Mitochondrial Disease

Chi Onwurah 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.

[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate the hon. Member for Newcastle upon Tyne Central (Chi Onwurah) not only on securing the debate but on highlighting the impact of mitochondrial disease on families, and the potential of the new techniques to prevent suffering and premature death and bring hope to the many families who seek to prevent their children from inheriting these sorts of diseases in the future. The hon. Lady does everyone a service in raising the issue. It is a controversial issue, and she has asked me some direct questions.

The Government fully recognise the sensitivity of the issues, and since researchers first approached my Department in 2010 requesting that we make regulations, we have been collecting expert opinion and public views. I will be up front, and say straight away that the chief medical officer has given the issue her careful consideration in the light of the advice and the findings of the Human Fertilisation and Embryology Authority, following the consultation period. I anticipate that she will set out the Government response before the summer recess and, even with my poor mathematics, I can work out that that should certainly be within the next few weeks.

I emphasise that the Department of Health has given careful consideration to the advice and information passed to us by the Human Fertilisation and Embryology Authority on 28 March. We have also taken account of other published reviews, such as the one in 2012 by the Nuffield Council on Bioethics in its report on “Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review”.

Our considerations are being led by the chief medical officer. It is right, if we are to move forward, that she should be the person to lead on the proposals—she may reject them—and, as the CMO, to make any announcement and to be at the forefront of any decision. I am told that her considerations are almost complete.

We recognise that allowing the treatment would give an opportunity for women who carry mitochondrial disease the choice—it is important to state that if regulations are introduced, they would have a choice—to have genetically related children without the risk of serious diseases; I am grateful to the hon. Lady for giving examples of those diseases, and it is the understandable desire of many parents, especially women, not to allow them to be inherited by a child.

This issue is about giving women a choice on whether or not their DNA is put into another woman’s egg. In effect, a woman would be hijacking the batteries, because mitochondria are the batteries that provide the energy, and when they do not work, they cause these diseases. This is not about any kind of genetic engineering, about which people would rightly be concerned.

When the science and the real benefits are explained to people, and the fact that the child who is born has the same genetic background as their mother, they will see that the press have perhaps been a bit misleading in saying that, if it all goes ahead, some children will have three parents. They really will not: they will have their biological mother and father. It is simply that the batteries have been taken from another woman’s egg so that they are sure that any child does not bear some of the very serious diseases that often lead to premature death.

We recognise the concerns that have been raised about whether such techniques are a form of germline or genetic modification in human beings and about whether it would be ethical to allow them in treatment, and those considerations are important. Technically, the resultant embryo would be formed from the eggs of two women, but the genetic material that relates to the child’s characteristics would have been removed from the donor egg, so the child will have genes from the patient and her partner—in other words, from the child’s mother and father—but they will also have healthy mitochondria.

[Chi Onwurah]

I thank the Minister very much for the constructive form of her response and for the new information. Her point about the child not having the genetic material is very important. Will she emphasise that the process is nothing like changing the eye colour or height of the unborn child? An important point to get across is that there is no genetic modification in that sense.

[Anna Soubry]

I absolutely agree. I am perhaps putting the subject in simple terms, but that is how it is. This is actually about the fact that if someone is effectively carrying this particular disease, the mitochondria—the batteries that charge things—are replaced to make sure that they do not have these diseases. Because the mitochondria cannot be taken out of the mother’s egg, a donor egg has to be found. The DNA is removed from that egg and the mother’s DNA is put in—taking those good healthy mitochondria or the batteries—so that she has a healthy egg that, in due course, can be fertilised by the father in the normal way. It is absolutely right that the genetic make-up of a resultant child will be the mother’s and father’s. That does not of course guarantee that the child will have the same colour eyes as their mother, as we all know, especially me as a blue-eyed mother with two brown-eyed daughters. As ever, Mr Davies, I digress, but this is a serious matter.

I pay great tribute to researchers at the International Centre for Life in Newcastle. The hon. Lady should not hesitate to do so, whether her father was there or not, because it is a fine institution. They have been developing their groundbreaking expertise for many years. In anticipation of significant advances in this field, the Human Fertilisation and Embryology Act 1990 was amended in 2008 to introduce a regulation-making power that, if implemented, would enable mitochondria replacement to take place in treatment.

The powers are therefore there, but it is important to say that they would not be implemented in some secondary way. I understand that the matter would have to come to this place and that, in any event, there would be a debate. That is my understanding, but if I am wrong I will correct that, as you would expect, Mr Davies.

In 2010, Newcastle researchers approached the Department of Health and, in the light of their progress, requested that we consider introducing regulations to allow mitochondria replacement in treatment. In response, the Department asked the Human Fertilisation and Embryology Authority to get independent advice about the safety and efficacy of the techniques.

