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House of Commons Hansard
24 January 2017
Volume 620

    Motion made, and Question proposed, That this House do now adjourn.—(Chris Heaton-Harris.)

  • It is a pleasure to rise at 6.33 pm. When I secured an Adjournment debate several years ago, I expected it to start at 7 o’clock, but I seem to recall that I got up to speak at 11.15 pm. Those were the days when we could debate European documents until any hour.

  • History could well repeat itself.

  • I hope that it will not do so tonight, Mr Deputy Speaker.

    I declare an interest as co-chair of the all-party group on stem cell transplantation. I am very pleased to see my co-chair, the hon. Member for Enfield, Southgate (Mr Burrowes), in the Chamber; I am sure he will make some comments later. May I also put it on record that my oldest son received a life-saving stem cell transplant a number of years ago?

    A stem cell transplant offers a last chance of life to people with a blood cancer or blood disorder. It works because stem cells have an incredible ability to replace damaged blood cells. This remarkable treatment has great potential in our healthcare system. There are different types of stem cell transplant. Some involve people taking back their own cells, while others involve cells from a donor, who can be a relative. Tonight I will talk about stem cell transplants that come from a donor.

    About 2,000 people in the UK need such a transplant each year. Two thirds of them will not find a matching donor in their family and will therefore require an unrelated donor. In that regard, I pay tribute to Anthony Nolan, which provides patients with matching donors from its stem cell donor register. As well as sourcing transplants, it supports patients and, importantly, their families through the transplant journey and advocates on their behalf. Last year, Anthony Nolan helped to find a match for more than 1,200 people with a blood cancer or blood disorder. I know that the House will join me in thanking the selfless stem cell donors who made that possible, and all those who have joined the stem cell donor register and might donate in the future, of whom there are more than 600,000.

    Sadly, one in eight people does not receive the life-saving transplant they need because there is no donor available or a donor cannot be found quickly enough. The odds drop dramatically for patients from a black, Asian or ethnic minority background. Anthony Nolan is working hard not only to build but to diversify its stem cell donor register to ensure that it is able to provide people with the best match. After a lot of work, the situation is much better than it was a number of years ago, but it is still shocking that the chance of finding a donor is so much slimmer for people from a BAME background than for white people. I am sure that the Minister will show her support for efforts in that area.

    Despite the fact that stem cell transplants are a well-established treatment, the huge financial pressures on the NHS are causing problems for patients. The situation is most serious for those who need a second stem cell transplant. Sometimes, after having a first transplant, a patient’s blood cancer or blood disorder will come back or relapse. That is devastating news in itself. For about 20 patients a year, the clinician will recommend a second stem cell transplant as their best, and often only, chance of life.

    It is worth emphasising that this is not some unknown, experimental treatment that people are simply taking a punt on. We know that one in three patients who receives a second stem cell transplant will reach the milestone of five-year survival, and the results for children are even better, as seven in 10 will reach that milestone. We know that the medical profession recommends the treatment, which is routinely available in other parts of the UK, as well as in countries across Europe and the United States. We also know that the treatment used to be available in England before 2013 and that many people are alive today, leading active lives with their families, because they received a second stem cell transplant.

  • I thank the hon. Gentleman for raising this important issue. In my time as a nurse, I have looked after patients who have had a stem cell transplant. My haematology colleagues would agree with his statement that between 20% and 40% of patients who have a second stem cell transplant can be cured. The treatment is indeed offered in many parts of Europe and in the US, so it is shameful that it is not offered here.

  • I totally agree with the hon. Lady. We are talking about a very small number of people but, for them, it is their only chance after they relapse.

    Despite everything we know, NHS England confirmed in December 2016 that it would not routinely fund second stem cell transplants. In effect, it decided that these people’s lives were not worth the money.

    One of those people is Sasha Jones, a 34-year-old mother of two from Greenwich, who, in March 2015, was given the devastating news that she had acute myeloid leukaemia, a type of blood cancer. Over the next few months, she had rounds of chemotherapy and her first stem cell transplant. It was not without its difficulties, but by the beginning of October 2015, she was well enough to go home to her husband, Lloyd, and their two young children, aged just 13 and eight at the time. In August 2016, she was told that the blood cancer had come back, but by this time NHS England had decided that it would not routinely commission second transplants for patients in Sasha’s situation, despite such treatment being recommended by her doctor.

