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.

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 16th April 2013 Commons Chamber

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

T5. Evidence from the all-party muscular dystrophy group’s inquiry into access to high-cost drugs for rare diseases has highlighted the importance in clinical trials of centres of excellence, such as the International Centre for Life, which is based in Newcastle. Will the Minister, with NHS North of England, meet me to discuss changes to specialist neuromuscular care in my area as a result of the new NHS set-up?

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

I am tempted to say no, but I would not get away with it—so, yes, of course the hon. Lady can join all the rest and arrange to meet me. I would be very happy to discuss her concerns. While I am at the Dispatch Box, may I pay tribute to the International Centre for Life, which does really important work?

Backbench business

Mary Glindon Excerpts

Thursday 14th February 2013 Westminster Hall

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

It is a pleasure to speak in this debate under your chairmanship, Mrs Osborne. I, too, thank the Backbench Business Committee for allowing the debate. However, I particularly thank the hon. Member for Romsey and Southampton North (Caroline Nokes) for securing the debate. She and I are members of the all-party group on body image and, in calling for the debate, she has shown the commitment to, and concern about, the issue that demonstrate why she is deservedly the chair of our group.

Before I had decided to speak in the debate and while I was pondering whether I would be able to spare the time before returning to my constituency, I received a number of e-mails from people across the country, as I am sure other hon. Members did. One was from a young constituent of mine who is just 17 years old. This is why she asked me to attend the debate:

“Recently I have been having problems with my eating and raising awareness would mean people like me can get the help we need and feel less ashamed or judged. This issue is incredibly important to me and you showing your support on Thursday would really help…This serious mental illness is affecting someone you know right now in your constituency.”

What could be more compelling than that?

Today, I would like to be quite parochial and speak about services in the north-east. When looking on the internet to find out where these services were, I was quite concerned to find out how limited they are, but, fortunately, in the north-east we have a unique service; it is the only specialist provision outside hospital services in the north-east. The Northern Initiative on Women and Eating has worked in the area for 24 years; it is referred to as NIWE. Last year, according to its annual report, it helped 1,344 people with eating disorders. For the rest of my speech, I shall refer to them as people with eating distress, as NIWE feels that it is a more appropriate way to describe how people suffer when they have problems with eating. It has also helped 141 carers and supporters of people with eating distress and 636 professions have called on its expertise.

As has been said, 1.6 million people in the UK have eating distress, more than 90% of whom are women, and an increasing number of men are now affected. The figures include only those who are in-patients in NHS treatment, and therefore leave out people who have not come forward or have not been diagnosed and those who are receiving private treatment or being treated as out-patients or in the community. Eating distress is a general term with which people are more comfortable. It covers those diagnosed with conditions such as bulimia, anorexia, eating disorders not otherwise specified and binge eating. Problematic eating habits seriously interfere with people’s lives, as hon. Members have pointed out.

Some people have not even shared their disorders with others. The high levels of stigma have already been pointed out. When people have eating disorders, it often goes unreported to GPs or other medical services, owing to shame and the fear that people’s futures could be jeopardised if anything were recorded in health records. That fear needs to be removed. Sometimes people have lived with eating issues for many years, managing in secret and suffering in silence.

Under-reporting is exacerbated because many eating issues are due to a fundamental lack of self-esteem, which can be brought on by bullying or abuse. They are difficult to diagnose medically and not all GPs have enough specialist knowledge, as we have learnt this afternoon. I do not apologise for repeating some things that have already been said; I do not think we can say enough about what the issues are and how they affect the lives of sufferers.

Eating distress carries the highest mortality rate of any mental illness. During the past two years, hospital admissions in the north-east for eating distress have risen by 16%, compared with 8% for all other admissions. Unfortunately, the figures also show that the highest rates are in the north-east. Overeating is increasing, and the serious long-term health risks of obesity are being highlighted.