An expert advisory group was established, and a report was passed to the Department in spring 2011. It found that the techniques were not unsafe, but it recommended that further research be undertaken. After careful consideration of that report, the Department of Health and the Department for Business, Innovation and Skills commissioned the HFEA in autumn 2011 to undertake a comprehensive set of public consultations to identify the public’s views about and understanding of this complex and sensitive issue. That consultation was held between July and December last year. It looked at the social and ethical issues raised by mitochondria replacement, as well as addressing a range of practical regulatory issues.

In collaboration with Sciencewise, which has a key role in helping the public to understand complex scientific issues, the HFEA took many different approaches to ensure that it gathered public views on the issue. It held workshops with members of the public, tracking their views over time and in response to new information. It ran what is called a representative survey, an online public consultation, two public meetings through which interested groups and individuals could express their views, and a focus group with families who are personally affected by mitochondrial disease, because their views are extremely important.

The HFEA report was published on 28 March and was passed to the Department. It provided us with three separate strands of advice: the outcome of its public dialogue and consultation; a scientific update on the safety and efficacy of the new techniques; and the issues to consider in introducing an appropriate regulatory framework. The public consultation indicated, overall, that there is general support for allowing the treatment techniques to be used, as long as they are safe and carefully regulated.

We appreciate and recognise, however, that a range of views, not all of which were in favour of a change in regulation, was strongly expressed through the consultation. A significant response came from the religious community, which was not in favour of allowing the techniques, whereas the scientific community, bioethics groups and patient and family groups were in favour.

The expert panel, which was reconvened by the HFEA, concluded that although there continues to be nothing to indicate that the techniques are unsafe, further research on some specific aspects should be undertaken. All the recommended research is currently being undertaken either in Newcastle or Oregon in the United States. The expert panel expressed the view that insufficient research is currently available to recommend one particular technique above another. It also recommended long-term follow-up monitoring of any children born as a result of the techniques.

I conclude where I began by saying that we anticipate that the CMO will announce the Government’s response very soon—before we break for the recess—which is at least some good news. As the hon. Lady said, the issue has been ongoing for several years, so it is important to find out whether it will reach the sort of conclusion that she wants, and we anticipate that that will be very soon.

Oral Answers to Questions

Chi Onwurah Excerpts

Tuesday 16th April 2013 Commons Chamber

[Norman Lamb]

I understand that the manufacturer of ataluren has applied for conditional approval from the regulatory authorities. We await the outcome of that process, but I am afraid that I cannot give a time scale for it.

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

Eculizumab is a high-cost drug that makes a profound difference to the lives of people with a rare kidney disorder, yet the Department has rejected the recommendation of the Advisory Group for National Specialised Services to make it available to all patients, instead referring it to the National Institute for Health and Clinical Excellence, which will delay any decision by at least a year. Will the Minister meet me and specialists from my Newcastle constituency to discuss how we can ensure those patients are not adversely affected by this delay?

Oral Answers to Questions

Chi Onwurah Excerpts

Tuesday 15th January 2013 Commons Chamber

[Norman Lamb]

As a Member of Parliament for a rural area with an elderly community I understand the hon. Gentleman’s concerns, but allocations have to be based on solid evidence. The area where we do not have the evidence is on community services. The data will start to be collected on that and we will therefore be able to demonstrate whether community services cost more in rural areas, as I suspect they do. If that is the case, the allocation formula will be able to reflect that.

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

The north-east suffers some of the worst health outcomes in the country, despite having excellent care services. On many occasions, the Government have said that they are committed to reducing health inequality, specifically in the north-east. Why then did Ian Dalton say that using the new advisory committee on resource allocation formula

“on its own would have…moved resources from areas where people…have worse health outcomes to those where people have much better outcomes”.

Does that not show that the Government have no commitment to reducing health inequalities?

[Norman Lamb]

I think the news on the allocations for public health budgets is actually a remarkably positive story. Every part of the country will see real-terms increases in funding for public health. This is an historic moment where we shift the emphasis away from repair to prevention of ill health. The hon. Lady’s own area will see real-terms increases. Across the country as a whole, there will be an average of 10.8% over two years real-terms increases in public health funding. I am very proud that the Government are doing that.

Oral Answers to Questions

Chi Onwurah Excerpts

Tuesday 27th November 2012 Commons Chamber

[Dr Poulter]

As my hon. Friend is aware, from next year the NHS Commissioning Board will have responsibility for commissioning local services and for setting the funding formula. I would be happy to raise his issue with the board, because it is true that, historically, the capitation formula has not recognised the fact that there are a lot of older people in rural areas and further distances to travel. The previous Secretary of State, my right hon. Friend the Member for South Cambridgeshire (Mr Lansley), took steps towards reviewing the formula and I assure my hon. Friend that the Government will be looking into it further.

