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Thursday, 18 October, 2001, 00:26 GMT 01:26 UK
New epilepsy patients 'failed'
Brain scan
Epilepsy can be a disabling condition
One in five people in the UK who are newly diagnosed with epilepsy will not receive adequate treatment, research suggests.

Around 30,000 people a year are diagnosed with epilepsy every year in the UK.

Researchers, led by Professor Josemir Sander, of the Institute of Neurology, London, monitored 564 patients with epilepsy for between 11 and 14 years after diagnosis.

The patients were part of the UK National General Practice Study of Epilepsy, which began in 1984 and involved 275 general practices.

The findings are indicative of the low priority given to epilepsy within the NHS

Philip Lee
They uncovered a catalogue of disturbing findings.

Only 15% of patients were given treatment after just one seizure, but the high rates of recurrence eventually led to over three quarters being given treatment.

Less than half of those with partial seizures and less than a third with generalised seizures were treated with the recommended drug.

No alternative drug

Almost a third of those with one or more seizures a week had never been given an alternative drug.

Only 11% of patients were prescribed the newest drugs.

One in five had not managed to achieve remission from symptoms for five years. And 7% had not switched drug despite failure to achieve remission for at least two years.

Some 5% of patients continued to have one or more seizures a week.

The researchers accept that there have been improvements in the treatment of epilepsy.

But they conclude that many people with the condition have not been adequately treated.

Writing in the Journal of Neurology, Neurosurgery, and Psychiatry, they say: "The lack of change and slowness to change are an indictment of current practice, and suggest that too often an insouciant attitude is taken to early epilepsy.

"Our results show that there is considerable scope for improving the care of patients with epilepsy."

Proper treatment

It is extremely important that patients receive proper treatment

Dr Sam Lhatoo
Researcher Dr Sam Lhatoo told BBC News Online: "It is extremely important that patients receive proper treatment because patients with epilepsy are twice or thrice as likely to die as people without the condition.

"In particular, there is a small but significant chance of sudden unexpected death in people whose epilepsy is difficult to control.

There are no proper studies that address long term prognosis in patients with epilepsy but it follows that proper treatment results in good seizure control and this in turn leads to a smaller likelihood of sudden death.

"Equally importantly, good treatment allows a good quality of life, less stigmatisation from what is essentially a very treatable group of conditions, and less demand on the health service."

Philip Lee, chief executive of the British Epilepsy Association (BEA) said the findings echoed those found by the charity when it carried out research.

He said: "The findings highlighted by this research are not surprising and is indicative of the low priority given to epilepsy within the NHS."

Diagnosis important

Mr Lee said it was important that patients with epilepsy were diagnosed quickly and accurately.

"If not adequately treated in the early stages the patient is at risk of poorly controlled seizures which has a knock on effect on daily life; employment, driving, safety."

He said most people with epilepsy never see a specialist with a knowledge of epilepsy which is why treatment is so often inadequate.

More neurologists with an interest in epilepsy were needed, along with better links between primary and secondary care.

The government is preparing a National Service Framework for Long Term Medical Conditions which will spell out standards for the care of people with epilepsy.

See also:

19 Feb 01 | Health
Epilepsy advance brings cure hope
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