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9.30-11.00am Epilepsy, Westminister Hall - 29 / 11 / 2011

Steve McCabe, Labour MP for Selly Oak, moved a debate on prevention of avoidable deaths from epilepsy which received an answer from the Minister of State, Department of Health, Paul Burstow.

• Parliament TV: Epilepsy
• Commons Hansard: Epilepsy
• Topics: Health

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Visit Steve McCabe's website >> http://www.stevemccabe-mp.org.uk/

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Westminster Hall

Tuesday 29 November 2011

[Mr Lee Scott in the Chair]

Epilepsy

Motion made, and Question proposed, That the sitting be now adjourned.—(Stephen Crabb.)

9.30 am

Steve McCabe (Birmingham, Selly Oak) (Lab): Good morning, Mr Scott. It is a pleasure to serve under your chairmanship.

I am very pleased to have secured this debate. To be honest, it is so long since I began trying to secure it that I cannot entirely remember all the motivations for doing so. Recently I have had two different groups claiming ownership of the idea for it, and I am quite happy to accept that they are both right. I do not regard myself as an expert on epilepsy and I am not particularly motivated by self-interest or by the experience of relatives or close friends. Like many other MPs, I am motivated by constituents who have come to me to talk about their own experiences of epilepsy and by the interest of the various groups and charities that set out to help people with epilepsy. Consequently, any mistakes and omissions in my contribution this morning are entirely my fault, but I am extremely grateful to various groups for the facts in my speech and the good advice that I have received. They include Epilepsy Action, the Joint Epilepsy Council, Epilepsy Bereaved, the National Centre for Young People With Epilepsy, which is now called Young Epilepsy, and of course the all-party group on epilepsy—whose secretary in 2007 was, I note, the MP for Witney, who is now the Prime Minister.

Mr Jim Cunningham (Coventry South) (Lab): Like my hon. Friend, I have a number of constituents who are affected by epilepsy. The Dattani family lost their son, Ravin, in February because of epilepsy, and with the help of others, in particular the local newspaper, the Coventry Telegraph, they have raised about £19,000. They point out that epilepsy causes more than 500 deaths each year in the UK, and one of the issues they have raised in correspondence with me is that often parents do not know the right questions to ask a doctor. That view is reflected in other correspondence that I have received on this subject, and it is a point that we should look into. In addition, the majority of people do not realise that epilepsy can end in death. Will my hon. Friend congratulate the Dattani family on their efforts to do something about epilepsy after the loss of their son, and particularly on raising about £19,000 with the help of our local newspaper?

Steve McCabe: I certainly congratulate the family on that fundraising, and the point about lack of information on epilepsy is crucial. The full title of the debate is “Prevention of avoidable deaths from epilepsy”, but given the nature of the subject I may occasionally stray into more general territory; I hope that you will forgive me for doing so, Mr Scott.

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Epilepsy is defined as a tendency to have recurrent seizures, when a sudden burst of excess electrical activity in the brain causes a temporary disruption in the normal message-passing between brain cells. Epilepsy is not one condition but a composite of about 40 different types of seizures and up to 50 different syndromes. It affects about 600,000 people in the UK, which is one in every 103 people or about 930 people in each parliamentary constituency. It is estimated that about 69,000 people with epilepsy could have their seizures controlled with good treatment; about 74,000 people are taking aggressive drugs unnecessarily, because of misdiagnosis; a quarter of people who are known to learning disability services have epilepsy; half of the 60,000 young people with epilepsy are estimated to be underachieving academically relative to their intellectual capacity; and people with epilepsy have been shown to be twice as likely as those without epilepsy to be at risk of being unemployed.

Some studies suggest that the likelihood of early death in people with epilepsy is two or three times higher than in people without epilepsy. As my hon. Friend the Member for Coventry South (Mr Cunningham) indicated, the biggest risk appears to be poor seizure control, with the risk of early death increasing as the number of seizures that an individual suffers increases. A phenomenon that people are now starting to come to terms with is sudden unexpected death in epilepsy, or SUDEP. I understand that in 2009 about 1,150 people in the UK died of epilepsy-related causes. That means that, each day in the UK, approximately three people with epilepsy die, and at least a third of those deaths—one death each day—are potentially avoidable.

I am very grateful to Lucy Kinton, a consultant neurologist at Basingstoke and North Hampshire NHS Foundation Trust, who says that there is not enough research into SUDEP, which frequently affects young people who otherwise could be expected to have a fairly normal life. Indeed, she points out that our investment in research into epilepsy is much lower than our investment in research into other frequently occurring conditions, such as diabetes.

Nia Griffith (Llanelli) (Lab): As a child, I lived on what was called an epilepsy centre—my mother was the resident doctor there—in the middle of the countryside. Does my hon. Friend agree that although we have made huge progress since those days in terms of changing social attitudes and raising awareness, research into epilepsy is still very much underfunded? Is there not a huge need to make research into epilepsy an urgent priority, so that we can gain some of the knowledge that could prevent some of the future deaths from epilepsy?

Steve McCabe: I certainly agree that there have been considerable strides and we should not dismiss them, but there is an overwhelming need for further research and for improvements in specialist care and treatment. That is one of the points that I hope the Minister will comment on later this morning.

SUDEP accounts for nearly half of all epilepsy-related deaths. Research suggests that the seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing, very occasionally causing the person to stop breathing completely. The single most important risk factor appears to be uncontrolled generalised tonic-clonic seizures, which, I understand, are the type 

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of seizure that causes a person to lose consciousness, while their body becomes stiff and then starts to jerk. Such seizures can lead to sudden unexpected death.

