Improving Cancer Outcomes

Edward Leigh Excerpts
Thursday 5th February 2015

(9 years, 3 months ago)

Commons Chamber
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John Baron Portrait Mr John Baron (Basildon and Billericay) (Con)
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I beg to move,

That this House has considered improving cancer outcomes.

Recent analysis from Macmillan Cancer Support shows that there are now an estimated 2.5 million people living with cancer in this country—an increase of almost half a million over the past five years. May I therefore begin by thanking the Backbench Business Committee for granting this timely debate on an issue that is becoming ever more urgent: improving cancer outcomes?

I would also like to thank my fellow officers of the all-party group on cancer for all their hard work, and the officers of the other cancer-specific all-party groups. It speaks volumes about the importance of the issue that we have come together to secure this timely and important debate. I would like to give the all-party group on cancer a plug. The group is recognised as the wider cancer community’s voice in Parliament. It has a proud campaigning track record. It runs what is now the largest one-day conference on cancer in the UK—Britain against cancer—each December. In the Minister’s own words, it rightly holds the Government’s feet to the flames.

The timing of this debate is crucial. With only a matter of weeks of parliamentary time before the general election, and at a time when NHS England is embarking on a new cancer strategy, this is likely to be the last opportunity for this Parliament to speak up on behalf of the cancer community and feed into that strategy.

The challenge has never been greater. Macmillan Cancer Support estimates that 3 million people will be living with cancer in this country by the end of the next Parliament. By the end of next year, 1,000 people a day are expected to be diagnosed with cancer. Hospital admissions for cancer in England have increased by around 100,000 a year, compared with five years ago. The NHS has missed the target of cancer patients receiving their first treatment within 62 days of an urgent referral for three quarters.

There is also good news, though, in that we have certainly made improvements in cancer outcomes over the past few decades. The latest figures published in December show that the one-year cancer survival rates in the UK now average 68.5% to 69%—up by a full 10 percentage points since 1997. These are figures on a page, but we are talking about thousands of lives saved every single year because we are driving up cancer survival rates, particularly in the one-year figures.

However, those improvements have been gradual and incremental, and they have not been enough to catch up with our European counterparts. Research has shown that our one-year survival rates still significantly lag behind European averages. Whereas we have 68.5% to 69% in this country, the best in Europe is 81% to 82% in Sweden. That is a significant difference that accounts, very roughly, for some 10,000 lives a year. There is always a danger in making comparisons. For example, if we look at the French figures, we are making comparisons with France’s centres of excellence. None the less, the established evidence suggests that we are down by some 5,000 lives a year on European averages, and perhaps by as many as 10,000 when compared with the best in Europe.

Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
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That is why we want an open debate about the future of the NHS. We need to recognise that the social insurance systems in France and Germany produce better outcomes for people than our own national health service.

John Baron Portrait Mr Baron
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That is a debate for another day. I accept that dramatic improvements could be made within the existing structures of the NHS, and I want to focus on that in this debate.

The Government have estimated that from 2011 to 2015 an additional 12,000 patients will survive for more than five years after diagnosis compared with the previous five-year period. That figure tells us nothing about how we are doing relative to our European counterparts, who will no doubt also have made improvements. Are those 12,000 lives just a continuation of a fairly stable and steady trend line that has been in evidence for the past 25 to 30 years, or a kick-up, as it were, above the trend line that suggests that we are catching up with our European neighbours? I would appreciate it if the Minister provided clarity on how the figure of 12,000 additional lives saved has been calculated and what action the Government are taking to ensure that we continue to strive towards matching the best outcomes in Europe.

I am conscious that a good number of other Members will speak in the debate, so, without being exhaustive, I will focus my remarks on four key areas: earlier diagnosis and survival rates; inequalities and older people; patient experience; and, last but certainly not least, the problem that some charities are having with data access.

Earlier diagnosis has long been an issue that the all-party group has campaigned on: we describe it as cancer’s magic key. All the statistics suggest that the NHS is as good as any other health care system at treating cancers once they are detected, but poor at detecting them in the first place. That suggests that we need to raise our game as regards earlier diagnosis. Most of these 5,000 or 10,000 lives are being lost at the one-year point, and the NHS is not catching up. We therefore need to drive forward initiatives at the coalface that encourage earlier diagnosis. It is almost a national disgrace that one in five cancers are first diagnosed at A and E when those patients are, on average, twice as likely to die within a year than those diagnosed via an urgent GP referral. That shows the importance of earlier diagnosis.

With this knowledge, we have spent the past two years working with the Government and NHS England to ensure that the right accountability levers are in place to encourage earlier diagnosis. We have been successful, together with the wider cancer community—because ultimately this is about teamwork—in getting one-year and five-year cancer survival rates into the NHS outcomes framework and one-year cancer survival rates into the commissioning outcomes indicator set. That is good news. We were also delighted when Simon Stevens agreed to our recommendations on including one-year survival rates in the delivery dashboard of the clinical commissioning group assurance framework from April this year.

I have used a lot of terminology, but there is a basic logic in putting the one-year figures up in lights and breaking them down by CCG. One of the best ways, if not the best way, of driving up one-year survival rates is to better introduce initiatives that encourage earlier diagnosis at the coalface. Those could be, for example, better awareness campaigns at a local level; encouraging better screening uptake figures, some of which are pretty poor; better diagnostics at primary care; better GP referral rates; or an A and E system which, when it detects these one-in-five cancers, instead of pushing patients back down the system, refers them up, potentially saving crucial time. All or any of those could be introduced by CCGs that are trying to get their one-year figures up. Putting the one-year figures up in lights will put pressure on those CCGs to raise their game on earlier diagnosis.

Human Fertilisation and Embryology

Edward Leigh Excerpts
Tuesday 3rd February 2015

(9 years, 3 months ago)

Commons Chamber
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Luciana Berger Portrait Luciana Berger
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I am going to make some progress, because I am conscious—referring back to the intervention of the hon. Member for Wellingborough (Mr Bone)—that we have limited time and many Back Benchers wish to contribute.

It is important to note that the use of these techniques will not be rushed into lightly if Parliament does pass them today, and specialist clinicians will then have to obtain a licence from the HFEA to use the techniques. We heard last night that this will only be in centres of excellence, and the HFEA will consider applications on a case-by-case basis.

We have heard concerns in previous debates that allowing mitochondrial donation is a dangerous road to start down, and that it could potentially lead to designer babies and parents being able to select the physical characteristics of their children. But we have also heard in the public debate that these fears do not take into account the fact that these regulations are very specific and cover only mitochondrial DNA, not the nuclear DNA that determine our physical characteristics. The legislation only permits the use of these techniques in the clearly defined situation of incurable mitochondrial disorders.

The fact that these techniques apply only to the mitochondrial DNA and not to nuclear DNA should provide further reassurance to those Members concerned that this process would result in “three-parent babies.” As we have heard, mitochondrial DNA only controls mitochondrial function and energy production. Importantly, nuclear DNA, which makes us who we are and determines appearance and personality, will not be altered by the techniques that we are discussing today.

