Epilepsy care in Wales faces 'woefully' short staffing levels as lives 'put at risk'

  • Video report by Marina Jenkins

Epilepsy care in Wales faces "woefully short" staffing levels and lives are being "put at risk", according to a leading epilepsy charity.

Epilepsy Action Cymru has renewed pressure on politicians to act urgently, after a motion was passed last year in the Senedd to improve specialist epilepsy care.

But six months on, there has been "no improvements" and another meeting has been held between charity representatives, medical experts and Senedd members.

Daniel Jennings, a senior policy and campaign officer for Epilepsy Action, said: "We know many people in Wales wait over a year to access appointments and support.

"That's a year with more seizures and no action being taken to help. We know seizures can be fatal, there are 1,000 deaths a year across the UK, a lot of which could be avoided."

According to Epilepsy action there are:

  • 55 new cases a year per 100,000 people in Wales

  • 37 new cases a year per 100,000 people in England

  • 43% of Welsh patients are not referred to specialist services

  • Powys and Cwm Taf has no dedicated neurology services

With the rates of epilepsy higher in Wales than in England, the charity is campaigning for more Epilepsy Specialist Nurses (ESNs).

Becci Smart, who lives in Bridgend, was diagnosed with epilepsy at the age of 18. While she has received good care at Swansea Bay, she said the quality of care received is a postcode lottery around Wales.

Becci said: "We deserve equitable care and treatment, just the same as any other person. But at the moment we are not receiving that.

"We want to live long and fulfilling lives. The way the system is working around Wales, people with epilepsy cannot do that, and it's not fair and it's not right."

It has been more than six months since a motion was passed in the Senedd calling for improved staffing to reduce waiting times.

Daniel Jennings from Epilepsy Action talking with Luke Fletcher MS Credit: ITV Wales Cymru

The motion was tabled by Plaid Cymru MS Luke Fletcher which gained cross-party support from 15 other Senedd members.

He said: "Epilepsy Action Cymru's research reveals a distressing reality for those managing epilepsy in Wales.

"While we acknowledge that the Welsh Government are taking some positive steps to drive forward necessary improvements, things are still slow to change.

"Our calls to address gaps in access to services and lengthy waitings remain. People with epilepsy must get the urgent support they need."

In response to the meeting on 31 January and renewed calls for support, a Welsh Government spokesperson said: “We are aware of some concerns about epilepsy services across Wales and have had discussions with Epilepsy Action Cymru and health boards about making improvements.

"We expect health boards to improve services to meet the aims and standards set out in our quality statement for neurological services, including epilepsy.

"Since April last year, the new NHS Wales Executive started work on developing Strategic Clinical Networks.

"The Neurological Conditions Strategic Clinical Network and a new clinical lead will be appointed shortly to support health boards with improvements in services.”

The spokesperson added that the Welsh Government has had a policy focus on neurological conditions since 201, through the Neurological Conditions Delivery Plan and more recently, the Neurological Conditions Quality Statement published in November 2022.

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To know...