Epilepsy Action Cymru met members of the Senedd, clinicians and patients in Cardiff Bay this week (31 January) to discuss the support available for people with epilepsy in Wales.
There are more than 30,000 people with epilepsy in Wales, some of whom are having to wait a year or more to see a neurologist.
Epilepsy Action Cymru is campaigning for more Epilepsy Specialist Nurses (ESNs) to be appointed across Wales, and has introduced a counselling service to support people living with epilepsy and their loved ones.
Jan Paterson, Wales manager at Epilepsy Action Cymru, was joined by senior policy and campaigns officer Daniel Jennings and volunteer Becci Smart.
Luke Fletcher, member of the Senedd for South Wales West also supported the event.
Luke, who has previously campaigned for people with epilepsy in the Senedd, said: “Epilepsy Action Cymru’s research reveals a distressing reality for those managing epilepsy in Wales.
“Wales has the highest rates of incidence of epilepsy in the UK, and the extremely low specialist availability, regional discrepancies in services, and lack of investment in epilepsy resources serves only to compound the situations of those living with epilepsy in Wales.
“While we acknowledge that the Welsh Government is taking some positive steps to drive forward necessary improvements, things are still slow to change. Our calls to address gaps in access to services and lengthy waiting times remain. People with epilepsy must get the urgent support they need.”
Becci Smart, who was diagnosed with juvenile myoclonic epilepsy at the age of 18, joined Jan and Daniel at the event.
Becci said: “The challenges I face in living life with epilepsy are as emotional as they are physical, and I cannot stress enough how vital providing extra support to help people with epilepsy in Wales live safer, freer lives would be.”
According to Epilepsy Action Cymru, 43% of patients aren’t getting referred to any kind of specialist service following a seizure, while others wait a year or more to see a neurologist.
Wales manager Jan said: “A lot of people probably don’t realise that Wales has a higher rate of incidence of epilepsy than the rest of the UK, with 55 new cases per 100,000 each year compared to 37 in England. NICE guidelines recommend a waiting time of no longer than two weeks for patients with a suspected first seizure, which are nowhere near being met by any of the seven health boards operating across Wales.”
“We are therefore calling on the Welsh Department for Health to actively support the provision of more ESNs across Wales, alongside the widespread implementation of an ‘Epilepsy Service Co-ordinator’ task force that can support the adoption of a best practice ‘Open Access’ model currently also only put into practice by four out of the seven health boards involved, according to our research.
