Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 22nd March 2016 Commons Chamber

[George Freeman]

We are engaged in active discussions with the various parties, including charities such as Cancer Research UK, and we have received some interesting submissions from some of the research institutes. Over the coming weeks, we will consider how best to put that £5 million from the Government to work in order to maximise inward investment and build UK leadership in this important centre.

[Mary Glindon (North Tyneside) (Lab)]

14. What steps he is taking to ensure that people with muscle-wasting conditions who require a cough assist machine have access to such a machine, commissioned in the community by their clinical commissioning group.

[The Parliamentary Under-Secretary of State for Health (Ben Gummer)]

NHS England is working with Muscular Dystrophy UK through the Bridging the Gap project, and looking at issues such as the provision of cough assist machines, which are a local matter for clinical commissioning groups. A number of CCGs now have commissioning policies for these devices, based on a policy developed by Walsall CCG and shared nationally as an example of good practice by Muscular Dystrophy UK.

[Mary Glindon]

Twenty-one-year-old Freddie Kemp, who had muscular dystrophy, sadly died of cardiac and respiratory complications. He had been refused a machine by his CCG. The Minister said that he was working with Muscular Dystrophy UK. Will he meet representatives of that organisation to discuss what can be done to persuade CCGs to prioritise the provision of these important machines?

[Ben Gummer]

I thank the hon. Lady for bringing the matter to the House’s attention. Of course I will meet any groups who are concerned with it. I understand that the clinical evidence is divided in respect of the efficacy of cough assist machines as opposed to manual massage, but Walsall CCG has sought to resolve that—successfully, I understand—and other CCGs might wish to adopt its template. However, I will of course discuss with the hon. Lady personally the issues that she has raised.

Adult Stem Cells and Life Sciences

Mary Glindon Excerpts

Tuesday 15th September 2015 Commons Chamber

[Mr Burrowes]

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

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

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

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

[Mary Glindon (North Tyneside) (Lab)]

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

[Mr Burrowes]

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

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

--- Later in debate ---

[George Freeman]

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

[Mary Glindon]

Will the Minister therefore ensure that the Government will continue to support the science budget in the years ahead?

[George Freeman]

Much as I would like to, I cannot take on the role of my right hon. Friend the Chancellor and announce the results of the autumn statement. I hope that the hon. Lady will see that our commitment to, and support for, the sector is clear. I am confident that we will see a continuation of that support for science in the autumn statement. We all know that funding is tight. The key is to demonstrate clinical impact and partnerships of support with companies.

I think that this is a great success story. I pay tribute once again to the Anthony Nolan trust, whose partnership with the NHS is genuinely changing outcomes for patients.

Question put and agreed to.

Drugs: Ultra-rare Diseases

Mary Glindon Excerpts

Tuesday 16th June 2015 Westminster Hall

[Greg Mulholland]

It has been a pleasure to work with the hon. Gentleman and the APPG on muscular dystrophy on the Translarna part of the campaign. He is absolutely right. We want not only an acknowledgment from the Minister that the current processes are not fit for purpose and not fair on those with ultra-rare diseases, but a drive to overhaul them.

[Mary Glindon (North Tyneside) (Lab)]

I congratulate the hon. Gentleman on securing the debate. Does he agree that one of the best ways to help people suffering from ultra-rare diseases is Muscular Dystrophy UK’s suggestion of a fund to ring-fence money for these rare diseases?

[Greg Mulholland]

That is a powerful suggestion, as is using the surplus from the tariffs that drug companies are expected to pay to form part of a fund. There certainly needs to be an overhaul.

Foetal Alcohol Syndrome

Mary Glindon Excerpts

Tuesday 14th October 2014 Westminster Hall

[Mrs Mary Glindon (North Tyneside) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Turner. I congratulate my hon. Friend the Member for Sefton Central (Bill Esterson) not just on securing this debate but on his excellent speech.

Before the debate, I was informed by Balance, the alcohol campaign in the north-east, that every day in my region at least one child is born with some form of foetal alcohol spectrum disorder. Bearing in mind that that number goes into the thousands across the country over the year, I felt it was important to take part in the debate. I will give a slightly different take on the subject and address an injustice in current law that relates directly to the debate, which is whether children with FAS should be entitled to compensation.