The regulations clarify that a mitochondrial donor is not to be treated as a parent, by contrast with the legal position for sperm and egg donors, who are treated as people who would, or might, be the legal parent of a child born from their donation.

There are questions around the safety of these techniques. As we have heard, this technique has received unprecedented scrutiny by the HFEA’s specially convened expert scientific review panel. However, it is possible that side effects could emerge over time and scientists have acknowledged that there would always have to be a “leap of faith” the first time the technique is used in humans.

Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
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On the question of safety, does the hon. Lady not consider it significant that the Food and Drug Administration in the United States said that it was not clear that the scientific procedures were effective and safe? The FDA, of course, refused to allow the use of Thalidomide while we did, and the rest, as they say, is history.

Luciana Berger Portrait Luciana Berger
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I understand that the FDA has written to the British press in the course of the last week to contradict that position. There is a very different political situation in the US, and there is a very different set-up there in terms of the FDA compared with here and what we are discussing today.

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Lord Willetts Portrait Mr David Willetts (Havant) (Con)
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I apologise to you, Mr Speaker, and to the House for missing the opening speech in the debate. Nevertheless, I was keen to speak because I think that the proposals before us today would tackle a real human need. There are parents who are currently bringing into the world children with a horrible disease and the suffering is made more acute by the fact that now, for the first time, prospective parents know that they could be doing this procedure and they therefore face the dilemma of whether or not to have children.

I realise that there are important objections. My hon. Friend the Member for Congleton (Fiona Bruce) put forward the ethical objection. I fully understand the fact that our benefit from this treatment does not of itself overcome the ethical issues, which are crucial. The red line to which she referred is, I think, a red line over which we have designer babies and change the DNA that makes the character of a person. I am persuaded by the scientific evidence that the mitochondria is not part of the core DNA that does that. In the previous debates and the previous legislation, it was absolutely clear that the red line that the House was trying to set was one that stopped the changing of human nature, and we do not cross it today.

Edward Leigh Portrait Sir Edward Leigh
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But it can be inherited.

Lord Willetts Portrait Mr Willetts
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It is absolutely true that mitochondria can be inherited through the mother, but it does not change the character of the baby.

Secondly, let me consider the health and safety objection. Sometimes that objection is being used as a cover for what is really an underlying objection in principle. The scientists say, with typical caution and care, that there is no evidence that this is unsafe. It is true that nobody can have 100% certainty about that, but there have been 15 years of research and seven years of scrutiny, including by various scientific bodies and ones promoted under this Government, and so far no one has been able to come up with a concrete and powerful objection that suggests that the process is unsafe. It is right for us today to be considering moving on to the next step.

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Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
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Everybody who is following this debate will of course have the most profound sympathy for families who are affected by these appalling diseases, and I quite understand why so many colleagues want to vote for the regulations to lessen human suffering, but I am afraid that I will oppose the regulations. I do so on three grounds: ethics, safety and the importance of parliamentary procedure.

On the first, ethics, I think what we are considering is a new step. It will affect the germ line. Mitochondria is inherited; it is not just another organ of the body. What is proposed is a fatal and important step. As my hon. Friend the Member for Congleton (Fiona Bruce) asked, where do we stop? Given the nature of the human condition, these appalling diseases, sadly, will occur, but where do we stop? What further modifications will we make?

My second ground for opposing the regulations is safety. Under European conventions and regulations and so on, we should have full clinical trials and the scientific community should be united on aspects of safety, which it is not. Unfortunately, we will be the first state in the world to authorise the technique, and in that sense, in bioethical terms, we will be in a unique position. We should ask ourselves why no other state—not in the EU, not the US, not yet anybody—thinks that this is proved to be absolutely safe.

As for the third reason for my opposition, it has been said that this is not a final decision, and that we are just handing it over to the HFEA, but this is the final decision; it is a monumental decision. For the first time, Parliament is saying that we authorise people to affect mitochondrial DNA. That is a monumental decision. This will now happen and colleagues who vote for the regulations must appreciate that.

For those three reasons—on ethical grounds, on safety grounds and on procedural grounds—I will vote against the regulations.

Contaminated Blood

Edward Leigh Excerpts
Thursday 15th January 2015

(9 years, 4 months ago)

Commons Chamber
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Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
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I echo the right hon. Member for Knowsley (Mr Howarth) in describing this as a debt of honour. That, I think, sums up what the debate is all about. We caused this. We did not cause it personally, of course, but it was caused by the state and the national health service, so we are responsible.

I congratulate all Members who have spoken—particularly, of course, my right hon. Friend the Member for North East Bedfordshire (Alistair Burt), who has campaigned so effectively. I also pay tribute to my late friend Jim Dobbin. As has already been mentioned, his memorial service took place yesterday, and, in paying tribute to him, the Bishop of Southwark described him as an MP of causes. I know the House of Commons and politicians are often criticised, perhaps quite rightly, but I think this debate shows the House of Commons at its best. There are many MPs, like Jim, who do not necessarily see their political life as one of holding high office but who realise we are here to try to promote causes, particularly as, because of our constituency system, when we speak here we often do so because our constituents have approached us. In other political systems Members of national Parliaments are perhaps more remote.

One national politician who is not remote is the shadow Secretary of State, the right hon. Member for Leigh (Andy Burnham). We are all very grateful that he is here today given his other responsibilities, and I am working with him on another issue where people’s lives have been ruined through no fault of their own. We value his presence here today.

I have said that many of us are here today because of constituents, and I am here because of my constituent Gary Jones from Scotter, who has raised this issue with me several times. I want to share some of his thoughts with the House. First, however, may I make an apology: I am on the Panel of Chairs and quite soon I will have to go and chair a private Bill, so I may miss the winding-up speeches.

As I have said, I want to talk about the issues Gary Jones has raised and, in particular the Irish compensation scheme. Before doing so, however, I want to echo and emphasise what my hon. Friend the Member for Aldershot (Sir Gerald Howarth) said in an intervention as it makes the point very clearly. I have already said this once and I will say it again, and it will be said several times during this debate: let right be done.

We caused this, and we have to put it right. The state—or the establishment—is responsible. I do not know who is really responsible—probably no particular individual; no doubt everybody was trying their best—but there has been gross negligence over several decades, since perhaps as early as the 1940s when the viral risks associated with the blood products in question were known and patients were not informed. One of the greatest scandals in all this is that so many patients have been kept in the dark.

Richard Fuller Portrait Richard Fuller (Bedford) (Con)
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My hon. Friend said that this was an example of gross negligence by the state. In addition to what the Penrose inquiry will show that is specific to the contaminated blood issue, does he agree this is also an opportunity for us to set some guidelines and rules for those occasions when there are failures by the state health service on how it will deal with compensation so that we avoid a patchwork of problems similar to those that affected our constituents?

