Stem Cell Transplants

David Burrowes Excerpts

Tuesday 24th January 2017 Commons Chamber

[Mr David Burrowes (Enfield, Southgate) (Con)]

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—

--- Later in debate ---

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

[Mr Burrowes]

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.

[Mark Tami]

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.”

[Mr Burrowes]

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.

[Maria Caulfield]

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.

[Mr Burrowes]

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.

--- Later in debate ---

[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.

North Middlesex University Hospital NHS Trust

David Burrowes Excerpts

Tuesday 12th July 2016 Westminster Hall

[Mr David Burrowes (Enfield, Southgate) (Con)]

It is a pleasure to take part in this debate, which is vital for my constituents and for all those around Enfield and Haringey. I pay tribute to the right hon. Member for Enfield North (Joan Ryan) for securing it and for presenting a comprehensive case for the need for urgent action and reassurance for our constituents about the sustainable future of North Middlesex hospital. She has tempted me on to a political path: plainly this is a cross-party concern and call for action, but mention was made of the outgoing Prime Minister. I remember reminding a previous outgoing Prime Minister, Mr Blair, at his last Prime Minister’s questions—those are now coming up for the current Prime Minister—that he had said that there were

“24 hours to save the NHS”,

but that his Government had decided to downgrade Chase Farm hospital. There is a lot of history to this, but I will avoid, if I can, being tempted down that route.

I believe that, because of the Government’s investment, Chase Farm and the Royal Free hospitals have a secure future that is not shackled by the private finance initiative deals that have severely affected Barnet and North Middlesex hospitals. In terms of resources, they are paying a big mortgage, and in relation to finances they have been chasing their tail. Sadly, A&E has been part of that tail. In April, the hospital was whacked with a £320,000 financial penalty, which made a significant dent in its finances and contributed significantly to the £8.3 million deficit with which it is struggling to deal.

The issue is with the A&E. I want reassurances from the Government that someone will take responsibility and action will be taken. Many of us have been expressing concern about local A&E provision for far too long. The concern is that responsibility has not been taken and there has been no proper action. In short, how bad does it have to get before someone takes responsibility and action is taken?

Like the right hon. Member for Enfield North, I pay tribute to staff. We all do. There are obviously great, dedicated staff. Many of us will know them—they are friends and people we know locally. They are as concerned about what is happening as anyone else. Later in my speech, I will say a little more about my experience as a patient in the A&E department two years ago. I saw things for myself, and there are regular reports. The Care Quality Commission made particular reference to the “caring and compassionate” work and service of staff. The current situation is letting them down.

Health Education England and the General Medical Council said that, as much as there was a duty of care to patients, there was a duty of care to doctors training at the hospital, which was why there was such profound, extraordinary, exceptional concern that they reached the point of threatening to pull doctors out. We know that that threat will not be realised, that a corner has been turned and action taken, but why did it take this long for such urgent, expensive crisis management to take place? There were earlier warning signals, so why was there no proper plan?

It is all very well having a new programme calling for “safer, faster, better” services, but for goodness’ sake our constituents expect a safer, faster, better service without a new programme having to be put together, no doubt in glossy print and at considerable expense. They expect a basic service, not a new programme. They have been expecting that for far too long and have been let down.

The 10-year context is important. Despite some interruptions, we can all testify to that 10-year journey. It is so very frustrating because the context is positive: the journey of the Barnet, Enfield and Haringey clinical strategy since 2005-06. We can have our criticisms and our campaigns, but the context is London’s biggest reorganisation of acute services in more than a decade, which was inevitably going to be a challenge. It inevitably needed a careful plan and serious clinical leadership—not just proper clinical leadership in secondary care and the appropriate number of consultants and middle-grade doctors, but the appropriate primary care. Those of us who were involved in the discussions heard the promises from Sir George Alberti, and the talk about bridging loans and the pump priming of primary care, which was also necessary. Sadly, we are seeing the lack of all those things at the same time.

Nevertheless, North Middlesex hospital has been physically transformed since 2009, when it was mostly old Victorian buildings that were not fit for purpose. Those buildings were demolished and a new £123 million modern hospital took shape. That was incredibly welcome, as was the added investment. Some £80 million of public funds was invested to provide the new facilities in line with the reorganisation in the BEH strategy. The plan was, quite properly, to modernise the older facilities, and the hospital has been visibly transformed. Sadly, though, the service that has been provided to constituents has not matched the modern facilities from which they are now able to benefit.

North Middlesex has become one of the busiest A&E departments in the capital, so it is plain that no one can afford it to close. I know the Minister can counter the suggestion that there is any risk of closure, and I am sure he will reassure us that it will not close in any way, that there will be no partial closure and that it will continue, with a long-term, sustainable future. Nevertheless, the concern is why, with all that investment having gone in—initially private finance initiative investment, then direct taxpayer-funded investment—it has taken until this point, so far down the line, for regulators to be able to tell everyone what we all knew far earlier.

I have read the trust’s minutes from 26 May, which state:

“Since the problems first surfaced last year, we have been open with our health partners about the challenges and have worked closely with them to tackle the many interlinked contributory factors, both internally and in the local health care system.”

Well, the problems did not first surface in 2015. I was a patient two years ago and saw for myself that there were problems when I was sitting on a trolley for 11 or 12 hours and was missed by very busy, overstretched staff who were dealing with so many patients. It was an ordinary summer’s day in June—not a winter’s day—and there were more than 400 patients. The staff were absolutely overstretched and missed my CT scan. Lo and behold, my appendix burst. It could have been fatal. That happened because no one was available to take any responsibility for what was happening.

There was real concern about the leadership of staff who were overstretched. I raised the alarm then, as did others. Indeed, the CQC happened to be inspecting the A&E on the very weekend I was sitting on that trolley and seeing for myself the huge challenges it faced. The CQC said that the A&E required improvements. Its report recognised that the hospital was fully embracing the reconfiguration of services, but also said:

“While the hospital had achieved much in absorbing increased numbers of patients, its infrastructure of staffing levels, training provision, complaints handling and governance had been stretched, and there had been an underestimate of the resources needed to maintain services at the current level.”

The warning signals had gone out. Why was prompt action not taken to provide sufficient numbers of consultants and middle-grade doctors?

On Chase Farm hospital, one of the bottom lines for the reconfiguration was the fact that, true to the Prime Minister’s words, we had a moratorium and delayed the previous Government’s plans. All options were looked at, but it came back to the unanimous clinical advice from the local doctors and others, who said that it was in the best interest of the patients for the reconfiguration to take place. Why? They referred particularly to the lack of consultants and middle-grade doctors. That meant that Chase Farm had to be downgraded and A&E patients referred to Barnet and to North Middlesex.

How can it have come to pass that, three years later, we are still hearing the same excuse—that there are not enough consultants or middle-grade doctors? It is completely unacceptable. Why is the system not reacting quicker? Whoever the system is—whether it is the chief executives of the trust or the ever-changing roll-call of interim managers and directors of NHS Improvement, NHS London or NHS England, or, indeed, Ministers themselves—why has it taken so long, with the regulators threatening to pull out doctors, for everyone to pull out their fingers and turn the corner that has now been turned? It is not good enough.

Without my permission—there was a leak—the Daily Mail did a big splash on my experience, and there has been tension ever since about other very serious incidents, some of which have already been mentioned. There was the awful example of someone who had died being left unattended for four hours. There were other shocking and deplorable incidents. Staff themselves see it as something that shames them as well. Managers say to me, “Why hasn’t more action been taken?”