    Doctors tried to get Sasha a second transplant by going through the individual funding request route, which allows NHS England to fund treatment for patients on an individual basis if they are deemed to be an exceptional case, but what is an exceptional case, how is that decided and, importantly, how long does it take to be considered? It has to be done at a time when the family and patient are dealing with the devastating news that their illness has not been cured but has come back, so they have to cope with that while also going through this process.

    Sasha’s request was turned down and she has effectively been left with no alternative treatment. She now has two choices: find the money to pay for the second transplant herself; or accept that she might have only months to live and that her two young children could be left to grow up without their mother. I think it is fair to say that Sasha and her friends and family are desperate. A petition that they started to call for a reversal of NHS England’s decision not to fund second stem cell transplants now has more than 165,000 signatures, while a fund that was set up to raise the money that Sasha would need to pay for a second transplant currently stands at £90,000, but that is still not enough. Can hon. Members imagine the enormous pressure on Sasha and her family? In Sasha’s own words, she has been “condemned to death”. She says:

    “In having been denied access to a second stem cell transplant, it has been decided that ‘I’m not worthy of a second chance a life; my children do not need a mother, my husband will become a widower’.”

    It is a scandal that someone like Sasha should find herself in this situation—denied life-saving treatment that other patients have had in the past because NHS England says it is neither affordable nor justifiable.

  • I apologise for not being here on the dot for the start of the debate. The hon. Gentleman is outlining the case for second transplants. Does he agree with the analysis from Anthony Nolan that shows that the cost of caring for someone who is refused a transplant is upwards of £130,000, while a transplant would cost only £120,000 and might save a life and prevent devastation being caused to a family? Does he agree that there is a financial as well as a moral incentive?

  • Yes, I do. This is to do with how we assess the cost of treatment. I fully accept that the up-front cost of the transplant is a lot of money, but if that works, the longer-term cost is not so great. However, we seem willing and able to fund drugs that might not cure people or extend their lives by very much, although the cost of them, when added up, might be more than the transplant. It is not right that we are saying to these people, “No, we’re not going to fund a second transplant”.

    Sasha’s case is not unique, and there will be many more like hers if we do not change our position. Will the Minister please respond directly regarding Sasha’s case and those of others in the same situation? In the months and years ahead, there will be other people in this situation, and their voices need to be heard.

  • I declare an interest in that my husband had a successful stem cell transplant in 2014. Does my hon. Friend agree that for patients with blood cancer, the fear of relapse causes great anxiety? Patients speak of a common feeling of dread when they go to collect routine blood results—that certainly resonates with me. Following NHS England’s decision, the thousands of patients who have received a first stem cell transplant now have the added fear that if the worst happens and they relapse, the NHS will not provide them with the treatment that would save their lives. I hope my hon. Friend and the Minister will acknowledge that this decision affects not only the 20 desperately ill patients a year who need a second transplant to survive, but the many thousands who live in fear of relapse every day.

  • I certainly agree with my hon. Friend. From personal experience, I know that that is always a fear. Every time someone goes for a check-up on their blood, there is obviously a feeling at the back of their mind, “Let’s hope that everything’s okay.” It is a very rocky road.

    I am sure that the whole House will wish Sasha well as she continues her journey. I pay tribute to my hon. Friend the Member for Erith and Thamesmead (Teresa Pearce), who has been working tirelessly to support Sasha and her family at this incredibly difficult time.

    The Department of Health must accept responsibility in this case and others. Over the past few weeks, we have been told about the enormous pressures that the NHS is under during this winter crisis, with hospitals on black alert across the country, A&E waiting times being missed and cancer patients having their operations cancelled. Treatments such as second stem cell transplants are being rationed. I accept that the NHS is underfunded—perhaps it always will be, as I accept that it is always possible to spend more money—but we are now reaching a crisis. We really need to start to be honest and address issues such as social care. Until we do that and we are honest with everyone, we will not sort out the funding situation for the NHS. I am not making political points; I just want to say that we need to stand up for patients such as Sasha whose lives—it really is their lives—are at risk.

    When NHS England originally announced its decision not to fund second stem cell transplants in July 2016, it caused outrage among patients and their families. More than 6,500 people wrote to their MPs and 18,000 signed a letter to the Secretary of State for Health in a bid to get the decision changed. In addition, 30 leading clinicians wrote to the editor of The Times saying:

    “NHS England is ignoring the advice of the clinical community, thereby effectively handing most of these patients a death sentence”.

    They were all ignored. As we know, NHS England confirmed its decision in December 2016.