Edward Leigh Portrait Sir Edward Leigh
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I entirely agree, and I do not think this is just a question of money. If we attack the Government just in terms of money, we might not succeed in this campaign. It is also a question of learning lessons, and what the victims want above all is some sense of involvement in future schemes. We must learn lessons, and I am sure we are doing so.

The screening of blood donors was totally inadequate, allowing those with a history of jaundice to donate. Even in response to the rise of AIDS the Government failed to implement the best technology available at the time to render blood products safe. The results of this neglect have been appalling: the infection of over 5,000 haemophiliacs with hepatitis B and C, over 1,000 of whom were also infected with HIV from NHS blood products, resulting in 2,500 deaths. Although there has been compensation in many cases, it has been inadequate—indeed, they would claim it has been miserly. For instance, although there is a one-off payment available for hepatitis stage 1, there is no ongoing payment. All this is plainly unacceptable; I think everybody who has spoken agrees with that. It is also obvious that there must be a suitable scheme for compensation to the victims—not that any monetary amount can repair the damage that has been done.

The Irish scheme has perhaps not received as much attention as it should have done in this debate so far, and again I am quoting here from the arguments given to me by my constituent. It is not, as I am afraid some of my hon. and right hon. Friends on the Front Bench have suggested, that we want to link the UK compensation payment scheme to that which exists in Ireland. It is worth repeating that campaigners have never expressed a wish to place the Government’s funding of any compensation scheme in Irish hands. For myself, I do not suggest that the compensation should be exactly the same, but the Irish scheme is worth looking at in terms of compassion: it puts compassion first; it accepts liability; and it is substantial enough for the victims to gain closure. So I encourage Ministers to look further into the compensation scheme the Republic of Ireland has established and to see what lessons might be applicable to us here in the UK.

Jenny Willott Portrait Jenny Willott
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Does the hon. Gentleman agree that, because we are talking about quite a small number of people, fairly generous packages of compensation would be affordable? We are not looking at millions of people; we are looking at a small number of people who have suffered very seriously as a result of the NHS.

Edward Leigh Portrait Sir Edward Leigh
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Yes, I want to deal with that point, and I am glad that the hon. Lady has made that intervention. I can quite understand where the Government are coming from, but both my hon. Friend the Member for Aldershot and I—and others who have spoken—cannot ever be accused of wanting to waste public money. We are very aware of the pressures on Government. Again I am grateful to my constituent for some of the figures that have been given to me. He says—and I hope the Minister will reply to this point—that:

“The figures quoted in the Written Ministerial Statement are completely incorrect. The Government have refuted suggestions that they based their calculations on a typographical error in the Archer Report and claim that the costings were based on an average of £750,000 per person. The CEO of the Irish Haemophilia Society has confirmed that the average figures paid out in Ireland was ‘around €350,000’ per person.”

So the total figure we are talking about here is £1.5 billion. That is very similar to the compensation paid to the victims of Equitable Life. I have campaigned on Equitable Life, as we all have, and it is pretty awful for someone to lose their life savings and there was appalling suffering, but at the end of the day they have lost their savings; they have not lost their life. So if we are prepared to pay this sort of compensation to the victims of Equitable Life, why do we baulk at similar figures for those whose whole lives have been ruined, and ultimately many of them lost?

My hon. Friend the Member for Gosport (Caroline Dinenage) put it very well:

“I recently met a delegation of people who had suffered through the Equitable Life disaster. Although I have every sympathy with their plight, today’s debate puts that matter into perspective because we are talking not about the loss of life savings, but about the loss of life itself, loss of livelihood and of the chance to grow old, and losing the chance to become a parent and see one’s children grow up.”—[Official Report, 14 October 2010; Vol. 516, c. 556-7.]

I could not put it any better, and I end on the following point. We recognise that we are at fault. We recognise that these people’s lives have been ruined. We recognise that the current compensation scheme has not fulfilled their expectations and is not fair. Let right be done.

Surrogacy

Edward Leigh Excerpts
Tuesday 14th October 2014

(9 years, 7 months ago)

Westminster Hall
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Edward Leigh Portrait Sir Edward Leigh (in the Chair)
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Order. I will call the hon. Lady, but she did miss most of the opening speech. I am sure she will want to apologise, although I am also sure that there is a good reason why she was late.

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Andrew Gwynne Portrait Andrew Gwynne (Denton and Reddish) (Lab)
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It is a pleasure to serve under your chairmanship, Sir Edward. I congratulate the hon. Member for Erewash (Jessica Lee) on choosing this interesting and important subject for a Westminster Hall debate. She put the case eloquently, sensitively and sensibly.

It is some decades since the main rules controlling surrogacy were put in place, and it is no exaggeration to say that they are a product of their time. Although there has been welcome progress on some aspects of surrogacy—for example, provision for adoption leave and pay for intended surrogate parents was included in the Children and Families Act 2014—a more fundamental examination of our position on surrogacy is needed, so the debate is extremely timely.

Of course, it is important to say at the outset that the health and well-being of any children born as a result of surrogacy arrangements must be at the heart of our concerns. As the hon. Member for Stevenage (Stephen McPartland) rightly said, that must sit firmly alongside the need to prevent exploitation of any of those involved in surrogacy, but the welfare of children must be paramount.

Aspects of the current situation can certainly be described as troubling. The growth of the internet continues to accelerate, and it takes only a few keystrokes to bring up a search engine web page with paid advertising for commercial surrogacy services abroad. The revelation that Britain may account for as many as 1,000 surrogate births in India every year is shocking enough, but when it is contrasted with the low numbers known to be taking place in Britain, it is clear that the situation requires serious review. There is a clear need for further research to establish the size of the international trade in surrogacy and to enable the development of a deeper understanding of how it functions.

It is not just the hon. Member for Watford (Richard Harrington) and my hon. Friend the Member for Bolton West (Julie Hilling) who have experienced tricky constituency casework on this issue. Earlier this year, she and I had almost identical cases, which we discussed. The legal issues got very tricky, and that was compounded by the passport fiasco. Thankfully, my case, like hers, has been satisfactorily resolved for the parents and the child. However, the cases were tricky, which highlights just how difficult some of these surrogacy arrangements can be. While that can be compounded by factors outside the control of those involved, the arrangements in India were incredibly tricky and caused the parents a lot of heartache and trauma, as well as a lot of unex—I am trying to think of the word. I have lost my train of thought.

Andrew Gwynne Portrait Andrew Gwynne
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Thank you, Sir Edward—unexpected expense. That placed the family in severe difficulties while they were in India.

Although our legislative framework might restrict exploitation in connection with surrogacy in the UK, it might simply be shipping exploitation abroad, where there are undoubted commercial opportunities to make large amounts from the exploitation of poor women. In the past few days the case has been reported of an Australian couple who are said to have abandoned one of two surrogate twin babies born in India, taking only one of them back with them. That amply demonstrates the need for international action. I hope that today’s debate will highlight the need for consideration of an international convention on surrogacy, so that we can put an end to such unethical and immoral practices.