Of those on NIWE’s waiting list for support and help, 10% are from my constituency and the wider North Tyneside borough. I would like to thank it for helping people from north Tyneside, who, over the past two years, made up 25% of its attendees. Of the people with whom NIWE works, 61% are under 30. NIWE was keen to stress, as was my constituent, that there is a greater chance of recovery with early intervention. Sadly, NIWE also tells us that 70 people are on its waiting list for group therapy. Waiting times are too long, but it simply lacks the capacity to address the issue further, and every day it receives new names.

There is particular concern in the north-east from NIWE and public health leaders over the growing numbers of young people in the north-east, due to the student groups, who are at risk. We have a number of universities. Although NIWE is supported by North Tyneside, Newcastle and Gateshead primary care trusts and Newcastle council, and receives funding from charities, such as the Northern Rock Foundation, it operates on a shoestring.

Many treatments target core eating disorder pathology, primarily weight restoration, but there is a need to look at efficacy and effectiveness in minimising harm and reducing the personal and social costs of chronic illness. NIWE has therapy groups, which are proving successful, that address the underlying determinants of eating distress, but I have to keep returning to the fact that it is underfunded. NIWE has found that people from across the area who are recovering from an eating disorder want recovery groups to be set up, because they help them to progress and maintain their recovery, which must be the ultimate aim of anyone who comes forward to address a problem. The Stay Well group helps such people, but NIWE is, again, trying to raise more funds to support that vital service. It tells me that, as I think we all know, such services need more provision and we need more to be spent on recovery, because, sadly, there is a high relapse rate and many people go through a revolving door. It makes sense to invest in support for people in recovery, because bed rates for those with eating distress are between £450 and £750 a day. In terms of economics, the Government should look at supporting people in recovery.

Support for families and friends who are carers and supporters is important. There are effective family-based interventions. NIWE offers an initial listening and signposting service to under-18s and their families, but it wants to do more. I know that I am pleading for NIWE, but I am sure that those here today know of many other organisations in a similar situation, with the ability, but simply not the capacity, to help. People call NIWE wanting an appointment or asking for other services, but it finds that need far outstrips capacity.

I mentioned that eating distress is becoming more common among the male population and minority groups, including the transgender community. NIWE has been able to introduce some support for young men and others who come to it, but a lot more work needs to be done. Before I make a plea to the Minister on what needs to be done, I shall pay tribute to NIWE’s work by quoting some users of its service. One person said:

“NIWE has saved my life and is trying to help me make sense of it.”

Others said:

“I think this is an unbelievably amazing service. The counsellors in the session were brilliant. I just wish there were more of you out there for all the people still struggling.”

“A relaxed and non-critical atmosphere which enabled me to speak…without feeling isolated.”

There are more quotes, but those demonstrate how organisations such as this are critical and why they need full recognition and support in the health service.

Raising awareness of serious mental health issues and the profile of services is always crucial. With so much pressure on clinical commissioning groups in their new role, specialist non-acute services are in danger of flying under the radar and losing out in commissioning plans. Mental health services are often poor relations when it comes to health funding pots. Acute eating disorder services will be funded through specialised commissioning frameworks, and will often be large regional services remote from many of their users. Small local services, especially ones focusing on early intervention, are therefore vital, but there is a great risk that such services will not be commissioned.

As has already been mentioned, we need a comprehensive awareness-raising programme in schools and youth services. Organisations such as NIWE try to provide that, but much more is needed—more training for professionals and, above all, more money for services, such as NIWE, and more support and acknowledgment. I make a plea to the Government that, following this debate, they will help groups, such as NIWE, that are doing so fantastic and fundamental a job for our communities.

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 15th January 2013 Commons Chamber

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

My hon. Friend and I have previously discussed this matter, and she is right to highlight that there are particular challenges to address in rural areas, in terms of both distances to travel and an ageing population requiring considerable health care resources. That will of course be a matter for the NHS Commissioning Board to examine when it considers future funding allocations.

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

T6. As one in three women who get cancer are over the age of 70, can the Minister say when the newly launched Be Clear on Cancer campaign will be rolled out nationally?

