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Collections under which this article appears: Organization of health care Epilepsy

BMJ 2002;324:1237 ( 25 May )

News

"Shortcomings in care" to blame for avoidable epilepsy deaths

Sally Hargreaves, London

Poor management of patients with epilepsy may contribute to a substantial number of avoidable deaths related to epilepsy each year, an audit report published this week says.

The report highlights weaknesses in service provision and calls for a renewed focus on prevention, investigation, and management of deaths related to epilepsy.

"Bear in mind that 70% of people with epilepsy respond well to treatment and can be rendered seizure free," Henry Smithson, one of the authors, told the BMJ. "The high number of potentially avoidable deaths identified in this report suggest the need for considerable improvements in epilepsy management."

The audit, a joint project by the National Institute for Clinical Excellence (NICE) and the chief medical officer and initiated by the charity Epilepsy Bereaved, involved an expert review of official records for 2412 people in the United Kingdom who had an epilepsy related death between September 1999 and August 2000.

The panel reported that overall care was "deficient" in 57% of cases, expressing particular concerns over poor access to specialist care, a lack of appropriate hospital investigations and adherence to published criteria, and inadequate drug management.

Care of children was noted to be worse than care of adults, with 59% of the deaths among children estimated by the panel to have been "potentially or probably avoided," compared with 39% among adults. Other problems noted were lack of information and support for patients and relatives.

Epilepsy affects around 400000 people in the United Kingdom, and it is estimated that these people are 2-3 times more likely to die prematurely than people without epilepsy. Yet, says Jane Hanna, director of Epilepsy Bereaved, "There is an overwhelming lack of awareness among the medical profession, particularly about sudden, unexpected death epilepsy, which is the principal cause of seizure related death in people with chronic epilepsy."

The most important risk factor for sudden, unexpected death is a high frequency of seizures, so good seizure control is crucial to minimising the risk of death, she said.

The chief medical officer for England has recommended that the Department of Health provide an action plan to tackle areas of concern within three months of the audit's publication. NICE is expected to publish clinical guidelines on the management of epilepsy in adults and children in June 2004, and an appraisal of drug use will be published next year.

Footnotes

The Report of the National Sentinel Clinical Audit of Epilepsy Related Death and a patient information leaflet can be found at Epilepsy Bereaved's website: www.sudep.org

© BMJ 2002
 

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