The international dimension is important, but inevitably the question arises of how we might alter the situation in the UK to enable aspiring parents to explore the option of surrogacy in a way that protects all parties and puts children’s interests first. I suggest that we consider three things. The first is an assessment of the scale of the need for surrogacy and whether we can reduce that need through action to reduce the incidence of infertility in women. The second is an assessment of the extent of the international trade in surrogacy; on international health questions, we are much more effective if we operate in concert with other countries. The World Health Organisation appears to take little interest at present in surrogate motherhood issues, and perhaps the United Kingdom, as a member of its executive board, should take a lead in raising the issue and ensuring that it is included in the WHO programme of work. I should be interested to hear how the Minister can take that matter forward. The third thing to consider is a review of UK legislation on surrogate motherhood. Difficult issues will inevitably need to be considered, particularly the potential involvement of commercial interests in arranging surrogacy. The hon. Member for Erewash set out a possible framework, and that should be considered carefully. I am interested to hear the Minister’s response to the important points she made.

The current position is clearly unsatisfactory and in need of attention. If the population is to continue to make use of surrogate motherhood to deal with the problem of infertility, it would surely be better for the processes to take place within an ordered, regulated system here, than in a system that is not ordered, halfway round the world. It would be better for the parents, the surrogate mother and the child. The comments and suggestions made by the hon. Member for Erewash were compelling. She is right to raise the question of how to strengthen our domestic law to protect all concerned. This is a sensitive area that needs to be considered carefully, but there is a need for change at home as well as internationally, and I look to the Minister to give direction, answer questions and consider the possible solutions that Members have suggested. Thank you, Sir Edward, for filling the gaps that were left in my speech when, sadly, my train of thought left my brain.

Mitochondrial Replacement (Public Safety)

Edward Leigh Excerpts
Monday 1st September 2014

(9 years, 9 months ago)

Commons Chamber
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Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
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There has been a great deal of controversy over the past few decades about genetically modified plants and crops. Through the march of applied sciences and advances in agriculture we have managed to feed billions of people, but I am sure that all Members will agree that we are dealing with entirely separate issues when we talk about genetically modified food and what we are dealing with now, which is genetically modified people. We have only in the past 100 years come to terms with the debilitating, restrictive and oppressive results of centuries of racism buttressed by pseudo-scientific notions that have since been proved entirely false. How much more of a problem will we be confronted with when humanity is divided between the modified and the unmodified?

I say to my right hon. Friend the Member for Havant (Mr Willetts) that mitochondria contain DNA. They are present in every cell in the body and just because they are not nuclear does not mean that they are any less an integral part of a human being. The mitochondria that contain DNA interact with the nucleus and many scientists therefore believe that they contribute material to the identity of an individual. Bioethicists have up until this point expressed almost universal consensus on germ-line genetic modification of our fellow humans, rejecting it as grievously immoral and completely unethical. The consensus is worth pointing out as we must know what the proponents of mitochondrial transfer are asking us to dissent from. They are asking us to dissent from opinion in every other country in the world. In this age of globalisation, we will be divorcing ourselves from the entire community of nations in terms of bioethics. Do we really want to become a rogue state in terms of bioethics?

No one can deny the debilitations and hardships that these diseases cause. No one is seeking to downplay that suffering, but this is not about a cure. This will neither heal nor cure a single human being suffering from these diseases. What is worse, when we talk about pronuclear transfer, is that that effectively requires the creation of human beings for the sole purpose of harvesting their useful parts. Is that really the sort of society in which we wish to live, in which persons—individuals—are created, their parts harvested and then destroyed, merely to provide for other human beings? There is no way that that can be considered ethical, whether in terms of purely rational deductive natural law, or by the system of Christian ethics on which we in this country have traditionally relied. I hope hon. Members on both sides of the House, and from every part of the spectrum from right to left, can unite on that point. I support the motion.

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Jane Ellison Portrait The Parliamentary Under-Secretary of State for Health (Jane Ellison)
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I congratulate my hon. Friend the Member for Congleton (Fiona Bruce) on securing this debate at the Backbench Business Committee and all the right hon. and hon. Members who have contributed. It has been an extremely thought-provoking debate. Inevitably, in the time available to me, which I believe is 10 minutes, I will not be able to do justice to every point, but I hope that Members know that if there is a point that I am unable to cover in my remarks, I will follow it up afterwards and attempt to respond to them.

I welcome this opportunity to discuss mitochondrial donation and to reflect on the scientific and policy journey that has brought us to this point. As many Members have said, children are being born with and are dying from devastating conditions that are caused by mitochondrial disease. Scientists and clinicians have developed a treatment to tackle it but, rightly, Parliament will need to approve new regulations for it to be used.

As Members have said, this is not a new subject for Parliament to be debating. In 2008, Parliament agreed amendments to the Human Fertilisation and Embryology Act in anticipation of these groundbreaking developments. That provided a power to introduce regulations that would allow mitochondrial donations. It is that next stage that is the focus of our deliberations.

I will explain the thorough and open approach that has been used to assess the safety and efficacy of the proposed donation techniques, and to gauge the public’s views. This has not been a rushed process and I do not agree that Parliament is being asked to vote blind, as some have said—far from it, as others who have been in this House for longer than I have testified. We have asked the HFEA to convene a panel of experts three times since 2011 to review the scientific evidence on the safety and efficacy of the proposed donation techniques. All three reviews have indicated that the donation techniques—maternal spindle transfer and pronuclear transfer—would be effective, and all three reviews have found no evidence to indicate that either technique would be unsafe. To quote the chair of the expert panel, Professor Andy Greenfield, whom I have met to discuss the reports:

“In three years’ study the expert panel has seen no evidence which suggests that these new mitochondrial replacement therapies are unsafe.”

However, I appreciate that some Members have expressed concerns. Some are opposed in principle and some have practical concerns about whether we have looked at all the important details.

The decision on whether a new treatment can be described as safe is never absolute, as Members have said. Doctors and scientists rarely, if ever, make an unqualified statement that a procedure is safe. Instead, they proceed by hypothesis, evidence and risk analysis. Indeed, no medical procedure is without risk, from a cataract removal to a triple heart bypass.

There have been calls today for more research into mitochondrial donation, but research cannot be expected to answer every question. All that we can ask is that it adds to our knowledge and highlights areas that need to be looked into further and monitored more closely. We are currently considering the most recent report of the expert panel, the assurances that have been given on the safety and efficacy of the techniques involved and the recommendation of further experiments to confirm earlier findings.

The draft regulations to allow mitochondrial donation, on which we consulted, would also bring into place important safeguards, as others have said, through the HFEA’s strict licensing procedures. For a licence to be issued to a provider of mitochondrial donation, they would first have to demonstrate that they could carry out the procedure safely and effectively.

Edward Leigh Portrait Sir Edward Leigh
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Will my hon. Friend give way?