[Mr Hunt]

It is our intention to roll it out nationally as soon as possible, and I will make sure that the hon. Lady gets the exact details.

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 23rd October 2012 Commons Chamber

[Mr Hunt]

I agree with my hon. Friend that the purpose of the changes that the coalition Government have brought to the NHS is to tap into local innovation, ideas and ambitions to transform services, and it is important that no changes undermine that. He should take comfort from the fact that my predecessor introduced clear tests for any major reconfigurations, including that they should be strongly supported by local doctors, that the public should be involved in any consultation, that the changes should improve patient choice and that there should be clear evidence of benefits to patients. I hope that that gives him and his constituents some reassurance.

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

3. What his policy is on upholding national pay arrangements in the NHS.

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

NHS trusts and foundation trusts have the freedom to determine the terms and conditions of the staff they employ. As the hon. Lady will be aware, the “Agenda for Change” was negotiated and brought in during 2004 by the then Secretary of State, John Reid, to agree a national framework for pay in the NHS. In general, most trusts support the agreed pay framework and the “Agenda for Change”, and they are likely to continue to use national terms, provided they remain affordable and fit for purpose.

[Mrs Glindon]

In fairness, a truly national health service demands a national pay scheme, and the British Medical Association has warned that the move to regional pay undermines the ethos of “national” in our national health service. How does the Minister intend to act on that warning?

[Dr Poulter]

I remind the hon. Lady that it was the previous Government who set up the current national pay framework in 2004, and that framework has been amended 20 times to support employers over that period. The previous Government gave foundation trusts the freedom to amend those pay terms and conditions. Regional pay does exist in the NHS. On the basis of what she has said, does the hon. Lady wish to remove the London weighting for those workers who live in London? I am sure she would not want to do that because we recognise that it is more expensive to live in certain parts of the country, and workers should be rewarded for that.

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 17th July 2012 Commons Chamber

[Mr Lansley]

It is staggering, isn’t it? In 2010-11, the NHS budget was set by the right hon. Gentleman, not by us. The final accounts for 2011-12 will not be published until the autumn. I wish he would just get up at the Dispatch Box and admit that over the course of this Parliament the coalition Government will increase the NHS budget in England by 1.8% in real terms, which is £12.5 billion in cash, whereas the Wales Audit Office has said that a Labour Government in Wales will cut the NHS budget over the same period by 10% in real terms.

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

2. What steps he is taking to bring forward legislative proposals on the funding of social care.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

15. What steps he is taking to bring forward legislative proposals on the funding of social care.

[The Minister of State, Department of Health (Paul Burstow)]

The draft Care and Support Bill contains clauses that support our commitment to introduce a universal deferred payments scheme and a national eligibility threshold. We have set out our intention to base a new funding model on the principles of the Dilnot commission model and we will take a decision in the next spending review.

[Mrs Glindon]

Last week the Secretary of State dismissed the concerns of Labour MPs about councils being hard pressed to find funds to implement any of the proposals. The Local Government Association stated that there was no money. Will the Minister now commit to legislation in this Parliament to sort out the funding of social care at local level?

[Paul Burstow]

It does not need legislation to sort out the amount of money that goes into social services; it does need legislation, however, to put in place a universal deferred payments scheme. We have made it clear that we will fully fund the commitment that we have already announced and we will work with the Local Government Association and others on its detailed design and implementation.

--- Later in debate ---

[The Minister of State, Department of Health (Mr Simon Burns)]

I am grateful to the right hon. Gentleman for that question. As he knows, any proposals for service changes will be subject to the Secretary of State’s four tests and a full three-month public consultation across south-west London, which I am sure the right hon. Gentleman and his constituents will take part in. My right hon. Friend the Secretary of State will be more than happy to meet him to discuss the matter further.

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

T8. In the north-east region, there is one neuromuscular care adviser providing dedicated specialist care and support for more than 3,000 people with muscular dystrophy and associated conditions. Will the Minister give assurances that care advisers will continue to be funded and commissioned at specialist NHS Commissioning Board level so that they can carry on supporting community teams across the country?