Hon. Members may be aware that there have been many cases where children with FAS have sought to secure criminal injuries compensation. Before 2012, it may have been possible to secure such a claim. However, I draw hon. Members’ attention to the 2012 criminal injuries compensation scheme, which says:

“A crime of violence will not be considered to have been committed for the purposes of this Scheme if, in particular, an injury…was sustained in utero as a result of harmful substances willingly ingested by the mother during pregnancy, with intent to cause, or being reckless as to, injury to the foetus.”

In plain English, that means no sufferer of foetal alcohol syndrome or any other disability developed in the womb as a result of the mother’s actions will be compensated, even when the harm caused was reckless or fully intended. That is surely an utter scandal and warrants our serious attention.

Some people may have been put off from campaigning on this issue by highly misleading news reports claiming that awarding compensation to FAS sufferers would criminalise drinking during pregnancy. That is not the case. Although we want women to stop drinking during pregnancy, criminal injury claims are dealt with in civil proceedings and as such do not affect the interpretation of criminal law; moreover, a conviction is not needed for compensation to be awarded. Perhaps the motivation hiding behind the rhetoric is that paying out to FAS sufferers would be expensive, but saving public money is not a good enough reason to prevent children with FAS from receiving compensation. Neil Sugarman, a solicitor acting for many children affected by FAS, put it well:

“Why should these children be in any different position to those damaged during their birth or babies brain damaged by being shaken when only a few days old? The life changing consequences are the same. Is it right that a foetus exposed to a process tantamount to poisoning should be treated differently in comparison with these other classes of brain damaged children? They receive compensation that helps them access much needed treatment and therapies not readily available on the NHS and helps to improve their quality of life in many ways.”

I believe that anyone suffering from FAS deserves compensation in the same way as any other child who sustains damage at birth. I hope that those who share my concern over the increasing incidence of this terrible condition will join the campaign for that section of the 2012 criminal injuries compensation scheme to be deleted. I hope that the Minister supports that call.

Mitochondrial Replacement (Public Safety)

Mary Glindon Excerpts

Monday 1st September 2014 Commons Chamber

[Mrs Mary Glindon (North Tyneside) (Lab)]

I congratulate the hon. Member for Congleton (Fiona Bruce) on securing the debate.

Members may not have heard of ovarian hyper-stimulation syndrome, or OHSS, as it receives little coverage in the media, but it is one of the most serious complications associated with the use of certain fertility drugs during the procedure known as controlled ovarian hyper-stimulation, which is a part of fertility treatment used to ensure that the number of eggs collected is as high as possible. OHSS is not uncommon—research suggests that as many as a third of women who undergo controlled hyper-stimulation experience some symptoms, although serious cases are relatively rare. Younger women, women with certain pre-existing health problems such as polycystic ovaries, and women who have had OHSS before, are particularly at risk. Severe cases of OHSS can be very dangerous and even life-threatening, with painful and debilitating symptoms. However, monitoring of cases of OHSS is far from adequate. In answer to a parliamentary question, the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison), stated that

“The HFEA does not…hold definitive data on the number of women admitted to hospital with OHSS, including non-patient egg donors and egg-share donors.”—[Official Report, 9 July 2014; Vol. 584, c. 313W.]

[Mr Jim Cunningham (Coventry South) (Lab)]

Does my hon. Friend agree that it is probably necessary for the Government to bring proposals to the House for us to consider? There is not a lot of understanding about the disease outside the House and the public could be better informed, whichever way the decision goes.

[Mrs Glindon]

I agree. There is probably not enough understanding within the House, either.

The Minister had previously said:

“licensed fertility clinics are only required to report instances of OHSS to the authority that require a hospital admission with a severe grading, although in practice clinics often report moderate OHSS as well.”—[Official Report, 24 June 2014; Vol. 583, c. 157W.]

The figures that do exist indicate there has been a small recent increase both in the total number of recorded cases and in those cases categorised as “severe” rather than “moderate”. About 50,000 women go through IVF in the UK each year. The fact that we do not collect proper data on a potentially life-threatening condition that may affect a third of them, seems an astonishing oversight in the collection of official health statistics. Mandatory reporting of all cases is an essential first step in this process, but should only be the start of more effective and careful collection of statistics.

This issue has a particular pertinence at present because of proposed changes to the law on mitochondrial transfer and the Government’s stated intention to allow the creation of three-parent embryos. I am sure that many Members may be struggling to get to grips with the details of this procedure, but simply put both of the techniques used in mitochondrial transfer require a significant supply of donor eggs. Any such eggs will have to come from women who have been through controlled ovarian hyper-stimulation, with all the attendant risks.

[Martin Horwood (Cheltenham) (LD)]

Will the hon. Lady give way?

