Whitsun Recess

Sajid Javid Excerpts

Thursday 24th May 2012 Commons Chamber

[Claire Perry (Devizes) (Con)]

It is a pleasure to follow the hon. Member for West Ham (Lyn Brown), who spoke eloquently on an important topic. I look forward to our “walk for life” together.

As I am sure everyone knows by now, I represent a military constituency. with 10,500 soldiers and at least the same number of family members, but because I have a tiny job helping the Secretary of State for Defence, I can never speak on military matters, so there is no point in hon. Members lobbying me about cap badges. I meet many members of the armed forces in my surgeries, however, and I want to speak today about a story that I heard during one such meeting.

Jan and Barry Burns came to see me in my surgery in Ludgershall, in the south of my constituency. Barry is a serving Army officer. I felt incredibly moved and educated by what I heard, and I was glad that I had boxes of tissues handy. They came to tell me about their son Charlie, who died unexpectedly last year at the age of 10. I have a boy who will be 10 this summer, and it was very moving to be presented with that tragedy.

Charlie Burns was a completely fit, well and happy 10-year-old who had an epileptic seizure, completely out of the blue, on Friday 7 October. The paramedics arrived well within the target time, but they made a diagnosis that many people think was incorrect. They diagnosed a febrile convulsion, even though there was no associated temperature. Over the weekend, Charlie was fine, but subsequently his parents took him to their GP, as he was a little unwell. The GP correctly suggested that Charlie had suffered an epileptic seizure and that he should see a neurologist.

On Tuesday 11 October, Charlie went to school in Larkhill as usual and was absolutely fine. He was able to see his sister, Isabella, that evening—she goes to boarding school, so it was lucky that they saw each other that day. He went to bed at 8.45 that evening, and when his parents went to check on him later, they found that he had died in his sleep. They were of course horrified. Their little boy had, until the previous week, been incredibly healthy. The coroner diagnosed the cause of death as sudden unexplained death from epilepsy—SUDEP—involving a massive cerebral haemorrhage.

The reason that Mr and Mrs Burns came to see me was that they had never heard of SUDEP before that awful tragedy struck their family. In fact, SUDEP kills more people in the UK than AIDS and cot death—conditions we have all heard of—combined. We have been educated recently to understand certain other conditions, including strokes—there has been a very good national education campaign to help us to understand the signs of strokes and what happens when someone suffers a stroke.

It is fitting that this week is national epilepsy week, running from 26 May. Charlie’s parents really made me aware of this condition—sudden unexplained death from epilepsy. It is a silent killer. As a result of conversations with the parents, I believe that it is almost unknown, which means that parents are not looking out for the signs, and in many cases nor are paramedics and medical professionals. In my comments today, I intend no criticism of the local paramedic or hospital services; a separate inquiry is ongoing. It was the depths of the personal tragedy and the suddenness of the bereavement suffered by the Burns family that particularly resonated with me.

I ask three things of colleagues today. The first is for them to help me raise the profile of a fantastic national charity, Epilepsy Bereaved, which works with parents and anyone who has suffered a bereavement through epilepsy. We should remember that more than 1,000 people a year are so affected. I was pleased to learn that my hon. Friend the Member for Kenilworth and Southam (Jeremy Wright) had met the charity and done some publicity work last year, for which the family and the charity are extremely grateful. Secondly, there is no national standard register of epilepsy deaths, and one of the charity’s proposals is that the chief coroner should maintain such a record and have a standard diagnosis, so that we can understand the scale of the problem. I would heartily support such a measure.

Finally, we call for a review of the guidance issued to medical professionals, particularly first responders, to help them to look out for signs of that type of seizure in otherwise healthy children. Charlie’s parents told me that children can come back very quickly from such episodes. Charlie came back after his attack and was conscious when the paramedics got there, although he was droopy, drowsy and not himself. If he had been taken to hospital at that point and a brain scan had been done, he just might have been saved.

[Sajid Javid (Bromsgrove) (Con)]

I want to express my support for everything my hon. Friend has said about SUDEP. A few months ago, some parents in my constituency came to see me, having sadly lost their teenage daughter to SUDEP. When their daughter was diagnosed with epilepsy, the parents were not really made aware of SUDEP—the “sudden death” aspect. If they had been told about it at the time, they might have acted differently. They highlighted the need for more publicity so that more people—parents and children—are made aware of it. I congratulate my hon. Friend on raising this very important issue.

[Claire Perry]

I thank my hon. Friend for that intervention. He is absolutely right; it is estimated that more than 40% of these deaths could be avoided with better recognition, better diagnosis and speedier action. Epilepsy is a condition that affects many thousands of people and it is a manageable condition, but Charlie’s parents were subsequently told that he was among the most susceptible to a nocturnal epileptic episode out of the blue, and that such children were at greater risk of dying unexpectedly from this killer.

There is nothing I can say today to bring Charlie Burns back, or give his parents any comfort. I simply want to make as many people as possible aware of this condition, so that we can all help to make sure that similar tragedies do not happen in the future. Thank you, Madam Deputy Speaker.