Forgotten illness kills 400 a year

Annabel Ferriman reports on a fatal syndrome of epilepsy
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The Independent Online
JENNY BRAIDWOOD died one evening while wrapping presents on her bed. It was two days before Christmas, she was eight months' pregnant and had just started maternity leave. Her 18-month-old son, Spike, was asleep in the next room but her husband, Ivan Western, was away. He was staying overnight at his mother's following his office Christmas party.

When Mr Western returned to the couple's home in Brighton the next morning, he found his wife dead. The ambulancemen could not resuscitate her; nor

could they save the unborn child.

Jenny's tragic death, at 34, was due to epilepsy, the forgotten illness which affects 350,000 in Britain but attracts less attention than any other chronic disease.

"She had everything to look forward to," Mr Western said. "She had just cleared her desk at the Brighton healthcare trust where she worked as an accountant because she was only two and a half weeks away from the birth of her baby."

Ms Braidwood died from a little-known syndrome called Sudden Unexplained Death in Epilepsy (Sudep), which is thought to kill 400 people a year in Britain, many of them young and healthy.

Now a charity, Epilepsy Bereaved, has been set up to publicise the fact that epilepsy is a killer and to get a better deal for sufferers. It will be launched after a memorial service, in memory of those who have died, at St James's Church, Piccadilly, London, next Saturday.

"Medical professionals have, in general, not accepted that people can die from epilepsy," said Jane Hanna, an Oxford don and one of the organisers of the new charity, who lost her partner, Alan Pring, to Sudep in 1990. "To be told after the death that people do not die or rarely die from epilepsy leaves a family feeling isolated and neglected."

Around 800 people die from the disease each year, the deaths resulting not just from Sudep, but also from injury and accident incurred while having a seizure and from continuous fitting. Yet although this death toll is equal to the number of deaths from meningitis and cot deaths put together, the illness attracts little research money - 20p per year per sufferer - compared to pounds 250 per person with muscular dystrophy and pounds 140 per person with multiple sclerosis.

Service provision is patchy, with only three out of five sufferers being referred to a neurologist, and between a third and a half of patients not receiving all the relevant investigations.

There is a huge discrepancy between the number of patients who are given brain surgery and those who could benefit from it. Only about 200 operations are done each year, while between 600 and 1,000 could benefit, and there are about 15,000 patients waiting for surgery. "There is a discrepancy between what is practised and what is possible," said Professor Simon Shorvon, of the National Hospital for Neurology and Neurosurgery, London. "Epilepsy surgery is so outstandingly successful, it is hard to think of anything which can transform the prognosis so radically."

Jenny, whose epilepsy was due to an abnormality in her front temporal lobe, could have benefited from brain surgery. She had her first fit in March 1994, but by the time she saw a neurologist the following September, she was already five months' pregnant. She was scheduled to have surgery in March 1995, six weeks after the baby was due.

Following a meeting between the new charity and health minister John Bowis last month, the NHS is sending out a letter to chief executives of districts and trusts asking them to work towards best practice in treating epilepsy. It is also dispatching a model service specification for health authorities and trusts, which has been drawn up by the Epilepsy Task Force, a pressure group of professionals and patient support groups.

The task force is chaired by Dr Stephen Brown, consultant neuropsychiatrist. He is one of the few scientists conducting research into the causes of Sudep.

Unfortunately, when people die from Sudep, the cause of death is often wrongly recorded on the death certificate as suffocation. This means that it is hard to collect accurate figures and that many parents, or other relatives, are left with the feeling that they might have been able to prevent it.

"We hope that the new charity will give people accurate information about sudden, unexpected death and provide mutual support, as well as pressing for more research and better services," said Ms Hanna.

Epilepsy Bereaved, PO Box 1777, Bournemouth BH51YR

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