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

8. Whether he has put in place measures to ensure that clinical commissioning groups do not become for-profit organisations.

[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

Clinical commissioning groups were established in statute. They are, accordingly, public bodies and cannot become private, for-profit organisations.

[Chi Onwurah]

I thank the Minister for that answer. As we know, most GPs go into medicine to make people well, but now that her Government have made the NHS subject to competition law there is real fear in Newcastle and across the country that they will find themselves obliged to turn a profit from their patients. Is this not, as Professor Ham of the King’s Fund has said, a further step towards privatisation?

[Anna Soubry]

No. I would urge the hon. Lady, if I may, to exercise care when claiming that this is a privatisation of the NHS. It certainly is not. GPs’ surgeries, such as those in her own constituency, have always been private businesses. A GP surgery in the hon. Lady’s own constituency, where, in my view, she has been engaged in considerable scaremongering, was put out to tender under rules introduced by the previous Labour Government. Indeed, it was the previous Government who brought in privatisation to the NHS on a scale that we had never seen before in this country. I am proud that it is this coalition that is making sure that the tariffs are fair and no longer favour the private sector.

Oral Answers to Questions

Chi Onwurah Excerpts

Tuesday 23rd October 2012 Commons Chamber

[Anna Soubry]

That is important. I have recognised in the short time in which I have been in my post that there is often disparity across the country and in certain areas, frankly, the service is not as good as that in others. One of our aims is to ensure that regardless of where someone lives they will get good treatment from the NHS.

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

14. What steps he has taken to ensure that children with profound multiple learning difficulties have their health care needs met while at school.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

We are working with the Department for Education to introduce integrated commissioning of education, health and social care for children and young people with special educational needs and disabilities. This will ensure that children with profound multiple learning difficulties can get the care they need while at school.

[Chi Onwurah]

I recently visited Hadrian school in my constituency, which caters for children with severe learning difficulties and profound and multiple learning difficulties. I saw fantastic teachers and carers doing fantastic work with fantastic children, but I also saw in the reception classes that more children with more severe health needs were entering the school. What guarantees can the Minister offer that funding will be in place for those children in five or 10 years so that Hadrian school can plan now for their needs?

[Dr Poulter]

The hon. Lady makes a good point. We know that the Government are putting more money into the NHS. However, this not just about putting in more money, but about how we deliver care in a more joined-up way. At the moment, education works too much in its own silo and the NHS works in another. The Government’s new commissioning arrangements will follow the more joined-up approach that we need to take properly to meet the needs of children with learning disabilities in the round. That must be a good way forward in properly joining up education and health care.

Oral Answers to Questions

Chi Onwurah Excerpts

Tuesday 12th June 2012 Commons Chamber

[Mr Burns]

Yes. I hope I can reassure the hon. Gentleman. As he may be aware, the Advisory Committee on Resource Allocation is currently reviewing the formula by which funding is allocated. We await its recommendations and will look at them carefully before making any announcements.

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

The reason the funding formula is causing such concern in the north-east is that we have some of the worst public health outcomes in the country, including on obesity, liver disease, vascular disease and so on. Given that there is to be no change to the funding formula, why has the Faculty of Public Health said that the inequalities will get worse because of the reforms the Minister proposes?

[Mr Burns]

No. I do not think the hon. Lady is right in that—[Interruption.] As she will appreciate if her hon. Friends on the Opposition Front Bench would just hush and listen for minute, there will be allocations for public health, but there will also be allocations for acute care in clinical commissioning groups. Those will be done to reflect the needs of areas up and down the country. No one area will be penalised at the expense of another. What is more, they will be done on the basis of independent advice, as I said to the hon. Member for Chippenham (Duncan Hames) in my earlier response.

Health and Social Care Bill

Chi Onwurah Excerpts

Tuesday 20th March 2012 Commons Chamber

[John Healey]

I had not intended to speak in this part of the debate but I was so underwhelmed and unimpressed by the Minister that I felt moved to do so. It is interesting to follow the right hon. Member for Bermondsey and Old Southwark (Simon Hughes). I think he was offering his support to the Front-Bench team, but often it was not entirely possible to be certain. One thing he talked about was quite telling—the flaws in the systems we as a Government tried to put in place after we did away with community health councils. The Secretary of State and his colleagues were very critical about those arrangements when they sat on the Opposition Benches. One might have hoped that they would make their criticisms and learn the lessons and not repeat some of the mistakes that we certainly made in the arrangements for a strong patient voice and strong patient representation after the community health councils, but this evening’s debate and what we have been presented with in this final stage of the Bill make it quite clear that that is not the case.