    On a positive note, the good news is that there is a chance to make things right. NHS England will look again at what it funds in the spring. I therefore urge the Minister and her Department to intervene to ensure that every patient who needs a second transplant can access one. As I said, we are not talking about huge numbers, but for the small number of people who are affected, this is their only chance.

    I do not wish to pre-empt the Minister’s remarks, but I suspect that she may highlight that this was a decision taken by NHS England, not the Government. However, the Department of Health is ultimately responsible for the treatment that patients receive, and in the case of second stem cell transplants, access to that treatment has been denied.

    I want to make three important points. First, as I have explained, second stem cell transplants are supported by the evidence. The treatment is standard practice in many countries, yet NHS England seems to have ignored that completely. It has also ignored the potential to offset much of the cost of a second stem cell transplant, as was pointed out earlier, owing to the cost of alternative treatments.

    In its own impact assessment, NHS England acknowledged that the mortality rate among patients who were given alternative treatments “was extremely high”, and that, while the costs of such treatments were always “difficult to quantify” and varied according to patients’ circumstances, there was “considerable scope” to offset some of the costs of transplants if the costs incurred over a patient’s lifetime were taken into account. Moreover, a patient who had had a successful transplant was far more likely to return to, or join, the workforce, and pay back some of the costs. It is important to factor that in.

    Secondly, NHS England has not been remotely transparent in its decision making. All it has said is that second stem cell transplants are

    “not currently affordable and will not be routinely commissioned at this time”.

    That tells us nothing about how NHS England reached its decision. Neither the minutes of the Clinical Priorities Advisory Group nor those of the Specialised Services Commissioning Committee are publicly available. The Government agreed with the Public Accounts Committee when it said that NHS England’s decision making in relation to specialised services should be far more transparent. Will the Minister please ensure that the minutes of those two groups are published on NHS England’s website in future?

    Thirdly, the way in which NHS England’s decision has been communicated to patients has been shocking. It consists of a single bullet point retrospectively added to the bottom of a press release under the heading “Further information”. Does the Minister agree that that is unacceptable, and that far more needs to be done to ensure that decisions that could cost patients their lives are shared in a sensitive and caring manner, rather than merely being added as some sort of footnote?

    With all that in mind, let me now ask the Minster the most important question. Does she accept that her Department must do more to hold NHS England to account, and will she agree to take steps to ensure that every patient who needs a second stem cell transplant has access to one?

    I suspect that the Minister may say that, despite NHS England’s decision not to routinely commission second stem cell transplants, patients will be able to access the potentially life-saving treatment that they need by taking the individual funding request route. However, patients and their doctors know that, in reality, the chances of success through that route are very slim indeed. In November 2016, the all-party parliamentary group on stem cell transplantation had the pleasure of meeting Emma Paine. Emma was diagnosed with a blood disorder called severe aplastic anaemia in 2005. After her first transplant she relapsed, and, as with Sasha, her doctors recommended a second stem cell transplant. They tried to organise that via the individual funding request route, which meant that Emma had to prove that she was an exceptional case.

    Emma was left waiting in the dark for four months, and her doctors had to fight her corner. During that time she was very unwell with infections, and her consultant decided to gamble and start her chemotherapy in preparation for a second stem cell transplant early, fearing that she would die if it did not start then. Although Emma eventually heard from her doctor the good news that the request had been successful, she did not receive her second stem cell transplant until January 2016, some six months after she had relapsed.

    Emma said:

    “I always assumed that if there was one treatment that could save my life, I would be offered it without question, and the biggest barrier to having my second transplant would be to find another donor—not having to fight the NHS to get it funded...I thought, ‘I’m a 28 year old woman, and a panel of people will decide whether I get to live or die’”.

    Does the Minister agree that the individual funding request route will never be successful for all the patients who need a second stem cell transplant, and that even for those for whom it is successful, it is an incredibly tortuous route?

    I close by urging the Minister, and indeed the whole House, to remember the patients caught up in all this—not just those who are waiting for a second stem cell transplant today, but the countless individuals who will be left without the chance of a second stem cell transplant in future, and therefore will be left without their last hope of a cure. I hope that the Minister will not wash her hands of the problem—I am sure she will not—and will instead fully accept that her Department has to play a key role in this, to make sure that action is taken to ensure that every patient who needs a second stem cell transplant can access one. The lives of people like Sasha and Emma depend on it.