Until July 2015, the A&E department, which is in a very challenging London hospital, was performing relatively well against the standard of seeing and admitting or discharging 95% of patients within four hours. In the first four months of 2015-16, the hospital continued at 94% to 95%. We have to recognise that it has undergone extraordinary growth. Compared with 2013, before the BEH changes were implemented, the hospital now has 25% more staff, cares for 19% more A&E patients, admits 44% more patients, undertakes 44% more surgical operations and procedures, sees 27% more patients in outpatients, and delivers 37% more babies. Yes, all of that is happening.

Of course, performance dipped in other trusts in the country and the downturn continued in January 2016, but when it reached a low of 66%—yes, it recovered slightly to 70%—why were those signals not heeded? How could it get to that level and no urgent action is taken? It was mentioned by hon. Members and others at the time, so why was urgent action not taken? Why was somebody not ready to seize it and say, “We are not going to wait for these regulators, the CQC, to come and tell us down the line that it is inadequate, or for the HEE and GMC to say it is not even safe for doctors, let alone for patients?” Why did it take so long? How bad does it have to get? Why does our health service have to get to this stage for prompt action to be taken?

Many of us could have said that it was not just about secondary care, but about primary care as well. The right hon. Member for Enfield North has made that point already. I referred to the issue of a tale of two health cities within London. Compared with the Camdens and Islingtons of this world, we are very much the poor relations. We are 25% poor. We have had meetings with Ministers about mental health provision, and we have pressed the Minister about the need to ensure fair funding for London. We must get that. We have got this sustainability and transformation plan. It is another siren call. There will be other problems down the line on mental health and other issues affecting our constituents unless the Government and NHS England London ensure that we get fair funding.

The Government have put in a new fair funding formula, but it is taking far too long. We do not need to listen to the Public Accounts Committee to tell us it is taking too long—we can listen to patients, to this debate now and to the regulators. Although in the round our health economy is not all about resources, they have a big impact, particularly in primary care. Why does the health trust have to go through a financial penalty system? Another £130,000 was taken away in April, so more money is taken away from the system when there is a cry for help.

The chief executive, who has gone on leave or has left, made a plea for help over many years. We were all making a plea for help. Why has the NHS not done more about it? It is totally unacceptable for us to be in this position here with this debate. I know from our meetings that the Minister is holding the NHS to the fire now, but why were feet not held to the fire years ago to ensure that people took responsibility? Yes, they could have lost their jobs, but there could have been proper clinical leadership that did not let down our patients in Enfield.

I look forward to the Minister giving us every assurance that there is, as I believe there is, a long-term sustainable future for the A&E at North Middlesex. We cannot afford to lose it and I am sure we will not. The CQC tells us that a corner has been turned, but it was far too long in coming. I want the Minister’s assurance on consultants, although I understand there is a national crisis in getting consultants on the ground, particularly in emergency departments. I want to ensure that the Government will fix it to ensure there is every financial incentive for the right number of consultants and middle-grade doctors to come to Enfield to ensure we have the A&E service that our constituents need and deserve.

--- Later in debate ---

[Mr Lammy]

No, it does not, and that cuts to the critical issue of safety at the hospital. In fact, the problems at the hospital have been going on for well over two years. What happened to the hon. Member for Enfield, Southgate, who lay in the hospital with a burst appendix and who frankly would not be here but for a stroke of luck, says it all. How have we got to the situation where the local Member of Parliament is about to die of a medical emergency after waiting without being seen for 11 hours? He has been friendly—[Interruption.] Well, that is what happens with a burst appendix. The hon. Gentleman is looking well, but he is not that young. People die of a burst appendix if they are not treated.

[Mr Burrowes]

Perhaps it is an issue of profile, but they did not know I was the Member of Parliament. I kept it quiet and was there as an ordinary patient—which is the point. It was only when they found out 11 hours on, following some communication that I was the Member of Parliament, that, lo and behold, the seniors all came down and had a look, and saw what was going on. It was actually my mother who was banging on the desk saying, “Why aren’t you getting a scan for my son?” That is what it takes—it is the ordinary experience of any patient, who, sadly, may not have their mother there to badger the staff for them. That is the patient safety concern.

[Mr Lammy]

The hon. Gentleman took the business of mystery shopping a little far, but his encounter was well reported locally, and at that time alarm bells were being rung. By my recollection it was a good couple of years ago.

The CQC report confirms what we all long feared—that the closure of the emergency department at Chase Farm hospital in December 2013 had a significant impact on demand at North Middlesex hospital. Concerns were also raised about doctors training in anaesthetics, and they were removed from training in the hospital in April 2015, and have never returned to it because the GMC was so concerned. I wrote to the Secretary of State for Health on 22 March—four months ago. I did not get a reply. I am grateful to have seen the Minister eventually, a couple of weeks ago; but he can see why I am concerned when, after failures of the kind we have heard about in the debate, the Secretary of State did not reply to me in March. I will gently say that a hospital where alarm bells are ringing about such issues would have commanded the attention of the Secretary of State in the past, under successive Governments. Certainly MPs and local authority leaders would have been called together and the issue would have been addressed. I raise the matter in the gentlest of ways, because I am concerned about it.

Many issues have been raised and other hon. Members want to contribute; and we want to hear from the shadow Minister, too. The bottom line is that we are very concerned that the hospital has reached the state it has, given the investment that has gone into it. Week after week there are complaints from constituents. Yes, the leadership has now changed. It is important that local governance and the hospital’s relationship with Enfield and the London Borough of Haringey should be retained; but we want to hear from the Minister that such things cannot happen again. It is a question of who is accountable, and when, and of how Members of Parliament could have been heard much more constructively. Given all that happened at Mid Staffordshire, it is a matter of deep concern that although things are clearly not quite at that stage, they could have reached it had leaks not been published in The Guardian and had MPs such as my hon. Friend the Member for Edmonton (Kate Osamor) and my right hon. Friend the Member for Enfield North not rung alarm bells as they have in the past few weeks.

Oral Answers to Questions

David Burrowes Excerpts

Tuesday 5th July 2016 Commons Chamber

[Ben Gummer]

At the risk of repeating what the Secretary of State and I have said previously, we very much welcome the contribution of all EU nationals working in the NHS. It is for the process of the negotiations to establish the precise status of everyone, both EU nationals and British nationals working abroad. That was not my choice at the referendum, but the decision has been made by the British people. I hope that the hon. Lady will take comfort from what the Home Secretary has been clear about: that she hopes to be able to secure a deal so that we can retain EU nationals in this country.

[Mr David Burrowes (Enfield, Southgate) (Con)]

Can the Minister confirm that the challenge to NHS budgets will not compromise in any way the provision of sufficient consultants and middle-grade doctors to not only keep North Middlesex hospital open, but to provide sufficient care to patients and proper quality training to trainee doctors?

[Ben Gummer]

The problems at my hon. Friend’s hospital are a result of management issues and long-running troubles that the hospital has encountered. I hope we will be able to fix them in the short term and provide long-term solutions, which I will be briefing about in the days to come.

Defending Public Services

David Burrowes Excerpts

Monday 23rd May 2016 Commons Chamber

[Mr Hunt]

Let me repeat that we do keep this matter constantly under review. The important thing is that, for the first time, we are charging people who come to the UK on a long-term basis for their use of NHS resources. That is something that did not happen before.