Jane Ellison Portrait Jane Ellison
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I will take only one intervention, if the House will allow me.

Edward Leigh Portrait Sir Edward Leigh
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It has been said in the debate that we are not creating three or four-parent families, but given that the cells of a second mother will be used, will a child have a legal right to know the identity of the three or four people who contributed to their creation?

Jane Ellison Portrait Jane Ellison
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That was one area of detail covered in the draft regulations and the responses to the consultation on it, and I will write to my hon. Friend with a detailed response. A wider point is that we should surely not reduce the notion of parenthood to genes. Many Members who have spoken in the debate, particularly my hon. Friend the Member for Congleton, who moved the motion, have often spoken in other contexts about parenthood being more about loving, nurturing and so on. It cannot be reduced simply to the donation of genes—I worry that that, in itself, would be a slippery slope.

Mitochondrial donation is supported by both the chief medical officer, Professor Dame Sally Davies, and many clinicians and IVF experts, including, I am pleased to say, Professor Lord Winston, who has been quoted a number of times in the debate. Among other comments, he has made it clear that he supports the draft regulations and would vote for them.

This is undoubtedly a really difficult area in which to gauge public opinion, because it is complex and technical and a lot of people know nothing about it. Some Members who have seen e-mails going around the House asking them to attend this debate have told me that they did not know what it was about. That means that the exercise of engaging the public needs to be carried out in a thoughtful and comprehensive way. That was exactly what the Government did—we tested the public acceptability of introducing these techniques through a comprehensive dialogue process commissioned by the HFEA and led by external experts. It included events such as workshops and focus groups, and it showed that when the process of mitochondrial donation was fully explained to them, the majority of people supported its use provided that it was carefully regulated. The Department of Health’s consultation was on the draft regulations, and those who commented on them broadly supported them. I urge people to be mindful of the way to go about testing public opinion on the matter. We have to ensure that it is done on the basis of facts.

Oral Answers to Questions

Edward Leigh Excerpts
Tuesday 15th July 2014

(9 years, 10 months ago)

Commons Chamber
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Jane Ellison Portrait Jane Ellison
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Unsurprisingly, that is another example of the hon. Gentleman putting politics before patients. We have had a slew of information put out to people in his area and surrounding areas, much of which did not highlight the new facilities that are being introduced. I would love to hear the hon. Gentleman talk up the new facilities coming into that area. Charing Cross hospital will be redeveloped as a 21st century health care facility, in line with my right hon. Friend’s decision based on the independent reconfiguration panel’s advice. Charing Cross and Ealing will have a local A and E with 24/7 access to full diagnostic support, consultant advice and specialist care—and it would be really refreshing if the hon. Gentleman, rather than following his usual line, could tell some of his constituents the good news about health care in his part of London.

Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
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5. What steps he plans to take to improve standards in general practice.

Jeremy Hunt Portrait The Secretary of State for Health (Mr Jeremy Hunt)
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We are working hard to improve standards of care in general practice. We have brought back named GPs for those aged 75 and over, introduced a new inspection regime and are doing everything we can to recruit more GPs to improve capacity.

Edward Leigh Portrait Sir Edward Leigh
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When will both political parties be honest about the massive looming black hole in health funding, with an ageing population demanding ever better care? We cannot afford to pay for it out of general taxation, so are we going to be honest and have an open debate about moving to the French system of social insurance in which people are charged and repaid if they do not have the means, giving them an infinitely better health service?

Jeremy Hunt Portrait Mr Hunt
- Hansard - - - Excerpts

I do not agree with my hon. Friend; let me explain why. The first and important point is that independent studies, such as that which was done last month by the Commonwealth Fund, have ranked the NHS top out of 11 major health economies, including the French example. Money is, of course, tight throughout the NHS, but we have been able to find efficiency savings of £20 billion over the last five years, and we will continue to find them. What I would not support, however, is any system of charging that would make it harder to access NHS services, particularly for older people whom we need to access more services more quickly if the NHS is to be sustainable.

Oral Answers to Questions

Edward Leigh Excerpts
Tuesday 10th June 2014

(9 years, 11 months ago)

Commons Chamber
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Norman Lamb Portrait Norman Lamb
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My hon. and learned Friend has raised an extremely important point. It is essential that the maximum possible use be made of investment. I know that the Secretary of State will look into this issue when he has received the letter, but we must ensure that all such facilities are properly used.

Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
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14. What steps he plans to take to improve the provision of health services in the east midlands.

Norman Lamb Portrait The Minister of State, Department of Health (Norman Lamb)
- Hansard - - - Excerpts

Decisions about local services should be made as close to patients as possible, by those who are best placed to work with patients and the public to understand their needs. Clinical commissioning groups commission the majority of health services, working with health and care professionals to design services for local populations.

Edward Leigh Portrait Sir Edward Leigh
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In large rural areas like Lincolnshire, the air ambulance can make the difference between life and death, particularly for car crashes where roads are blocked. What plans does the Minister have to strengthen the services of the East Midlands air ambulance service?

Norman Lamb Portrait Norman Lamb
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I will be very happy to discuss the issue with my hon. Friend, if he would like to do so. I pay tribute to the extraordinary work the air ambulance services undertake across our country. I have witnessed that in my own community and I would be very happy to talk further about what more can be done to strengthen the work they do.

Mental Health Care (Older People in Lincolnshire)

Edward Leigh Excerpts
Thursday 27th March 2014

(10 years, 2 months ago)

Commons Chamber
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Stephen Phillips Portrait Stephen Phillips (Sleaford and North Hykeham) (Con)
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World Health Organisation figures show that mental illness is responsible for the largest proportion of the disease burden, at just over 22%, in the UK. That is greater than that of cardiovascular disease or cancer, each of which stand at about 16%. In our society, mental health simply does not receive the same attention as physical health. People with mental health problems frequently experience stigma and discrimination, not only in the wider community but from services they need to access. This is exemplified in part by lower treatment rates for mental health conditions and an historical underfunding of mental health care relative to the scale and impact of mental health problems.

However this problem may have arisen, it is persistent and the consequences are plain. People with severe mental illness have a reduced life expectancy of 15 to 20 years, even though the majority of the reasons for this are entirely avoidable. I cannot be the only one to think that this can no longer be tolerated in the 21st century. I am glad that the Government have made real progress in promoting the principle of parity of esteem with their commitment to put mental health on a par with physical health in the NHS. Central to this approach is the fact that there is a strong relationship between mental health and physical health, and that the influence works in both directions: poor mental health is associated with a greater risk of physical health problems, and poor physical health is associated with a greater risk of mental health problems.

I sought this debate to raise the particular issue of mental health care for older people in my county, an issue that can only continue to grow in importance as our population ages. The UK is experiencing a significant population shift, with both the size of the older population and projected life expectancies rising considerably faster than previously expected. Significant growth is expected amongst those over 65 in the next few decades, with the oldest age group of those aged 85 and above growing proportionally the fastest. As the population aged over 65 increases, the number of older people with mental health problems will also, inexorably, increase. The largest increase in numbers of any mental health problem will be seen in the rise of the numbers of people with depression, but there will also, undoubtedly, be significant increases in the number of people with dementia.

