Senedd to debate ‘underfunded’ and ‘inadequate’ epilepsy services in Wales

Emily Price

The Senedd will today debate a motion on “underfunded” epilepsy services in Wales after new research revealed extremely long waiting times for patients and a “severely inadequate” number of epilepsy specialists.

Epilepsy Action Cymru is calling on the Welsh Government to tackle low specialist availability, local provision discrepancies and lack of investment in epilepsy resources in Wales.

Luke Fletcher, MS for the South Wales West region, has tabled the motion which will be debated today (July 5), with cross-party support from 15 other Senedd Members.

The Plaid Cymru MS said the “alarming” new research by Epilepsy Action Cymru revealed a “distressing reality for those managing epilepsy in Wales”.

Epilepsy affects nearly 630,000 people in the UK, and in Wales, 11 in 1,000 people have the condition, compared to 9 in 1,000 in England.

There are 55 new cases of epilepsy in every 100,000 people per year, compared to 37 per 100,000 in England.

Despite this, the charity says there are massive gaps in access to specialists and services for people with the condition in Wales.

They say the lack of epilepsy specialist nurses is “severe” with just one nurse to every 2,823 patients even though the recommended ratio is one nurse to every 300 patients.

Additionally, patients are waiting over a year to see a neurologist in some areas of Wales, and NICE guidelines, recommending a waiting time of no longer than two weeks for patients with a suspected first seizure, are not being met by any Health Board.

Underfunded

There is also a massive regional variation in the levels of service provided. The number of nurses available is inequitable overall, but some Health Boards such as Powys Teaching Health Board have no dedicated neurology services at all.

Overall, the lack of epilepsy specialist in the neurology workforce is widespread in the UK with just 721 neurology consultants and 448 epilepsy specialist nurses to manage an estimated 626,000 people with the condition.

Epilepsy Action Cymru researchers also highlighted a lack of funding in epilepsy services in the UK overall.

2018 data shows the UK government invested just £21 per person into epilepsy research, much lower than other conditions with a smaller patient population.

Overall, epilepsy receives just 7% of neurological research funding and just 0.3% of the £4.8 billion total spent on health-related research in the UK.

This is despite the condition costing the NHS £2 billion a year and the public health system seeing 100,000 emergency admissions due to epilepsy each year.

Based on the findings, Epilepsy Action Cymru is calling on the Welsh Department of Health to support measures to reduce current waiting times to access epilepsy services and health professionals in Wales through a Senedd motion.

The motion will cover recommendations such as ensuring the levels of staffing across the Health Boards of Wales are appropriately resourced, adopting ‘epilepsy service coordinators’ and a best practice model, and reviewing the
provision of transition services for children and young people into adult services.

Low priority

Jan Paterson, Wales Service Manager at Epilepsy Action, said: “Neurology has historically been an underfunded, low priority service in Wales and all too often, communities have reported substantial barriers to accessing the treatment, services and support from the health care service.

“It’s really concerning that waiting times to access epilepsy services are still so high, and that the number of epilepsy specialists is so severely inadequate.

“Delays and gaps in access to treatment have a massive impact on the lives of people with epilepsy. They can lead to unplanned hospital admissions and even increase the chance of SUDEP.

“This needs to change. We’re calling on the Welsh government to listen to thousands of people with epilepsy and take clear action, to give them the level of care they need and deserve.”

Mr Fletcher said: “Epilepsy Action Cymru’s research reveals a distressing reality for those managing epilepsy in Wales of extremely low specialist availability, regional discrepancies in services, and lack of investment in epilepsy resources.

“Waiting times for even routine epilepsy appointments remain troublingly high across the country. The Welsh Government’s historic underinvestment in epilepsy services is alarming considering the significant burden that it places on those managing it.

“The number of new cases and rates of prevalence in Wales remain higher than the rest of the UK, yet the availability of specialists is woefully inadequate.

“We cannot overlook this any longer. We must drive the necessary changes forward and ensure better care for the 32,000 people living with epilepsy in Wales.

“We’re calling upon the Welsh Government to take immediate action to address gaps in access to epilepsy services and to reduce waiting times to ensure that those with epilepsy get the urgent support they need.”