NHS Blood Cancer Care

Philippa Whitford Excerpts

Wednesday 17th January 2018 Westminster Hall

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Wilson. I, too, commend the hon. Member for Crawley (Henry Smith) on securing this debate.

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.

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[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

It is a pleasure to serve under your chairmanship, Mr Wilson—I believe it is the first time that we have danced in such a way. I congratulate my hon. Friend the Member for Crawley (Henry Smith) on securing this debate on an issue that I know he feels passionately about, and I commend him for his work chairing the all-party group. We all come to the House with our motivations and experiences, and we all gather more experiences in the House. One reason why this is the job that I always wanted to do in government is because I have fought many types of cancer in many different ways, and lost more than I have won. It is always moving to hear Members speak personally about their experiences and why they have promoted certain issues in their parliamentary career, and I thought my hon. Friend did that brilliantly. Such experiences make us the MPs that we are, and I hope only that the figures for the people watching this Westminster Hall debate match those for people watching daytime television shows instead, because I think they would have a great view of the way that Parliament operates.

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.

[Dr Whitford]

While we are obviously talking in particular about the chronic types of blood cancer, there are also solid tumours. Indeed, hormone positive breast cancer is actually much more of a chronic disease. It carries the same risk into the future and people may be living with it for decades. We have to get round that curve of seeing cancer as something that is dealt with acutely and then is over. There will be many cancers that we control, and we therefore need to help people to accept them as a chronic disease and not torture themselves with the C-word.

[Steve Brine]

What a good point. I love the term “survivorship”, which we often hear. It is probably an Americanism, but it is one of ours now. It is a great term because it suggests a positive: we have survived and we will continue to survive and to fight. My officials do not like me using the term “to fight cancer”, but I do think that it is a battle, and a constant battle. Macmillan’s brilliantly moving PR campaign at the end of last year talked about life with cancer. There are lots of people living with chronic conditions. When I visit cancer patients, as I did on Friday in Southampton, I always make a point of asking them what they do when they are not in the cancer ward and what they are planning to do when they finish being in the cancer ward, because their lives are more than their cancer, and they are not their cancer.

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.

[Dr Whitford]

Will the Minister explain how that interacts with the budget impact assessment that allows drugs to be delayed by up to three years, even if they have been passed by NICE, if the overall cost of them might be more than £20 million? There are many concerns among groups that that might actually delay innovative drugs, which often tend to be expensive.