[Mrs Glindon]

I will not. Sorry. There is not time.

It appears that very little consideration has been given to this fact in any of the various consultations and Government position papers that have emerged over the past two or three years. No in-depth questions about the physical health of women donating eggs were addressed in the HFEA’s own briefings. Will the Minister assure the House that she will take the matter back to her Department for consideration? In the light of the safety concerns we have heard today associated with the proposed techniques, such action would appear to be urgent, for the sake of the vulnerable women involved.

Severe Eating Disorders (North-East England)

Mary Glindon Excerpts

Monday 23rd June 2014 Commons Chamber

[Chi Onwurah]

The hon. Gentleman makes an excellent point, and I certainly believe that the decision should and must be reviewed. It is clear that a number of hon. Members have been contacted by concerned constituents. Indeed, the right hon. Member for Berwick-upon-Tweed (Sir Alan Beith), who cannot attend this debate, asked me to say that he also had constituents who are affected.

Given that admissions in the north-east are 30% above the national average, and that the Royal College of Psychiatrists recommends that six beds per million of the population are needed for average admission rates, the north-east’s 2.8 million people need 23 beds. I will return to that figure, but first a word about the threatened unit that hon. Members have already referred to.

The Richardson eating disorder service is operated by Northumberland, Tyne and Wear NHS Foundation Trust. It is in the centre of Newcastle, with excellent transport links. It is acknowledged to be an outstanding unit, rated excellent by the Royal College of Psychiatrists and the Care Quality Commission. It has just won Beat’s clinical team of the year award. A stable, vastly experienced staff has been treating adult in and out-patients since 1997, and it has saved many lives. One sufferer said:

“I have suffered from anorexia nervosa for over 12 years and unfortunately during that time I have required many admissions to medical and eating disorder units”.

She names a number of them before going on to say:

“The admission to the Richardson was by far the most successful. I made such huge strides towards recovery and was the healthiest I have been since this all began.”

[Mrs Mary Glindon (North Tyneside) (Lab)]

In the light of what my hon. Friend says, and the fact that the unit’s model of partial hospitalisation of out-patient services has been so successful, does she not agree that NHS England should look at that model and perhaps reconsider its decision on the specification of specialised services?

[Chi Onwurah]

My hon. Friend makes an excellent point. Indeed, if the criteria on which this decision was made were publicly available, we could perhaps tell which models NHS England considered and what it hoped to achieve. Unfortunately, there is no transparency, which is one of the key issues.

Problems started in 2010, when commissioned adult eating disorder in-patient beds were tendered and the contract was awarded to Tees, Esk and Wear Valleys NHS Foundation Trust, although it did not then operate an in-patient unit. It quickly established a 10-bed unit in Darlington, but on a site with poor transport links to the north. For clarity for those Members who may not be familiar with the north, Newcastle is to the north of Darlington.

The award was a shock to many people, not simply because of the result, but because of the lack of consultation. I should like to ask the Minister a specific question: against what criteria were proposed services considered to be better than award-winning ones already on offer in the Richardson? If he does not know, I hope that he will promise to find out. Was cost the driving factor? What was the evidence basis for the centralising of these critical mental health services?

The National Institute for Health and Care Excellence guidelines specifically state that for severe eating disorders patients should be treated near their homes, with the support of family and friends. These are often young, vulnerable people, who are not yet independent of their family, either financially or emotionally. As one told me,

“Seriously ill anorexics are often cognitively impaired as a result of severe starvation and separation from loving support, together with that the challenge to dangerous and entrenched behavioural traits is often too much to bear.”

Given the lack of consultation, the north-east specialised commissioning group was instructed to strengthen its relationships with stakeholders and report any other substantial changes or developments to the NHS scrutiny committee.

NEEDAG, formed by carers and patients concerned about the threat to the Richardson, hoped that at least five of the beds in the Richardson would continue to be used by those in the north of the region, given overall regional demand. However, in April 2012, the commissioner increased the number of beds at Darlington to 15—again, without any consultation, scrutiny or performance data by which to make judgments. When challenged, I am told that the commissioner said they were not obligated to consult anyone. I hope that the Minister will correct them on this point. It is possible that the top-down reorganisation of the NHS instituted by this Government may have led to them forgetting their obligations under the NHS constitution.

