'We didn't know it could kill him'

Tim Suter died of epilepsy at 27, yet he and his family had no idea that his condition could be fatal. Now a report says there are up to 500 unnecessary epilepsy deaths each year. Clare Dwyer Hogg reports

Eighteen months ago, 27-year-old Tim Suter died in his sleep. Cause of death – epileptic fit. Tim had been diagnosed with epilepsy when he was 17, but his death in November 2000 came as a shock to his family. Tim had no idea that his epilepsy was potentially fatal. He took medication but led what seemed a relatively healthy existence, aside from occasional episodes.

Today his mother, Susan Allen, is dogged by the thought that, if they had known more about his condition, her son could still be alive. "We were never given any cause to believe it was serious," Susan insists. "I didn't know until well after he died that death was a risk." After Tim's death Susan requested a letter from his consultant, who acknowledged that he was aware of the risks associated with Tim's condition but didn't feel it was helpful to tell him. "There should be ways of telling the patient," Susan says. "We thought the epilepsy was benign: if we'd understood the risks we would have been much more vigilant."

In the 10 months before he died, Susan had in fact been worried about Tim's health. The drugs he used were changed because they were affecting his white blood cells. When he switched medication, he never achieved proper control of his seizures. This made him depressed, which – Susan reflects – can't have helped his condition. Susan didn't take immediate measures because she believed Tim's epilepsy was not in a dangerous state. If they had known more, she says, they would have put pressure on the GP.

It is often, of course, a natural process of grief that the bereaved search for some responsibility. In Susan's case, though, her concern about the system that treated her son did not come until well after his death. The impetus was her contact with the charity Epilepsy Bereaved, which outlined the risks of epilepsy in a way she had never heard before.

Susan is now a spokesperson for the charity, and last week addressed the All Party Parliamentary Group on Epilepsy. The occasion was the launch of an audit on epilepsy, led by David Fish and conducted by the National Institute for Clinical Excellence (NICE). The report said that up to 500 people die unnecessarily each year in what the medical profession call Sudep (sudden unexpected death in epilepsy). Why? As well as highlighting poor medical investigation and inadequate drug management as causes, the report focuses on the fact that the risks associated with the condition are rarely discussed with the patients.

Professor John Duncan, the medical director of the National Society of Epilepsy, is entirely sympathetic with Susan's situation, but says it is impossible to generalise about codes of practice when treating epilepsy. "The analogy between cancer and epilepsy is a good one," he says. "Like cancer, epilepsy is not just one condition. It has a range of severity, which means it could either be mild, with no risk to life, or the converse. Do you tell a cancer patient they could die when it could be that they have a skin lesion that is benign? People vary at enormous levels with what level of information they are comfortable with."

Professor Duncan does acknowledge, however, that unless there is good reason not to, the default is to tell the patient. And what is "a good reason"? If the patient has learning difficulties it would be counterproductive to overload with potentially traumatic information, he explains.

Tim did not have learning difficulties.His friends had no idea his condition was in any way threatening, so active was his lifestyle. The night before he died, he was out with work colleagues for a drink; when he didn't come into work the next day there seemed a host of other more plausible reasons for his absence.

Professor Duncan points out that, relatively, death by epilepsy is comparable to the number of deaths in motorcycle accidents. "In a year, one young male motorcyclist in 50 will die in a road accident, so in perspective, having epilepsy is still not as dangerous as being a motorcyclist." On this note, about half the cases of Sudep are a direct result of a seizure; the rest are indirect, such as falling down stairs, drowning while having an episode, or dying of a tumour or stroke that was the catalyst for getting epilepsy in the first place. From the outside, these are useful things to know, but it is probably cold comfort for bereaved families, who have their own take on the statistics. Susan Allen's figures put a different take on the situation, showing that death by epilepsy is more common that cot deaths or Aids-related deaths.

What is agreed is that the problem is time. Proper patient care takes time, and that is one resource the Association of Neurologists doesn't have. To explain the ramifications of epilepsy, perform the necessary tests and go through treatment options will take at least 30 minutes. In the UK there is one neurologist per 250,000 of the population, so waiting lists are long, and once a patient is with a consultant, time is of the essence. In the Netherlands there are 10 times the neurologists per head, and the resources to fund epilepsy clinics in almost every town. The NHS is stretched, but the Association of Neurologists says that it needs one neurologist per 80,000 people. The recent audit is providing impetus for change: Liam Donaldson, the Chief Medical Officer, is supportive of the changes that Epilepsy Bereaved say need to happen; he wants an action plan within three months.

But any significant measures will take time – if the NICE guidelines take three years to implement, about 90,000 more people will have developed epilepsy in the UK in that period. GPs cannot be expected to deal with these numbers, such is the complex nature of the condition and the medical equipment needed to monitor it.

For those who do suffer from epilepsy, it is vital that they are made aware of their state of health. Dan McGill, a 25-year-old who suffers from a strain called Grand Mal, was diagnosed 13 years ago. He takes medication twice a day, yet never has a regular review of his condition. "I don't remember being put in the picture about epilepsy," he says. "I reorder the medication monthly, and on occasion I visit my GP if I have queries. All I know about this is what I've found out myself."

This works well for Dan, who feels he has his epilepsy under control and has discovered its ramifications for himself, but the medical profession cannot count on all sufferers to do this. The current measures are insufficient for proper care – and this would still be true if only one person a year died unnecessarily from Sudep.

Epilepsy Bereaved Helpline, 01235 772 852; Epilepsy Action Helpline, 0808 800 5050; www.sudep.org