Epilepsy action call with 'nine nurses for 26,000 patients'

epilepsy monitoring Image copyright Thinkstock

Urgent action is needed as there are just nine specialist epilepsy nurses looking after 26,000 adult sufferers in Wales, a charity has said.

Epilepsy Action Cymru said at least 88 are needed but two health boards have no specialists and none have more than two.

The charity is launching a campaign calling for action on Wednesday.

The Welsh Government said there "is no single model for neuroscience services".

About 26,000 adults in Wales live with epilepsy - a condition that affects the brain and leads to repeated seizures - which is one person in every 94.

However, Cwm Taf University and Powys Teaching health boards have no specialist nurses to deal with the condition, according to the charity.

Aneurin Bevan, Hywel Dda and Betsi Cadwaladr each have one, while Cardiff and Vale and Abertawe Bro Morgannwg have two plus an additional supporting nurse.

'Vital need'

In 2007, the Welsh Neuroscience External Expert Review Group recommended that each specialist nurse should have a caseload of about 300 patients.

Having 88 in Wales would mean each specialist having an average of about 295 patients.

"Epilepsy care for people in Wales can fall below the standard it should be," said the charity's chief executive Simon Wigglesworth.

"Epilepsy specialist nurses play a crucial role in the care of people with epilepsy.

"We are calling on the Welsh government to work with the necessary agencies to provide more epilepsy specialist nurses in Wales. They are vitally needed."

The charity will launch a campaign at the Senedd on Wednesday to tackle the shortage.

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Media captionMichael Dix-Williams, who has epilepsy, says he "can't speak highly enough" of specialist nurses

Michael Dix-Williams, 48, from Cwmavon, Neath Port Talbot, has had epilepsy since he was 13, but medication would not control his condition.

In 2012, he was fitted with an implant which sends electrical impulses to the brain and helps reduce the number of seizures.

Initially it made the seizures worse, but with the help of a specialist nurse, adjustments were made.

"It's taken quite a while to do, but I have to say they've done a fantastic job," he said.

"I've been seizure-free for probably 14 to 15 months which is the longest I've been without seizures since developing the condition in my early teens."

A Welsh Government spokesman said: "Our neurological conditions delivery plan sets out the actions we're taking to reduce service inequalities and make a tangible difference for people living with conditions such as epilepsy.

"Health boards are required to put in place plans to deliver co-ordinated services for the population they serve and to highlight how they are implementing priorities within the plan.

"There is no single model for neuroscience services, what works in one place may not work in another.

"We, therefore, expect health boards to consider access to neurological specialist nurses as part of their assessments."

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