Let me return to the crucial issue of this link between the quality of care and good finances. Why is it that it is so important not to see this as an artificial choice between good care and good finances? Very simply, it is because poor care is about the most expensive thing that a hospital can do. A fall in a hospital will cost the NHS about £1,200, as the patient typically stays for three days longer. A bed sore adds about £2,500 to NHS costs, with a patient staying, on average, 12 days longer. Avoidable mistakes and poor care cost the NHS more than £2 billion a year. We should listen to inspiring leaders such as Dr Gary Kaplan of Virginia Mason hospital in Seattle, which is one of the safest and most efficient hospitals in the world. He said:

“The path to safer care is the same one as the path to lower costs.”

That brings me on to the second way that this Government are fiercely defending our public services, which is our restless determination to raise standards so that people on lower incomes can be confident of the same high quality provision as the wealthiest. To their credit, the last Labour Government succeeded in bringing down NHS waiting times. I hope that that decade is remembered as one when access to NHS services improved. However, because of poor care identified in many hospitals post Mid Staffs, we should surely resolve that this decade must become the one in which we transform the safety and quality of care. Mid Staffs was the lowest point in the history of the NHS, so we must make it a turning point, or a moment that we resolve to offer not just good access to care, but care itself that is the safest and the highest quality available. The record of the past three years shows that we can do just that.

The King’s Fund has given credit to the Government for their focus on safety and quality of care. Patient campaigners have said that the NHS is getting safer and the main indicators of hospital mortality and harm are going in the right direction. However, there is much more to do, so what are our plans? First, we must deliver a seven-day NHS. It should never be the case that mortality rates are higher for people admitted at weekends than for people admitted in the week. Last week’s junior doctor contract agreement was a big step forward, but we also need to reform the consultants’ contracts, improve the availability of weekend diagnostic services and increase the number of weekend consultant-led procedures.

Secondly, a seven-day NHS also means a transformation of out-of-hospital services, especially access to an integrated health and social care system that needs to operate over busy weekends as well as during the week. It also means more GP appointments at convenient times, which is why we want everyone to be able to see a GP in the evening or at weekends. We are backing general practice with a £2.4 billion increase in its budget.

[Mr David Burrowes (Enfield, Southgate) (Con)]

One group of people who particularly need integrated care are those who are addicted, as their life chances are most blighted. They need to be able to make a full recovery. Will the Secretary of State tell us what has been done to support that full recovery? Like me, is he looking forward to hearing the Minister for Culture and the Digital Economy, my hon. Friend the Member for Wantage (Mr Vaizey), conclude the debate, as we will perhaps hear how blighted communities are impacted by high-stakes fixed odds betting terminals? I would like to hear what is being done by the Government on that, as we need to act now to show that we have an all-round approach to improving life chances.

[Mr Hunt]

It is a pleasure to sit on the Treasury Bench with my hon. Friend the Minister for Culture and the Digital Economy for the first time in several years. I will leave him to respond to that point, but I will make a broader point in response to the question from my hon. Friend the Member for Enfield, Southgate (Mr Burrowes) which is that the change we need to make in the NHS is to prevention rather than cure. If we can stop people becoming addicted in the first place, whether to drugs, alcohol or gambling, we will reduce costs for the NHS in the long term. That is the purpose of many of our plans.

Thirdly, a seven-day NHS requires a big improvement in access to 24/7 mental health crisis care, so that whenever a problem arises we are there promptly for some of our most vulnerable people. We will deliver that alongside our broader plans to enable 1 million more people with mental health problems to access support each year by 2020.

Adult Stem Cells and Life Sciences

David Burrowes Excerpts

Tuesday 15th September 2015 Commons Chamber

[Mr David Burrowes (Enfield, Southgate) (Con)]

It is a pleasure to be here, and I welcome the opportunity to speak about this subject. I am pleased that the Under-Secretary of State for Life Sciences is present, because his passion and commitment to issues such as regenerative medicine and life sciences are very real, and go beyond his job.

A decade ago I had no real knowledge of the life-saving treatment that is available through stem cell transplantation, but after being involved in the scrutiny of the Human Fertilisation and Embryology Act, which received Royal Assent on 13 November 2008, I was convinced that, with increased investment in research, the life sciences industry could continue to improve outcomes and save many lives.

The then Government sought to enable the United Kingdom to lead stem cell research and treatment, but their attention was not on adult stem cells. Adult stem cell transplantation already saves the lives of many who are affected by blood cancers and haematological disorders, but it has the potential to do much more, and that is the point of this debate.

Let me put the issue in context. More than 10 years ago, an editorial in Nature Biotechnology admitted:

“forward steps continue to be made in the field of adult stem cell therapy. One estimate is that there are currently over 80 therapies and around 300 clinical trials underway using such cells”.

The latest data from the Commons Library does not go much further than that. Will the Minister tell the House how many therapies and clinical trials are currently underway using adult stem cell transplantation and therapy? I think the answer is that we are not much further on.

--- Later in debate ---

Motion made, and Question proposed, That this House do now adjourn.—(Stephen Barclay.)

[Mr Burrowes]

A fine example of a forward step is the progress made by Professor Geoffrey Raisman, director of the spinal repair unit at University College London institute of neurology, whose work could ultimately lead to the repair of spinal cord injuries in humans.

[Nick Thomas-Symonds (Torfaen) (Lab)]

Does the hon. Gentleman agree that the collecting of data at transplantation centres is very important and so is the sharing of it if we are to make progress? There should be greater emphasis on that, and it should be properly resourced.

[Mr Burrowes]

Absolutely, and I will come on to that. The quality of the data that can be shared is important, and the key ask of the Government is to support the call for a national stem cell transplantation network, which will help in that.

However, Professor Raisman’s pioneering work remains underfunded. He hit the headlines in 2014 when Polish surgeons, in collaboration with scientists in London, enabled Darek Fidyka, a man paralysed from the chest down in a knife attack, to walk again using a frame. Professor Raisman said that the achievement was

“more impressive than man walking on the moon.”

Sir Richard Sykes, chair of the UK Stem Cell Foundation, said:

“To fully develop future treatments that benefit the 3 million paralysed globally will need continued investment for wide scale clinical trials.”

We are trying to get to precisely that clinical basis.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate on what is an important subject. Given that a third of adults and a fifth of children who receive a stem cell transplant do not survive the first year, does he agree that we need better post-care provision, perhaps by establishing a national care pathway for patients for at least five years after transplant?

[Mr Burrowes]

I do, and I want to look at the long-term outcomes.

My co-chair on the all-party group on stem cell transplantation, the hon. Member for Alyn and Deeside (Mark Tami), is present, and our group has been looking at some of the outcomes of research. Last year we joined together with the all-party group on medical research and heard from a number of experts, not least Dr Rob Buckle, director of the UK Regenerative Medicine Platform. He said that the major challenge which remains is translating the basic science into the clinic. He said that we are still at least 10 to 15 years off routine clinical use of stem cells.

[Mark Tami (Alyn and Deeside) (Lab)]

The hon. Gentleman has touched on some of the late effects of transplantation, and the fact that we are getting patients with late effects proves that people are living longer, but we need to put more money into research and into looking at these problems, to ensure that patients live as normal a life as possible.

[Mr Burrowes]

The hon. Gentleman and I have for a number of years been party to reports recommending to Government that we need to invest in research to provide better long-term outcomes in transplantation and future therapeutic treatments.

