The Parliamentary Under-Secretary of State for Health (Nicola Blackwood)
I congratulate the hon. Member for Alyn and Deeside (Mark Tami) on securing this important debate and on his moving contribution. I also thank his co-chair, my hon. Friend the Member for Enfield, Southgate (Mr Burrowes), for his contribution, which was characteristically informed. I join them in thanking the all-party parliamentary group on stem cell transplantation and the Anthony Nolan trust for all their hard work and advocacy in this field on behalf of patients and their families. I particularly want to thank all those who have allowed their personal stories to be shared in the Chamber tonight. They are a powerful reminder of why we are all here. Their importance cannot be overstated.
As the hon. Gentleman said, stem cell transplants promise a life-saving cure for many patients, but the key is finding a suitable matching donor. While many patients are able to find suitably matched family members, for more than 1,000 patients a year, that is not possible and they have to rely on the generosity of others. I am sure that the whole House will want to join the hon. Gentleman in paying tribute to the more than 800 people in the UK this year who donated their stem cells.
I will go on to speak about improving patient care and the importance of research, as my hon. Friend mentioned, but both my colleagues raised commissioning as a particular concern, so I shall start there.
Over the past few months, there have been particular concerns raised regarding the commissioning by the NHS of second stem cell transplants for patients with relapsed disease. I recently had the chance to visit Anthony Nolan’s research labs at the Royal Free, where I was introduced to Emma Paine. Emma is alive today, as the hon. Gentleman said, thanks to a second stem cell transplant. She looks extraordinarily well and she is a powerful advocate for the cause. She spoke to me with extraordinary eloquence about the difficulties of the commissioning process, so I am in no doubt about the importance of the issue.
Decisions regarding prioritising specialised commissioning are always going to be difficult, which is why I believe that they are rightly a clinically led operational matter for NHS England, as the hon. Gentleman anticipated I would say. Knowing that I was coming here tonight, I asked for an update from NHS England. Contrary to some reporting on the issue, NHS England has not withdrawn the provision of second transplants. Second transplants have been, and remain, routinely commissioned for patients where the grafting process has failed, but NHS England has recently reviewed a proposal, alongside all the other priorities that were put forward, to begin routinely commissioning second transplants for patients with relapsed disease, for the first time since it was established in 2013. That would have replaced the current case-by-case provision of those transplants.
To prioritise funding for specialised services, as colleagues will know, NHS England has an established mechanism to evaluate proposals for new areas of investment. This reviews proposals on the basis of their clinical benefit and cost, as colleagues have discussed. The clinical benefit is based on the latest published clinical evidence.
As the hon. Gentleman said, that proposal was not approved. NHS England explained to me that its decision not to recommend routine commissioning of second transplants was based on the associated cost of the treatment, which the hon. Member for Strangford (Jim Shannon) mentioned, and the clinical evidence that suggests that less than one third of patients with relapsed disease survive more than five years after the second transplant. However, as I think colleagues mentioned, there is also evidence to suggest that, in that area, clinical practice is ahead of published evidence. For that reason, work is ongoing to ensure that the evidence base is updated before the decision is next reviewed.
Prioritisation decisions are kept under review in the light of new evidence and NHS England tells me that proposals for second transplants will be reviewed again later this year. Until the completion of any review, as the hon. Member for Alyn and Deeside said, clinicians can continue to apply for funding for second transplants for relapsed disease where NHS England assesses that the patient is clinically exceptional or has a clinically critical need, although I accept what colleagues have said about how difficult that process can be.
I shall certainly put to my colleague, the Minister of State, Department of Health, the point raised by the hon. Member for Alyn and Deeside about the transparency of decision making and the sensitivity in communicating that decision. I shall ask that my hon. Friend take it up with NHS England.
Mark Tami
Does the Minister accept that, for a whole host of illnesses, we fund, probably rightly so, drugs that may cost vast sums for people for whom the prognosis is that their lives might be extended by weeks, whereas we are now discussing not only extending people’s lives for years but potentially enabling them to live a full life over which they could pay back some of the cost of the treatment?
Nicola Blackwood
As a politician, I do not feel I am qualified to make the judgment about the different clinical priorities, which is exactly why that decision is supposed to be made by clinicians. We are, though, hearing that there is a difference between the published evidence that is going forward to the board for decision making and that at the coalface. That is what needs to be rectified before the decision is made. We are working hard to try to ensure that that happens so that patients such as Sasha, Emily and others have the best possible chance.
It is precisely because of the extreme stress and the fear of relapse that the hon. Member for Coventry North East (Colleen Fletcher) identified—the hon. Gentleman agreed with her—that in the meantime we are trying to focus our efforts on improving patient care and driving forward research, so that we can improve the outcomes of first stem cell transplants and explore all possible treatments and therapies for these very hard-to-treat conditions. That is why the Department of Health has not washed its hands of stem cell treatments. We have provided more than £19 million to our delivery partners, NHS Blood and Transplant and Anthony Nolan, since 2010, and a further £2.5 million this year.
Support from the Department is shaped by expert advice from the clinical community and has led to a number of tangible improvements that mean that patients are now significantly more likely to find a matched donor. Better matching of donor and recipient means that the stem cell transplants are much more likely to work the first time, which is a better outcome for the patient anyway. We have also supported the creation of a unified donor registry, which, combined with advances in tissue-typing, means that the time taken to identify a suitable donor has been significantly reduced. As many colleagues have said, patients in need of a stem cell transplant are often very ill and do not have time to waste, so that progress is very important.