When Darlington was full, commissioners started sending very ill patients out of the area, instead of to the Richardson, saying that every commissioned bed in England, no matter where it was, had to be filled before a patient from Tyneside could be sent to Newcastle. That is how we have arrived at the ridiculous and tragic situation of our national health service sending vulnerable Tyneside patients to Glasgow, Norwich and London when there are empty beds in the Richardson unit in the centre of Newcastle.

The impact on vulnerable young people of being separated from their families undoubtedly makes it more difficult to recover—hence the NICE guidelines. The cost of visiting for families is enormous, both financially and emotionally. One parent wrote:

“This will then have an effect on our family’s mental health as we are all struggling to come to terms with the condition and to help M recover. I would refuse to let M be admitted so far away from home and would rather give up my full time job to look after her in the familiar and safe surroundings of home.”

Another parent who fought to win a place for their daughter at the Richardson said:

“We were very angry to have been put in the position of having to fight for a bed for our dangerously ill daughter at a time when all our energy was needed to comfort and support her through a very difficult time. The added pressure and anxiety it caused the whole family was dreadful.”

It has been announced that the unit will be closed down, because it was said—cynically and cruelly—that it was not being used locally. If it was not being used locally, it was because NHS England was sending local people hundreds of miles away. Freedom of information requests submitted by NEEDAG show that Darlington’s 15 beds are full; that there are eight in-patients from the north-east in London, Sheffield, Leeds, Glasgow and Norwich; and that five patients have managed to win beds in the Richardson.

Social Care Budget Changes

Mary Glindon Excerpts

Wednesday 4th December 2013 Ministerial Corrections

The following is the answer given by the Minister of State, Department of Health, the hon. Member for North Norfolk (Norman Lamb), to the hon. Member for North Tyneside (Mrs Glindon) during Health Question Time on 26 November 2013.

[Mrs Glindon]

In the first two years of this Government, there was a frightening 66% increase in the number of people aged 90 and over coming into accident and emergency in a blue-light ambulance. When will the Minister accept that cuts to elderly care have increased pressure on the NHS, and are a major cause of the A and E crisis?

[Norman Lamb]

First, it is worth us all recognising that there is an increase in the number of frail elderly people in our society living with chronic conditions and that that is putting additional pressure on accident and emergency departments. The numbers have increased by over a million a year since 2010. However, the fact that there has been a reduction of 50,000 in the number of delayed discharges demonstrates that the social care system is doing incredibly well, and we should pay tribute to social care workers across the system who are doing so well to ensure that that improvement is taking place.

[Official Report, 26 November 2013, Vol. 571, c. 148.]

Letter of correction from Norman Lamb:

An error has been identified in an oral answer given to the hon. Member for North Tyneside (Mrs Glindon) on 26 November 2013.

The correct answer should have been:

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 26th November 2013 Commons Chamber

[Mr Hunt]

I do not think I have yet answered a question across the Dispatch Box from the hon. Lady, so I welcome her to her post. I just say that she should be careful what she chooses to turn into a political football, because hypothermia admissions, as Public Health England said in August, are very closely linked to the number of cold days over a winter and the length of that winter. We had a particularly difficult winter last year, but the number of winter deaths was nearly 20% higher under the previous Government, when the right hon. Member for Leigh (Andy Burnham) was Health Secretary.

[Mrs Mary Glindon (North Tyneside) (Lab)]

8. What assessment he has made of the effects of social care budget changes on attendances at accident and emergency departments.

[The Minister of State, Department of Health (Norman Lamb)]

Joining up health and social care is an absolute priority for this Government. The NHS will provide £900 million this year and £1.1 billion next year to support social care services with a health benefit and to promote joint working. In 2015-16, we will introduce a £3.8 billion pooled budget for health and social care. The number of bed days lost because of delays attributable to social care was nearly 50,000 lower in 2012-13 than it was in 2011-12.

[Mrs Glindon]

In the first two years of this Government, there was a frightening 66% increase in the number of people aged 90 and over coming into accident and emergency in a blue-light ambulance. When will the Minister accept that cuts to elderly care have increased pressure on the NHS, and are a major cause of the A and E crisis?

[Norman Lamb]

First, it is worth us all recognising that there is an increase in the number of frail elderly people in our society living with chronic conditions and that that is putting additional pressure on accident and emergency departments. The numbers have increased by over a million a year since 2010. However, the fact that there has been a reduction of 50,000 in the number of delayed discharges demonstrates that the social care system is doing incredibly well, and we should pay tribute to social care workers across the system who are doing so well to ensure that that improvement is taking place.[Official Report, 4 December 2013, Vol. 571, c. 13MC.]