[Mr Burns]

I give the hon. Lady that assurance. Specialised commissioning will be carried out through the NHS Commissioning Board.

NHS (Rationing of Care)

Mary Glindon Excerpts

Monday 16th July 2012 Commons Chamber

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

This issue has already been raised today in the debate on a motion in the main business of the House, but I believe that the growing concern about rationing in the NHS justifies further debate tonight. For almost as long as the NHS has existed, rationing has been a matter of concern. Resources are finite, but in the past two years rationing has reached an unprecedented level; more than 125 previously free treatments have now been restricted or even stopped altogether, and they cover the full health care spectrum, from the cosmetic to the essential and all stages in between.

These findings were revealed in a survey, carried out by Labour’s shadow health team, of all NHS primary care trusts and shadow clinical commissioning groups in England. It is important to state the relevance of Labour’s new NHS check, which I will refer to in my speech, because as well as conducting surveys it gathers together the views of those working in the health service and takes into account the views of those receiving the service and their families. The submissions are considered alongside evidence from freedom of information requests to produce an accurate and relevant monthly report, such as the one on rationing.

Labour’s findings are backed by members of the British Medical Association who warn that creeping NHS rationing is making patients suffer unnecessarily, with people who need hip and knee replacements having to wait longer for operations while suffering in pain. GPs believe that the rationing is the result of the drive to make savings in the NHS of up to £20 billion by 2015. That is further borne out by the results of a poll conducted by the BBC in March, which found that more than four out of five GPs expect the rationing of NHS care to increase in response to financial pressure.

The concerns of the medical profession are echoed by other professions in the health service. Ahead of this debate I was contacted by the Chartered Society of Physiotherapy, which is very concerned about the rationing of NHS physiotherapy services and has a number of examples of patient care and outcomes suffering as a result. The CSP opposed the Health and Social Care Bill and the Government’s reforms to the NHS because of concerns about the negative impact on patient care resulting from rationing and the fragmentation of services. It is particularly concerned about the “any qualified provider” model and has found that patient choice is being adversely affected by the clear rationing of treatment and access in some of the “any qualified provider” service specifications, which it has systematically reviewed. For example, in Nottinghamshire the amount of treatment prescribed is limited without regard to patient need. In other areas, no re-referrals are allowed within a six or 12-month period, also regardless of patient need. This rationing is likely to lead to increased orthopaedic referrals and unnecessary surgical interventions.

The CSP has further concerns about the impact of the “any qualified provider” model, including a reduction in patient choice and the quality of care, the loss of clinically and cost-effective innovations such as self-referral to physiotherapy, the negative impact on the physiotherapy profession and the risk of conflicts of interest among private providers. Those are all legitimate concerns from a respected professional body, so I hope that the Minister will address them specifically with the society.

The Minister has denied the relevance of the shadow health team’s extensive survey, the NHS check, but perhaps he should reconsider his opinion of it, because the survey’s findings mirror those of GP magazine, which gathered evidence under the Freedom of Information Act, showing that 90% of primary care trusts were imposing restrictions. The magazine received responses from two thirds of England’s 151 trusts on the procedures that they considered to be non-urgent. The most common restriction was on tonsillectomies, but there was rationing in other areas, too.

[Mr Jamie Reed (Copeland) (Lab)]

Will my hon. Friend give way?

[Mrs Glindon]

I will.

[Mr Deputy Speaker (Mr Nigel Evans)]

Order. You can make an intervention, Mr Reed, but not from the Opposition Front Bench. If you step up to another Bench, you may intervene from there.

[Mr Reed]

Thank you, Mr Deputy Speaker. I trust that this is in order.

Will my hon. Friend join me in asking the Minister, who has indicated that he will not take interventions from me this evening, whether he will undertake a nationwide investigation into the clear rationing that is occurring in the NHS, and whether the Government will publish a list of procedures in which the eligibility criteria for treatment are now being changed? Will she join me also in asking the Government to act where various NHS organisations are breaching NICE guidelines on treatments offered to patients?

