Too many people with epilepsy in Northern Ireland are not getting the healthcare support that they need, according to a charity study.
The research, from Epilepsy Action Northern Ireland, has revealed that one in three people with the condition do not have access to an epilepsy specialist nurse. Of those who do, more than half do not get to see their nurse often enough.
Epilepsy Action Northern Ireland’s studylooked at people’s experiences with healthcare services before the COVID 19 pandemic. It revealed that, even in groups of patients who are at higher risk of harm because of their epilepsy, not enough people have access to the valuable service of a specialist nurse. This includes people who have seizures every single day, and those who have other conditions like learning disabilities, autism or mental health conditions. The charity insists that all of these people need access to a nurse to improve their epilepsy care. Of those people with epilepsy in Northern Ireland who do have access to an epilepsy specialist nurse, one third have not seen them since their diagnosis.
Epilepsy specialist nurses can be a lifeline for people with the neurological condition. They offer support with medication, managing the risk of having seizures and how to cope in day to day life. They can also support applications for much-needed benefits, or offer support with education or employment. Those who have access to an epilepsy specialist nurse are more likely to report that they are satisfied with their healthcare.
Epilepsy Action Northern Ireland believes there should be significantly more adult epilepsy specialist nurses to provide adequate care to people with the condition. Initial estimates by the charity puts the number needed at around 30. There are currently only three full time and one part time nurses. In three out of the five health trusts, there are no adult epilepsy specialist nurses at all.
The study also revealed a lack of ongoing care and support for patients with epilepsy in Northern Ireland. Two thirds of those surveyed by the charity revealed that they do not have a written care plan in place for their epilepsy, one third have not had an epilepsy review in the past 12 months. People who have access to an epilepsy specialist nurse are more likely to have these vital building blocks of their care in place.
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 timeto see neurologists and epilepsy doctors. And that, 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.”
Dr Michael Kinney,Consultant Neurologist with subspecialist interest in epilepsy in Northern Ireland, 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 charity’s findings are echoed in the Review of Neurology Services Interim Report.The charity is calling for more epilepsy specialist nurse posts created and funded in Northern Ireland. They are writing to Health Minister, Robin Swann to make this case, and contacting health trusts to discuss their plans for their epilepsy workforce, including specialist nurses. People can find out more about the campaign, including how to support it, by visiting epilepsy.org.uk
Epilepsy affects 20,000 people in Northern Ireland – around one in every 90 people. Epilepsy Action Northern Ireland runs support groups all over the country for people affected by the condition. They are meeting virtually at the moment. People can find out more at epilepsy.org.uk/virtual-groups . The charity will also be launching a new virtual counselling service in Northern Ireland later this year. It will deliver video and telephone counselling to people affected by epilepsy. For more information, contact Northern Ireland manager Carla Smyth on 07885 778585 or email firstname.lastname@example.org