What the issue is
There are around 32,000 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 32,000 people with epilepsy in Wales, but only 14 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 epilepsy specialist nurses (ESNs) and 11 neurologists, most of whom don’t focus on epilepsy. 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.
Primary care is uneven. Many GPs lack training specific to epilepsy and don’t have clear referral pathways. These gaps cause misdiagnosis, unsafe management, and unnecessary hospital visits. This costs Wales about £100 million every year.
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.
During the campaign and beyond we will be calling on parties and candidates to support the five priorities we have outlined that will make a fairer future for people with epilepsy;
- 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. - 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. - 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. - 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. - 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 MPs and MSs to support our work to ensure that these recommendations are implemented,
Please do contact your MP to share our manifesto and ask them to support improvements to epilepsy services. You can find out who your MP is here: https://members.parliament.uk/FindYourMP
Email us at campaigns@epilepsy.org.uk to find out how you can help.
Epilepsy Action Cymru
Epilepsy affects everyone in different ways, so it can be difficult to control and challenging to live with.
Epilepsy Action Cymru has been providing information, advice and support for over 70 years.