  • It is a pleasure to take part in this debate and continue a double act of many years with the hon. Member for Alyn and Deeside (Mark Tami), as well as other hon. Members on both sides of the House who share a deep concern about the great life-saving value that we have spoken about for a number of years in relation to stem cells and stem cell transplantation.

    Ten years ago, I had little or no knowledge about the life-saving treatment available through stem cell transplantation. Now, after a private Member’s Bill and years of co-chairing the all-party group and particularly, and more significantly, meeting individuals and families affected by blood cancers and disorders and learning that stem cell transplantation saves lives, I know that it is important that we make the case, particularly in relation to those facing the awful prospect of not receiving a second transplant that could save their life.

    We are saying this, but the Government know this. The Government know the great value of stem cell transplantation, not least because they have put their money where all of our mouths have been over a number of years. First, that has happened with the source of this transplantation, in relation to cord blood and stem cells. Since 2010 some £20 million of taxpayers’ money has rightly been invested in improving the provision of stem cells, including umbilical cord blood.

    The last debate we had on this issue was held on 15 September 2015, when my hon. Friend the Member for Mid Norfolk (George Freeman), then the Under-Secretary of State for Life Sciences, responded. The debate was about the national stem cell transplantation trials network and many of the Members present today were involved. These were my hon. Friend’s words in that debate:

    “stem cell transplantation is a life-saving treatment that plays a key role in the treatment of leukaemia and some other diseases.”—[Official Report, 15 September 2015; Vol. 599, c. 1022.]

    That is the basis of our plea to the Minister and NHS England today, as a result of what we have all come to know over the years from real-life examples—some family members are here today. We recognise, and have been very pleased, that the Government have responded to our urging and have been investing in cord blood collections, and have wanted to ensure they join with us in terms of the ambition for a national stem cell transplantation trials network.

    The Minister back in September 2015 also talked about the great partnership work that we have recognised today involving the Anthony Nolan charity and NHS Blood and Transplant, and how the Government had worked very hard in supporting and directly funding a unified registry, and how the trials acceleration programme had provided additional quality research that helped provide the outcomes we are talking about today for transplantation and saving lives.

    There has been good progress. There were four new blood and transplant units back in 2015 and, as the hon. Member for Alyn and Deeside has said, there has been a recognition of the shortage particularly in relation to black, Asian and minority ethnic groups—and it was noted in 2015 that, because of the targeted recruitment, there had been an improvement in their life chances, with the rate going up from 40% to 60%. The residue now from the cord blood bank—there were some 12,000 or so samples back in 2015, and that has no doubt increased —has enabled there to be much greater opportunities for providing quicker and easier transplantation. And that is what it is all about. That context is important to the focus of this debate, which is about the prospects for those needing a second transplant. We are talking about the small number of people who relapse, some 16 to 20 a year—

  • Motion lapsed (Standing Order No. 9(3)).

    Motion made, and Question proposed, That this House do now adjourn.—(Chris Heaton-Harris.)

  • We are talking about the 16 to 20 people a year for whom the clinical recommendation is that they have a second transplant. NHS England made a decision on this in December 2016. We have talked about percentages for black and minority ethnic groups, and the case has rightly been made that it is a scandal that people from other backgrounds are more able to get a match. It is also a scandal that, for the people who have been told of the awful decision that they will not get a second transplant, it is not a question of their having a 60% or 40% chance, because they will have no chance at all.

  • I am sure that, like me, the hon. Gentleman finds it hard to think of any other recurring illness for which people who had relapsed would be told, “I’m sorry, you’ve had your one chance. That’s it.”

  • The point I am trying to make is that everyone has been on a journey of discovery and understanding in relation to the development of the life-saving potential of stem cell transplants. This is all part of a partnership involving collection, more effective transportation, research and clinical networks. We all recognise that, in this complex world, there is a risk of relapse, so the journey of treatment is a continuing one. Once someone is having treatment, they are part of that journey, and the hon. Gentleman is right to say that they should not simply be cut off and told that they have had their go.

    We know of many other patients with a chronic illness who go back to their doctor or to hospital because they have had a relapse. We have to recognise that that happens in this field, where we are getting better quality outcomes. There is still an issue of resistance, however, which needs extra research and clinical expertise. When a clinician says that a transplant is the only option available to that small number of patients, and when we are investing so much in ensuring that there is greater access nationally to treatments for blood disorders and blood cancers, it makes no sense to cut those people off and give them no further opportunity for treatment.

