Oral Answers to Questions
Debate between Jane Ellison and Edward Leigh(7 years, 10 months ago)
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Jane Ellison
No one is dragging their feet and we are trying to get this matter sorted out. I have had a number of discussions with the Cabinet Secretary for Health and Sport, Shona Robison, most recently last Thursday. We are working together to facilitate the increased payments, using the current scheme administrator. We want the payments to be made as quickly as possible to people who were infected in Scotland and across the UK. Officials in the Department of Health and officials in Scotland are working closely together to expedite the matter.
Sir Edward Leigh (Gainsborough) (Con)
T8. Community hospitals such as John Coupland in Gainsborough are very popular, yet health authorities seem intent on centralising services. Will the Secretary of State today make clear his absolute commitment to supporting local community hospitals and giving them work, and state that there will be no closures without his personal authorisation?
Mitochondrial Replacement (Public Safety)
Debate between Jane Ellison and Edward Leigh(9 years, 8 months ago)
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The Parliamentary Under-Secretary of State for Health (Jane Ellison)
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.
Sir Edward Leigh
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
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
Debate between Jane Ellison and Edward Leigh(9 years, 10 months ago)
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Jane Ellison
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.
Sir Edward Leigh (Gainsborough) (Con)
5. What steps he plans to take to improve standards in general practice.
Mitochondrial Transfer (Three-Parent Children)
Debate between Jane Ellison and Edward Leigh(10 years, 2 months ago)
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Jane Ellison
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.
Dermatology Funding
Debate between Jane Ellison and Edward Leigh(10 years, 5 months ago)
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The Parliamentary Under-Secretary of State for Health (Jane Ellison)
It is a pleasure to speak under your chairmanship, Mr Turner. I pay tribute to the hon. Members who have spoken today and particularly to my hon. Friend the Member for Gainsborough (Sir Edward Leigh) for securing the debate. As has been illustrated throughout, this is an under-discussed area and it seems to be neglected in other ways, too. The debate has been valuable, and I have certainly learnt a lot during its course and in my preparation for it. Inevitably, there will be some points on which I cannot give a full answer today, but I shall endeavour to follow up with hon. Members if I cannot. I also pay tribute to the all-party parliamentary group on skin. I have looked at the recommendations in its recent report, and I pay tribute to the members of the group who have spoken today.
We have heard from several Members how many people are affected by skin disease and I shall not go over those numbers, which are very large indeed. There is a huge range of skin diseases; some are manageable and others are life-threatening, as we have heard. All have an impact on people’s lives and, in particular, can affect their personal appearance, as Members have highlighted in moving terms. In that way, skin problems perhaps represent more of a day-to-day challenge than many other conditions. They impact on all aspects of life, such as employment and personal relationships. It is, therefore, important to ensure that people with skin disease receive both the treatment and support that they need. As today’s debate has highlighted, considerable challenges remain, many of which we have not necessarily bottomed out during the debate, but we have begun to highlight some.
Let me first plug the national framework. Skin disease is a long-term condition, and through the NHS mandate we have made it clear to NHS England that we want to see the NHS among the best in Europe at supporting people with long-term conditions. We want them to live healthily and independently, with better control over the care that they receive. Those improvements are monitored through the NHS outcomes framework, for which ambitious expectations have been set out. In turn, the NHS will monitor the performance of clinical commissioning groups through the clinical commissioning group outcomes indicator set, on the quality of the services and health outcomes achieved through that commissioning.
As my hon. Friend the Member for Gainsborough highlighted, commissioning for most dermatology services is a matter for CCGs. They are better placed to use their clinical insight, local knowledge and local relationships to do excellent commissioning at a local level than Ministers in Whitehall, but I take on board the challenge about the more specialist areas. We are not leaving CCGs to commission without support. NHS England is working closely with them to ensure high-quality commissioning, and it has established commissioning support units and quality surveillance groups across the country. However, as my hon. Friend the Member for Mole Valley (Sir Paul Beresford) said, it is certainly something that I can raise on appropriate visits when the opportunity arises. As the Public Health Minister, given that so much of my portfolio is localised, I am very keen to draw attention to good practice where we see it.