One key area is Alzheimer’s, and some of us may have received a briefing from the Alzheimer’s Society. We know from our constituencies the huge impact of Alzheimer’s. There are 850,000 people living with dementia in the UK today, and this is forecast to rise to over 1 million by 2025 and to exceed 2 million by 2050. A technique was developed in 2012 to turn adult cells into nerve cells, which again highlights the curative potential of stem cell transplantation. That can be particularly helpful in understanding and testing potential treatments for Alzheimer’s.

The Minister will know that the estimated cost of Alzheimer’s is a staggering £4.3 billion, which is approximately 3.4% of total NHS spending in the UK in 2013. Observing the initial stages of Alzheimer’s in nerve cells can give scientists clues to help them identify genetic risk factors. It can also be used to test potential treatments to see whether the damage from Alzheimer’s can be stopped. We are a long way from that, but it is an illustration of how important it is for us to carry out further research into adult stem cell transplantation. Indeed, it is vital; it makes economic sense and will save lives.

I wish to focus on my involvement with the all-party group on stem cell transplantation and to highlight the potential of cord blood donations to transform our ability to meet the needs of every patient who requires a stem cell transplant, including black, Asian and minority ethnic patients, who have suffered from such poor transplantation outcomes. It is a scandal that, in 2010, just 40% of BAME patients were able to find a well-matched stem cell donor. That figure has increased now to 60%, which is really welcome, and the Government can take plaudits for that. The £4 million that was pledged in 2013 and the total investment of more than £12 million since 2011, along with all the investment from the charitable sector, have made a difference, but we still face a situation in which four in 10 people from the black, Asian and minority ethnic community are unlikely to find a match, which is not good enough. We must do more, and I urge the Minister to support continued and sustained investment as we approach the next spending review.

We need to focus on the outcomes. Of the 6,200 patients who will receive a stem cell donation between now and 2020, one in three will not survive their first year after transplant. Of those who do survive their first year, many will suffer a number of post-transplant complications, including relapse, infection and graft versus host disease.

Since 1993, the collection of stem cells from cord blood and bone marrow has increased at impressive rates, meeting the needs of many patients in the UK. Over the past three years, we have seen progress in a number of areas. Cord banking rates have tripled, a quarter of all cord transplants in the UK are now sourced domestically, and the cost of transplants to the NHS has decreased dramatically. But the urgent need for improvements in long-term outcomes remains. In order to make the necessary progress, the UK needs to ensure that the early-stage advancements are sustainable by investing in long-term research, which is the focus of this debate, identifying improvements to treatments and developing potentially new life-saving therapies. So what needs to be done?

[Fiona Bruce (Congleton) (Con)]

I thank my hon. Friend for securing this debate. He referred to the fact that the potential for about 80 treatments has been discovered through adult stem cell research. Does he agree that it would have been preferable to have put all the resources that have gone into embryonic stem cell research, which has produced negligible results, into the work on adult stem cells?

[Mr Burrowes]

My hon. Friend will know that I was very much making that case in 2008 in the debates that we had on the Human Fertilisation and Embryology Bill. Strong lobbying went on in relation to therapeutic treatments. I remember being in Central Lobby when many charities said that we had to pass that measure to provide immediate treatments. I do not want to get too involved in that debate today, beyond saying that adult stem cell transplantation is saving lives now, and has potential for the future. We need to have a really good mutual circle of which everyone can be part. Such a circle must lend itself to looking at the big ask of the Government today, which is a national stem cell transplantation trials network to ensure that we save more and more lives. We also need to look at future therapies as well.

I urge the Minister, as he steps up to the Dispatch Box, to show his support for a national stem cell transplantation trials network. This will not only provide a turbo boost for improving patient outcomes and make the UK a world leader in stem cell transplantation, but also support the economy by growing the life sciences industry, and I know how seriously the Minister takes that.

The UK Stem Cell Strategic Forum, which was established at the request of the Minister of State for public health in 2010, stressed the need for further research into stem cell transplantation in 2014, and that included the recommendation that the network be established. Furthermore, the all-party group on stem cell transplantation has called for a clinical trials network a number of times over the past few years. Last year, the all-party group heard from experts in the field who pointed out some of the barriers to research into stem cell transplantation in the UK. They identified inadequate research infrastructure and inefficient data collection. Currently, the small number of patient cohorts and the complex regulatory environment—I ask the Minister to look at that aspect as well—mean that fewer than 5% of stem cell transplant patients are recruited into prospective clinical trials of any kind. Also, data collection at transplant centres is inefficient owing to inadequate staff training. The poor quality of the data means that they are unsuitable for research purposes, which significantly undermines the potential to achieving good outcomes in transplantations.

The infrastructure is ready to provide support for a national network, which would allow for the rapid recruitment of participants, standardise procedure and provide a central data hub to manage and evaluate research and share information which could be used to improve patient outcomes.

[Mary Glindon (North Tyneside) (Lab)]

Excellent UK charities such as the Anthony Nolan trust have been the first in the world to invest in third-generation sequencing. Does the hon. Gentleman agree that the Government should give support to that groundbreaking technology?

[Mr Burrowes]

Absolutely. I pay tribute to the Anthony Nolan trust, which has been supportive of the all-party group for many years. It has worked hand in hand with the Government on providing more collections, and its registry is world renowned for providing support and saving lives. The trust is making the call, as we are doing here, that we could do much more with high-quality research to support better long-term outcomes for patients.

I would like to highlight the success of the trials acceleration programme, which was established by someone the Minister knows well, Professor Craddock at the University of Birmingham. He is also connected with the Anthony Nolan trust. The early phase trials involve an initiative to speed up the pace of new clinical trials using a hub and spoke model to ensure that trials are conducted efficiently. The hub co-ordinates trial centres at hospitals around the UK and deals with bureaucracy and regulatory issues. The trials acceleration programme has successfully overcome the main barriers to research—namely, inadequate research infrastructure and inefficient data collection. I suggest to the Minister that this programme should be replicated in the form of a national stem cell transplantation trials network.

[Jim Shannon]

I understand that one in eight people in the UK fail to find a matching donor. That number increases dramatically, however, for people in black, Asian and minority ethnic groups. Does the hon. Gentleman agree that we should prioritise support for further research into stem cell transplantation and the factors that affect transplant survival rates?

[Mr Burrowes]

I agree with the hon. Gentleman on many of these issues. Progress has been made on collection rates, particularly among the black, Asian and minority ethnic communities, but we need to find better ways to do this. As I said, one in four people are unable to find a match. My hon. Friend the Member for Salisbury (John Glen) is himself a donor, and he can speak for himself on this. I know that others present in the Chamber have family members whose lives have been saved by people donating. I want to send out a message from the debate tonight for people to donate and to be part of the registry, so that they can help to save lives.

[Mark Tami]

This is not just about finding a match. We also have to think about the quality of the match. Everyone would like to see a 10 out of 10 success rate, but as a result of technological advances, lesser matches can now be used to help to save lives, even though they are not ideal.

[Mr Burrowes]

Absolutely; I welcome that point. We are not talking simply about increasing capacity all over the place. We must remain focused, particularly on the black, Asian and minority ethnic communities, to give them greater opportunities. We must also focus on quality and on the long-term outcomes. When a match is found, we must ensure that the transplantation happens and that there are no barriers to a good long-term outcome. We need further research if we are to achieve that.

