Epilepsy

Jim Shannon Excerpts

Tuesday 29th November 2011 Westminster Hall

[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.