A leading charity is calling on the Northern Ireland Assembly to ensure consistent levels of epilepsy services across the country and increase the number of specialists.
Representatives of Epilepsy Action – the UK’s largest member-led epilepsy organisation –met with the Northern Ireland Assembly Committee for Health, Social Services and Public Safety at Stormont this week (Monday April 21) to put forward their case for improved epilepsy services.
Morina Clarke, Epilepsy Action’s regional services manager for Northern Ireland, spoke at the reception on behalf of the Joint Epilepsy Council (JEC), an umbrella organisation of 22 epilepsy organisations in the UK. She was accompanied by Dr Jim Morrow and Dr John Craig, consultant neurologists who have a special interest in epilepsy and are based in Northern Ireland.
Morina Clarke said: “Epilepsy Action is urging the Northern Ireland Assembly to develop a plan which would ensure equality of service for people with epilepsy across the country. At the moment we are in a situation where people living in some areas of the country receive a better service than others.
“This could be down to issues such as proximity to major hospitals and specialist epilepsy clinics for example.”
She added that 13,000 people in Northern Ireland had epilepsy, the most common serious neurological condition. About half of them were currently seizure free but, with optimal treatment, it was estimated that a further 2,300 of Northern Ireland’s epilepsy patients could be free from seizures.
“The human cost is huge for the individuals, their families and society in general,” Morina Clarke said. “There is also a real shortage of medical staff with training and expertise in epilepsy in Northern Ireland and many patients travel long distances for tests and treatment. As a result, many acutely ill neurology patients are not under the care of an epilepsy specialist and have a long wait for expert diagnosis, treatment and advice, or may not receive this at all. -
Currently people eligible for surgery as a treatment for their epilepsy are referred to other regions in the UK.
In addition, a review of neurology services by the Department of Health Northern Ireland, in 1999, recommended one neurologist for every 100,000 people, indicating 17 neurologists should be in place. Currently there are only 12.
Epilepsy specialist nurses (ESNs) are a crucial source of support and advice and enable many patients to manage their epilepsy effectively, remaining independent in the community. There are currently seven adult and no paediatric ESNs in Northern Ireland. Epilepsy Action recommends a case load of no more than 250 and estimates 60 per cent of people with epilepsy should have regular access, meaning 31 epilepsy specialist nurses are required in Northern Ireland.
The points raised by the JEC representation will now be considered by the Health, Social Services and Public Safety Committee.