Epilepsy

Steve McCabe Excerpts

Tuesday 29th November 2011 Westminster Hall

[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.

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 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 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.

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.

--- Later in debate ---

[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 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 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.

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.