[Mrs Glindon]

I certainly will, and my hon. Friend may find that at the end of my speech I reiterate some of what he has said.

There is rationing in other areas, too, with 66% of trusts limiting cataract surgery and more than half rationing weight-loss surgery and hip and knee operations. Dr Richard Vautrey of the British Medical Association describes the situation as a “cost-saving exercise”, saying quite rightly:

“Patients fully understand the NHS doesn’t have unlimited resources...but they don’t understand, or believe it’s fair, when services are provided in one area but not another.”

The Labour party’s survey provides evidence of random rationing throughout the NHS, and of an accelerating postcode lottery. A number of rationed or decommissioned treatments are common across several PCTs and clinical commissioning groups, while some are specific to individual PCTs and CCGs. That demonstrates the wide variation throughout the country.

The survey found that rationing of treatment varies from capping, as in NHS South West Essex and NHS South East Essex, where a cap has been placed on the community diabetes service, to restricting treatment based on age or clinical need, as in NHS Warwickshire, where new criteria require that a patient must complain of intense or severe symptomatology and have a BMI of less than 40 to be listed for a knee replacement.

Evidence also showed, alarmingly, that PCTs and CCGs are diverging from the NICE guidelines, as in NHS Bassetlaw, where needle fasciotomy for Dupuytren's contracture is considered only if the patient is aged over 45 and has a loss of extension in one or more joints exceeding 25°, or if the patient is under 45 years old and has a greater than 10° loss of extension in two or more joints. However, the NICE guidelines do not refer to degree of loss of extension or any specific age criteria, other than to say that the procedure would be more appropriate in older people.

Equally alarming are the findings that show that patients now have to pay for treatments that had been free. In a surgery in Yorkshire, patients needing treatments for cysts, skin lesions and in-growing toenails were told that they were no longer available on the NHS. But the practice had established a private company to offer those minor operations at a cost: £56.30 for the removal of a small cyst; £126 for larger cysts; £146.95 for the removal of an in-growing toenail; and £243 for the removal of a non-cancerous mole. In response to the GP magazine report, the Minister said:

“It is quite unacceptable if this is going on in all those cases. As you’ll appreciate, it is a complex issue. But the defining point is that people should be treated on clinical need, and not financial considerations.”

The findings of the BMA, the concerns of other health professionals, such as the Chartered Society of Physiotherapy, and the results of Labour’s in-depth survey all point to the fact that, because of increasing rationing, people are being treated on the basis not of clinical need, but of financial considerations.

Will the Minister respond positively to Labour’s call for an immediate review of rationing in the NHS and act immediately on the new evidence showing treatment restrictions on cost alone? How will he ensure that national guidelines can be implemented? Will he take action, pending the outcome of the review, to reverse immediately rationing decisions that leave patients in severe pain, restrict mobility, limit their ability to live independently or have a major psychological impact? Will the Government initiate a public debate on whether all other treatments should be provided by the NHS, rather than allowing them to be restricted in a random fashion?

[Mr Reed]

I am grateful to my hon. Friend for letting me intervene once more. Will she also join me in asking the Minister to publish whatever assessment must have been made into the claims forthcoming from the freedom of information requests shown to the Department of Health? Will she join me in asking the Government to publish that assessment of those claims?

[Mrs Glindon]

I certainly join my hon. Friend in asking the Government to publish the assessment.

In denying the findings of Labour’s survey of rationing and the supporting evidence from the BMA and other professional bodies working in the NHS, the Government are denying the people of this country the full NHS service that they deserve and have contributed towards.

[Julie Hilling (Bolton West) (Lab)]

I am listening with great interest to my hon. Friend’s speech. Does the decrease in care free at the point of delivery match the increase in the care that is then paid for by patients? Are the hospitals now offering all that care to people as long as they pay for it?