It is estimated that there are about 500 cases of SUDEP every year, and a further 500 deaths every year due to other epilepsy-related causes. About 39% of adult deaths from epilepsy were considered to be potentially or probably avoidable. The main problems or deficiencies that cause these deaths include inadequate drug management; lack of appropriate investigations; inadequate recording of patients’ histories; adults with learning disabilities being lost in the transfer from child services to adult services; and one or more major clinical management errors being made. The absence of evidence of a package of care for those suffering from epilepsy is also a cause of rising concern. In primary care management, the main problems identified include sparse evidence of structured management plans, missed triggers for referral and professional communication failures.

For women with epilepsy, the risk of sudden death in pregnancy remains higher for those with other long-term conditions. The risk of maternal death is an estimated 10 times higher for women with epilepsy than for women in the general population. It is probably fair to say, however, that the risk is still low overall.

I am very grateful to Young Epilepsy, formerly known as the National Centre for Young People with Epilepsy, which works on behalf of about 112,000 children with epilepsy.

Jim Shannon (Strangford) (DUP): I congratulate the hon. Gentleman on bringing this matter to Westminster Hall for debate. I went to school with a young fellow who had epilepsy. I well recall how scary my first encounter with the condition was, because I did not know what was happening. Does the hon. Gentleman agree that there is a need for better awareness in schools? If there are pupils with epilepsy in a school, the school needs to know that, so that it can react in a positive way rather than with the fear that comes from not knowing how to deal with it.

Steve McCabe: Absolutely. Young Epilepsy is very effectively carrying out a pilot project, with more than 20 schools, to develop and test a model of best practice that can be replicated in any school. Although there might well be the usual problems of time and finance, I understand that the pilot is now at a stage where it could be rolled out across the country. That would go some way to addressing fellow pupils’ concerns and to preparing staff much better in what to do in particular situations. I am extremely grateful to Young Epilepsy for its work in that area.

The figures suggest that there has been a general increase in epilepsy, but that could be due to better diagnosis. There certainly seems to be a suggestion that greater attention to the recording and monitoring of people with the condition has been a factor, due to the GP outcomes framework and the introduction of the National Institute for Health and Clinical Excellence guidelines, and similar ones for Scotland. Misdiagnosis remains a significant problem: a rate of between 20% and 30% of people being misdiagnosed could equate to 

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something like 138,000 people without the condition receiving anti-epilepsy drugs, at a cost of about £220 million a year.

There is evidence that epilepsy is more prevalent in the most socially deprived parts of the country than in the better-off ones. There is a particular problem, with which the Minister will be familiar, in the allocation of residential care for some people who suffer from epilepsy, with the local authority describing epilepsy as a health condition, but most other people saying that a combination of health and social factors are involved. A particular group to mention in that respect is prisoners. A number of studies have been done, not least by the all-party group, that show that the NICE guidelines are not followed in the vast majority of prisoner cases, and that there are problems with prisoners having access to the proper drugs and, significantly, with diagnosis. There also seems to be a problem with how some PCTs determine access to services, with some using referral and funding panels rather than relying solely on clinical judgment. I would have thought that that is not necessarily in people’s interests.

All of that leads to a picture of a treatment gap. About 70% of the population with epilepsy in this country could be seizure-free if they received optimal treatment, but only about 52% are seizure-free. Too few children are offered or referred early enough for surgery that could cure their epilepsy or at least significantly reduce seizures. I understand that there is a backlog of more than 2,000 children who could benefit from such surgery.

The Prime Minister himself has acknowledged that there is a need for improved services. More than 10 years have passed since the then chief medical officer, Sir Liam Donaldson, said in his annual report that epilepsy services suffered from a lack of interest compared with the management of other chronic conditions such as asthma. Although national initiatives such as the NICE guidelines and inclusion in the GP contract have raised awareness of epilepsy, and although there are patches of excellence across the country, overall service provision in most communities has not translated into sufficient effective interventions. One purpose of today’s debate is to ask the Minister to meet with some of the epilepsy organisations, particularly Epilepsy Bereaved, to discuss what else we can do to prevent avoidable deaths.

I do not want to take too long because I want to let other people speak, but I should mention that there are recurring stories about the deaths of young people. A young boy of nine who experienced frequent seizures had benefited from excellent care from his paediatricians, but he died following a transfer of care during an overnight stay in hospital when his history was not adequately updated. In another case, a young woman died suddenly in her sleep, leaving behind two sons. She had had infrequent seizures but had never been given adequate advice. Some five years ago, two famous cases, those of Erin Casey and Christina Ilia, led to a fatal accident inquiry in Scotland, with which the Minister might be familiar. In summarising, the sheriff was absolutely clear that the risk of sudden death might have been reduced by access to a night monitor or much better information about the particular risk at that point in the evening.

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I will not dwell on the number of things we need to do. I take the view that there has been progress in our understanding of epilepsy and that there is probably less stigma attached to the condition these days. I think that the previous Government and the present one have made efforts to improve the quality of care, but we know that significant problems remain. We need to think about whether we can set up a dedicated research fund to look much more closely at epilepsy. General practice needs to be much clearer about risk management, about the potential benefits of technology—for example night monitors—and the need to flag up injuries, A and E visits and missed prescriptions. Good medicines management is needed because, as I said earlier, about 70% of people could be seizure-free if prescribed the right medicine. Much more active monitoring of epilepsy deaths is also needed, so that we know what is happening and can draw up plans to help people to manage the condition.

The depth of the subject tempts me speak for much longer, but as I said at the outset, my purpose is to flag up some of the central issues involved in avoidable deaths and the actions that could be taken to help people who suffer from epilepsy. I will allow sufficient time for other colleagues to contribute and for the Minister to reply to the debate.

Mr Lee Scott (in the Chair): Before I call the next speaker, let me say that I intend to start the winding-up speeches at approximately 10.40.

9.50 am

Paul Maynard (Blackpool North and Cleveleys) (Con): It is a pleasure to serve under your chairmanship, Mr Scott. I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing this important debate.

