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Last Updated: Wednesday, 27 October, 2004, 10:05 GMT 11:05 UK
Bid to cut sudden epilepsy deaths
Brain scan
One in 200 adults have epilepsy in the UK
Guidelines have been issued to try to make unexpected deaths from epilepsy will be a thing of the past.

Epilepsy affects more than 300,000 people living in the UK, and official figures suggest about 1,000 die every year as a result of the condition.

The National Institute for Clinical Excellence aims to ensure people with epilepsy are being given proper advice to help them manage their condition.

It is advising doctors on how best to care for their epileptic patients.


A government-funded report in 2002 concluded that more than 40% of deaths from epilepsy were probably avoidable.

According to experts, most people with epilepsy can be free of seizures with the right drug treatment.

But research suggests up to a quarter of cases are misdiagnosed, meaning patients don't get the treatment they need.

The report found failures in the provision of care all through the system.

The guideline covers issues of real concern to people with epilepsy.
Andrea Sutcliffe, executive lead for the NICE guideline

This included problems of timely access to expert specialists and a lack of structured and effective review at primary and secondary care.

The report concluded that poor epilepsy management resulted in a substantial number of potentially avoidable deaths.

NICE believes its guidance on the diagnosis and management of epilepsy in children and adults should address these issues.

Andrea Sutcliffe, executive lead for the guideline, said: "The guideline covers issues of real concern to people with epilepsy, such as accurate and timely diagnosis, appropriate communication and the need for regular reviews of medication."


Key recommendations include ensuring precise and early diagnosis, tailored drug therapy and regular structured reviews of care, at least annually, for each patient.

It says patients should be actively involved in treatment decisions, something that has not been happening, according to the National Society for Epilepsy.

The guideline also emphasises the importance of appropriate advice to women with epilepsy who are of childbearing age.

There have been concerns that some epilepsy drugs harm unborn children, but uncontrolled epilepsy can also be damaging.

Dr Helen Cross, epilepsy expert at Great Ormond Street Hospital and member of the guideline development group said: "This guideline is comprehensive in both its scope and coverage and will contribute toward the development of an optimal standard of epilepsy care across the NHS."

Simon Wigglesworth from Epilepsy Action said the guideline should make a real difference.

"We are particularly pleased that the partnership approach to the management of the condition is stressed throughout and that the information and support needs of people with epilepsy are emphasised."

Dr Mayur Lakhani, from the Royal College of GPs, said: "Epilepsy can have a serious impact on the lives of sufferers both socially and professionally.

"These guidelines will help GPs and other health professionals to keep a closer eye on the medication of people with epilepsy.

"In turn this should reduce both stigma people with epilepsy face and reduce the likelihood of epilepsy-related deaths."

Health Minister Stephen Ladyman said: "We are investing 1.2m in an NHS Modernisation Agency project to improve access to and the quality of neurology services which will benefit people with epilepsy, and almost 290,000 to the National Society for Epilepsy to improve support and information for people with epilepsy and their families."

The charity STARS (Syncope Trust And Reflex anoxic Seizures) which helps people suffering blackouts, welcomed the guidance.

The charity said it was concerned over "the large number of people misdiagnosed with epilepsy when they in fact are suffering from heart rhythm or blackout problems."

20 May 03  |  Medical notes
NHS 'failing epilepsy patients'
20 May 02  |  Health
Epilepsy patients 'ill-informed'
15 May 04  |  Health


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