[Mrs Glindon]

I thank my hon. Friend for that intervention. As I have outlined, one of the terrible things is that people have to pay. However, in some instances, treatment is simply not available any longer.

Finally, I should say that my party accepts that there has to be a debate on some treatments that are of borderline value, but that debate should be part of a national review. I hope the Minister will respond positively to the request for an immediate review, allow a full and positive debate to begin, and arbitrary and unfair rationing in the NHS to end.

--- Later in debate ---

[Mr Burns]

No, I will not; I am going to make some progress. This is not the hon. Lady’s debate and I have only just started.

If the hon. Member for North Tyneside or any other member of her party or of the public brought forth genuine evidence of cost-based rationing—blanket bans on treatment—this Government would act decisively to stamp it out, but the fact is that so far we have been brought no such convincing evidence of that.

The core principle underpinning the NHS is that it is a comprehensive health service, available to all, free at the point of use and based on need and not ability to pay. That principle is enshrined in the NHS constitution and reaffirmed in the Health and Social Care Act 2012.

[Mrs Glindon]

Does the Minister therefore disagree with all that has been said by the BMA and other professionals about their concerns about the rationing that is taking place? Does he doubt them? Does he think that the thousands of people who have contacted Labour’s health check are not telling the truth?

[Mr Burns]

It is not a question of not telling the truth. If the hon. Lady waits, I will deal with the NHS health check that she has mentioned. I am not sure whether she was here for the earlier debate, so she might not have heard me describe it as being as worthless as the piece of paper that Chamberlain brought back from Munich. In the course of my comments, I will outline why that is.

As I said, the core principle of the NHS is that it is a comprehensive health service, free at the point of use for all those eligible to use it. That principle remains as true and relevant today as it was when the NHS legislation was passed in 1946 and enacted in July 1948, and it will remain true in the years and decades to come for as long as the three main political parties continue to subscribe to that core belief.

Before I move on to the specific accusations of rationing that the hon. Lady makes, may I first point out that it is this Government who are protecting NHS budgets and increasing the amount of money available to the NHS by £12.5 billion over the course of this Parliament? It was the right hon. Member for Leigh (Andy Burnham) who described such a commitment as “irresponsible”—a comment that I find particularly bizarre coming from a Labour shadow Health Secretary.

May I ask what the hon. Lady’s party is doing where it is in control of the NHS? Is it increasing spending, or is it cutting it by 6.5%? The lucky escape of the NHS in England is that it has growing budgets under this Government compared with the falling budgets it would have had had her party won at the last election. If the hon. Lady, who looks a bit perturbed, does not understand what I am talking about, I can tell her that I am referring to what is happening under a Labour Government in Wales who are cutting the NHS budget—a warning to anyone living in England.

Of course the financial challenge is a difficult one. On its own, the extra £12.5 billion will not be enough to cover the growing demand for NHS services. It is vital that we get the most value—the very best health outcomes, as we like to say—out of every single penny that taxpayers spend, by cutting out waste and focusing more on prevention. It is true that the hon. Lady’s party recognised this too. When Labour was in office, it established NICE—the National Institute for Health and Clinical Excellence—to help the NHS to improve patient care within the finite resources available to it in order to ensure value for money. Through its world-class commissioning programme, it rewarded commissioners for setting priorities. Furthermore, it first recognised the scale of the £20 billion gap between funding and demand that emerged in 2009. The result was the QIPP agenda—quality, innovation, productivity and prevention—with its focus on improving patient care, increasing innovation and gaining greater accountability.

Since then, the world has changed. Thanks to the horrendous mess in which the hon. Lady’s Government left the nation’s finances, the NHS faces one of the toughest financial settlements in its history, even with its protected budget. That is one reason why the Health and Social Care Act was so vital. To get the best care for patients during a difficult financial settlement, we needed to put clinicians in control—making the connection between clinical and financial decisions, always putting patients’ interests first, and always looking for value for money.

