Up to 500 people with epilepsy are dying unnecessarily each year because the health service is providing inadequate care, a national audit indicated yesterday.
Nearly 60 per cent of child epilepsy deaths and 39 per cent of the fatalities among adults are "potentially or probably avoidable", the report said. This amounts to nearly half of the 1,000 deaths each year resulting from epilepsy, a serious neurological disorder that affects at least 300,000 people in Britain.
In many sufferers, epileptic seizures occur suddenly and without warning, sometimes while the patient is asleep. If the fits are prolonged, they can cause disability or death, which is then referred to as Sudden Unexpected Death in Epilepsy (Sudep).
Yesterday's audit, published by the National Institute for Clinical Excellence, said up to 70 per cent of people with epilepsy had the potential to be seizure-free if their condition was properly managed. The report criticised inadequate drug management by doctors, lack of access to hospital specialists and poor medical investigation of the condition, for example by using an electrocardiogram or brain scan.
Professor David Fish, consultant neurologist at the National Hospital in London, said: "The report found failures in the provision of care all through the system. This included problems of timely access to expert specialists and a lack of structured and effective review at primary and secondary care."
An expert panel, including members of the medical royal colleges and the charity Epilepsy Bereaved, looked into 2,412 fatalities where epilepsy was mentioned on the death certificate. Care was found to be inadequate in 77 per cent of child cases and 54 per cent of adult cases. "There was concern about many aspects of epilepsy management, and frequently management did not meet published national criteria," the report said.
It added: "Epilepsy-related death, particularly Sudep, is still underestimated by healthcare professionals and this may reflect the mistaken belief that epilepsy is a benign condition. The risk of death associated with epilepsy appeared rarely to have been discussed with patients or their families."
Professor Sir Liam Donaldson, the chief medical officer for England, has promised that the Department of Health will produce an action plan to tackle the deficiencies in care within the next three months.
Dr Maureen Baker, the honorary secretary of the Royal College of General Practitioners, welcomed the audit. "We believe stronger partnerships between GPs and specialists are needed in order to improve epilepsy care in the UK," she said.
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