Despite significant improvements in the chances of finding a suitable donor, there remains a global shortage of donors for patients from minority groups, which is unacceptable. That is why we are continuing to support the expansion of the cord stem cell bank. Stem cells from umbilical cords tolerate minor mismatches in tissue type, so are disproportionately used to treat patients from minority groups, for whom finding an exactly matched donor may be impossible. We are trying to combine that with the targeted recruitment of adult donors from under-represented communities. The chances of patients from minority groups continue to improve, but we recognise that there is still more to be done and are working closely with charities and hospitals to try to ensure that that happens.
Recent high-profile donor search campaigns, such as Match4Lara, have done a lot to help to raise awareness of the particular challenges that some patients face in finding a donor. Through that and other campaigns, Anthony Nolan has demonstrated the value of using social media to reach young people in all sections of the community. Overall, it is estimated that investment by the Department and the work of delivery partners such as Anthony Nolan means that, compared with 2010, more than 130 additional lives are being saved each year. We are making progress, but there is no complacency, and we recognise that more needs to be done.
Mr Burrowes
I am the first to congratulate the Government on making that investment, and on that commitment and partnership work. Nevertheless, is there not a mismatch? The investment commitment to collections at source is no doubt meant to ensure that there are outcomes in relation to transplantation. Our issue is that it seems that, at the end of the day, when a patient gets to the second transplant, which is sadly part of the complicated life-cycle for them, we seem to be just pulling the rug from under them.
Nicola Blackwood
My hon. Friend will have heard my answer on that. We are trying to address that as we go through the commissioning process by ensuring that the best possible evidence is there and that it is the most up-to-date clinical evidence, so that, through what has to be a robust prioritisation process, the second stem cell transplantation for relapse has the best possible chance. I also think that it is important that we address the other areas of stem cell transplantation to ensure that patients have the most improved outcomes at, for example, first transplant level, so that the research is available to feed through into that prioritisation process, and also so that patients have the best possible experience going through the process.
Finding a suitable donor is only the start of a long recovery process for patients, as Emma said very clearly to me. The report from the independent Cancer Taskforce, with which hon. Members are familiar, identified a number of ways in which people living with and beyond cancer could and should be better supported. In the case of patients receiving stem cell transplants, NHS England has set out the pathway in its service specifications. It is widely recognised that patients receiving a stem cell transplant often experience severe psychological and emotional stress. The aggressive nature of the treatment and the need for prolonged hospital stays mean that the psychological impact on patients can be particularly severe.
Transplant centres recognise that the long-term management of these effects is an important aspect of the transplantation process. It is important that we stay by those patients for the long term, as has been mentioned. There is also an urgent need to improve the clinical outcomes of stem cell transplants and to track those outcomes so that we have the evidence to present. The planned impact project is an important aspect in addressing the development of the best possible clinical practice. This network, supported by the charities, Anthony Nolan and Leuka, will complement the existing National Institute for Health Research clinical trials network. It aims to recruit 20% of stem transplantation patients into clinical trials. We believe that it is only through further research supported by clinical trials that the survival rates for these transplants can be improved.
During my recent visit to the Anthony Nolan laboratories, I was particularly impressed to see that they are involved in applying the latest genomics technology to improve the matching of donors and recipients. It is a clear example of how we are directly improving care and access through our research and through the 100,000 Genomes Project.
Mark Tami
I thank the Minister for giving way; she is being very generous. She has touched on a key point there, and it is something that I have raised with her before. We are rightly prepared to spend a large sum of money on treatment to give people the transplant they need. As she says, it is a very difficult process for the patient. Afterwards, there is virtually no support for that patient and for their mental health. They may have a lot of questions and a host of issues—a child, for example, may want to know why it has happened to them and why they look different—yet they really have to search for support. The support should be part and parcel of the whole package, rather than something that is applied as some sort of add-on.
Nicola Blackwood
The hon. Gentleman is absolutely right. It is very important that we look at the whole child as well as the psychological impacts of long-term illness—whether it is a cancer or any other kind of long-term illness. He will know that we are developing a Green Paper for children’s mental health, and I do intend, and hope, to be addressing the ways in which we can look at not only the broad spectrum of children’s mental health, but those who have particular challenges that they need to overcome. He has raised the matter with me before. I gave him a commitment that I would follow through on it, and I reassert that commitment tonight.
The way in which we are working on this, which is to build up the research to improve patient care and to ensure that we are allowing the NHS to deliver world-leading therapies based on genetic information, is essential to ensuring that every patient receives the appropriate treatment. That is what colleagues say they want to happen. It also highlights the importance of having the right infrastructure in place throughout the NHS, because if we do not have that, we will not be able to provide the best support.
That is why we announced in September an £816 million investment for biomedical research centres over the next five years. We also specifically support translational research into stem cell transplantation through the stem cell and immunotherapy research unit—one of four NIHR blood and transplant research units, each of which is a partnership between a university and NHSBT. The stem cell unit at University College London is involved in the development of new and potentially transformative forms of treatment involving immuno- therapies. Such therapies are perhaps the most exciting and promising area of cancer therapy and may eventually entirely replace the need for stem cell transplantation. I appreciate, however, that those advances cannot come soon enough for the patients mentioned tonight.
As ground-breaking as our research efforts undoubtedly are and as necessary as they are for the long term, we must always remember that research is not an end in itself. Ultimately, we are all working to deliver better, more targeted patient outcomes that offer hope to the thousands of people living with an incurable condition. In doing so, we must ensure that we are helping to improve the lives of those patients and their families while we work to transform NHS care for generations to come. That is what we are working to deliver. I hope that the hon. Member for Alyn and Deeside and my hon. Friend the Member for Enfield, Southgate will work with me as we try to do that.
Question put and agreed to.