At the heart of the proposal in the White Paper, which was co-signed by the Prime Minister and the Deputy Prime Minister in July 2010, was the proposition to put patients at the very heart of the NHS. That was common ground and was supported by many. It was a promise that really went to the heart of the proposition about the NHS changes. Despite that promise, it is clear that patients are not at the heart of the NHS but at the margins. The slogan for patients that there will be no decision about me without me is simply that—a slogan. I remember that early in the autumn of 2010 patient groups who were trying to come to terms with the plans were saying—quietly at first but more loudly later—that the arrangements in the White Paper and then in the Bill when it was first introduced in the House would lead to less involvement of patients in future, not more. Since that point, the Bill has had more than 1,000 amendments—some 374 amendments were made in the other place and we have four hours to consider those amendments tonight—but looking at the Bill now I can see very little difference from the position as it was first expressed almost 18 months ago, when it first caused concern to those patient groups.

In this area of all areas in which party politics should not be part of provision for a strong patient voice, representation and safeguarding, I want to take the Government at their word. They said that they wanted to set up at the heart of the NHS a strong independent voice for patients. The House needs to consider what that means, and to do that we need to go back to first principles.

It seems to me that there are four principles or characteristics which must serve as yardsticks by which to measure whether an organisation can be a strong, effective voice for patients. The first is independence. In order to function as a strong, fearless voice for patients, any organisation that acts on their behalf must be independent of commissioners, independent of providers and independent of regulators because part of its job on behalf of patients may well be to stand up to and criticise the providers, the commissioners or the regulators at some point in fulfilling its duties. The arrangements that the House is asked to approve tonight fail that first basic test of an effective organisation for patients.

The second principle or yardstick is representation. If the organisation is to be an effective representative voice for patients, clearly it must have some representation system and accountability to the people on whose behalf it acts and speaks. Again, on that test, the arrangements that we are asked to approve tonight fail. The third principle or test of an effective patient organisation is whether it is rooted or grounded in good local information and monitoring. Again, nothing in the arrangements and nothing I heard from the Minister, who has now left the Chamber in the middle of the debate that he opened, gave me any reassurance that that third principle or test is met in the arrangements.

The fourth test or principle for an effective, independent organisation surely must be adequate resources. There are serious questions over the nature, the level and the system for the resources that will allow such an organisation to do the job that we in the House are legislating for it to do on behalf of patients.

At a national level first, I say to the Secretary of State as his junior Minister is not present that setting up HealthWatch England as a sub-committee of the Care Quality Commission just does not cut it. It is implausible that a body can act impartially and fearlessly on behalf of patients if it is a sub-committee of the care regulator. How can it be, and equally important, how can it appear to be independent and authoritative, if it is set up within the administrative, organisational and financial embrace of the CQC? The CQC itself is clearly one of those organisations that HealthWatch England and local healthwatch bodies may need to stand up to and criticise.

There was an amendment in the other place to give the Government an opportunity to change their mind and set up HealthWatch England as an independent statutory body. That Labour-led, Labour-moved amendment was defeated in the other place, I am sad to say, by a combination of Conservative and Liberal Democrat peers.

Secondly, on the local healthwatch organisations, I think I understood what the Minister said earlier—that the Bill introduces a statutory duty on local authorities to set up a local healthwatch organisation. Placing a statutory duty on a local authority to carry out a particular activity is very different from creating a statutory basis for that organisation to operate in its own right. How will that arrangement at local level ensure independence, representativeness, good local links and resources—the four things that I would argue are the essential elements of an effective organisation on behalf of patients? On the fourth point, which is about resources, I may have missed something in today’s debate or in the debate at the other end of the building, but we still have not had clear answers to the following questions. I would be grateful if the Minister answered these questions when he deigns to return to the Chamber to respond to the debate, unless the Secretary of State will be doing that himself.

First, will local healthwatch organisations be funded directly by the Department of Health? Secondly, if funding will go via local authorities, what will the mechanism be for that funding? Thirdly, will funding for local healthwatch organisations be consistent across local areas so that patients, wherever they live, can be confident that they have a strong local representative organisation working on their behalf? Otherwise, this is legislation for a local lottery in patient representation and the strength of local patient voices.

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

I congratulate my right hon. Friend on the many excellent points he is making. Is it his understanding, as it is mine, that all the local healthwatch activities could be carried out by private sector—and therefore, for-profit—bodies? Does he feel that providing the strong, independent, representative voice for local people should be a profitable activity for private sector organisations?

[John Healey]

My answer to my hon. Friend’s second question is no, and I do not know the answer to her first question, which should really be directed to the Minister. We need an explanation of how the system for setting up, or in effect franchising, local patient organisations will be carried out, what sort of framework that will take place in, and what standards, if any, will be required for the way they are set up and run.

