Every single health board in Wales is failing to meet waiting time guidelines for treatment after a first seizure, a new report by Epilepsy Action Cymru shows.
The guidelines, set by the National Institute for Health and Care Excellence (NICE) say people should have a follow-up within two weeks of having their first seizure. However, according to the Seizing Change report, launched today (17 June) at the Senedd, this standard is not being met anywhere in Wales.
Some patients, like those served by the Hywel Dda health board, are waiting up to 36 weeks to be seen – the longest waiting time on record.
The report is calling for urgent change and investment into epilepsy services.
Furthermore, more than two in five people (43%) are not being referred to any kind of specialist treatment after a seizure.
The report also warns that Wales is facing a neurology workforce shortage, with not enough specialists to give patients the care they need, Epilepsy Action Cymru says.
There are only 17 full-time epilepsy specialist nurses (ESNs) in Wales for the 36,000 people living with epilepsy. This equates to more than 2,000 patients per ESN, when epilepsy charities recommend a caseload of around 250–300 patients per ESN.
There are also only 12 specialised neurologists for that population.
“The data speaks”
Some improvements have been made since 2022, with more staff recruited at the Swansea Bay and Cardiff and Vale health boards.
However, Epilepsy Action Cymru says there is still a pressing need for investment into the workforce and improvement of healthcare pathways for people with seizures and epilepsy.
Janet Paterson, Wales manager at Epilepsy Action, said: “There is still so much to be done to reach the right level of care for people with epilepsy in Wales. We’re nowhere near where we need to be.
“Since 2022, when we highlighted the workforce crisis facing NHS neurology services in Wales, we’ve managed to get the Senedd’s attention on the issue, securing a dedicated debate.
“But while some progress has been made and some new staff recruited, it’s clear this hasn’t been fast enough or at all.
“Too many patients keep telling us they’re waiting months for an appointment, or they can’t get a hold of a neurologist because they have too many patients.
“And the data speaks. It’s practically impossible to serve a population of over 30,000 people with epilepsy with a dozen specialists.
“Not just this, Wales has a higher rate of incidence of epilepsy than the rest of the UK and the epilepsy population is growing, but services continue to be underfunded and, very obviously, not meeting the standards. This needs to change. Now.”
“Accelerate the pace of change”
Luke Fletcher, Member of the Senedd for South Wales West, sponsored today’s session at the Senedd to launch the report. He expressed concern over the growing epilepsy population in Wales from 32,000 in 2022, and the lack of specialists, especially in rural areas.
Mr Fletcher MS also spoke to other MSs to highlight the issues facing epilepsy services in their areas and what they can do to address these.
He said: “The Welsh Government cannot continue to drag its feet on this issue. It has had ample warning from clinicians, patients, from charities like Epilepsy Action Cymru and through scrutiny in the Senedd.
“If we are serious about delivering a fair and effective system for epilepsy care in all parts of Wales, we must urgently invest in the neurology workforce, ensure that care pathways between primary and secondary care are fit for purpose, and support health boards to meet the standards patients deserve.
“The time for slow reviews and half-measures has passed. The Welsh Government must accelerate the pace of change – otherwise, it will be knowingly allowing thousands of people with epilepsy to be put at risk.”
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