Professor Craddock has estimated that the network will need £3.4 million of funding over four years. It is not going to be cheap, but there is a great return in terms of lives saved and good health outcomes. The lack of investment in this industry is a reflection on some of the uncertainty about the way in which we should go forward, but Professor Craddock’s approach is a trailblazing way forward.

The call to the Minister is to follow what is said in our report “Cord blood transplantation: meeting the unmet demand”. We made a specific recommendation to the Government to establish a national stem cell transplantation trials network to facilitate and promote high-quality research into cord blood as a curative therapy for patients with blood cancer and blood disorders. He will know that that is very much in line with the Government’s current strategy to develop the life sciences industry in the UK, as stated in the 2012 life sciences update. It says:

“We recognise the importance of empowering patients to participate in clinical research, and have set up the Clinical Trials Gateway, with associated mobile applications”.

We have yet to receive the Government’s formal agreement to support the all-party group’s recommendation, and I look forward to the Minister saying today that he agrees with it. I hope that he joins with the broad support from across the transplant community of well-organised stakeholders in the field who are looking to the Government to provide that lead, support and engagement, to make the UK a world leader in transplantation, research and life sciences—and that will need resources. I also ask that he meets the Anthony Nolan trust and other stakeholders to discuss this issue of research and long-term health outcomes, and the recommendation of the all-party group. We would be happy to welcome him to discuss all those things at our next all-party group meeting.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

I congratulate my hon. Friend the Member for Enfield, Southgate (Mr Burrowes) on securing this Adjournment debate on this crucial topic. I also thank Members from across the House—the hon. Members for Torfaen (Nick Thomas-Symonds), for Strangford (Jim Shannon) and for Alyn and Deeside (Mark Tami), my hon. Friend the Member for Congleton (Fiona Bruce) and the hon. Member for North Tyneside (Mary Glindon)—for staying late to raise and support this important issue. Let me take the opportunity to pay tribute to the Anthony Nolan trust, and to the work of the many volunteers who support its work around the country and the partnership it has established with the NHS and with the National Institute for Health Research. I have been invited by them twice to visit the facilities and I am very keen to do that. I want to put on the record that the only reason those two visits had to be rearranged was the intrusion of the general election, and I look forward to visiting as soon as I can.

As my hon. Friend the Member for Enfield, Southgate has made clear, stem cell transplantation is a life-saving treatment that plays a key role in the treatment of leukaemia and some other diseases. Almost 4,000 patients a year receive this type of treatment. Many patients are fortunate to have a closely related family member who can donate stem cells, but the treatment of more than 1,000 patients depends on stem cells from a suitable unrelated donor. The Department of Health has invested significantly in this area and since 2011 will have provided a total of £19 million in funding to establish and staff a series of donor centres around the country. Earlier in the year, I was delighted to announce the latest £3 million of funding, and just this week we have seen the formal opening of the £3 million blood and transplant research unit down in Bristol, where red blood cells are being manufactured from stem cells. It is based in Filton and is the world’s largest blood bank. It is one of four new NIHR-funded blood and transplant units—part of the £15 million programme the NIHR is putting in place. The latest analysis by the UK stem cell strategy oversight committee is that this funding has directly led to approximately 130 additional patients each year receiving a transplant.

That great achievement relies on not only the dedicated clinical teams working in hospitals across the UK, but the effective partnership between NHS Blood and Transplant and the charity Anthony Nolan. I want to take this opportunity to pay tribute to Professor Charlie Craddock and the work that he and all those involved in the trials acceleration programme are doing. They are, in many ways, trailblazers for the wider programme of accelerated access that I am leading through the accelerated access review. The Institute of Translational Medicine in Birmingham is breaking new ground on how we can take science into NHS practice.

The Government have also directly funded the creation of a unified registry—the Anthony Nolan and NHS stem cell registry—that ties together the different databases across the UK, making searching for a suitable donor quicker and easier. The number of registered donors continues to grow, and I am delighted that last year the registry passed the 1 million mark.

As hon. Members have highlighted, this is not just about the quantity; it is also about the quality. In response to the recommendations from the oversight committee, the funding from the Department of Health has specifically been used to create a panel of young male donors, who are much more likely to be able to donate. That panel now exceeds 70,000 and continues to grow. The data clearly show that that has been an effective strategy and that those young men are several times more likely to be asked to donate than others on the registry.

Finding a suitable donor is not the same for all patients. There is a global shortage of donors for patients from minority groups and those with diverse origins. To address that, the Government supported the targeted recruitment of donors from the black, Asian and minority ethnic community, which has now increased the chance of a patient finding a suitable well-matched donor from only 40% in 2010 to 60% today. It should be noted that our work with minority communities is supported by a number of partners in the charitable sector, such as the African Caribbean Leukaemia Trust, and more widely the Department continues to work with NBTA—the National BAME Transplant Alliance—which co-ordinates the work of those organisations on all forms of donation, including bone marrow.

It is an unfortunate fact that for many patients, finding a suitably matched donor will remain very difficult if not impossible, and in those situations umbilical cord blood might offer an alternative source of stem cells. Cells isolated from the umbilical cord are much more tolerant of slight mismatches and can be just as clinically effective as adult bone marrow and, unsurprisingly, BAME patients are almost six times more likely than Caucasian patients to receive stem cells from the umbilical cord. That is why funding from the Department has supported the targeted collection of high-quality cord blood samples. Both NHS Blood and Transplant and Anthony Nolan run dedicated units to collect cord blood and they have a specific target of collecting 40% of samples from BAME parents. The NHS cord blood bank now has more than 12,000 high-quality samples and, as a consequence, many more patients are now receiving cord blood samples obtained in the UK, making transplantation quicker and easier.

We continue to explore how transplantation can be improved, including clinical outcomes. I am aware that the NIHR Office for Clinical Research Infrastructure, NOCRI, has been in discussion with the University Hospitals Birmingham NHS Foundation Trust and other stakeholders to explore how it might be possible further to build on the NIHR national clinical research networks. The NIHR welcomes applications on any aspect of research related to stem cell transplantation and those applications are subject in the normal way to peer review and judged on the basis of scientific quality and the importance of the subject to patients and the healthcare service. The collection of clinical outcome data, which has been mentioned by a number of colleagues, remains an important issue within stem cell transplantation, which is why some of this year’s stem cell improvement funding of £3 million has been earmarked specifically to support data collection. That is an issue that the hon. Member for Torfaen has highlighted.

Such initiatives complement at every level the broader work we are doing to support the new life science landscape in which genomics and informatics drive better targeted treatments. When we are thinking of the future of stem cell transplantation in the UK, it is important to see it as part of a much wider strategy for the development of regenerative medicine. When we identified regenerative medicine as one of the eight great technologies in 2012 in the Department for Business, Innovation and Skills, it was largely on the basis of its theoretical potential to develop into a significant sector, but in the past few years we have seen an explosion of activity in this field, justifying that investment. Much of the work is, of course, for small and medium-sized enterprises.

We have not only established through the work of Innovate UK the Cell Therapy Catapult but have provided £55 million of funding to build the cell therapy manufacturing centre in Stevenage. That centre will enable UK and global companies that are looking to scale up to phase 3 manufacturing, solving a key barrier identified in the translation of research into commercially viable products. When that facility opens in 2017, it alone will support the creation of up to 150 new jobs on the Stevenage campus.