--- Later in debate ---

The centre has had to reduce spending on surveys, which often form the basis of planning health care interventions. The general lifestyle survey, for example, carried out every year by the Office for National Statistics on behalf of Government Departments, has had its funding withdrawn by the NHS Information Centre, according to information that has been supplied to me and other hon. Members. The survey provides statistics on public health issues, which are dear to my heart and the hearts of many Opposition Members.

[Chi Onwurah]

I congratulate my hon. Friend on the important points he is making, particularly his last point on public health. He and I represent constituencies in the north of England that suffer from great health inequalities. Does he agree that knowing and understanding those health inequalities is an essential part of being able to address them?

[Grahame M. Morris]

I agree with my hon. Friend and am grateful for her intervention. Those points were exercised in a recent debate in Westminster Hall. The basic point that I seek to make—I will finish on this—is that in order to plan effective health interventions, we need an effective and reliable evidence base. I would like assurances from the Minister that the necessary funding will be in place to ensure that that is delivered as a consequence of that measure in the Bill.

NHS Risk Register

Chi Onwurah Excerpts

Wednesday 22nd February 2012 Commons Chamber

[Andy Burnham]

I did not launch the biggest ever reorganisation of the national health service, but I will come to the hon. Gentleman’s point in a moment, if he is patient.

The Government have not given the House the courtesy of their own assessment of the risks that they are running with the NHS before they ask us to approve the biggest ever reorganisation at a time of financial challenge. It is quite simply disgraceful.

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

I thank my right hon. Friend for giving way and for his excellent opening remarks. He knows that every year 37,000 people die earlier in the north of England because of health inequalities. Does he agree that as a result of the Government concentrating on a top-down reorganisation and making primary care trusts put aside billions for this reorganisation, risks to health inequalities can only grow?

[Andy Burnham]

Those on the Government Front Bench are laughing. They will not be laughing when I have finished my speech.

More than 150 experts in child health wrote to a newspaper last week to say that health inequalities among children will widen as a result of the Bill. Are Ministers listening? No. It is disgraceful that they behave as they do.

Health Inequalities (North-East)

Chi Onwurah Excerpts

Tuesday 24th January 2012 Westminster Hall

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

As a Member of Parliament, my priority must be the health and well-being of my constituents, and many MPs feel the same. Regional health inequalities are of profound concern and strike at the heart of our sense of fairness and equality: people are suffering unnecessarily in this country just because of the region in which they are born, and that undermines not only the idea that we are all in this together, but our very sense of national unity. At a time when the Scottish Government are seeking independence, does it help the case of those who believe in the Union, as I do, that a Brit born in Glasgow is likely to die 14 years earlier than one born in Chelsea?

As we shall see, health inequality is a complex subject, but the key question for the Minister is, do the Government recognise regional health inequalities in their health funding? I look forward to the Minister’s reply.

I was born in Wallsend and grew up in Newcastle. In Newcastle, we are more likely to die early from cancer, heart disease and stroke. We tend to die younger, are more obese as children and are more likely to die from the cold as pensioners. We suffer more from the diseases of our industrial legacy, such as asbestosis. Last year in Newcastle, there were 89 early deaths from heart disease and stroke—19 more than the national average. Disability-free life expectancy for women in Newcastle is 3.3 years shorter than the English average. For men, it is 4.9 years shorter. Not only do we live shorter lives, but more of those shorter lives are spent with a disability.

Such inequalities are not unique to Newcastle. Thanks to the public health observatories set up by the previous Labour Government, we have a comprehensive view of the inequalities in health across the country. Every year, 37,000 people in the north die earlier than their counterparts in the south. That is enough people to fill a modern football stadium. A report published in the British Medical Journal last year said that the excess toll of ill health and disability in the north is

“decimating”

the region

“at the rate of one major city every decade”.

In Newcastle, one in 25 adults claim incapacity benefits for mental illness. That is four times the rate in the Secretary of State for Education’s constituency. Across the river in Gateshead, we have one of the highest levels of obesity in the country, and on the Wear, the 2010 chlamydia rate for 16 to 24-year-olds was almost three times the rate in Surrey.

Of course, there are inequalities within regions and within cities. The Institute for Ageing and Health at Newcastle university has produced an interesting map of the Tyne and Wear metro, which shows how life expectancy reduces by more than a decade as we ride from Ponteland north to Byker.

Although I see mainly north-east MPs here today, this is an issue for the whole country, for the Exchequer and for the Prime Minister, but given that the Prime Minister press-released yesterday’s visit to Leeds as a visit to the north-east, it is clear that his grasp of geography still leaves something to be desired.

Every year, health inequalities cost £31 billion to £33 billion in lost productivity, up to £32 billion in lost taxes and higher welfare payments and £5.5 billion in additional health care costs, so this is a problem for us all. It is important to emphasise that the poorer health in the north-east is not a function of the level of health care. The Newcastle Hospitals NHS Foundation Trust is in the top 10% of best-performing trusts in the UK. We have the Campus for Ageing and Vitality, the Centre for Life, the Great North Children’s Hospital, the Northern Institute for Cancer Research and the Northern Vascular Centre and Freeman Hospital’s Cardiothoracic Centre. They are world-class institutions.

