that role. What a loss that will be. I wish him well. I hope I can therefore assure my hon. Friend and other hon. Members that two years into the implementation of the strategy, we are already making significant progress in implementing the recommendations of the APPG report.
My hon. Friend the Member for Crawley stated where we must start—a point also made by my hon. Friend the Member for Henley (John Howell)—and that is early diagnosis. We all know that this is key for all cancers and it gives the best possible chance of successful treatment. To improve early diagnosis, the Government made £200 million available to cancer alliances in December 2016 to encourage new ways to diagnose cancer earlier, improve the care for those living with it and ensure that each cancer patient gets the right care for them. The APPG report highlights that early diagnosis of blood cancers is difficult—we have heard different contributions as to why that is—as symptoms such as tiredness or back pain, are often misdiagnosed. My hon. Friend the Member for Crawley mentioned that his mother presented with flu-like symptoms, which maybe threw them off the scent a bit in the early days. That is why, for suspected blood cancers, the National Institute for Health and Care Excellence published a revised guideline in 2015, which clearly sets out that GPs should consider a very urgent full blood count within 48 hours to assess for leukaemia, if adults present with suspicious symptoms. I am very sure that there is more that we can do around education in primary care, but I think that was a positive move from NICE.
Further, I must here mention the accelerate, coordinate and evaluate programme—ACE for short. It is a unique early diagnosis initiative, and a programme of 60 projects exploring innovative concepts across England. The programme is testing a new multidisciplinary diagnostic centre approach to diagnosing patients with vague or unclear but concerning symptoms, often characteristic of hard to diagnose cancers such as blood cancers. There are ten pilot MDCs across five areas of the country. They are one-stop shops that can ensure patients rapidly receive a suite of tests, reducing the risk that patients bounce around services receiving multiple different referrals for the same problem, having to start that explanation all over again—I know that is incredibly difficult—and do not get that all-important early diagnosis. We know that early analysis of these schemes is very positive and many patients can receive a diagnosis or the all-clear within just 24 hours. I look forward to seeing further analysis of these pilots when that is available and I very much hope that MDCs can become an important tool in helping us to identify blood cancers earlier. We have the new 28-day faster diagnosis standard coming down the track. I always say that 28 days is not a target, it is an end point. If we can beat it and do it in 28 hours, happy days.
Patient experience when it comes to cancer is clearly so important. The APPG’s report also rightly highlights the importance of that. Improving patient experience is one of the six strategic priorities set out in the cancer strategy, and cancer patients are receiving better and more effective care, we believe. We are committed to ensuring that this improvement continues. In 2016, NHS England surveyed just over 118,000 people through the national cancer patient experience survey, which I am committed to continuing in one form or another, because I know how important it is. Over 70,000 cancer patients took part in the latest survey. I am very grateful to all of them for giving us their feedback to help to improve the experiences of cancer patients in the future. This feedback is vital to inform and shape the way hospital trusts and clinical commissioning groups achieve further improvements for patients. The Cancer Vanguard has also developed an innovative cancer patient feedback system which is now being used by many organisations that provide cancer care in our country. This new system collects real-time patient feedback at key points in the patient care pathway, which we have heard mentioned today, so that it can be fed back and used by those redesigning services to put patient experience at the heart of improvements in service.
Linked to this point about patient experience is access to a cancer nurse specialist. My hon. Friend made the important point in his opening remarks that access to a CNS can make a hugely positive difference to the treatment experience of patients with blood cancer. Health Education England’s first ever cancer workforce plan clearly stated that we will ensure that every patient has access to a CNS or other support worker by 2021, and if we can do it sooner we will. We will do this by developing national competencies and a clear route into training.
I thank my hon. Friend and others for their tributes to Macmillan Cancer Support. I have been to Southampton General Hospital—my neighbour, the hon. Member for Southampton, Itchen (Royston Smith), was here earlier—to visit the acute oncology centre, which is a partnership between the University Hospital Southampton NHS Trust and Macmillan, and a brilliant centre it is too. I met patients undergoing treatment for blood cancers. It was not a planned visit, but it was timely, given this debate. Macmillan—a brilliant charity—is also currently carrying out a specialist audit to understand the current size and location of the specialist cancer nurse workforce. This will enable us in the Department and NHS England to develop a much more comprehensive picture of how many specialist nurses are working in cancer and what further action and investment might be required to ensure timely and good quality patient care and experience in line with the target that I have set out. Once we have this data, I hope in the spring, we will publish an additional chapter to the cancer workforce plan, and consider the actions needed to support and enhance the wider nursing contribution to cancer.
My hon. Friend the Member for Gordon (Colin Clark) spoke of workforce shortages north of the border. It is a familiar tale. We both face a cancer workforce challenge, which is why HEE produced our cancer workforce plan. It is a significant challenge to the NHS and cancer care, but one that we are absolutely determined to meet head-on and to beat.
