Epilepsy

Jim Cunningham 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.