Functional Seizures in Wales: What New Research Means for Care

Recently, a major event in Wales brought people together around one urgent question: what do we actually know about functional seizures in a whole nation — and what should good care look like afterwards?

In the room were people living with FND, relatives and carers, neurologists, researchers, therapists and patient organisations. They heard population-level research drawn from Welsh health records, emerging science about how the brain and body may interact during episodes, and proposals for a national care pathway.

The presentations were thorough. They were also full of medical language, codes, statistics and specialist framing that can be hard for the average person — or even a well-informed patient — to digest in real time. That is not a criticism of the science. It is a recognition of how inaccessible research can feel when you are living with the condition every day.

So FND Connect reviewed the full presentation and produced a free plain-English document that sets out the main findings clearly: what was studied, what it means, and what patients and families should take from it.

What the meeting was about

This was not a small clinic audit. Researchers used anonymised NHS records covering most of the Welsh population and identified around 2,800 people with functional seizures between 2003 and 2023. It is believed to be the first study of this kind for an entire national population rather than a single hospital or clinic.

Alongside the numbers, speakers discussed:

• How functional seizures differ from epileptic seizures — while remaining real and involuntary
• Why official figures are almost certainly too low (about half of known cases may be missed in coding)
• What happens after the label — including the gap between diagnosis and treatment
• Higher emergency care use, work impact, financial pressure and mental health burden
• A sensitive mortality finding that needs serious attention and further research
• A proposed national pathway for assessment, explanation, therapy and longer-term support in Wales

Key findings, in plain English

You can read the full detail in the PDF. Here is the heart of it:

• Functional seizures are real. People are not choosing, faking or causing their seizures.
• They are common — and under-recorded. In 2023, researchers estimated about 90 people per 100,000 in Wales were living with recorded functional seizures. Because many cases are not coded clearly, that is likely a minimum.
• About 30% of the identified functional-seizure group also had epilepsy. Emergency plans need to reflect that complexity.
• Diagnosis alone is not treatment. After epilepsy is diagnosed, hospital use often falls. After a functional-seizure diagnosis, emergency visits and admissions often stay high — because follow-up care is missing.
• The impact reaches far beyond seizures. Long-term sickness, financial hardship, poor mental health and repeated crisis care are part of the picture.
• Better care should save money as well as suffering. Early diagnosis, clear explanations, emergency plans and specialist support could reduce harmful and expensive A&E loops.

For 2023, estimated NHS hospital costs were around £3,000 per person with functional seizures, compared with around £700 for a similar person without seizures. The system is paying for repeated crises when planned care is not available.

Why we wrote a plain-English version

Research meetings are vital. They move the field on. But if the only version of the story lives in slides, codes and specialist vocabulary, patients and families are left outside the conversation that is about their lives.

We deliberately wrote the report for:

• People living with functional seizures or FND
• Partners, parents, carers and friends
• Professionals who want a clear patient-facing summary to share

We kept the science honest — including difficult findings such as higher mortality risk in the study group — while making clear that group statistics are not a prediction for any one person.

What good care should look like

The meeting also set out a proposed pathway for Wales: timely neurological assessment, a clear and positive explanation, support matched to the person, a joined-up team, a named care navigator, access to specialist FND services, and a route back into care if symptoms return or change.

An important limitation: a pathway on paper is not the same as services on the ground. At the time of the presentation, Wales did not have a dedicated specialist FND team everywhere it was needed. Peer support and charities matter — but they are not a substitute for properly funded healthcare.

What you can do next

• Open the full plain-English report (PDF) — free to read in your browser
• Read our functional seizures hub for practical day-to-day guidance
• Use SeizeControl if you want a private place to track episodes and prepare for appointments
• Share the report with family, your GP, or your care team if it helps them understand the scale of the problem

Open the Wales FND report (PDF) → Functional seizures hub

This article summarises a public research meeting and FND Connect’s plain-English patient report (July 2026). It is information, not personal medical advice. If symptoms are new, sudden, severe or unlike your usual pattern, seek urgent medical help — call 999 in an emergency.