I am epileptic. I have nocturnal epilepsy. I have tonic-clonic seizures, which, as the hon. Gentleman explained, are the severest form of epilepsy and the form that we all associate with the condition. I am, at least for another fortnight, between the ages of 20 and 35. I am single and, for the avoidance of doubt, I should make it clear that I sleep alone. I am also male, for the avoidance of any further doubt, and it might surprise people outside this Chamber to learn that I work long hours in a stressful occupation—at least I think it is stressful. I therefore tick every box for being at risk of sudden unexpected death due to epilepsy. I go to bed every night knowing that there is an infinitesimally small chance that I might not wake up again. That is, of course, a great concern.

I realise that anyone with epilepsy has a 24 times greater chance of sudden death than the normal population. Those particularly at risk of SUDEP are 23 times more likely again to experience sudden death. That understandably preys on the mind, but what concerns me more than anything else is the fact that I did not learn of all the risks at the time of my diagnosis; I discovered them because I happened to Google my condition. I sat at my computer with a chill going over me, thinking, “My goodness, I never knew any of this could possibly occur.”

I know that that is a wider concern from meeting many people, including a constituent of mine, Avril Walker, who lost her son Christopher to SUDEP when he was aged 19. I have also met many families through 

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Epilepsy Bereaved and Jane Hanna. They all say the same: they have a sense of anguish at the lost of a loved one, which is natural and entirely understandable, but many of them have a much greater sense of frustration that at the time of diagnosis no one explained the risks of SUDEP to them. If they had known, they could at least have sought to undertake mitigating activities to reduce their risk.

I know what those activities can involve. Before my diagnosis, when my epilepsy was not controlled, I managed to throw myself down the stairs. I woke up with my head in a fridge, a washing machine and an oven, which thankfully was not turned on. I threw myself out of bed and hit my head on my bedside cabinet, making a large gash only just above my eye. When I went to accident and emergency, I was told, “Oh, you’ve just been drinking too much.” The irony, of course, is that the treatment for my epilepsy involves the avoidance of any alcohol. That is what makes it so difficult to control: if any alcohol is used in any food that I inadvertently eat, I will have a seizure in the night.

Thankfully, I adhere to my medicine. The diagnosis is so important because there is no greater impetus to adhere to medication than the knowledge of what might happen if one does not. The most sacrosanct thing in my life is ensuring that I have my medicine. I live what is essentially a double life—I am down here half the week and up in Blackpool the other half—so it can be quite difficult to ensure that I have the little packet of pills that I usually carry around with me. If I am without them, panic ensues and I have to rush down to the Victoria walk-in centre to get an extra prescription. May I complain to the Government about its being shut in a month’s time?

Ms Diane Abbott (Hackney North and Stoke Newington) (Lab): I am listening with great interest to the hon. Gentleman’s personal experience; our debates are always enhanced by such contributions. Does he think that there is any particular reason why doctors are unwilling to tell people diagnosed with epilepsy about the risk of sudden death?

Paul Maynard: I thank the hon. Lady for that pertinent intervention. I was intending to come to that. I think that all doctors dislike dispensing bad news. It is perhaps the least fulfilling part of the job. I am sure that some of the doctors to whom I have spoken think that the moment of diagnosis is not necessarily the appropriate moment for a detailed discussion starting, “Oh, and by the way, you’re 23 times more likely to die now, so you need to do this, this and this.” However, it underlines the importance of epilepsy specialist nurses, who can have a more structured conversation one or two weeks later, after people have got over the shock of the diagnosis.

The diagnosis is a shock. When I was diagnosed in my early 20s, I had no idea when I went to the doctor’s that morning that he would tell me that I had epilepsy. I was stunned by the news. That might not have been the most appropriate time to say, “And by the way, you’ve got all this to deal with as well.” None the less, it is vital that that structured conversation occurs at some point soon after diagnosis, because it is possible to do things to mitigate the condition, even if it is just blunting the sharp corners of one’s bedside cabinet, lowering the 

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height of the bed or fitting a child gate above the stairs. If one knows what is likely to occur, one can at least try to mitigate it.

It also underlines the dramatic importance of adhering to medication. Many of the young people who are most susceptible live what one might call chaotic lives. They do not always pick up their medication. If they are away at university, they are not under parental control and one cannot monitor their medicinal intake precisely. If they are aware of the risks, a degree of self-discipline might be brought into play to ensure that they stick to their medication regime. I have heard time and again that sudden deaths seem to occur particularly in a university setting. That concerns me. Self-discipline is necessary as early as possible, and the diagnosis and explanation process are fundamental.

When the worst occurs—tragically, it will occur, because one can never iron out the risks entirely—a much better post-death process is needed. It is natural for the family to be shocked, particularly if they were not expecting it and had not been made aware of the risk factors. There is a lack of awareness in the coroner service and among the police. There can be nothing worse than finding one’s child’s bedroom turned into a crime scene because police are not aware of the potential for sudden death from epilepsy. All that could be much better handled with instructions from on high. The coroner service in particular needs to make a list of national charities dealing with sudden death to which families can turn for help. That would be of great assistance, because many people simply do not know where to turn.

I beg the Minister to encourage the medical profession to ensure that some medical professional has a conversation either at diagnosis, if they feel it appropriate, or within a fortnight or so, to explain the risks. That alone would make a difference, rather than a conspiracy of silence that leaves those with epilepsy to find out about it for themselves. If that conversation occurs, at least people can try to take the actions necessary to protect themselves. That would make the most difference.

9.59 am

Paul Flynn (Newport West) (Lab): It is a pleasure to serve under your chairmanship for the first time, Mr Scott. I warmly congratulate my hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) on obtaining this debate and on his splendid contribution, which covered the ground of all the campaigning groups working on behalf of those with epilepsy.