The creation of such centres of excellence attracts further inward investment and current estimates are that the sector will grow within the next 10 years to be worth £1.2 billion here in the UK. The Government have worked to co-ordinate funding across the regenerative medicine sector through initiatives such as the UK regenerative medicine platform, driven by Innovate UK. The unique role played by NHSBT is notable in this respect. It already has experience in cell processing, storage and delivery of living cell-based therapies from its work with blood supply and it will have a key role in the development of the logistics systems to respond to the specific requirements for regenerative medicine. In the coming years, the number of cell therapies and their clinical impact will expand far beyond their current use in transplantation, but will none the less rely on this key foundation. NHSBT is more than just a specialist logistics organisation; it has the ambition and potential to play an important role in the development and adoption of a wide range of novel therapies. It has already set in place a number of regenerative medicine projects, working in partnership with universities and the commercial sector.

Preparing the NHS for the novel regenerative therapies was a key aim of the regenerative medicine expert group, and am I pleased to say that the excellent report published in March this year contained a number of clear recommendations. To ensure that those recommendations are acted upon, I have asked the chief executive officers of the key delivery organisations to take them forward. I look forward to receiving their update in due course.

My hon. Friend asked whether I would be prepared to meet the all-party group on stem cell transplantation. I would be delighted to meet the group. In fact, I want to take this opportunity to announce that, in order to facilitate the process of submitting applications to the National Institute for Health Research, I am in the process of organising an NIHR parliamentary moment—I hope that it will become a parliamentary day—at which that great institution, which spends £1 billion a year on front-line clinical research at the heart of the NHS, can come to Parliament and set out for colleagues across the House the different programmes that we are running in the different disease areas and how applications can be made. I hope that the all-party group, along with the Anthony Nolan trust and clinicians such as Charlie Craddock, will play a role in making applications to the NIHR.

I echo my hon. Friend’s call for donor volunteers to come forward. I congratulate those, such as my hon. Friend the Member for Salisbury (John Glen), who have already led the way by donating. The truth is that progress in biomedical science, cell therapy, genomics, informatics and the development of autologous stem cells—stem cells that do not require donation—is moving at an incredible pace. I recently visited the Berlin institute for stem cell therapy, and the extraordinary advances across Europe are bringing within our range a whole new world of regenerative medicines based on autologous, manufactured stem cells that do not require donation. There is a whole new class of therapeutics, with the T cell and the immunotherapy drugs, which we hope will mean that in due course we can treat some of these cancers without that therapy being necessary. For now, however, it is our line of last resort, so it is crucial that we support that work and encourage and support donors to come forward.

[Mr Burrowes]

I welcome the Minister’s call for donors. I want to return to the point about trying to get the life sciences industry more involved. The Minister mentioned that it was largely SME-based. Although there has been public sector and charity involvement in the early stage of development, industry investment has been moderate. What does he put that down to, and how can we try to encourage the bigger life sciences industry to get involved?

[George Freeman]

My hon. Friend makes a good point. As in some other sectors, such as malaria, where the commercial models are not as well developed or as clear, there is a role for the Government, which is why we have set up the strategy and the partnerships. By de-risking and supporting the deep science in the early stages and bringing forward these partnerships of support, we hope to make it a sector in which more and more companies are beginning to see a return, and then they will start to invest their own money. All the indications are that that is beginning to happen here in the UK.

A&E Services

David Burrowes Excerpts

Wednesday 24th June 2015 Commons Chamber

[Ben Gummer]

Walk-in centre closures were supported by the hon. Lady’s hospital because that gave a safer service. I walked through the Lobby with her also. Because her party is unable to make a decision about money being spent on benefits and on the general budget for government, she would not be able to pledge any more than my party; in fact, she could only promise less funding for social care. She has to be straight with voters. Labour Members cannot have it both ways. They cannot spend money on the NHS, benefits and all the other things that they are pledged to increase funding on, and also claim to be the party of fiscal responsibility. It just does not hang together.

[Mr David Burrowes (Enfield, Southgate) (Con)]

I welcome the focus on integration, particularly in relation to social care. Enfield suffers from historical underfunding, with a lack of fairness in relation to the growing deprivation and age profile. We have made great progress, but we need to make more to ensure that there are winners, such as Enfield. That may lead to other parts of London, and inner London, being losers, but let us take these decisions now and make funding fairer, particularly in relation to social care.

[Ben Gummer]

My hon. Friend is right. Again, he highlights a local solution to a serious problem, and one that will not reflect what is needed in other parts of the country. That is why it is so important that we concentrate the additional money that we are providing on local solutions rather than on a top-down reorganisation.

The shadow Minister spoke about primary care. He does not seem to have listened to my right hon. Friend’s latest announcements on the new deal for GPs to increase the workforce, support new buildings for GPs, and improve access through local innovation. We are trying to reduce the pressures that we understand are on GPs and that go back many years, not helped by the GP contract signed by his Labour predecessors. We have a choice in government about whether we declare an ambition—the ambition on primary care declared by Labour at the last election was, the Royal College of GPs said, an

“ill-thought out, knee-jerk response”—

or we can try to do something about it, listen to concerns, and remodel care so that it helps patients. That is what the Government have done. My right hon. Friend has spoken about it, and the work is being carried on by the Minister with responsibility for primary care, my right hon. Friend the Member for North East Bedfordshire (Alistair Burt).

Human Fertilisation and Embryology

David Burrowes Excerpts

Tuesday 3rd February 2015 Commons Chamber

[Jane Ellison]

I am aware of that work, which has been the subject of extensive parliamentary questions. The expert panel considered all of those issues, including that piece of work, during the course of their deliberations.

[Mr David Burrowes (Enfield, Southgate) (Con)]

Does the Minister acknowledge that scientists broadly accept that the procedures are nuclear cell transfer? That is what regulations 4 and 7 make clear. That means that nuclear DNA in the egg is explicitly altered. Therefore one has to agree that an honest, clear definition of what we are dealing with is genetic modification.

[Jane Ellison]

No, I cannot accept that description. I recognise that my hon. Friend has objections to the procedure, but I do not recognise his description. Nuclear DNA is not affected; mitochondrial DNA is different.

As well as paying tribute to the scientists at Newcastle university, I want to pay tribute to the Lily Foundation, a charity founded by families who have lost their children to serious mitochondrial disease, and who have shown us the human suffering behind this scientific advance. Many right hon. and hon. Members, like me, have constituents who are affected, and I am sure that some Members will talk about such families in their own speeches.

--- Later in debate ---

[Mr David Burrowes (Enfield, Southgate) (Con)]

We are here today to consider the regulations. The explanatory note says that the debate gives Parliament the opportunity to consider whether the new techniques are safe enough for use in a treatment setting. I said in a point of order at the start of the debate that I did not believe that we had had sufficient opportunity to make that decision today—sufficient opportunity, yes, to consider the passionate views of those mothers about whom we have heard today, who are at risk of passing a serious disease to their children, and also to consider on behalf of the country the prospect of our being world leaders in permitting human germ-line genetic modification. I say “genetic modification” because that is what it is. We need a clear and honest debate.

A number of scientists have accused the Government of dishonesty for trying to redefine what we are here for today, which is to debate whether to permit genetic modification. Only last week, the United States Institute of Medicine said that what we are discussing today are

“assisted reproductive methods involving genetic modification of eggs and zygotes for the prevention of mitochondrial disease.”

The HFEA, too, accepted honestly on its website that whether we go for PNT or MST, they are both genetic modification.

