As the Senedd prepares to expand to 96 members this May, our question for the 36,000 people living with epilepsy is simple. Will a bigger parliament finally mean better care for a condition that affects 1 in 88 people or just more voices ignoring a crisis that has seen patients wait up to a year for a diagnosis?
When I started as Wales Manager at Epilepsy Action Cymru in 2016, Wales was already facing a tough health landscape. Since the last election in 2021, we have thankfully seen increased political attention on epilepsy services in Wales, with Senedd debates and Ombudsman investigations prompting commitments to improve services, care and support for people with epilepsy.
However, overall epilepsy services still need urgent improvement, with severe staffing shortages, long waiting times and a postcode lottery in access all affecting the level of care people with epilepsy receive.
The long-term impact of the closure of the Learning Disability Epilepsy Service has also left vulnerable individuals without adequate specialist support. Rising prevalence and inconsistent service provision have further widened gaps in care, leaving many patients and families struggling to access timely and appropriate support.
People are at the heart of my role – I feel privileged to walk alongside families, carers and individuals living with epilepsy and to be trusted with their experiences. Every conversation reminds me why our work matters.
I also genuinely enjoy the collaborative nature of bringing decision makers together, challenging inequalities across health boards or ensuring families feel heard as they navigate difficult systems. No two days are the same and very day feels like an opportunity to make a difference.
But week to week I hear increasingly concerning stories from our service users which lay bare the ever-growing neurology healthcare crisis no politician can afford to ignore:
Unacceptable waiting times
People often wait many months, and sometimes more than a year to see a neurologist or epilepsy specialist. Despite NICE guidance requiring a specialist review within two weeks after a first seizure, no health board in Wales meets this standard, and 43% of patients are not referred at all.
This leaves people with epilepsy without any help or support, and risks their condition getting worse before they get the treatment they need. Epilepsy can be fatal if left untreated and unmonitored. It’s that simple.
Lack of access to specialist support
Many families struggle to get any specialist input, particularly following the closure of the Learning Disability Epilepsy Service in Hywel Dda. Carers describe being left “abandoned and unsupported” with no clear point of contact or pathway after the service ended.
Postcode lottery in care
Access to epilepsy care varies widely across Wales. Some areas, such as Powys and Cwm Taf, have no dedicated neurology services, requiring patients to travel long distances and frequently miss appointments due to transport barriers. This is also true for people living in rural areas where public transport is infrequent or unreliable.
Critical shortage of epilepsy specialist nurses (ESNs)
There is a shocking shortage of ESNs in Wales, with less than half the necessary workforce in post and some health boards, such as Hywel Dda, operating with only a small fraction of the number required to deliver safe and sustainable care.
This gap in specialist provision creates a significant domino effect on primary care, as GPs and practice teams are forced to absorb complex epilepsy management tasks ordinarily handled by ESNs such as treatment queries, care plan updates, medication concerns, and crisis support despite lacking the specialist training and capacity to do so.
This creates a clear risk, leads to higher emergency admissions, and places additional pressure on already overstretched GP services, many of which are not equipped to deal with epilepsy, while leaving patients with poorer seizure control, more avoidable deterioration, and reduced continuity of care.
Timely access to mental health support
A typical seizure might last just minutes but the wait for mental health support can be as much as six months – a gap in care which is failing the 80% of Welsh people with epilepsy who have told us their condition is pushing them to breaking point.
A further 31% of people we work with said they have felt suicidal as a result of the impact of their epilepsy. Existing NHS pathways do not offer counselling support at a time of crisis.
Carers left to cope alone
Carers report taking on clinical-level responsibilities without support or guidance, especially where services have been withdrawn.
Many describe significant stress, confusion about who to contact, and a lack of updated care plans or risk assessments. This makes an already stressful and difficult situation worse, for both the carer and the people with epilepsy they look after.
Daily life risks due to poor seizure control
We hear about people with epilepsy frequently experiencing injuries such as falls and burns, as well as difficulties carrying out daily tasks due to uncontrolled seizures. Some families live in constant fear of the next seizure.
This highlights the impact of unsafe waiting times, inconsistent service provision, and insufficient specialist support leaving many people with epilepsy, and their careers, struggling to manage a complex and high-risk condition without the help they urgently need.
Lack of employer adjustments
One of the biggest issues we hear about is the widespread failure among employers to proactively offer reasonable adjustments. They often misunderstand what they involve, assume they’re too expensive – even though the Senedd found most adjustments can be made easily and at low cost.
The Senedd also pointed to research showing 34% of disabled workers do not get the adjustments they need, and nearly a quarter of employers would not adapt roles for certain disabilities. This is unacceptable and needs to change.
Our manifesto sets out five priorities for the urgent changes needed to ensure every person living with epilepsy in Wales get the care, support and opportunities they deserve.
PRIORITY 1
Guarantee timely access to specialist care
Introduce a clear waiting time guarantee for epilepsy referrals and invest in backlog recovery so no one waits unnecessarily following a seizure.
PRIORITY 2
Strengthen the epilepsy workforce
Increase the number of epilepsy specialist nurses and ensure every Health Board has dedicated epilepsy experts.
PRIORITY 3
Ensure rapid access to mental health support
Guarantee screening and access to counselling within six weeks for newly diagnosed patients.
PRIORITY 4
Address inequality in rural and deprived communities
Introduce community epilepsy hubs, mobile clinics and target outreach to reduce geographic disadvantage.
PRIORITY 5
Strengthen primary care pathways
Ensure every GP practice follows national epilepsy guidance with clear referral routes and appropriate training.
The single biggest change to help the 36,000 people living with epilepsy in Wales would be to fully fund and staff a comprehensive nationwide epilepsy workforce.
This would include ensuring every health board has the required number of Epilepsy Specialist Nurses, neurologists, and learning disability epilepsy specialists addressing Wales’ severe ESN shortfall, where less than half of the necessary specialist nurses are currently in post.
It would also resolve the major staffing inequalities highlighted across Welsh health boards, which contribute directly to inconsistent care and long waits for specialist support, as well as taking pressure off the existing workforce who are overstretched.
A fully resourced workforce would immediately reduce pressure on GPs, cut emergency admissions, shorten waiting times, and deliver consistent, proactive epilepsy care dramatically improving safety, stability, and quality of life for people with epilepsy across Wales.
Visit our Wales Manifesto 2026 page to read more about our priorities and play your part in urging members to understand what needs to change and to champion epilepsy services during the next Senedd page: Wales manifesto – Epilepsy Action