It is a great pleasure to follow the most important and worthwhile speech that will have been made in the House today, whatever happens in the Chamber. It is enriching for us to have the hon. Member for Blackpool North and Cleveleys (Paul Maynard) in Parliament. We are not members of the same party, but I will happily embrace him as a friend and call him such. Hearing at first hand from those who suffer from illnesses or disabilities is of enormous value to us. There is nothing better than to hear from the hon. Gentleman about the simple changes that might be necessary, such as blunting sharp corners and taking simple precautions, to avoid the tragedies that occur all the time. I welcome his presence in the House. If this House is to restore our greatly damaged reputation—it is of profound importance to us all that we win back the trust and confidence of this 

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country—we need more Members such as the hon. Gentleman with experience that can give us diversity. The House must become more representative of the nation in every way.

My reason for speaking in this debate relates to a matter involving two constituents and lifelong friends of mine, Gwyn and Gill Thomas. I knew one of their daughters, Rhian, throughout her brief, radiant life. Her parents were devoted to her. On a visit to Florida, the place where Rhian was happiest, she died suddenly during the night. There was no warning or expectation, and Gwyn and Gill were left shocked, as would we all at the untimely death of one of our children, and bewildered by what had happened. As in many cases when a family experiences terrible grief, they have become enthusiastic campaigners to ensure that no one else suffers in the same way as they have suffered. They wish to avoid this being repeated in other families—a strong and understandable reaction. My hon. Friend the Member for Birmingham, Selly Oak has mentioned the concerns, and I have heard about them first-hand in the House from other parents who have lost young people in similar circumstances.

Channel 4 covered the case of the Casey and Ilia fatalities, which involved two families who suffered in a similar way. Erin Casey was aged 19 and Christina Ilia was aged 15—one a university student and the other a schoolgirl. The sheriff concluded that, had Erin been told of the risk of sudden unexpected death in epilepsy, she might have picked up her prescriptions and complied more with her medication—she might not have died. Had there been supervision in the form of nocturnal devices, which have been discussed, Erin might have wanted them and might not have died. On the death of Christina, the sheriff found that, had she and her parents been told of the risk, they would have discussed and considered the possibility of providing night supervision, possibly by use of alarm. If Christina had had such supervision, she might not have died during the night. The judge recommended that there should be a discussion of SUDEP in order to reduce the risk at diagnosis, unless there was serious harm to the patient. The timing of the discussion should be deferred, but needs to be planned. The role of a specialist epilepsy nurse is vital, and the failure of the authority to provide a specialist nurse service was viewed as contributing to the death. Those points were well made in the television programme and must be of concern to us all.

My hon. Friend has given a list of the possible remedies—drugs and how they should be used, and the existing advice—that appear to be available. Part of my constituents’ additional agony as a result of their bereavement is that they were not informed of many of the things that they have heard about since Rhian’s death. They want to go out and make sure that everyone else is aware of the possible remedies that could avoid such tragedies in the future. As with many other subjects discussed in the House, my views on this issue are the result of constituents’ problems. I thank the persistence of the campaigning of my constituents and all others who are determined that everything possible is done to avoid these unnecessary deaths.

10.5 am

Ms Diane Abbott (Hackney North and Stoke Newington) (Lab): It is a pleasure to serve under your chairmanship for the first time, Mr Scott. I congratulate my hon. 

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Friend the Member for Birmingham, Selly Oak (Steve McCabe) on securing this debate and on the work that he and the all-party group on epilepsy are doing to spread awareness in Parliament of the nature of epilepsy and to raise the profile of epilepsy and its related problems.

As we have heard, epilepsy currently affects almost 500,000 people in the UK. It is one of those conditions that, I think, excite a certain fear among people who are not familiar with it. One of the important aspects of the all-party group’s work is to get past that fear barrier, so that people understand and the climate is created in which services can be commissioned properly.

We have heard about the danger of sudden unexpected death in epilepsy and that it affects the younger age demographic in particular. I understand that an information resource has been issued in Wales and Scotland on the risks and prevention of SUDEP. Is such a resource currently available in England?

Certain factors can increase the risk of SUDEP, and hon. Members have referred to them, drawing on their personal experience. The total number of people dying needlessly of epilepsy each and every year is more than the total of AIDS-related deaths and cot deaths combined, yet for some reason SUDEP deaths have never had the same prominence in the public imagination and public debate as issues such as cot death and AIDS. It is also most unfortunate that the death rate in Britain for SUDEP is 25% higher than the average for the European Union. This is a difficult topic and I understand that doctors may have a certain reticence to discussing the risk with young people at the point of diagnosis, but if our death rate is 25% higher than that of the EU, it shows that more can be done.

A straightforward and important suggestion has been made that medical practitioners should be required to have that discussion with people soon after diagnosis. As we have heard, it is young people between the ages of 16 and 35 who are at greatest risk. That is the age, certainly if my life between 16 and 35 is any example, at which people are least inclined to listen, behave sensibly or take advice. That makes it doubly important that there is a formal requirement for a medical practitioner to sit with young people and explain exactly what the risks are.

In preparing for this debate, I looked at the National Institute for Health and Clinical Excellence guidelines on epilepsy. They recommend that all people with suspected epilepsy should be seen by a specialist, but I understand that half of acute trusts—49%—do not employ one. NICE guidelines also state that people with suspected epilepsy should be seen urgently within two weeks, but I understand that the waiting lists of most trusts—more than 90%—are longer than that. Will the Minister comment on what action his Department is taking to ensure that people diagnosed with epilepsy are seen more promptly in the future?

A further recommendation from NICE relates to epilepsy specialist nurses. NICE guidelines state that they should be an integral part of the medical team providing care to people with epilepsy, but more than half of acute trusts and PCTs in England do not have one. How will the Minister ensure that trusts in England and, of course, clinical commissioning groups use NICE guidelines to plan and commission epilepsy services? Will the Department of Health agree to treat the matter 

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as a priority and put an end to the current situation, where people with epilepsy continue not only to have a poorer quality of life, but to face a greater risk of dying? As I have said, there is a 25% higher death rate here than in the rest of the European Union.

