Epilepsy

Nia Griffith Excerpts

Tuesday 29th November 2011 Westminster Hall

[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.