Campaign for better healthcare in Wales

What the issue is

There are around 36,000 people in Wales with epilepsy. This means that one person in every 88 people is living with the condition. However, too many people with epilepsy in Wales are unable to access the health care and support they need.

Epilepsy Action Cymru has heard from people who are having to wait years for an appointment with a specialist.

Many people with epilepsy also do not have access to epilepsy specialist nurses. Nurses can offer much-needed support and advice between appointments. There are about 36,000 people with epilepsy in Wales, but only 14.5 full-time equivalent (FTE) specialist nurses.

What needs to change

People with epilepsy in Wales face significant and avoidable inequality. Many struggle to access timely, specialist care.

Only 57% of people are referred to a specialist after a first seizure, and no Health Board meets the two‑week referral target.

There are only 14.5 FTE epilepsy specialist nurses (ESNs) and 11 neurologists, most of whom don’t focus on epilepsy. That means there are 2,483 people with epilepsy to every ESN in Wales, and 3,273 to every neurologist. Because of this, patients wait months, travel far, or miss out on the support they need.

Mental health needs are often ignored. More than 80% of people with epilepsy face mental health issues. Many wait up to six months for help. Rural areas with deprivation face extra challenges. These include poor transport links and limited local services.

These challenges are particularly critical for women with epilepsy during pregnancy and maternity care. Without timely specialist support and coordinated services, risks increase significantly for both mother and baby. The need for change is especially urgent in maternity services.

Maternity

The gaps in epilepsy services outlined above have serious consequences during pregnancy and maternity care. Women with epilepsy need coordinated support from neurology, maternity and primary care services — yet too often this is inconsistent or delayed.

MBRRACE-UK (2025) reports that between 2021 and 2023, neurological conditions were the third leading indirect cause of maternal mortality in the UK.

We want to see high quality and consistent maternity care for people with epilepsy, from pre-conception support to the post-natal period.

We have worked with NHS regions to develop guidelines, assessment tools and benchmarking systems to improve maternity outcomes and patient safety. It is vital that these tools are adopted across Wales for the safety of women with epilepsy and their children.

You can read more about Epilepsy Action’s maternity work here.

What we’re doing

We published our epilepsy manifesto, A Fairer Future for Epilepsy, before the 2026 Senedd elections. It calls on the Welsh Government to address urgent issues through five clear priorities set by people with epilepsy.

We are calling on MSs to support the five priorities we have outlined that will make a fairer future for people with epilepsy;

1. Improving access to timely specialist care
   We are calling for a waiting‑time guarantee for epilepsy services and a Neurology Backlog Recovery Fund to reduce delays in diagnosis and treatment.
2. Building a sustainable epilepsy workforce
   We are advocating for increased investment in epilepsy specialist nurses—reaching at least 9 ESNs per 500,000 people—and ensuring every Health Board has a consultant neurologist specialising in epilepsy. We also support a national workforce plan including training bursaries, recruitment incentives, and rural retention support.
3. Expanding mental health and counselling support
   We are pushing for mental health screening for all newly diagnosed patients and access to counselling within six weeks. We are also calling on the government to expand third‑sector support by ensuring continuing funding for Epilepsy Action’s award‑winning counselling service.
4. Reducing health inequalities
   We promote community‑based solutions such as local epilepsy hubs, mobile clinics, targeted outreach in deprived areas, nutrition advice, seizure safety training, and improved mental health access for rural communities. We also want to ensure high quality and consistent maternity care for people with epilepsy, from pre-conception support to the post-natal period.
5. Strengthening epilepsy care in primary care
   We work to ensure every GP practice follows national guidelines, has clear referral pathways, and receives training to manage epilepsy safely. We also support initiatives like the Waiting Well Policy to keep people safe while they await specialist care.

These actions form our commitment to a Wales where people with epilepsy can live safer, healthier, and more independent lives—without limits.

How you can get involved

We are looking for MSs to support our work to ensure that these recommendations are implemented.

Please do contact your MS to share our manifesto and ask them to support improvements to epilepsy services. You can find out who your MS is here.

And download our manifesto here.

If you are a Member of the Senedd (MS)

You can support this campaign by raising these issues with the Welsh Government, asking questions, and backing calls for improved epilepsy services in Wales. Please get in touch with us to discuss how you can help drive change.

Email us at campaigns@epilepsy.org.uk to find out how you can help.