A new 2020 study from Northern Ireland suggests that people with epilepsy are not getting access to vital epilepsy support. This includes lacking access to epilepsy specialist nurses (ESNs) and ongoing care for their condition.
The research was carried out by Epilepsy Action Northern Ireland between July and August 2020, focusing on people’s experiences of services before the COVID-19 pandemic. The study found that one in three study participants did not have access to an ESN. Of those who did, more than half did not get to see their ESN often enough. This included people who are at higher risk of harm from their condition, such as people with epilepsy who have daily seizures, learning disabilities, autism or mental health conditions.
According to Epilepsy Action Northern Ireland, there should be around 30 ESNs to provide adequate care to adults with epilepsy in the country. There are currently only three ESNs in a full-time position and one who is part-time. Three out of five health trusts do not have an ESN in employment.
ESNs can be a lifeline for people with epilepsy, helping with medicine, managing risks from seizures and supporting people to cope with daily life. They can also offer help with benefits applications, education and employment.
Dr Michael Kinney, consultant neurologist with subspecialist interest in epilepsy in Northern Ireland and member of Epilepsy Action Northern Ireland advisory council, said: “Epilepsy specialist nurses are vital team members providing care to people with epilepsy. They work alongside consultant neurologists and other healthcare professionals to provide essential advice and support during and, as importantly, in-between appointments.
“This study highlights that people with epilepsy could benefit from an expansion of the epilepsy specialist nursing services across the entire region of Northern Ireland. This is something we recognise and must all work towards.”
The study also found there was a lack of ongoing care and support for people with epilepsy in Northern Ireland. Two-thirds of participants did not have a written care plan in place for their epilepsy. One-third had not had an epilepsy review in the last year.
Epilepsy Action Northern Ireland explains that people with an ESN are more likely to have these aspects of their healthcare in place. It adds that people who have access to an ESN are more likely to be satisfied with their healthcare.
Carla Smyth, manager of Epilepsy Action Northern Ireland, said: “This study has confirmed what we already knew – that far too many people with epilepsy in Northern Ireland are not receiving the support they need from the health service. We know that some people are waiting for an extremely long time to see neurologists and epilepsy doctors. In 2020, many of these appointments have become virtual, or even been cancelled. The lack of access to epilepsy specialist nurses will mean that a lot of people are at risk of falling through the gaps.
“Epilepsy is a condition that can be devastating, or even life-threatening. Without proper, on-going healthcare support, people are far less likely to gain control of their seizures or learn how to manage their epilepsy in their day-to-day reality. The ongoing Review of Neurology Services is an important step towards identifying and addressing the challenges facing neurology services and people with neurological conditions in Northern Ireland.
“It’s vital that this review succeeds where others have not, with recommendations fully implemented and a comprehensive funding package made available to bring about real and lasting change now and for the future.Without this, people with epilepsy in Northern Ireland will continue to be deprived of the care they deserve.”
Epilepsy Action Northern Ireland is calling for more ESN posts to be created and funded in Northern Ireland. The organisation is writing to Health Minister, Robin Swann, and speaking to health trusts about their plans to increase epilepsy specialist healthcare staff.
More information about Epilepsy Action’s campaign for improved healthcare provision in Northern Ireland is available on the Epilepsy Action website.