Mitochondrial Disease

Mary Glindon Excerpts

Tuesday 25th June 2013 Westminster Hall

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

It is a great pleasure to serve under your chairmanship, Mr Davies. I am pleased to be able to lead a debate on this most important subject. I shall speak about mitochondrial disease, the devastation it causes and the new techniques developed by Newcastle university to prevent it. I declare an interest in that my father studied medicine at Newcastle, so I am a natural champion of that great university’s medical research and innovation. I am here primarily to champion not Newcastle university however, but the interests of my constituents struck down by mitochondrial disease, and indeed all those who suffer from it.

The subject is technical and I will attempt to be as clear as possible in setting out the arguments. Mitochondria are found in every cell in the human body, except red blood cells. They are the batteries generating energy for the cell. Mitochondria convert the energy of food molecules into the energy that powers the cell’s functions. About 200 children are born every year with a mitochondrial disease. Such diseases are passed from mothers to their children and are caused by faulty mitochondria. Like all DNA, the DNA in mitochondria can mutate and mothers can pass those mutations on to their children. Faulty mitochondria mean that the cells are unable to function normally and the diseases caused by them can have a devastating effect on families. The diseases tend to affect parts of the body that use a lot of energy, such as the brain, muscles, nerves, liver, kidney and heart, and vary widely in severity, from life-threatening to having few or no obvious symptoms. Symptoms vary, but can include poor growth, muscle weakness, tiredness, poor co-ordination, and sensory, respiratory or cognitive problems.

There are no effective treatments available for serious mitochondrial disease. When the cells go wrong, it can result in serious conditions, including blindness, fatal heart failure, liver failure, learning disabilities and diabetes, and can lead to death in early infancy. Prevention is the only realistic option. In 2010, Newcastle university scientists, with funding from the Wellcome Trust, pioneered research into variations of in vitro fertilisation procedures that could prevent the transmission of the genetic mutations that cause these devastating disorders. The techniques use part of an egg donated by a healthy individual, to replace the faulty mitochondria of the affected mother. The intention is to give affected families a chance to have healthy children that are genetically related to them, but born free of mitochondrial disorders. Such techniques are not currently permitted in the UK, but legislation allows the Government to introduce secondary legislation that would allow the treatments to be used.

Mitochondrial disease can blight families for generations, because, as I said, it is passed from the mother to child during pregnancy. The techniques could put a stop to it, by preventing the faulty mitochondria from being passed to the embryo. Mitochondrial disease affects about 6,000 adults in the UK. In my constituency, four families—Bumstead, Cass, Bland and Mahmood—suffer from mitochondrial disease. Although every effort is being made to help them, there is no cure. For example, Lily Cass, who is in her 70s now, has five brothers and three sisters, and one brother who died at 56. They are all affected in different ways by mitochondrial diseases, and some more severely than others. Some days, Lily can hardly move due to lack of energy caused by her faulty mitochondria, which takes all her strength away. She has four children, including a daughter, who is likely to pass the disease on to her children. She worries about that all the time.

For those women and their families, the most important help we can offer is potential treatments, to prevent the next generation of patients from being affected. The opportunity to have their own children free of disease is something that the patients understandably want.

As with all such advances, it is right that the ethics are properly considered before techniques are adopted, and the Minister will be aware that concerns have been raised. There are those who argue that the techniques create children with three parents, but the embryo would carry only a small number of genes from the donor—just 13 out of 23,000, or 0.056% of the genetic material. How much of a parent is that? The function of the 13 genes is restricted to powering the mitochondria; they do not affect personal characteristics such as eye or hair colour, or behaviour.

Last June, the Nuffield Council on Bioethics produced a report that found that the technique would be an ethical treatment option for affected families, as long as research showed that treatment was likely to be safe and effective, and families were offered full information and support. The council’s report found that no strong cultural or social emphasis is generally placed on mitochondrial inheritance as a specific element of personal identity. Many of the social and biological aspects that typically imply a “parent”, and may be relevant in egg donation for reproduction, do not apply to mitochondrial donation. The council therefore suggested that if the treatments were made available, mitochondrial donors should not have the same status in regulation as reproductive egg donors.

[Mrs Mary Glindon (North Tyneside) (Lab)]

My hon. Friend makes a good case about the serious effects that the diseases resulting from the condition have on families. If we think forward to any children who are fortunate enough to be born without disease because of the treatment, would there be any possibility that they might consider themselves to have three parents, whether or not they had any traits from the third one? Has thought been given to how that would be considered if it should happen?