There is an example in the area of my hon. Friend the Member for Gainsborough, where his local CCG has introduced a teledermatology pathway, which allows patients to be reviewed at their own practice. We also heard of an excellent example from Buckinghamshire, which I was speaking about with my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) during the break for the Division. The pathway in the area of my hon. Friend the Member for Gainsborough is being implemented across 10 practices from September. If it is successful, it will be rolled out across all the practices in the Lincolnshire West CCG. I am always interested to hear about good practice. A number of kind invitations for visits have been made during the debate and I look forward to following those up with Members so we can highlight people who are being innovative in a way that will help other commissioners.
As has been mentioned, with some highly specialist dermatology services for conditions that cannot be treated locally, it is appropriate for NHS England to commission them directly. NHS England has set out detailed service specifications for the services that it directly commissions. I realise that a number of Members have made points about the national clinical director, and that issue has been raised in other contexts, too. It is a matter for NHS England whether it appoints a national clinical director. I understand, from asking it the question, that there are no current plans to introduce an NCD for dermatology, but it is continuing to discuss with the British Association of Dermatologists the best ways to improve outcomes for patients.
As has been said, aspects of treatment of people with skin conditions can be considered under any of the five domains. That change in the new NHS focuses on people as individuals rather than on their conditions, which is why the patient pathway and not the organisations that treat them is given the closest attention. Many of the national clinical directors have cross-cutting roles—I have come across that in other areas of my portfolio—rather than roles that are related to individual medical conditions, so it is not the case that dermatology is being singled out. Clinical directors often cut across.
There is interest in the research—points have made about it—that is going on to get better results in dermatology and to come up with new treatment, so I shall touch on that. I reassure the Chamber that investment by the National Institute for Health Research in skin research increased from £4.7 million in 2010-11 to £8.7 million in 2012-13. That includes the NIHR investing £2.6 million over five years in the biomedical research centre at Guy’s and St Thomas’s and the King’s College London centre, which is leading the way in research on cutaneous medicine. The NIHR is dedicated to translating these scientific discoveries into improvements in treatment, which we hope will benefit patients at the earliest opportunity.
The NIHR has also awarded nearly £2 million to Salford Royal NHS Foundation Trust to undertake a programme of research on psoriasis. The studies will look at crucial issues, including individual patient experience, difficulties faced by service providers and identifying levels of risk in populations. I hope that the hon. Member for West Lancashire (Rosie Cooper) will take particular comfort from that, and I am sure that she will be interested in the outcome of that programme. The NIHR is also investing nearly £1 million in a trial of silk therapeutic clothing for the long-term management of eczema in children.
My hon. Friend the Member for Gainsborough will know that NICE has also published guidance on a range of dermatological conditions, including atopic eczema in children and psoriasis, and it has issued quality standards on those topics. NHS England is statutorily required to have regard to NICE quality standards, and we expect health and care professionals to take NICE guidance on the treatment of relevant conditions fully into account when deciding how to treat a patient.
NICE has also recommended a number of drugs for the treatment of dermatological conditions such as eczema and psoriasis. Patients have a right in the NHS constitution to access drugs and treatments recommended by NICE technology appraisal guidance that their clinicians want to prescribe.
As I acknowledged earlier, and as has been very much illustrated during the debate, skin disease can have adverse psychological effects on patients. The NICE quality standard on psoriasis recognises that and sets out that people with psoriasis should be offered an assessment of how their physical, psychological and social well-being is affected when they are diagnosed and when they undergo treatment. It is the responsibility of all commissioners, providers and clinicians to ensure that patients receive the psychological and emotional support that they need. Hon. Members may be aware of the IAPT—improving access to psychological therapies —programme, which is an NHS programme rolling out services across England offering interventions for people with depression and anxiety disorders. I understand that as part of that programme, NHS England is looking at how best to support people with psychological problems arising from their physical problems. That issue was raised a number of times during the debate.