I do not know how many Members have read the regulations. This is not a wide debate about mitochondrial donation or about the principle. It is specifically about the regulations. They make it clear that the procedures entail a cell nuclear transfer, which alters the nuclear DNA in the egg that the DNA is transferred into. It is clear that mitochondrial DNA makes up part of the human genetic code. This technology that we are debating modifies that code by separating nuclear mitochondrial DNA. Regulations 4 and 7 make it clear that this is a complete transfer of nuclear DNA into the donor’s egg or embryo. The Government should admit that the interaction between mitochondria and nuclear material is not clear. We cannot say with certainty that these techniques will not affect the characteristics of children.

In conclusion, the Government said in their consultation response that this is about providing greater understanding of the ways in which mitochondrial DNA mutations are passed down from mother to child. In many ways it is an experiment, or a wider trial, and it is a trial that I do not think we should go ahead with. It is unprecedented in the world. Some might say that it is leading the pack, and others might say that it is leaving us out on a limb. Ethically, it breaks international norms. Legally, we have heard about the directive. With regard to safety, the tests are not yet complete. Members might think “Not yet” or “No”. Either way, please vote against the motion.

Mitochondrial Replacement (Public Safety)

David Burrowes Excerpts

Monday 1st September 2014 Commons Chamber

[Fiona Bruce]

I accept that in no case can one be 100% sure that a technique will be safe. However, we are very far from that in this case. This is a case of genetic engineering; it is the alteration of a potential human being—the removal of certain genes and their replacement with others, to create children. Surely, in such cases, we should be very careful over safety before we proceed.

[Mr David Burrowes (Enfield, Southgate) (Con)]

I am grateful to my hon. Friend for securing this debate. It is not just her who has concerns about safety. When legislation was scrutinised in 2008, the right hon. Member for Bristol South (Dame Dawn Primarolo), now Madam Deputy Speaker, said as the responsible Minister that the safety of such techniques needed to be established before we could proceed.

[Fiona Bruce]

Absolutely. I thank my hon. Friend for his intervention.

The HFEA has repeatedly told the Government that further research is required before we can proceed.

--- Later in debate ---

[Mr David Burrowes (Enfield, Southgate) (Con)]

It is a pleasure to follow the hon. Member for Stockton North (Alex Cunningham) who gave us that moving account of Jessica. That account has also raised other matters in relation to the principles and the ethics of the issues with which we are dealing. In 2008, I was involved in the scrutiny of the Human Fertilisation and Embryology Bill and the Joint Committee and I still bear the scars. We are focusing here on public safety. We are not doing that as a guise, as some hon. Members have wrongly suggested. The focus is on safety, because that is what Parliament intended to be the case. We need to be absolutely satisfied about the safety of the process. Concerns over the painful, debilitating, serious mitochondrial diseases have been well made, but we must consider safety.

The hon. Member for Cambridge (Dr Huppert) says that we need an honest debate. He quoted Lord Winston, who said—the Government need to take heed of this when they seek to make some redefinitions—that mitochondrial transfer is genetic modification, and that modification is handed down the generations. Lord Winston said that it was totally wrong to compare it with a blood transfusion or a transplant and that an honest statement might be more sensible and encourage public trust.

The point is that Parliament intended to proceed cautiously and not in the permissive way suggested by some in 2008 who said that we did not need regulations and should just let the HFEA get on with it. The idea was that the question needed to be explored carefully. The Minister at the time, the right hon. Member for Bristol South (Dame Dawn Primarolo), said:

“there are so many questions that we cannot yet answer, the Bill provides for the principle…They can be drafted only when the research is at a more advanced stage.”

That deals with why this has taken so long, as the research was not at a stage to allow the regulations even to be drafted. We must also take heed of the fact that the then Minister also said:

“The Bill provides the flexibility for further consideration by the public and Parliament, and for the specific details of the techniques to be specified in regulations.”

That is where we supposedly are now. She went on:

“More importantly, the Bill allows that once the safety of the technique is established and not before.”––[Official Report, Human Fertilisation and Embryology Public Bill Committee, 3 June 2008; c. 25.]

That was the intention of the Minister at the time and I hope that it is the Minister’s intention now.

[John Glen (Salisbury) (Con)]

My hon. Friend is making a thoughtful and powerful case. My concern is that if the implications are not fully understood, instead of dealing with the legitimate concerns of all the parents of children who are suffering greatly, we risk creating even worse conditions in future generations.

[Mr Burrowes]

My hon. Friend makes an important point. We recognise that this is not an uncontroversial technique similar to blood transfusion. It is controversial, and we must recognise that if we want to bring the public along with us. We must also recognise that, as my right hon. Friend the Member for Havant (Mr Willetts) said, we would be leading the way in scientific advancement, but we would be leading the way not just because of scientific development but because other countries had considered the ethics, complications and risks and said that they were not going to go down that route. Some might say that we are out there at the forefront, but others might say that we are out there on a limb.

On 22 July, the Minister responded to the consultation by saying:

“We wanted everybody with a view on the regulations to comment and the majority of people were positive.”

We have heard from the hon. Member for Stoke-on-Trent South (Robert Flello) that there is another view. The Minister went on:

“We will now progress with our plans.”

Given that I was present during the scrutiny of the Human Fertilisation and Embryology Bill, I would suggest that the then Government—I had much against them as regards the Bill—clearly intended that safety must come first. The issue is not whether the majority want it or who has the loudest voice—scientific or otherwise—but about safety. We need to be convinced so we must take heed of the HFEA, which says that although we have had the detailed submissions,

“Let us be clear: safety is and will always be of paramount importance...progress being made towards safety in this area”.

Progress is being made towards safety, but we are not there yet. The HFEA agrees that further research is needed. Pre-clinical data and research need to be considered, and that must all happen before we progress further. I urge the Minister to take heed of the concerns and to proceed only after we are clear about safety. We are not there yet.

Care Bill [Lords]

David Burrowes Excerpts

Monday 10th March 2014 Commons Chamber

On new clause 26, I asked the Minister to imagine a circumstance when he might have crushing central chest pain and the ambulance takes him not to a casualty department but to a police cell because a cardiologist is not available to make the assessment or a bed is not available on a coronary care unit. That is completely unthinkable yet that is the reality in the UK for people experiencing a mental health crisis. It has gone on for far too long. I am perhaps one of the few Members of this House who has been in a police cell in the middle of the night because I was a forensic medical examiner for several years. These are extraordinarily scary places for anyone, let alone an individual experiencing an acute mental health crisis.

[Mr David Burrowes (Enfield, Southgate) (Con)]

I, too, have had experience of being in a police station, as a duty solicitor in my case, and therefore have seen for myself that the very last place these most vulnerable of people should be is a police station. Given that the Government have made commitments—indeed, financial commitments—on a diversion service, to ensure that the principle of diverting these vulnerable people is recognised, surely the next step is to support the principle of my hon. Friend’s new clause?