Evidence going back six centuries tells us that the root causes of health inequalities are economic. The BMJ report that I mentioned earlier says:

“Social and economic factors are extremely reliable predictors of health”

If more resources are put into an area, its health improves, but if they are taken out, its health declines. The north-east has the lowest income per head in England, and in Newcastle, a quarter of the city’s neighbourhoods are in the 10% most deprived in the country. So the poorest are hit by a double whammy. Not only does poverty impact on their quality of life, but it reduces their life expectancy and makes them susceptible to a host of diseases.

It is also ironic that in the north-east we live with the health consequences of industries that were long ago allowed or even encouraged to die. Just last month, Cabinet papers showed how Margaret Thatcher’s Cabinet discussed the managed decline of the north. We are still dealing with that. Last year’s figures from the Health and Safety Executive show that rates of death from mesothelioma in the north-east are by far the highest in the country, and although we address the symptoms, we can do nothing for the causes. But in other areas we can and are tackling the causes.

The north-east has the highest number of mothers smoking during pregnancy—22%—so Fresh, a local charity, is working with local primary care trusts to make smoking history for children. Higher than average alcoholism in the north-east has resulted in excessive numbers of hospital stays for alcohol-related harm, so a campaign to reduce alcohol dependency is supported by local press, such as the Newcastle Journal and the Evening Chronicle. But I am worried that essential work to improve health in the north-east is threatened by measures that the Government are taking.

Under Labour, health funding doubled in real terms, waiting times reduced and death from heart disease and stroke went down by a massive 40%. The previous Government also worked hard to tackle poverty and its associated evils—poor housing, high fuel costs and low wages—but the inequalities remained. So although the health of people on low incomes improved significantly, the health of those on high incomes went up by the same amount or more. In some areas, health inequalities decreased. For example, the infant mortality health inequality for manual workers fell by almost a third to 12%. To understand why that is so, we must go back further than the previous Labour Government.

The Thatcher Government refused to acknowledge the relationship between poverty and ill health. The Department of Health was prohibited from using the phrase “health inequalities”. It had to talk about variations in health, and they were always couched in terms of its being people’s fault because they led such an unhealthy lifestyle.

Labour’s experience with infant mortality shows that targeted interventions can work. Infant mortality is really interesting, because it is a sensitive measure of immediate health, which is susceptible to direct interventions, such as the ones the Labour Government introduced, including improving the health of expectant mothers through the pregnancy health grant and of babies through Sure Start.

As the Labour-commissioned Marmot review demonstrated, to reduce health inequalities we cannot just focus on lifestyle factors; we need to address their social and economic root causes.

[Guy Opperman (Hexham) (Con)]

I have listened carefully to the hon. Lady’s arguments, and I congratulate her on this debate. It is good to see so many hon. Members from the north-east in the Chamber. She talks about inequalities, and referred to Surrey’s excellent mortality rates and alcohol abuse recovery rates compared with the north-east and Scotland—people in Glasgow have the lowest life expectancy rates in the country. Does she support the proposal for an alcohol Act that would statutorily restrict alcohol availability?

[Chi Onwurah]

I thank the hon. Gentleman for his intervention. As I said, the causes of health inequalities are complex. Alcohol dependency certainly varies significantly throughout the country. We need, and we are seeing, targeted campaigns to address that. I hope that the Government will introduce concrete measures to address alcohol dependency, such as legislation and a minimum price if that is appropriate.

Labour prioritised addressing health inequalities. We could not overcome the legacy of inequality in 13 years, but we made real progress, as the figures for infant mortality show. However, that is set to change. There are three main ways in which the Government are undermining work to reduce health inequalities.

First, the Government have changed the funding formula, and reduced the component designed to address health inequalities. I have been in Parliament for 19 months, and I have raised this matter directly with Ministers four times, not counting written questions. I am hoping it will be fourth time lucky for receiving a direct answer. Will the Minister confirm that in 2010 the Secretary of State decided, against the advice of the Advisory Committee on Resource Allocation, to reduce the health inequalities component of the primary care trust target funding allocation from 15% to 10%? Two weeks ago, during an exchange on the Floor of the House, the Secretary of State cited a 2.8% rise in funding when I asked him about changes to the funding formula. Will the Minister address the change to the formula, rather than the overall increases that the Government claim?

During a speech on the Floor of the House in December 2010, I asked the Secretary of State to confirm that more will be invested in health services for every man, woman and child in Newcastle for every year of the comprehensive spending review as the Government claim that they are increasing NHS spending. He declined to do so, so will the Minister step into the breach?