  • I am listening to my hon. Friend’s powerful argument. I do not know of any other illness in which, if a patient would have a 30% chance of a cure if they had a second transplant but otherwise had no chance, they would be denied that treatment.

  • Indeed, that 30% chance is taken away from those people. The chance of recovery is even greater for children, but that chance is taken away from them as well. We are getting into the issue of the exceptionality of circumstances here, but children are losing out too. These decisions seem to be made regardless of whether someone has a better chance of a cure. Routine commissioning has gone, but we are also finding that the treatment is being refused even in relation to individual funding requests. I will say more about that in a moment. People need not take our word for this—we are not the experts—because 30 clinicians wrote to The Times to make the point that these decisions were effectively passing a death sentence on the individuals involved.

    We have heard about the desperate situation facing Sasha, but there are other individuals who will perhaps be able to overcome these obstacles. One who is more fortunate than most is Emily. She was studying when she was first diagnosed with leukaemia at the age of 21. She had a transplant from an unrelated donor in February 2014, but she discovered in December 2015 that she had relapsed, as can often happen. She was told that she would die without a second transplant, so she applied via an individual funding request, which was turned down by NHS England. The situation was the same for Sasha and others. Emily’s consultant felt strongly that she had a good chance of survival and, despite the financial risk, the hospital paid for the transplant itself. She had her second transplant in March 2016. She was very fortunate.

    Sadly, because of the decisions that have been made since December, the edict now is that routine commissioning has gone. No risks will be taken by any hospital. Even though crowdfunding initiatives are trying to raise the money for Sasha and others, they will not be in such a fortunate position as Emily, who says:

    “I am so grateful I have doctors who will fight my corner and who refused to give up on me. But it shouldn’t be the case that they have to find loopholes and face an uphill struggle to push this lifesaving treatment through. How many others wouldn’t be so lucky?”

    Frankly, after the decision in December, hardly anyone will be so lucky now.

    I appreciated and recognise that NHS England has difficult choices and decisions to make in prioritising specialist services, and they have to be based on evidence. We are pleading with NHS England to look at the evidence in this particular case. Treatment must be prioritised in cases where the alternative presents significantly lower survival rates.

    As the hon. Member for Strangford (Jim Shannon) said, it is an issue of cost. We need to look at the value and cost-effectiveness of such treatment. Second stem cell transplants are well established and are potentially curative treatments, as evidenced by the survival rates. The treatment is recommended by leading clinicians. The alternatives have to be carefully considered but, without such treatments, the mortality rates and the costs can be considerable.

    After the original decision was made in July 2016, patients were effectively dependent on making individual funding requests. We have to ask whether that is the way out, whether it is the safety net. Frankly, it is not. Although it says on the tin that people can make the case for there being exceptional circumstances, and we might think it sounds pretty exceptional if, say, someone is facing death and there is no alternative—whether they are a child or an adult—such requests are highly bureaucratic and highly stressful. Sadly, the APPG has seen evidence that people are being pretty much routinely refused.

    We are talking about small numbers of people. There is a lack of transparency, and the responses to IFRs do not give full reasons for refusing exceptionality. They appear to be refusals based on policy, rather than discretion based on the available evidence. I implore the Minister to look at the need for transparency on such decisions, which sadly at the moment only add to the anguish and distress of these very vulnerable patients.

    For patients with a blood disorder, the fear of relapse is real—relapse is a real and present danger. The decision not to fund second transplants means that, from their first transplant, patients now fear they may relapse and not be able to access a second transplant, which is part of their treatment cycle. The situation is desperate: a death sentence is essentially hanging over them when they should be able to look to a more positive future. We need to be there alongside those patients in the long term, to the end, whatever happens, to ensure that they have the best alternatives.

    The impact assessments need to look at the situation properly, and the offsetting of costs must include not only the specific treatment cycle but the overall treatment costs and the cost of not funding this treatment, including the cost of palliative care. In recognising the NHS’s degree of independence, I hope the Minister will use her good offices to ensure that it recognises that all steps need to be taken in conducting a full cost-benefit analysis of second transplants so that, when we revisit the decision in the spring, we will not be back in this situation; otherwise, we will be back here again to make the case and to say that it is not acceptable. A full understanding of the benefits of second transplantation is essential, so that those 16 to 20 patients a year can receive what all clinicians say they need. Their lives should not be lost.

  • 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.

  • 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?

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • House adjourned.