[Dr Wollaston]

I thank my hon. Friend for those comments and I welcome the mental health crisis care concordat, and what is being done to emphasise that prevention is by far the best way forward, but even with those prevention measures in place I think we would all accept there will still be circumstances where people will reach crisis, and unfortunately a police station is absolutely the last place anyone, let alone a child, would wish to be in crisis. In Devon and Cornwall alone, 27 children last year were taken to police cells for long periods of time. On three occasions those children were as young as 12 and 13. That is simply unacceptable. One of the reasons it is likely to continue is that there is no penalty currently for the NHS in continuing to use such facilities. It does not have to pick up any of the financial tab. That is putting enormous pressure on our police forces. They do not wish this to happen, of course. If we cannot at least have this sunset clause, which I think is eminently sensible, I hope the Minister will consider making sure that the NHS has to pay to use the police cells, and that there is a significant financial penalty, because that would be a driver. That would make it financially much more sensible for the NHS to put in place measures for these vulnerable people—who often have been found by the police at the point where they are about to take their own lives. It cannot be acceptable for this situation to continue.

Moreover, the variation in such use of police cells is extraordinary. There are some areas where that is not used at all and others where it is very heavily relied on. I hope the Minister will say in his response that he is prepared to consider a sunset clause, or at least a financial penalty, so we see drivers in place and we continue to move away from such a practice. However, I absolutely recognise the point made by my hon. Friend the Member for Enfield, Southgate (Mr Burrowes) that prevention is far better, and I know all areas are working towards that and that the Minister fully supports it.

New clause 9 is an extraordinary measure that is widely welcomed because of the principles to which the right hon. Member for Salford and Eccles (Hazel Blears) referred about well-being and prevention. These are at the heart of the Bill and everybody welcomes them. However, I think the Minister recognises that there could be unintended consequences if we were to introduce many new statutory obligations without their being funded fully. As he will know, we have two tests—a needs test and a means test—for people to pass in accessing social care, and 88% of needs tests are now set at a substantial level, which has been quite a considerable change. There is also the means test, which stands at £23,250. On many occasions as a GP, I remember coming across the absolute shock encountered by people when they realised that they would get no help whatever.

The change under the Bill will be extraordinarily welcome, although we should be under no doubt about the burdens that it will place on local authorities, in particular in my area. Devon has the third oldest demographic in the country, but funding of local authorities for health care does not have sufficient emphasis on the age structure of the population. There will be great impact on Torbay and on other areas in Devon, such as my constituency.

New clause 9 is a sensible measure about how we plan for the future and make an appraisal of whether we are fulfilling the important provisions in the Bill, ensuring that we have sufficient resources directed towards prevention and well-being. I hope that the Minister will see the new clause as helpful and as one that will assist us in planning for the future.

Adult Autism Strategy

David Burrowes Excerpts

Wednesday 5th March 2014 Westminster Hall

[Mr Buckland]

I entirely agree with my hon. Friend. I am grateful to him not only for his work on the all-party group but for his work as shadow children’s Minister and as children’s Minister in this Government. He played his part in ensuring that early diagnosis is a step closer to reality. The Children and Families Bill, which is shortly to be enacted, now incorporates education, health and care into one plan for young people who previously received statements of special educational needs. I am talking about children, but what my hon. Friend says is relevant. If we fail to take those early steps, the problems that manifest in later life become not only more difficult for the adults and their families but more expensive for the state. One example is that adults with Asperger’s are seven times more likely to come into contact with the criminal justice system than those without the condition. Why? Because Asperger’s is still a relatively unknown condition. It is not understood by many agencies that deal with it, and misunderstanding leads to sad results.

[Mr David Burrowes (Enfield, Southgate) (Con)]

I thank my hon. Friend for his extraordinary leadership and for having a positive impact in a relatively short time on the understanding of autism. On Asperger’s, he will share my concern for those who unfortunately fall into the criminal justice system, but how far do we need to go to ensure that all agencies properly understand Asperger’s? Just last week, a constituent told me that Atos did not have a clue on how to deal with it. His older child was completely let down by the work capability assessment.

[Mr Buckland]

My hon. Friend, of course, has constituency experience with the Gary McKinnon case of how we can reach a dreadful situation where, because of a complete misunderstanding of the condition, serious consequences can flow. He makes an important point about Atos, and we have seen the difficulties that it has got itself into. It is unacceptable that we have a system that does not properly recognise these conditions. Frankly, it is a scandal. We can do far better than that, not only for adults with Asperger’s but for the range of invisible conditions—I do not call them hidden conditions, because the word “hidden” has connotations of its own—right through the gamut of mental health. We do not have a grip of that, either in the benefits system or with some other agencies.

--- Later in debate ---

[Norman Lamb]

My hon. Friend beat me to it, because I was about to refer to his comments on apprenticeships. I am interested in that. I am proud of what the Government have done on apprenticeships in general, but their use for people with autism is an interesting area. I noted the points he made about the scheme in his local area, and I am happy to consider it further.

[Mr Burrowes]

On incentivising employers and leading by example, the Government, in the NHS, are among the biggest employers around and will no doubt want to be an autism-friendly organisation and employer. Does the Minister have any information about how autism-friendly the NHS is in employing people with autism? Will he look into how the NHS can take a lead by doing that?

[Norman Lamb]

I absolutely agree that the NHS ought to be an exemplar employer. I suspect that the truth is that it is variable, with areas of good practice, but we do not know enough about the position throughout the NHS. The message should go out from this debate that the NHS has an obligation to lead by example and to demonstrate what can be done. Several hon. Members made the point that employing someone with autism might be quite challenging to start with, but the potential that that individual can offer is often enormous. An organisation could end up with a loyal employee who can contribute massively. The NHS needs to demonstrate that by leading from the front.

Everyone with autism should be

“able to live fulfilling and rewarding lives within a society that accepts and understands them.”

That was at the heart of the “Fulfilling and rewarding lives” strategy, and I stand firmly behind it. Furthermore, the work of the National Autistic Society’s “Push for Action” campaign has been hugely valuable in helping the Government to focus on the issues that need to be considered. I pay tribute to the society for inspired leadership. Other organisations have worked with us as well, including the Autism Alliance, Autism Plus and Ambitious about Autism, and I pay tribute to the work of all those organisations.

During our review, we ran a comprehensive exercise to listen and learn how the strategy is working. Nearly 2,000 people, including some on the autism spectrum and some who are involved in planning, commissioning and providing services, took part in focus groups, events and conferences, and more than 1,100 people with autism took part in an online survey. Local authorities worked with their partners and local people to complete a self-evaluation exercise on their progress. All this information, including individual returns, will be made available by Public Health England when the update of the strategy is published. As well as cross-departmental discussions, there has been contact with the different parts of the United Kingdom to discuss all four strategies, including that of Northern Ireland, to find common ground and to improve standards across the board.

Foundations for change have been laid and people with autism have increasingly been engaged locally in planning and designing services. Clear national guidance has been issued on the care, management and diagnosis of autism. We have heard about some great experiences that people have had in further education or with particular employers. My hon. Friend the Member for East Worthing and Shoreham made a good point about the need for employers to take the lead and to demonstrate best practice.

In some areas, there are great local autism teams and excellent diagnostic services. I noted what my right hon. Friend the Member for Chesham and Amersham said about her area and the GP who was taking the lead in that county to commission services. That is exactly what needs to be happening everywhere. I also heard of some great services being provided in Swindon, so there are some good things happening, but it was only five years or so ago that low levels of awareness and a lack of services were what led to the Autism Act, back in 2009. There are some real successes, but there is also much more to do to see the foundations translated into a greater difference to peoples’ lives.

When I have talked to people with autism and to families at events that have taken place during the review, I was struck by how variable the position is. In some areas, very little has happened. We now have the legislation in a good place and a good strategy, which is being updated, but translating that into a difference to people’s lives is where an enormous amount of work still needs to be done.