Clearly, if funding is changed to reduce the amount associated with health inequalities, the north-east will lose out. The Minister will say that the Government have ring-fenced public health spending and handed it over to local authorities. She may refer to the public health outcomes framework, which was published yesterday, just in time for today’s debate, and is very interesting reading. It includes 66 measures, which will be monitored, but they cannot distract from the assault on public health that the Government’s wide-ranging cuts represent for local authorities. For example, cuts to fuel poverty reduction programmes such as Warm Front will leave pensioners in Newcastle colder and more vulnerable to illness. Cuts to area-based grants such as the Supporting People programme mean there will be less investment in support services for those with mental health issues.

The second way in which the Government are undermining work to address health inequalities is the top-down, unnecessary and destructive health care reforms. It is estimated that they will cost £3 billion, and we now know that in the north-east the NHS has been asked to put aside £143 million for those organisational changes. The Government claim that efficiencies will make up for that, but the service is already being asked to meet the 1.5% efficiency cuts challenge at a time of wholesale reorganisation. As the Select Committee on Health said today, it is incredibly difficult, if not impossible, to make such efficiency savings when everything is changing.

In the north-east, our strategic health authority and primary care trusts are being abolished. Funding will be in the hands of GP consortia. Newcastle already has a pathfinder consortium in place. Newcastle Bridges GP commissioning consortia covers most of the city, and has shown that it is keen to work with other stakeholders across the city to promote public health, but it is having to make it up as it goes along in the face of huge uncertainty and change in the public sector and in the third sector, with unprecedented local authority cuts, watched over by an eager private sector that is keen to take advantage of the profit-making opportunities that the Prime Minister and the Health Secretary have promised.

A recent letter to the Health Service Journal, signed by more than 40 directors of public health and more than 100 public health academics, argued that the Bill will increase health inequalities, not reduce them. If the Government will not pay attention to what the Opposition say, perhaps they will pay attention to what the profession says. Michael Marmot told the Health Committee that there is little evidence that the health premium will reduce inequalities. Indeed, he said that it is most likely to increase them. Seven former presidents of the Faculty of Public Health have said that the Bill will “exacerbate inequalities”.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to the Chamber. I am a Member not for the north-east, but for Northern Ireland, where health is a devolved matter, but she is expressing concerns felt by many people throughout the United Kingdom, even where such matters are devolved. There are two reasons for that. The problems for her constituents, to which she referred, are as real in my area as they are in other areas of the United Kingdom. The Government’s reduction in the block grant for Northern Ireland means that our health will also be affected. The changes in health care here will be the marker for future changes for us. Does she believe that the service that the NHS is offering is not the standard that we in the United Kingdom expect and are accustomed to, and is not of the standard that is needed to address core health issues?

[Chi Onwurah]

I thank the hon. Gentleman for his intervention. I believe strongly that the national health service is one of the best, most efficient and most effective health services in the world. The evidence shows that, as I will explain. It is absolutely right to say that the concerns I am expressing on behalf of my constituents and the north-east are felt throughout the country, and with good reason. The proposed measures will have an impact on the health of all constituencies in the country. The profession believes that the changes will have a negative impact on health inequalities. The Health Committee’s recent report on public health warned that the Bill poses a “significant risk” of widening health inequalities, yet the Government are pressing ahead.

The third way in which the Health Secretary will widen regional health inequalities is through the wholesale marketisation of the national health service. Before the Minister pretends otherwise, let me quote her colleague, the Minister of State, Department of Health, the right hon. Member for Chelmsford (Mr Burns), who admitted last year that the Bill will turn the NHS into a “genuine market”.

We should recognise that despite having serious health inequalities, we suffer relatively little from inequalities of access. I am no expert on health services, but I am told by those who are that the stent insertion that Prince Philip recently underwent at Papworth hospital did not differ materially from the treatment that any of my constituents would have received at the Freeman hospital if they had suffered a similar condition. That is fantastic, but it is not the case in the United States of America where there are terrible health access issues due to its private health care system. In the short term, the Government’s reforms are diverting funds away from patient care, which will have an impact on waiting times. Those who can afford it will tend to seek private health care, but those on low incomes will be unable to do that. In the longer term, the Bill is about the privatisation of the NHS. Strong independent evidence indicates that the NHS is one of the most efficient and equitable health systems in the world. Why would we want to make it into a market? The Bill misses an important opportunity to focus on the real issues and the wider determinants of health in this country.

I shall therefore finish by asking the Minister these questions. The Government have signed the recent World Health Organisation declaration to deal with the social determinants of health inequalities, so what concrete actions will Ministers take? The previous Government accepted the Marmot review’s recommendations in full. When will the current Government do the same? What are the coalition’s proposals for introducing a national minimum unit price for alcohol? Will the Government confirm a commitment to undertake a consultation on plain and standardised packaging for tobacco products, and on what date that will take place?