We know and respect the fact that the Prime Minister has personally pledged to raise the profile of epilepsy and to tackle the stigma that surrounds the condition, to which I referred earlier. I understand that the Prime Minister has met my hon. Friend the Member for Walsall South (Valerie Vaz) to discuss her ten-minute rule Bill on epilepsy. We know from the Epilepsy Society that, during the meeting, the Prime Minister agreed to consider the Bill and look at improving health and education services for people with the condition. In a letter to Lord Howe dated 16 May 2011, the Prime Minister acknowledged that

“there are historic weaknesses in the commissioning of services”

and that there is an urgency for change

“because these failures carry huge costs as well as having a massive impact on the lives of people with epilepsy”.

The Prime Minister concluded that there are

“potentially very significant savings from unplanned emergency admissions to be made by getting this right, which goes hand-in-hand with improvements in outcomes, including life expectancy and a reduction in the number of tragic sudden deaths in epilepsy”.

Labour Members respect the Prime Minister’s genuine concern about this condition, but I think the Minister would agree that we need to move on to action. The Epilepsy Society was very encouraged by what the Prime Minister had to say. He said that he would get back to Epilepsy Action but, to this day, he has not made any specific commitments. Does the Minister know whether the Prime Minister has had a chance to consider the points put to him by my hon. Friend the Member for Walsall South, representatives of the Joint Epilepsy Council and the hon. Member for South Thanet (Laura Sandys), who chairs the all-party group on epilepsy?

The Minister will also be aware that, during the last year of the Labour Government, the Joint Epilepsy Council won the support of the then Health Minister, Ann Keen, who so recently suffered a sad bereavement. She initiated a conference of epilepsy commissioners, which took place in January 2010. That was branded as jointly organised by the Department of Health and the Joint Epilepsy Council—a true partnership. Will the Minister tell hon. Members what discussions he and his colleagues have had with stakeholders and whether he is working with the Joint Epilepsy Council to address the shortfalls in service provision for people with epilepsy in England?

As I am sure that the Minister is aware, Epilepsy Action has carried out a study that revealed the variations in service provision, data collection, evaluation and quality of care. In the course of its study, it became apparent how many of NICE’s recommendations are still not being met, particularly in terms of access to specialist consultants and nurses, as I said earlier. Taken together, the facts from the survey do not paint a picture that is wholly encouraging. Some epilepsy sufferers and their families feel that it is a forgotten condition, which is why this debate is so important.

As the Minister will be aware, Epilepsy Action has called on the Government to take a lead in driving improvements to epilepsy service provision. Among other things, Epilepsy Action is calling for a national 

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clinical director for epilepsy to ensure that local commissioners carry out a review of the implementation of the NICE guidelines, NHS work force planning to focus on the recruitment and training of sufficient epilepsy specialist consultants and nurses, commissioners to build a clearer picture of the epilepsy population in their area, a commitment to ensuring that all patients with suspected epilepsy see a specialist within two weeks, all acute trusts to have adequate diagnosis equipment in line with the patient population they serve and all patients to receive an annual review of their epilepsy. That would particularly help younger patients, who would be reminded, if they have forgotten, of the seriousness of their condition and of the things that they should be doing to help themselves.

Epilepsy Action is also calling for the introduction of effective transition services for children moving into adult epilepsy. Again, that is particularly important to the younger cohort. Finally, Epilepsy Action wants the Minister to consider ensuring that all patients with epilepsy who want a comprehensive care plan can get one. The Minister will be aware of those recommendations, and hon. Members want to hear how he plans to respond.

As I said at the beginning of my remarks, this condition excites a certain fear and, even today in 2011, a touch of stigma. Particularly for younger people—I consider people under the age of 35 to be young—the condition poses a risk of sudden death. That risk is higher than in other European countries, which suggests that there is something we can do. We know—the whole House knows—that the health service is going through a period of transition and change. I will not use this debate to challenge the changes that are going to happen, but because we are going through a period of change, it is very important that the measures are in place to ensure that the care people receive for such a condition is as good as it has ever been, particularly in relation to commissioning services locally. It is also important that we move forward with the improvements and pay attention to the quality of life of epilepsy sufferers that people campaigning on epilepsy have sought for many years. I await with interest the Minister’s response to the points that I have raised.

10.17 am

The Minister of State, Department of Health (Paul Burstow): I, too, am pleased to serve under your chairmanship, Mr Scott. I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing the debate and on being so persistent in applying for it week after week until, finally, being successfully in the ballot for Adjournment debates. The hon. Gentleman is right to bring the matter back to the House for a debate and I am grateful to all hon. Members who have contributed. The personal testimony and the testimonies we have heard on behalf of constituents speak to the devastation that the condition can bring to families and the people who suffer from it.

A lot of statistics have rightly been rehearsed to illustrate those points as part of today’s debate. They are undoubtedly very compelling and, as has rightly been said, quite depressing. They show that although we have known for a long time what needs to be done, it 

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does not appear to be implemented as consistently as it should be across the country. There are places that follow the NICE guidelines and consequently make a difference, but over many years other areas have failed to invest or see the matter as an area of priority. That is not a comment on previous Governments’ records, but an acknowledgement of the difficulty in an organisation as large as the NHS of ensuring sufficient focus on something as important as this.

The hon. Member for Hackney North and Stoke Newington (Ms Abbott) paid tribute to the work of the all-party group on epilepsy. I come across many APPGs in pursuing my ministerial responsibilities; they are, truly, an important part of how this Parliament makes sure that the voices of many seldom-heard groups—or groups certainly not heard often enough—are heard by Ministers and the Government.