In future, local priorities will be determined by local clinicians, not by administrative organisations that lack sufficient clinical input and are cut off from patients. Commissioning decisions will be based on a far deeper understanding of local need, with clinical commissioning groups working with health and wellbeing boards, local authorities and key community organisations to meet the needs of their local population. There will be better, more effective, more efficient care for patients.

Let me address directly the accusations of rationing. We are clear that it is completely unacceptable for commissioners to impose blanket bans on treatments. That is set out in case law and in Department of Health policy, which requires commissioners to allow exceptions in individual circumstances. We are also clear that commissioners must never restrict access to treatments on the basis of cost alone. That message was reiterated in a letter from Professor Sir Bruce Keogh, the NHS medical director, to the medical directors of strategic health authorities as recently as September 2011. He emphasised that any decision to restrict access to a treatment or intervention must be justified by a patient’s individual circumstances. By that, I mean not their financial circumstances, but their clinical circumstances and condition.

Since then, my ministerial colleagues and I have reiterated the message in our communications with the service that treatments available on the NHS are based on clinical need; that there should never be any arbitrary rationing based on cost, either locally or nationally; and that we will take action against any organisation found to be arbitrarily restricting treatment without clinical justification.

As hon. Lady said, the Labour party recently made a series of serious accusations in its NHS health check—accusations that services are being restricted or decommissioned without clinical justification. Had the hon. Lady done some rudimentary checking of her own, she would quickly have come to the same conclusion that we did: that such claims are nonsense dreamed up in Labour party headquarters.

The NHS health check claimed that there was a blanket ban by NHS Hull on the removal of wrist ganglia. We spoke with NHS Hull. There is no such ban. The health check claimed that 11 out of 100 primary care trusts or clinical commissioning groups restricted laser revision surgery for scars, but such cosmetic surgery has never been routinely available on the NHS, either in the lifetime of the coalition Government or in the 13 years of the last Labour Government. The position has not changed one iota since the Government came to power.

The NHS health check claimed that weight-loss surgery is restricted. It states:

“patients generally have to be over 18 and have a BMI over a certain level to receive weight loss surgery”.

Incredibly, people have to be overweight before they will be considered for weight loss surgery. To me, that seems perfectly logical. Why would the NHS want to treat people who were not overweight? From reading the Opposition’s NHS health check, it appears that the Opposition define rationing as a clinician denying treatment to a patient who has no clinical need for it. That is patently ridiculous. Treatments available on the NHS are based on clinical need. As I said, there should never be any arbitrary rationing based on cost, either locally or nationally. Such practices are totally unacceptable.

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 21st February 2012 Commons Chamber

[Paul Burstow]

The hon. Gentleman raises an important issue that we are discussing with the GDC. The council’s work on revalidation will ensure that the work of those supervising foreign dentists and, where appropriate, foreign dentists themselves is properly covered.

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

T2. Given that managed clinical networks for neuromuscular conditions can help to reduce the number of unplanned hospital admissions for patients with life-shortening illnesses and save the NHS money, will the Secretary of State commit to establishing such networks with funding from the NHS Commissioning Board?

[Mr Lansley]

As we have set out clearly, we want to promote clinical networks more widely, not just in relation to cancer and stroke, as has been the case in the past. I shall write to the hon. Lady about whether it would be appropriate for neuromuscular conditions and whether it is embraced in any plans that the NHS Commissioning Board and commissioning groups have in place already.

Oral Answers to Questions

Mary Glindon Excerpts

Tuesday 22nd November 2011 Commons Chamber

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

T4. Will the Secretary of State agree to meet me, and families living with muscle disease, to discuss the urgent problem of primary care trusts refusing to fund vital cough assist machines, which help to prevent serious and very costly winter respiratory infections for those who are unable to use their lung muscles to cough?

[Mr Lansley]

Of course I, or one of my colleagues, will be glad to meet the hon. Lady to discuss that. I might also say that it was important to have announced, as I did last week, the expansion of ECMO—extracorporeal membrane oxygenation—facilities across England. Those facilities present a life-saving opportunity for people with the severest respiratory disease.