I listened carefully to the comments of my hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), who highlighted that the issue of Roaccutane was discussed only yesterday in the Chamber. It is associated with rare, serious side effects and can only be prescribed by or under the supervision of a consultant dermatologist. The BAD has published guidelines for its members about when to prescribe it and how best to monitor patients for adverse effects during treatment. I will certainly make a point of catching up with my hon. Friend the Minister of State, who responded to that debate. I will ensure that we touch base with regard to the important subject that my hon. Friend the Member for Romsey and Southampton North has raised today.
The issue of GPs’ and other health workers’ education and training has come up a lot. My hon. Friend the Member for Mole Valley made it the focus of his speech. It is important that health professionals have the right training. Training and education of health professionals is a matter for Health Education England and the royal colleges. NHS England is statutorily required to have regard to the NICE guidelines, and we expect health professionals to have regard to them, too. I am aware that the BAD has produced toolkits and guidance. They are valuable resources for health professionals and should be promoted widely. NHS England has responsibility to support CCGs, as I said, with commissioning guidance and tools and it can flag up the relevant dermatology guidance and standards.
I understand that NHS England’s domain director for long-term conditions regularly meets the president of the BAD, who is also an adviser to the all-party group on skin. I am sure that the issues about the education of GPs are raised at those meetings.
The current framework for accreditation and re-accreditation of GPs with a special interest remains under review, following the transition to the new arrangements for the NHS in England. NHS England is working with the Royal College of General Practitioners and with dermatologists to produce an improved and consistent accreditation system. It is expected that there will be a report early next year, and I am sure that there will be interest from hon. Members in that.
I am concerned about the point that has been made about the shortcuts being taken on some of the training courses. I thought that what was highlighted today was quite alarming. I have heard that before. It is certainly something that I will put on the agenda for my forthcoming meeting with the Royal College of General Practitioners. I will report back to my hon. Friend the Member for Gainsborough, who raised the matter and said that there was considerable interest in it in the House.
Since 2002, there has been a 40% increase in consultant dermatologists, but I accept that that is from a modest base. It is clear that, although there was an increase of 28% between 2002 and 2012 in the total number of staff, we still have more to do, but things are improving. Health Education England needs to ensure that we have the right dermatological work force. I will ensure that it is aware of the issues that have been raised today and highlight the concerns of hon. Members.
Many of the problems highlighted in the debate have not really been funding issues, which I suppose makes a change in an NHS debate. They have actually come out of a lack of engagement that hon. Members have highlighted. I think that some hon. Members have even alluded to there being a sense of complacency sometimes with regard to skin conditions and they asked whether such conditions are taken sufficiently seriously. I am not sure that in this debate we have quite got to the bottom of why clinicians perhaps do not choose to specialise in or pursue this line of work, but today’s debate is useful in highlighting that.
Sir Edward Leigh
Will the Minister take away to her fellow Ministers the point that the psychology of all this is very important and, in particular, read the report from the group chaired by my hon. Friend the Member for Mole Valley (Sir Paul Beresford)? A lot of people, when they poke fun at others because of their appearance —their skin colour or something else—do not realise that they are causing them psychological damage. That is the particularly the case with children. It is an important point that we want to be taken away from the debate.
Jane Ellison
I am very happy to give a commitment to take that point away and I will certainly bear it in mind in other discussions that I have.
I am glad that some hon. Members have taken the opportunity offered by the debate to highlight the growing issue of malignant melanoma. It is absolutely right to say that we need to make more people aware of the dangers of skin cancer. I was struck by the point made by my hon. Friend the Member for Romsey and Southampton North about the regional variation and the fact that in her area it is a particular problem.
The Department has funded Cancer Research UK to continue to test approaches to encourage, in particular, men over the age of 50 to visit their GP if they have signs of skin cancer. I have to say that, if anyone can come up with a magic way of making men over 50 approach their GP about anything, that would be very welcome and they would be rewarded by all parts of the NHS.