My hon. Friend the Member for Crawley and other hon. Members made points about living with and living beyond cancer. I take the point made by the shadow Minister about that term. Obviously the cancer strategy is as published, but in time it will be refreshed, and I take on board the point, which she made well. More than ever, thanks to innovations in treatment there can be a full life beyond a cancer diagnosis. The hon. Member for Central Ayrshire reminded us really well about the C-word. It did used to be the big C. It used to be a terror, and still is for many, but so many people now have a full life beyond a cancer diagnosis.
From the moment that they are diagnosed, patients benefiting from the recovery package, which we have heard mention of, receive personalised care and support. Working with their care teams, patients develop a comprehensive plan that addresses their physical and mental health requirements, which we have also rightly heard mention of, as well as identifying any other support that they may require. We are working to ensure that every patient in England, including those with blood cancer, has access to the recovery package by 2020. I repeat: if we can do it sooner, we will.
Different cancers affect the body in different ways, and treatment and the recovery journey for someone with blood cancer can vary greatly to those for a patient with a solid tumour cancer. That is why every patient will receive a holistic needs assessment as part of their recovery package. For blood cancer patients, their recovery plan will be personalised to take account of the unique characteristics of blood cancer. My hon. Friend the Member for Crawley described the end of treatment as falling off the end of a conveyor belt, which is an expression that I have heard before. In my job I have seen research to the effect that the end of treatment can be more depressing than the moment of diagnosis. That is a really hard thing to say and to accept, but I can well believe, and know from personal experience, that it is true.
That moves us on to psychological support. My hon. Friend makes the point that many patients with a chronic blood cancer diagnosis will sadly never be cured. They will be on a regime of watch and wait, often over many years, to see if the cancer has progressed to a point where treatment needs to begin. That can, understandably, take a huge psychological toll on the patient and their families. That is why the point made by the hon. Member for Central Ayrshire is so true, and why the recovery package rightly takes a holistic approach and considers the patient’s mental health needs. The Prime Minister has made improving access to mental health services a priority for her Government. There has been a fivefold increase in the number of people accessing talking therapies since 2010, but we know there is much more to do, and I will be watching that like a hawk in my job.
We have heard today about the importance of research. If we are to continue to beat cancer and to better our figures, sustained investment in research is vital. The National Institute for Health Research spent £137 million on cancer research in 2016-17. That represents the largest investment in any disease area. It is thanks to advances in research that more than 90% of children diagnosed with the most common form of childhood leukaemia now survive. However, I recognise that progress in improving survival rates, including for some blood cancers, has been slow and that survival rates remain low. We have heard today that treatment of blood cancer is especially dependent on the development of new drugs and on being able to access them—an obvious truism—and that is why our focus is on not only research, but ensuring that proven innovations are adopted swiftly across the NHS in England. NICE’s fast-track appraisal process, or the FTA, which was introduced in April last year will, we hope, do just that. The FTA process will help to ensure that cancer patients have accelerated access to any clearly effective treatment that represents value for money for what is a publicly funded health service.
My hon. Friend the Member for Crawley said that he would be sending a copy of his report to his local CCG, and I would echo his call for MPs from England who are in the debate today to do the same. MP and CCG relationships are very important to implementing the cancer strategy and reports such as this one. I have the mobile numbers of my local CCG lead and CCG chair in my phone, and I did long before I was a Minister. How many other Members, not only in this Chamber, but in the House, have that? It is a key relationship and Members have a role to play.
The hon. Member for Coventry North East (Colleen Fletcher) spoke very well, as always, with her personal testimony. She calls for five-year plans for patients who have had a stem cell transplant. As I said, the recovery package is a personalised care plan for all cancer patients, and if the care team feel that a five-year plan is appropriate, I expect it to be considered and, if appropriate, commissioned.
The hon. Member for Strangford (Jim Shannon), who has left his place, spoke, as always, in an informed contribution full of personal testimony. I will say that cancer survival rates in England have never been higher. If we can help his colleagues in the Northern Ireland Assembly, when that is back on its feet, I would be delighted. If he wants to set up a meeting, I would be delighted to attend.
I need to close because I know, Mr Wilson, that you want to move on to the proposer of the debate. I hope that my hon. Friend will agree that implementation of the strategy is already beginning to transform services and to implement a number of the recommendations in his report, which is an excellent piece of work. Next week I will be meeting Bloodwise, which I know has representatives here today and does excellent work with his all-party group, to discuss further the important issues that Members have raised today. Next month I will be having the second of my big cancer roundtables, which this time will be joined by Cally Palmer, who is NHS England’s national cancer director. That is a great chance for me to bring all the cancer charities together.
I thank my hon. Friend for bringing the report to Westminster Hall today and wish him well with its launch in a few minutes’ time.
This is obviously a very emotional issue for many people, and I pay tribute to the courage of patients and their families. Those who have lost loved ones through blood cancer leave a fine legacy in ensuring that we fight—I join the Minister in using that word deliberately—blood cancer, so that we can ultimately find cures and better treatments. Finally, I am grateful to the Minister for his thoughtful reply, his work on cancer issues in the Department of Health and his fine legacy of work in the past.
Motion lapsed (Standing Order No. 10(6)).
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