Epilepsy services in Northern Ireland

What’s going on?

Too many people with epilepsy in Northern Ireland are unable to access the health care and support they need. Even before COVID-19, waiting times for neurology appointments were high and rising. It is likely that the situation will have worsened during the coronavirus pandemic.

Epilepsy Action Northern Ireland has heard from people who are having to wait years for an appointment with a specialist. This situation is all too common for people with epilepsy and other neurological conditions, as highlighted in a worrying news report from January 2020.

Many people with epilepsy also do not have access to epilepsy specialist nurses. Nurses can offer much-needed support and advice between appointments. Despite there being an estimated 20,000 people diagnosed with epilepsy, there are currently less than 5 full-time adult epilepsy specialist nurses in the whole of Northern Ireland.

Epilepsy Action Survey

Epilepsy Action Northern Ireland recently surveyed almost 150 people with epilepsy to find out about their experiences of using epilepsy health services.

Feedback revealed that one in three people do not have access to an epilepsy specialist nurse. This includes people who reported having seizures every day and those with other conditions including a learning disability, autism and mental health conditions.

Of those with access to a nurse, more than half do not get to see their nurse often enough. A third reported not seeing their nurse at all since they were first diagnosed. You can read more about the survey findings here.

What have others said?

Regional Neurology Review interim report – “Staff shortages also extend to nursing staff with NI having significantly fewer Epilepsy, Multiple Sclerosis and Parkinson’s Disease specialist nurses than is recommended by the National Institute for Health and Care Excellence for our population.”

Carla Smyth, manager of Epilepsy Action Northern Ireland - “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.”

Victoria McGonigle, Londonderry – “I don’t always feel like my neurologist and my epilepsy specialist nurse have the time to listen to me now. It feels like they are under pressure. I know they have so many people to care for. I used to be able to ask my epilepsy specialist nurse questions and get answers between appointments. Now they refer my queries to my neurologist, and I have to wait until my annual appointment to get the information. This is difficult.”

Dr Michael Kinney, Consultant Neurologist with subspecialist interest in epilepsy & member of Epilepsy Action Northern Ireland advisory council - “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.”

What are we doing?

Epilepsy Action Northern Ireland has been raising concerns about health services in Northern Ireland and pushing for much-needed improvements. The focus of our efforts has been on highlighting unacceptable waiting times for epilepsy appointments and the serious shortage of epilepsy specialist staff.

We have written to the Health Minister, Robin Swann, calling for urgent action to increase the number of epilepsy specialist nurses across Northern Ireland.

We have also written to the five Health and Social Care Trusts asking them to set out what is being done at a regional level to reduce waiting times and increase the epilepsy workforce.

What next?

While we need urgent action to address some of the most pressing challenges facing people with epilepsy, we also need a long term solution to deliver high quality epilepsy health services to people in Northern Ireland into the future.

As part of this Epilepsy Action Northern Ireland has been engaging with the Review of Neurology Services. The review was commissioned by the Department of Health NI and recognises that current neurology services are falling short and that long term change is needed.

Moving forward we will continue to work with decision makers, healthcare professionals and people affected by epilepsy to improve services and outcomes in Northern Ireland.

We want to hear about your experiences of epilepsy health services in Northern Ireland.

You can share them with us by email to campaigns@epilepsy.org.uk.