I will try to ensure that I respond to all the points that have been made. I have been encouraged to speak for as long as is necessary to do just that.

Paul Flynn: Will the Minister give way?

Paul Burstow: There is an objection to that point. I give way.

Paul Flynn: Members have, very generously, given the Minister 40 minutes to reply to the debate, which is rather longer than Ministers usually have. Will he find time in that 40 minutes to commit to the practical, affordable remedies that have been urged on him by the many charities involved in SUDEP?

Paul Burstow: I hope to do just that, and I hope to do justice to the points that the hon. Gentleman and other hon. Members made in the debate.

At least one hon. Member—my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard), who initiated the debate we had about a year ago—has contributed to the debate on this issue again. The message I took from last year’s debate was clear, and I take it again today. There is a real sense that we need change in the system. We need change that delivers a real focus on issues such as epilepsy to ensure that clinicians and the service respond properly to the evidence, act on the evidence, and translate it into services that are fit for purpose. At the moment, the service continues to fail hundreds of thousands of people living with epilepsy, at a huge cost to them personally and to their families. When we debated these issues a year ago, there was some uncertainty about how the Government’s plans for reform would deliver improvements. I would like to spend a little time today setting some of them out.

Ms Abbott: Will the Minister give way?

Paul Burstow: In a moment, if I may. We have plenty of time. I just want to say something about the voluntary sector, and then I will happily give way to the hon. Lady.

The outlook for most patients with epilepsy is good—it is important to acknowledge that—but we know that more than 1,000 people die of epilepsy-related causes each year. Many of those deaths are due to accidents or status epilepticus, but a significant number of them are attributable to SUDEP—sudden unexpected death in 

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epilepsy. The devastating effect of any epilepsy death cannot be overestimated and cannot be understated. I pay tribute to the many voluntary sector organisations that have been referred to in this debate. They work hard to highlight the challenge, and to ensure that the failings that have been described are identified and tackled.

Ms Abbott: In preparing for the debate, I was struck by how much higher our rate of sudden unexpected death in epilepsy is, compared with that in the rest of Europe. Do Ministers have any analysis of why that might be?

Paul Burstow: I will come on to outcomes and information in a moment. Understanding the performance of our health economies, compared with that of other systems around the world, is an important part of how to ensure that we focus on what matters most to deliver change and improvement. I will talk about outcomes, data and variation in a moment, if I may.

I particularly want to acknowledge the work of Epilepsy Bereaved, which since its foundation in 1995 has led cutting-edge work to establish major risk factors and ways to reduce risks and prevent deaths. The charity provides very well-regarded bereavement support, which helps to break the isolation that people experience following SUDEP, or other seizure-related deaths. I acknowledge the organisation’s concerns that failings in care and the commissioning of services have led to many avoidable deaths from SUDEP.

In the 12 months since we last debated epilepsy services in Westminster Hall, we have made significant strides in putting in place the necessary arrangements to level the playing field in commissioning epilepsy services relative to other services.

That leads me on to the NHS outcomes framework. The hon. Member for Hackney North and Stoke Newington referred to the NICE guidelines and the role of specialists. One role that the NHS outcomes framework can play is to ensure that commissioners, providers and others are better able to identify those things that can drive up performance in the NHS. The publication of the first NHS outcomes framework marks the start of a journey for greater transparency and accountability for the outcomes that the NHS achieves for patients. It demonstrates a move from traditional input and output targets towards a focus on delivering better health outcomes for all. The framework includes a focused set of national outcome goals and supporting indicators that patients, the public and Parliament will be able to use to judge the overall progress of the NHS. A number of those goals and indicators are relevant to epilepsy. They will, of course, inform the Secretary of State’s mandate to the NHS commissioning board and, in turn, to the NHS commissioning framework.

Let me give a few examples of the relevant indicators. In domain 1 of the NHS outcomes framework—preventing people from dying prematurely—the overarching indicator is about mortality from causes considered amenable to health care. This debate demonstrates graphically that epilepsy is one of the conditions where there is plenty of room for significant progress. The hon. Member for Hackney North and Stoke Newington rehearsed the statistics, which are compelling. They point, very powerfully, to commissioners having to look at this if they are deliver measurable improvement against that indicator.

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Domain 2, enhancing quality of life for people with long-term conditions, speaks directly to the issues addressed in this debate. The overarching indicator is health-related quality of life for people with long-term conditions. It addresses such specific issues as the proportion of people feeling supported to manage their conditions. That speaks directly to issues such as care planning and case management. That indicator is not just in the NHS outcomes framework; it also sits within the adult social care outcomes framework, to try to align more joined-up thinking and commissioning on these issues. Improving functional ability in people with long-term conditions relates to ensuring that more people are able to stay in employment.

There are many other indicators. The aim of domain 3 —helping people to recover from episodes of ill health or following injury—is to capture information on patients’ journeys through the system. Domain 4—positive experiences of health care—will look at such things as patients’ experiences of primary care. My hon. Friend the Member for Blackpool North and Cleveleys described the conversations that should happen, and they should be captured.

The emerging commissioning landscape will contribute to improving not just epilepsy outcomes but outcomes across the board. In the past, commissioning has been too remote from the patients it is intended to serve. Commissioning decisions made by clinical commissioning groups will ensure that they are underpinned by clinical insight and knowledge of local health care needs, and, importantly, the perspective of the patient and family carers. Clinical commissioning at its best is a collaboration of professionals. The NHS commissioning board and clinical commissioning groups will be required to obtain clinical advice from a broad range of professionals with expertise in the

“prevention, diagnosis or treatment of illness”—

and in the—

“protection or improvement of public health”.

There is a real pull in the framework that we are putting in place to make sure that that happens. As well as promoting effective clinical leadership and multi-professional collaboration around specific conditions and pathways, we expect doctors, nurses and other professionals to come together in clinical senates to give expert advice from a variety of health and social care perspectives.