Does the Minister share my concern about the Royal College of Midwives and Netmums survey showing that women from lower incomes were denied antenatal classes and the choice of a home birth? Will that not entrench health inequalities from before birth? The Minister looks somewhat surprised at that question, but differences in health access do exist in our country.

As Blane said, no law of nature decrees that the children of poor families should die at twice the rate of children born into rich families. In the north-east, there are more poor families. Will the Government commit to reversing their changes to the funding formula component designed to deal with health inequalities?

The national health service’s first Minister of Health, Nye Bevan, famously said that when a bedpan falls to the floor in Tredegar, it should echo in the Palace of Westminster. The Minister of State, Department of Health, the right hon. Member for Chelmsford, quoted that with some amusement and disdain and proclaimed that those days were long gone, so what does this Minister think should echo in Westminster? Does she accept responsibility for reducing health inequalities? Can she assure me that health inequalities between the north-east and the rest of the country will reduce over the term of the present Government?

[Several hon. Members]

rose—

--- Later in debate ---

[Ian Swales]

I believe that the wider issue of NHS reforms is outside the scope of this debate, but certainly I see a growth in the number of GPs already.

[Chi Onwurah]

rose—

[Ian Swales]

I am not giving way again on that subject.

As the hon. Member for Easington (Grahame M. Morris) said and as we all know, many factors are involved in health inequalities: smoking, alcohol, obesity, housing, income and others. Sadly, the area that I represent has the worst rate or one of the worst rates of obesity in the country, and one third of my constituency is in the poorest 10% of most deprived wards, so I am well aware of how these things operate in the local area.

In the public health area, we should, as the hon. Member for Newcastle upon Tyne Central said, celebrate a great success and learn from it. The Fresh organisation has had a great impact in terms of smoking reduction. The rate in the north-east went from 29% in 2005 to 22% in 2009. I also find this hard to believe, but apparently males in the north-east have the lowest rate of smoking in the country. It was probably the highest at one time, but apparently it is now the lowest. That shows that effective public health action and education can have a big impact. Models such as that, in which innovative third sector organisations focus on change, can assist with this important job, which is a lot about behavioural change.

As well as successes such as the one that I have described, I welcome the increased spending in the NHS by the previous Government. That has increased health outcomes for all, regardless of the fact that it failed to narrow health inequalities. My area has seen the setting up of excellent facilities such as the James Cook university hospital. As has been mentioned, there is also the data gathering, which is so important in learning how to deal with these problems.

There is still a lot to do. In my constituency, there is a 16-year gap between the life expectancies in the richest and poorest wards. I therefore welcome local health commissioning, which will lead to a more joined-up approach to local issues. An excellent pathfinder GP group is already up and running in Redcar; in fact, it was running as a social enterprise for five years before the recent reforms were introduced.

I welcome the public health agenda and the fact that the budget will go to local authorities. I also welcome the setting up of health and wellbeing boards, although we will have to watch how the money is spent to ensure that the maximum amount gets to the front line. Similarly, I welcome the proposed establishment of Public Health England, which will have the specific aim of reducing health inequalities.

Even more study is needed into, for example, the psychological aspects of why people choose lifestyle options they know to be harmful. Recent research clearly shows that many social problems, including the one we are discussing, stem from income inequality, not from absolute levels of income, and some interesting data are emerging. Sadly, income inequality also widened under the previous Government.

The new Government have made a start, but there is much more to do, and I look forward to the Minister’s comments.

Oral Answers to Questions

Chi Onwurah Excerpts

Tuesday 10th January 2012 Commons Chamber

[The Parliamentary Under-Secretary of State for Health (Anne Milton)]

I remind my hon. Friend that smoking kills over 80,000 people a year in the UK. We have published our tobacco control plan, are implementing the display ban and hope to consult soon on the future of plain packaging. The important thing to remember about improving public health is that it is not a party political issue. I cannot comment on the specifics of the case he mentions, but this is a matter that interests everyone across the House.

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

T2. The people of Newcastle are more likely to die early from cancer, health disease and stroke. On average, a child born in Newcastle today is expected to die five years before a child born in the Secretary of State’s constituency, so why is he changing the health funding formula so that in Newcastle we will lose 2.5% of our funding, whereas his constituency will see a rise of 2.1%?

[Mr Lansley]

Let me remind the hon. Lady—she might not have noticed this—that before the Christmas recess I announced funding for the next financial year for all primary care trusts in England, and the increase for all primary care trusts is 2.8%. In contrast to the previous Government, we are setting out to reduce health inequalities, not least by focusing resources on public health on the basis of an objective measurement of disparities in health outcomes.