Surprisingly, perhaps, this will be compounded by co-morbidity with substance misuse in this age group. Although usually regarded as a problem affecting younger adults, abuse is overlooked in the elderly. In the next few decades, there are likely to be increasing numbers of older people exhibiting co-morbid symptoms, as alcohol and drug users from the baby boomer generation reach and pass retirement.

One of my constituents, a community nursing assistant at the Manthorpe centre in Grantham, has spoken to me about his concerns for the future. Although the centre is not in my constituency but in that of my hon. Friend the Member for Grantham and Stamford (Nick Boles), it provides mental health services for older people from all over Lincolnshire. As such, concerns have been raised with me about the reorganisation of services at the centre and elsewhere in the county. The job of a community nursing assistant, as my hon. Friend the Minister will know, is to provide the emotional and practical support needed by elderly patients. Assistants thus deal with a large number of lonely, isolated and vulnerable people. It is not only the mental health diagnoses of those in this group that cause problems, but the simple loneliness. Often, their health care workers are the only people they see or talk to on a regular basis. Indeed, my constituent has told me that he and his colleagues can be the “nearest relative” at funerals, which gives some sense of the acuity of the problem.

It used to be the case that families and communities looked after their older members and supported them, but sadly, as we all know, that is all too often not the case. The disestablishment of those community posts in Lincolnshire is thus causing real concern. Those who fill them save the NHS money by helping those in need directly, without their needing to be admitted to hospital, which is far more costly than being supported while living at home. Yet when I contacted the Lincolnshire Partnership NHS Foundation Trust to ask about these posts, I was told they were intended to provide social intervention rather than health care per se—a function that the trust feels should be carried out by local authorities through their social care staff. So it is that a lack of funding from one part of the system that does not regard itself as responsible for the establishment of these posts runs the risk of costing itself and other parts of the NHS more money in the long term.

I understand from more recent discussions that the trust is now working closely with our local authorities to ensure that patients remain supported, but I understand and share the concerns of many that elderly folk in need may fall through the cracks despite good intentions. Indeed, that is too often the case where NHS care and social care interact—an issue that I know has been raised on numerous occasions in the House by colleagues on both sides. I would therefore be grateful if the Minister told the House what steps his Department is taking to work with trusts that are reducing provision to ensure that robust support networks are maintained and improved for patients with mental health needs.

Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
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The people in Lincolnshire will be grateful to my hon. and learned Friend for raising these issues. Does he agree that they are exacerbated by the rural nature of our county? Frankly, people in a deeply rural county such as Lincolnshire sadly get a worse service than people living in urban areas.

Stephen Phillips Portrait Stephen Phillips
- Hansard - - - Excerpts

I am extremely grateful to my hon. Friend, who makes an important point. All too often, and not just in this area of public service, as he knows, but in so many others, we get a much worse service in rural communities—particularly, it seems, in Lincolnshire —than many other places. That is in part made up for by the fact that we have extremely strong communities, with strong ties between neighbours and families, but as I know he knows, far too often we seem to draw the short straw in this and other areas.

That is in part why I also want to raise with the Minister the apparent disconnect between services for those aged over 65 and those under that age, given our ageing population in the county. In that regard, I have been told that the care provided by the community mental health team in my part of Lincolnshire for those under 65 has been fairly extensive, including a lot of support for those settling back at home after a hospital admission, but that such services are not so readily available for those aged over 65. Why the disconnect and what can the Minister do about it?

I am aware, of course, that the Equality Act 2010 has been vital in shifting mental health services towards age inclusiveness. The Minister will know, and has no doubt acted on the fact, that there is now a duty on health and social care services not to discriminate on age grounds. That ought to mean that older people with mental health problems should have the same access to mental health services that had previously been available only to people under the age of 65. Is this working? No doubt the Minister can tell the House, for there is a great deal of concern, at least in Lincolnshire, that it is not. I understand that the Department of Health has acknowledged the under-representation of over-65s in the IAPT—improving access to psychological therapies—initiative and has made a commitment to undertake various corrective actions to address that in line with the provisions of the 2010 Act. I would be grateful if the Minister could tell the House what his assessment is of the current state of mental health services for those aged over 65 and what steps he is taking to ensure improvements in provision and access in Lincolnshire and elsewhere.

The Royal College of Psychiatrists has said that to integrate older adults’ mental health services into “ageless” services makes no sense. Older people have very different physical, social and psychological issues, which require specialist old-age psychiatrists working in specialist services for older adults. Older people tend to have multiple physical co-morbidities or frailties, which often complicate their mental health treatment. Many older people also have specific cognitive problems, social issues or end-of-life concerns, which may precipitate or sustain mental illness.

It would seem that the key element is flexibility of access. We need to ensure that people do not automatically become ineligible to continue to be treated by a service once they pass the age of 65, so that someone under that age with, for example, early-onset dementia can gain access to the expertise of comprehensive older-adult mental health services. I should be grateful for the Minister’s comments on those points.

The Royal College of Psychiatrists has also identified a “mental health treatment gap”, exemplified by lower treatment rates for mental health conditions, premature mortality among people with mental health problems, and the underfunding of mental health care relative to the scale and impact of mental health problems—the problems that I described at the beginning of my speech. Annual statistics published by the Department of Health on investment in mental health have shown that in 2011-12 there was a 1% decrease in overall investment and a 3% decrease in investment in older people’s mental health services. I know that addressing the funding gap will be challenging—particularly as such underinvestment tends to be exacerbated during times of austerity, when mental health services risk being cut in preference to physical health services—but I venture to suggest to the Minister that things should not go on as they have been.

Given the current challenge to address the high levels of both identified and unmet need, an increasing ageing population will have significant resource consequences for mental health and social care services for older people, which are already struggling to provide care at present. Unless there are major breakthroughs in new cost-effective treatments, or prevention and promotion initiatives succeed in reducing the incidence and prevalence of mental health problems among older people, services will need significant extra resources to meet that demand. In practice, however, mental health spending has in the past followed an erratic pattern nationally, with cuts in some areas and investment in others.

What, ultimately, I want to hear from the Minister tonight is an assurance that he is focusing on this issue, and that enough is being done to ensure that mental health services receive proper funding, in Lincolnshire and throughout the country.

NHS Funding (Ageing)

Edward Leigh Excerpts
Tuesday 25th March 2014

(10 years, 2 months ago)

Westminster Hall
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Gareth Thomas Portrait Mr Gareth Thomas (Harrow West) (Lab/Co-op)
- Hansard - - - Excerpts

It is a pleasure to serve under your chairmanship, Sir Edward, and to follow the hon. Member for Suffolk Coastal (Dr Coffey). I apologise to the House and in particular to the Front-Bench spokesmen for the fact that, because of a long-standing commitment, I shall have to read their responses to the debate in Hansard.

