Epilepsy care postcode lottery is leading to preventable seizures, research shows

More specialist nurses are needed to address the “overlooked” problem of epilepsy, as research shows a postcode lottery in epilepsy care means many people are having preventable seizures.

Specialist nurses can make a dramatic difference to epilepsy care

Though 70 per cent of epilepsy sufferers could be “seizure free” only about 50 per cent are, because of the lack of access to epilepsy specialist nurses (ESNs) who are trained to deal specifically with the condition, according to the University of Sheffield. This means many people are having preventable seizures.

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The research commissioned by Leeds-based charity Epilepsy Action, found a large regional disparity for epilepsy services between areas of the UK.

Dr Jon Dickson, a GP and a senior clinical lecturer at the University of Sheffield who led the research, said: ”Currently in the UK there are large regional differences in whether patients have access to a comprehensive epilepsy service including ESN care.

“Our report highlights the fact that for those who do not, this could be having a big negative impact.”

In areas where there is little or no ESN service provision, patients rely on appointments with consultants but patients are often on long waiting lists with little support in between appointments, slowing the progress in the management of a patient’s epilepsy.

While Yorkshire was generally above average, there were some gaps, for example, in Harrogate there is an epilepsy children’s nurse but not an adult nurse, meaning adults might not feel well-served in that bit of North Yorkshire.

Alan Bennett, 58, from Rotherham, was diagnosed with epilepsy at 12 years old. For the past 18 years he has now also been under the care of an ESN, which he said has been vital in the management of his epilepsy. He added: “If I’m having problems, say with medications, I know I can ring them for advice without having to wait to see a specialist consultant at the hospital.

“I get much quicker access to information through my specialist nurse. They keep in touch making sure I have everything I need and I can always see them in person if I need to.

“They help in such a wide variety of ways.”

Peri O’Connor, healthcare projects coordinator at Epilepsy Action, said epilepsy, which affects only one per cent of the population, is often overlooked. She said: “We hope that this important piece of research will help those planning local NHS epilepsy services recognise the valuable and varied role epilepsy specialist nurses can play in ensuring positive outcomes for patients.”