NICE has rightly been alluded to a lot. The Government intend to build on its strong track record by re-establishing it as a statutory body. It will continue to play a key role in the NHS through the production of robust, evidence-based advice and quality standards. I will address the issue of quality standards specifically. The hon. Member for Birmingham, Selly Oak asked about surgical interventions in the context of the work being done to produce quality standards covering epilepsy services. They have already been commissioned by NICE and will cover children and adults separately. I will pass on the point that was made about the need to address issues of transition, so that that is not overlooked in producing two separate quality standards. In the children’s quality standard, there is a specific need to address access to surgical interventions, and it will be addressed.

HealthWatch has its part to play, and will better enable people to help shape health and social care services, at both a local and national level, by providing 

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a strong forum where the views and experiences of patients, carers and the public can influence the commissioning process and improve the quality of health and social care services. There must be a clearer split of responsibility—a sense of joined-up access across the care pathway to deliver a less fragmented and more person-centred approach to planning. We accept that care and support for those with long-term conditions is a particular area where we do not get it right often enough. Not only are patients confused but their care and quality of life are compromised, and it leads to inefficiencies and duplications in the system.

The hon. Member for Birmingham, Selly Oak asked me specifically about prisoner health. One of the opportunities that arises from the establishment of the NHS Commissioning board is that it will be the commissioner of prisoner health. With it leading on such work, we are in a much better place to assure ourselves that the NICE guidance on prisoner health and epilepsy is properly and consistently applied throughout the prison estate. I shall certainly pass on any further information that I can to the hon. Gentleman.

Ms Abbott: I have listened with great attention to the Minister and, naturally enough, he has started with generalities, but the nature of Westminster Hall debates lies in the opportunity for Members to get replies to specifics, so I have three questions arising from the speeches today. First, do the Government intend to appoint a national clinical director for epilepsy? The hon. Member for Blackpool North and Cleveleys (Paul Maynard) asked specifically about people being able to talk about sudden unexpected death within a couple of weeks of diagnosis, but am I to take it that the Minister has no means to direct that and will leave it to commissioning groups to decide what is appropriate? Finally, are the Government prepared to commit to the explicit inclusion of epilepsy mortality in the outcomes frameworks?

Paul Burstow: The hon. Lady needs to be patient, because I still have quite a lot of sheets of paper and quite a lot of answers to give. Before I took her intervention, I had answered a specific question on prisoner health from the hon. Member for Birmingham, Selly Oak. I am trying my best to cover the ground.

I will deal with the national clinical director proposition. As part of the transition—the hon. Lady alluded to this—from a command-and-control system in which the NHS is directed from the Department of Health to a model in which the service is at arm’s length and directed through goals and objectives set to a mandate, the NHS commissioning board will be where national clinical directors sit. The national commissioning board will make the decisions on the precise configuration of those appointments. Clearly, that will be modelled on the approach taken on an outcomes framework, so that there is proper coverage of all its domains. That is as much as I can say today, and perhaps we need to have a further debate, but if she wants more information, I will happily write to her with more detail. I cannot say today, however, that there will be a DH-appointed epilepsy national clinical director, because that is the old world and we are moving to a new world, whether 

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we agree about that or not, and in that new world the responsibility for making choices about the appointment of national clinical directors will sit with the NHS commissioning board. That is as clear an answer as I can give to her question. I will answer the others as we move on.

Assessment of need was mentioned in the debate and goes to the heart of a challenge for the charities. My experience over the past 12 months of talking to many non-governmental organisations that advocate on behalf of patient groups is that some see huge opportunities in reorganising themselves to get much closer to the new commissioners and to those who will shape priorities for local services at a local level, and they are looking to organise themselves accordingly. Others are finding it more difficult to think through how to organise themselves to do that, and are therefore looking to how they can use the old levers, encouraging the Department of Health to proceed through central fiat and direction. My job is to say that that is not how it will work and, if they expect that that is how things will happen, they will be sadly disappointed. The Department and I as a Minister are only too pleased to work with organisations to ensure that they can realise and exploit the full potential of the new arrangements such as the health and wellbeing boards, the clinical commissioning groups and their duty to engage with their public, their patients and carers. Organisations, including some of the epilepsy charities, need to think that through carefully.

Health and wellbeing boards will be the local system leaders and will drive joined-up health and social care services. They have a key role, with joint strategic needs assessment and joint health and well-being strategies, in which they understand the population need and future population need, and that in turn drives commissioning for populations and outcomes. Simply said, to ensure that those joint strategic needs assessments are rich and informed, charities in the sector have a part to play in the conversation, to ensure that their input is not lost. NICE clinical guidance and quality standards play their part as well.

The hon. Member for Birmingham, Selly Oak asked about research. Who could disagree—I certainly do not—that the case for more research is strong? Again, however, directing more research through ministerial instruction is not how we should proceed. That might get more research but it does not guarantee quality, which is why we have for a long time had the Medical Research Council leading, with independent peer review as the process for allocating research resources. As in many other spheres, the key is to ensure the crucial infrastructure to support quality bids in the first place—the better the quality, the better the chances of an increase in the resources. We saw that with dementia; the Government had a priority to invest more but did not achieve that simply by putting up a quantum and stating that “This is what we must now spend.” Simply, it is about putting in place the steps to ensure quality research bids in the first place.

The information revolution is another important part of delivering the agenda. Today’s challenge in providing high-quality care services cannot be met without effective use of information. At present, many people who use our health and care services do not get the information that they need and expect as part of the care process, which we have heard described graphically. We sometimes 

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fail to meet the information needs of our clinicians and care professionals, so information is critical to our ambition to put people in the driving seat of their services and their care. Through the work of the NHS Future Forum so far, we are examining how to ensure that the information strategy that will be published fully reflects the various concerns expressed.