I want to raise a concern similar to the one raised by the hon. Member for Suffolk Coastal, about the funding formula, although there are constituency differences. Many health professionals in my constituency are concerned that Harrow does not receive an appropriate share of NHS funding and that that is already affecting elderly people there, and may affect many others. The context is that both the key hospital serving my constituency, Northwick Park hospital, and its parent trust, the North West London hospitals NHS trust, have been in a challenging financial position for many years.

In 2010-11, the trust made a tiny operating surplus; in 2011-12, it had an operating deficit of some £7.5 million; and in 2012-13, the operating deficit had increased to £20.5 million, approximately. Figures in papers submitted to the NHS Trust Development Authority’s recent board meeting suggest that the trust is again heading for a sizeable deficit this financial year, of about £20 million. Although final 2013-14 accounts are clearly not yet available for Harrow’s clinical commissioning group, the prediction, from NHS England information, is for an end-of-year deficit of £10.4 million. Indeed, Harrow clinical commissioning group is one of only four in London where there is significant concern about financial performance.

By setting out that information, I do not mean to criticise the trust management, the clinical commissioning group or their staffs. I have been treated at Northwick Park hospital several times, and I think the staff and management do a first-class job. I know the chair and many of those who serve on the board of the Harrow clinical commissioning group, and they, too, do a first-class job in extremely difficult circumstances. Those circumstances are made difficult by the amount of funding that Harrow receives from the NHS.

To humanise the consequences of those statistics on the financial situation that Northwick Park hospital and Harrow clinical commissioning group face, I should make it clear that there are increasing concerns about cancelled operations and longer waiting times in the A and E department at Northwick Park. Given the cuts to local government funding, there are fears that Harrow council’s social care budgets, which are already hard hit, will be cut further by an estimated £70 million over the next three years. The concern is that the NHS in Harrow will come under even greater pressure to meet the needs of elderly people in our area because of an inevitable lack of access to social care.

Additionally, the popular Alexandra Avenue polyclinic, which was open from 8 am to 8 pm for 365 days a year and provided an excellent walk-in service, has for some time been closed to patients without an appointment for all but a short period on Saturdays and Sundays. Again, the service was heavily used by elderly people, as well as by many others in my constituency. The closure of large parts of the Alexandra Avenue polyclinic’s service is particularly galling because health professionals in Harrow accept that the polyclinic was making a difference by helping to improve health care opportunities and access to health care for elderly people and many others in my constituency. That is the context of my participation in this debate, and I am concerned about whether the funding formula properly reflects the needs of the NHS and my constituents.

The hon. Member for Suffolk Coastal set out some of the funding formula issues, and I will present them in a slightly different way; that is perhaps a reflection not only of our different political parties but of the different nature of the seats we represent. The Minister and the shadow Minister, my hon. Friend the Member for Copeland (Mr Reed), will be far more aware of the debate on changes to the funding formula than I am. Like the hon. Member for Suffolk Coastal, I understand that a weighted capitation formula based on population, the local cost of providing health services, the level of health care need and health inequality is used to determine allocations to each clinical commissioning group. I also understand, as she set out, that the Advisory Committee on Resource Allocation was charged with developing a revised funding formula based on the standardised mortality ratio for those aged under 75—the so-called fair shares formula.

After substantial consultation—the hon. Lady made this point—the board of NHS England decided not to adopt the fair shares formula, and clinical commissioning group allocations were initially uprated based on their estimated share of previous primary care trust allocations. In December 2013, the board of NHS England decided on CCG funding allocations for 2014-15 and 2015-16. I understand that, again, the board decided to reject proposals for a faster move towards CCG allocation targets. I do not intend to make a party political speech, but I gently insert the point that perhaps the board might have felt differently if it had had access to the £3 billion that has been spent on reorganising the NHS, about which Opposition Members are somewhat sceptical.

The hon. Lady alluded to distances from target figures for 2014-15 and 2015-16. The figures indicate that Harrow’s allocation was almost 10% away from the target for 2014-15 and almost 9% away from the target for 2015-16. The total estimated funding shortfall for Harrow is some £23.4 million over the next two financial years. That information was provided to me by statisticians from the House of Commons Library based on estimates using the closing target allocations per head and our estimated CCG population.

I recognise that, as the Minister will presumably point out, the figure is not completely settled and that there may be movement given how far Harrow clinical commissioning group is from receiving its target allocation, but I hope that I can persuade the Minister today to scrutinise the Harrow figures. I hope he will ask his officials to talk to Harrow clinical commissioning group to see whether there is more information that might justify a further funding increase for the NHS in Harrow, to close the funding gap that has been identified.

A little like the hon. Member for Suffolk Coastal, I have tried not to be party political in this debate, although she will understand that I think I have managed it better than she did. In that spirit, I hope the Minister will take seriously my concerns about the NHS in Harrow and will ensure that his officials talk to those who do an excellent job working for Harrow clinical commissioning group.

Edward Leigh Portrait Sir Edward Leigh (in the Chair)
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When the Minister replies, I have no doubt that he will refer to Harrow’s ageing population.

--- Later in debate ---
Jamie Reed Portrait Mr Jamie Reed (Copeland) (Lab)
- Hansard - - - Excerpts

It is a pleasure, Sir Edward, to speak under your chairmanship again, although I am afraid I am not a brother knight.

Jamie Reed Portrait Mr Reed
- Hansard - - - Excerpts

I am even more afraid that it is a fraternity I will never be invited to join.

I thank the hon. Member for Suffolk Coastal (Dr Coffey) for securing this timely debate and for her opening remarks. Particular thanks should go to Government Whips for drafting so much of it. As she knows, the last Labour Government took a malnourished, failing NHS with an annual budget of approximately £30 billion and left it with a budget of more than £110 billion. The Conservative party voted against every increase in that budget. The same Labour Government oversaw the biggest ever hospital building programme in this country. It recruited tens of thousands more doctors and nurses. It inherited an NHS in which Bruce Keogh said people were dying waiting for treatment, and left a service with the lowest waiting times and the highest patient satisfaction rates in its history. Of course, there was much more to do.

I warn the hon. Lady against complacency. If she wants to see a health economy that has been plunged into crisis as a result of the Government’s policies, she should come to Cumbria where a crisis is unfolding, patients are paying the price and the Secretary of State is entirely disinterested in what is happening.

It is incredible to hear that NHS England does whatever it is told by the Labour party. That is extraordinary—this must be the most powerful Opposition of all time. Government Members should consider whether they are in office but not in power. A canard seems to be being established whereby the NHS England board have become the new reds under the bed. That fascinating argument will be rolled out between now and the next election.

