A substantail number of potentially avoidable deaths occurs due to poor management of epilepsy, according to a report launched in London and Dublin yesterday.
The National Sentinel Clinical Audit of Epilepsy Deaths examined the cases of 2,412 people who had died from an epilepsy-related cause in Britain between September 1999 and August 2000.
Given that better seizure control is most likely to reduce the risk of an epilepsy-related death, 39 per cent of adult deaths and 59 per cent of children's deaths were considered to have been avoidable.
The audit found that about one-third of adults and children had inadequate access to specialist care. Some 45 per cent of children were considered to have had poor drug management.
Death certification was considered inadequate in 41 per cent of cases. Although most deaths fitted the criteria for sudden and unexpected death in epilepsy (SUDEP), this was certified as the cause of death in just 10 per cent of audited post-mortem cases.
Speaking to The Irish Times following the launch of the audit, Dr Norman Delanty, consultant neurologist in Beaumont Hospital, explained that SUDEP was more common in people with frequent seizures of a tonic-clonic ("grand-mal") type.
"If we extrapolate from the British figures, we would expect about 70-80 unexpected deaths from epilepsy per year in the Republic," he said.
Dr Delanty said the control of epilepsy is linked to appropriate and regular care. "People with uncontrolled epilepsy must have specialist care," he said. However, there are only 11 neurologists working in the public service in the State. "To reach average EU norms we need 35 publicly appointed neurologists in this country."
Mr Mike Glynn, CEO of Brainwave, the Irish Epilepsy Association, said the findings applied "even more so" in the Republic.
They include:
The risk of death associated with epilepsy is rarely discussed with patients and their families.
There is particular difficulty in managing epilepsy in people who have learning difficulties.
Many aspects of epilepsy management do not meet published guidelines.
There is inadequate access to appropriate epilepsy care.
Public awareness of epilepsy awareness needs to be improved.