[Chi Onwurah]

My hon. Friend is right. There has been some debate about the status not only of the donors but, most importantly, of the children. The Nuffield Council on Bioethics says that families must be offered full information and support, and that must also apply to the children, so that they understand the scientific nature of the very limited gene inheritance from the donation.

If mitochondrial donors were not given the same status as reproductive egg donors, it would be not legally required for them to be identifiable to people born from their donations. The council concluded that the proposed treatments would be a form of gene therapy that would permanently cure the disease in future generations. Changes resulting from the replacement of mitochondrial DNA would be passed on not only to the resulting children, but to the descendants of any girls born from the techniques, via their eggs.

Dr Geoff Watts, who chaired the inquiry, said:

“We understand that some people concerned about the idea of germline therapies may fear that if such treatments for mitochondrial gene disorders were approved, a ‘slippery slope’ would be created towards comparable alterations to the nuclear genome.”

That is an understandable fear, but he went on to make a very important point:

“However, we are only talking about the use of these techniques in the clearly-defined situation of otherwise incurable mitochondrial disorders, under strict regulation.”

In 2012, the Human Fertilisation and Embryology Authority—HFEA—launched a public consultation on mitochondria replacement. It interviewed almost 1,000 people, and a further 1,800 completed questionnaires. It also organised public workshops around the UK and spoke to individuals affected by the diseases, to gauge their views. It published the results in March of this year, and found broad public support for the use of the technique.

The HFEA asked four main questions about attitudes to the gene treatment of mitochondrial diseases. When asked about attitudes to the selection of embryos based on testing, 65% of those questioned were positive or very positive, with only 8% negative. When asked about altering the genetic make-up of an egg or an embryo, 56% were positive or very positive and only 10% were negative. Attitudes to the use of genetic material from a third person showed that 44% were positive or very positive, with only 15% negative. The HFEA therefore advised the Government that there was broad support for mitochondrial replacement being made available to families at risk of passing on a serious mitochondrial disease. It also advised that if treatment were to be authorised by Parliament, it should be under certain conditions, such as its being available only in licensed clinics.

The HFEA recommendations have been widely welcomed by campaigners. For example, Dr Marita Pohlschmidt, director of research at the Muscular Dystrophy Campaign, said:

“We welcome this outcome. There is currently no effective treatment available for mitochondrial diseases, and at this time, prevention remains our strongest option. By taking forward research into pro nuclear IVF, we move towards giving women living with these devastating and unpredictable conditions the choice to bear their own unaffected children. This technique does involve a step into new scientific territory. But it is a calculated, specific step with the sole aim of preventing a potential fatal condition from being passed down to the next generation, where possible.”

We are now waiting for a decision from the Government about whether secondary legislation that will allow the techniques to be licensed for use in patients will be introduced in this parliamentary Session. It has taken years to get to this stage, and it is important that progress does not stall because families are waiting for this. Introducing regulations now will ensure there is no avoidable delay in the treatments reaching affected families once research is completed and the HFEA considers there to be sufficient evidence that the techniques are safe and effective.

I called this debate to hear an update from the Minister on the progress that she has made, and to ask when we can expect a decision, and when we can expect to see legislation.

Children’s Heart Surgery

Mary Glindon Excerpts

Wednesday 12th June 2013 Commons Chamber

[Mr Hunt]

I can confirm that a thorough process of learning the lessons will happen. As I said earlier, we must learn big lessons about the time it takes to make very important service changes in the NHS, not just in children’s heart surgery but in many other areas. We need to learn those lessons. The person who was responsible for the JCPCT, Sir Neil McKay, is no longer responsible and has retired from the NHS. We need to look at everyone who was involved in the process and see where the right calls were and were not made. If we do not, we will never be able to make important changes in the NHS—and we have a big responsibility to make those changes.

[Mrs Mary Glindon (North Tyneside) (Lab)]

The proposed reconfiguration of children’s heart surgery has gone on for years. Meanwhile, children are suffering and even dying. Why cannot the Secretary of State have a more rigorous timetable based on the lessons learned from the review so far?

[Mr Hunt]

That is what I absolutely want to do. One huge frustration for those on both sides of the House has been how the process has dragged on. If I could have come to the House today with a detailed timetable, I would have. Although we had internal access to the report before today while I considered its findings and reached a judgment, we believed that it was necessary for external stakeholders to see the report and give their view of how the timetable should proceed. That is why I have given NHS England until the end of July to come back with that timetable.