Senedd urged to address “unacceptable” delays, inequality and lack of access to care

Epilepsy Action held an event at the Senedd last week to raise awareness among MSs of the delays, inequality and avoidable risks in accessing care that people with epilepsy face in Wales.

The charity is challenging the new Senedd to take on five priorities to improve care for people with epilepsy in Wales, including improvements to access to care, workforce and mental health support.

Epilepsy Action staff and volunteers spoke to more than 20 MSs at the event, discussing the need to improve epilepsy services in Wales. The MSs present included Becca Martin MS, who sponsored the event, as well as Mike Hedges MS, Jane Dodds MS and Laura Anne Jones MS, as well as Paul Davies MS who raised a question about epilepsy in the Senedd after the event.

Jan Paterson, Wales manager at Epilepsy Action, said: “We welcomed the opportunity to meet with new and returning Senedd Members (MSs).

“We spoke with over 20 MSs from different parties to discuss the urgent need to improve epilepsy care across Wales.

Epilepsy care problems in Wales

Wales has the highest prevalence of epilepsy compared to the rest of the UK, with one in 88 people affected, but services are not keeping pace, Epilepsy Action said.

Jan explained: “Epilepsy is one of the most common neurological conditions, affecting more than 36,000 people in Wales. Yet too many people continue to face unacceptable delays accessing specialist care and gaps in the support available to them.

“There are 2,483 people with epilepsy to every epilepsy specialist nurse in Wales, and 3,273 to every neurologist. Because of this, patients often wait months for the support they need.”

Only 57% of people are referred to a specialist after a first seizure and there are only 14.5 full-time equivalent epilepsy specialist nurses and 11 neurologists for the 36,000 people in Wales living with epilepsy.

MBRRACE-UK (2025) also reported that between 2021-23, neurological conditions were the third leading indirect cause of maternal mortality in the UK. Also, over 80% of people with epilepsy reported mental health challenges, with just under a third of people (31%) experiencing suicidal thoughts.

Five priorities for the Senedd

Epilepsy Action is urging the Senedd to:

1. Ensure a faster, equitable access to care, including a wait-time guarantee for epilepsy care and a neurology backlog recovery fund.
2. Build a sustainable workforce by increasing ESN numbers and ensuring every Health Board has a specialist neurologist.
3. Improve mental health support through screening people at epilepsy diagnosis and investing in voluntary sector services for early intervention.
4. Tackling inequalities by ensuring high quality and consistent maternity care for people with epilepsy is in place from pre-conception to the post-natal period, and introducing epilepsy hubs, mobile clinics and outreach support.
5. Strengthen primary care through enabling GPs to follow consistent national guidance on epilepsy and supporting patient management in the community.

Jan added: “Through our manifesto we set out clear priorities for improving epilepsy care, informed by the experiences of people living with epilepsy and their families.

“We have set out what needs to change. We now need to see improving epilepsy care become a government priority too and stand ready to work alongside Senedd Members to turn that ambition into meaningful improvements for people affected by epilepsy in Wales.”

You can have your say and support safer care for people with epilepsy in Wales by writing to your MS to share the Epilepsy Action Wales manifesto and ask if they will meet with Epilepsy Action to discuss this.