The hon. Member for Hackney North and Stoke Newington asked a specific question about whether the information provided in Scotland and Wales is available. The answer is yes. There are comprehensive information sources available on NHS Choices, including a guide to epilepsy that contains information about SUDEP and minimising risk. The use of things such as NHS information prescriptions and, as we develop more of them, tools to help patients and clinicians make decisions are ways of further strengthening that important notion of “no decision about me without me”.

The hon. Member for Newport West (Paul Flynn) talked about his constituents Gwyn and Gill Thomas, the tragic death of their daughter from SUDEP and how they felt bewildered and, I suspect, outraged that they did not get information on which they could have acted at the time. That has spurred them on, and we can probably find echoes of that in every constituency surgery throughout the country—people motivated by personal experience to ensure that it happens to no one else. The hon. Gentleman’s example of the case of Christina and the lack of knowledge of risk underscored the as-ever exceptional contribution of my hon. Friend the Member for Blackpool North and Cleveleys to today’s debate. By talking about his own experience, he illuminates a much wider and more important picture about the frailty of human beings and their reluctance sometimes, even when professionally trained, to engage in the conversation that they are paid to have, which ultimately is a conversation about life or death. We know that NICE has set out clear guidance on care planning and case management, which provides good evidence of how they can make a difference.

The guidance also talks about the role of epilepsy nurses, and the hon. Member for Hackney North and Stoke Newington asked how the Department helps with their availability. One of the ways we help is by ensuring that good tools are available for local business cases to be put to commissioners locally. We do not mandate from the centre a certain number of such members of staff, but we make it clear through the regulatory framework and other ways that the skill and staff mix of organisations has to be appropriate to the services that they are providing. There is as well a strong economic case for epilepsy nurses to be commissioned, because of how they can have that honest conversation with the individual concerned.

Another way we can play our part at national level in raising the profile of these issues and making commissioners think through how they commission services effectively is through the development of outcome strategies. We have outcome strategies for respiratory and mental health conditions, and I recently announced the Government’s intention to develop a cross-Government outcome strategy for long-term conditions. The purpose of the strategy is to take a life-course approach. It will draw on the Government’s approach in developing our mental health strategy. Shaping it will involve a wide range of stakeholders beyond the Government.

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The hon. Lady rightly rehearsed the Prime Minister’s enduring interest in these issues, which spans the whole health sphere. That is why he continues to pursue and to follow closely the key work of Health Ministers in taking forward the legislation to reform the NHS. I will inquire about the correspondence and find out what has happened about that.

Reference was made to the Joint Epilepsy Council and its activities. I applaud its work, but I must make it clear that the future of our public services is in a local rather than a national context. For the NHS, it is not about running commissioning services for specific conditions from the Department of Health; it is about local clinical commissioning groups working locally with patient groups and others better to understand local needs and to ensure that they structure services with those in mind.

Steve McCabe: I accept the case that the Minister is trying to make for the new commissioning arrangements, but, like many of us, charities and help groups that work with epilepsy are not entirely clear about how the new arrangements will work. Does he have any plans to meet the epilepsy groups so that he can better explain his ambitions and how those groups will be able to play a central role in the new world that he envisages?

Paul Burstow: It was kind of the hon. Gentleman to intervene, because it allows me to answer his final question. The Department continues to work with the charities and to discuss their concerns, and I am happy to arrange a meeting to have such discussions.

Paul Flynn rose—

Ms Abbott rose—

Paul Burstow: I will give way to the hon. Gentleman while the hon. Lady frames her questions—she clearly has one or two—and I will then give way to her.

Paul Flynn: I have listened with great attention to the Minister. I am aware of his record in opposition as a doughty campaigner for many causes. The Government are obsessed with change and upheaval in health service structures. Can he provide some practical assurance that by the end of their term of office, if they go to 2015, there will be fewer sudden unexpected epilepsy deaths?

Paul Burstow: I have referred to the focus on outcomes and the establishment of an outcomes approach not just to commissioning services, but to how we measure the performance of services. That provides hope of an improvement. The issue is not just a high-level one. I have not talked about specific statistics today, but sitting behind each and every indicator in the outcomes framework for the NHS are hard metrics that are being used to identify variations between parts of the country. We have seen in other services—for example, cancer services—how powerful the publication of atlas data, which shows performance in different localities, is at challenging clinical teams and challenging commissioners to commission differently and better. I genuinely believe that that approach and the focus on outcomes and data are key drivers to improving future performance.

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Ms Abbott: I have listened with great care to the Minister, who has been at pains to outline that we are moving from a world of command and control health provision to a world in which individual clinical commissioning groups will make decisions for their locality. Should the groups that are lobbying on epilepsy take from this debate a message that the days of lobbying at national level are effectively over, and that they must mobilise themselves to lobby commissioning group by commissioning group?

Paul Burstow: They must certainly be prepared to engage a lot more at local level. That is an important part of commissioning to fit the needs of postcodes rather than by prescribing from the centre and having postcode lotteries. It is not possible from so far away to be clear about the specific needs of a population. That is why the change is so important. However, the Department of Health expects and Ministers want to have a relationship with those organisations, because they can inform the shape of the mandate that the Secretary of State will set for the NHS. They can inform the way in which NHS outcomes framework, the adult social care outcomes framework and the public health outcomes framework operate, and their priorities. There will still be a rich conversation at national level about action, but there will be an even richer conversation about outcomes, performance and commissioning, which need to be local.

In conclusion, I am grateful to the hon. Member for Birmingham, Selly Oak for calling this debate and his perseverance in applying for it. He has rightly rehearsed a matter that has been neglected for too long. I believe that the Government’s changes, particularly our focus on outcomes and greater respect for clinical judgment at local level, will deliver improvements in services and quality of life, and indeed will save lives through improved commissioning at local level.

10.46 am

Sitting suspended.