Mitochondrial Transfer (Three-Parent Children)

Edward Leigh Excerpts
Wednesday 12th March 2014

(10 years, 2 months ago)

Westminster Hall
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Jacob Rees-Mogg Portrait Jacob Rees-Mogg (North East Somerset) (Con)
- Hansard - - - Excerpts

I am grateful that the debate has been granted and for the opportunity to serve under your chairmanship, Mr Pritchard. I am delighted that the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison) will reply, because she is one of the most highly regarded Ministers in Her Majesty’s Government. I would also like to thank my hon. Friend the Member for Congleton (Fiona Bruce) for all her help in preparing for the debate, as well as Dan Boucher, Helen Watt and Luke Gormally.

It is important to begin the discussion by explaining what is at stake with three-parent babies and mitochondria. Mitochondria are the organelles within every cell responsible for the generation of cellular adenosine triphosphate energy. That passes entirely in the maternal line and can carry serious diseases.

There are two means of replacing the mitochondria. Maternal spindle transfer, or MST, takes place before in vitro fertilisation. The spindle, which carries the genes in the nucleus of the egg, is removed from the healthy donor egg and replaced by a spindle taken from the egg of the commissioning mother—that is, the woman at risk of passing on mitochondrial disease. All other parts of the donor egg, including the healthy mitochondria, are left in place. The combined egg is then fertilised by the father’s sperm, and the embryo has three parents: the spindle mother, the egg donor mother and the father. Genetic parenthood is complete in the case of the father but fragmented in the case of the two mothers.

In pronuclear transfer, or PNT, two embryos are created by IVF. One, the embryo of the commissioning women, will have its mother’s affected mitochondrial genes. The other is the healthy embryo of an egg donor. The embryos are combined using a technique somewhat similar to that in the cloning of Dolly the sheep. Interestingly, the licence for the experiment was adapted from the licence originally given for Dolly-style cloning.

Edward Leigh Portrait Sir Edward Leigh (Gainsborough) (Con)
- Hansard - -

Given that this is obviously an incredibly important matter, akin to cloning, with a child having several parents—I know of no other country in the world that has done this—does my hon. Friend think it should be the subject of a full debate on the Floor of the House?

Jacob Rees-Mogg Portrait Jacob Rees-Mogg
- Hansard - - - Excerpts

I certainly think that this matter ought to come to the Floor of the House. I understand from an earlier debate that the Government are committed to full parliamentary scrutiny, but no doubt the Minister will confirm that.

To continue on PNT, at the one-cell stage the donor embryo pronuclei containing the nuclear genes are removed, killing that embryo. The partially gutted donor embryo with its healthy mitochondria is then used to form a new embryo when the pronuclei harvested from the commissioning woman’s embryo are inserted. Harvesting the pronuclei from the commissioning woman’s embryo kills that embryo.

It is important to understand that the techniques are non-therapeutic. They are in no sense a cure for children who are already born, nor do they pretend to be. Rather, the techniques create new people with altered genetic composition—genetically designed individuals who will not inherit mitochondrial disease. Although the mitochondrial DNA is around only 0.1% of a person’s total DNA, a little leaven leavens all the bread, and a different person is thereby created.

The proposed techniques all promote germ-line genetic modification. That is an infinite change that will lead to all the descendants of someone treated in this way being changed, the consequence of which cannot be known.

--- Later in debate ---
Jane Ellison Portrait Jane Ellison
- Hansard - - - Excerpts

I did not write that brief. I have never used that language and I would not. I accept—indeed, it is right—that this will be a subject of parliamentary debate, because it involves important issues. Just as Parliament has previously debated advances in science, such as IVF, and considered and weighed in the balance the concerns and the potential benefits, so that will happen again. I am certain that people will come to their own conclusion. These matters are normally decided by votes of conscience. I would be very surprised if this matter was not decided in the same way; in fact, I am sure that it will be.

Let me try to respond to some of the points and at least go through the process by which we have got to this point. I should say, though, in response to the intervention that was picked up by colleagues that we will arrange parliamentary briefings with, for example, some of the scientists involved and with the chief medical officer. I hope to be able to give hon. Members the opportunity to put questions directly to some of the people involved. There will be opportunities at all stages along the way, I hope, for colleagues to ask questions and get answers. What they think of the answers will obviously be down to them, but we will try to make it possible for people to come to a very informed view.

I am grateful for this opportunity. I am grateful that hon. Members have had a chance to put some of their concerns on the record, because that helps us in preparing for debates ahead. It gives us a heads-up on some of the areas of particular concern. Obviously, I have also been receiving correspondence about the matter.

The chief medical officer for England announced last year that the Government would go ahead with the development of draft regulations to allow mitochondrial donation in treatment. The consultation began on 27 February and will run until 21 May. I have already recognised the deep sensitivity of these issues. Since we were first approached in 2010 to make the regulations, we have been comprehensively collecting expert opinion and public views, and I will explain how that has been done. However, I understand that for many hon. Members and for many members of the public, this will ultimately be an ethical question. There will be strong views on both sides of the House, as we have seen today.

My hon. Friend the Member for North East Somerset (Jacob Rees-Mogg) touched on what mitochondrial disease is. It is a genetic condition of mitochondria—the part of the body’s cells that produces the energy that they need to function. It tends to be described, for the benefit of the general public, as the “battery pack” that powers a cell.

A person’s mitochondria come from their mother’s egg. Therefore, if a woman has mitochondrial disease, it is likely that she will pass it on to any children she may have. Mitochondrial DNA is separate from an individual’s genomic DNA, which is in the nucleus of the body’s cells. Mitochondrial DNA disease can be devastating, but the disease affects everyone differently. The range of different effects can include heart disease, liver disease, poor growth, loss of muscle co-ordination, visual and hearing problems and mental disorders. Rare conditions caused by faulty mitochondria include forms of Leigh’s syndrome, which can cause multiple symptoms in infancy, such as muscle weakness, heart and kidney failure and nervous system dysfunctions.

Some affected children live short and painful lives. They are constantly in and out of hospital. The quality of life for them and their families is seriously diminished. I have been contacted by a family in that position in my constituency and I suspect that other hon. Members will be as we continue to engage in this debate in the coming weeks and months.

The condition affects approximately one in 5,000 adults, although one in 6,500 babies are born with a severe form of the disease that can lead to death in early infancy. It is estimated that about 12,000 people live with a mitochondrial disease in the UK, and there is no cure. However, research has been ongoing at the Newcastle centre for life, among other places, for many years. In anticipation of significant advances in this field, the Human Fertilisation and Embryology Act was amended in 2008 to introduce a regulation-making power to allow mitochondrial donation to treat serious mitochondrial DNA disease. At the time that amendment was made, Parliament was made aware that there was the potential for these techniques to be developed. The Act was thus amended and that was included.

The mitochondrial donation techniques involve removing the nuclear genetic material from an egg or embryo with unhealthy mitochondria and transferring it to a donor egg or embryo with healthy mitochondria, as my hon. Friend the Member for North East Somerset said.

Edward Leigh Portrait Sir Edward Leigh
- Hansard - -

Will the Minister give way?