Campaign for better healthcare in Northern Ireland

What the issue is

There are around 20,000 people in Northern Ireland living with epilepsy. This means that one person in every 90 people is living with the condition. However, too many people with epilepsy in Northern Ireland are unable to access the health care and support they need.

Epilepsy Action Northern Ireland has heard from people who are having to wait years for an appointment with a specialist.

Many people with epilepsy also do not have access to Epilepsy Specialist Nurses. Nurses can offer much-needed support and advice between appointments. There are about 20,000 people with epilepsy in Northern Ireland, but only 14.1 Whole Time Equivalent (WTE) adult Epilepsy Specialist Nurses available.

Epilepsy Specialist Nurses are at the heart of caring for people living with epilepsy. These vital nurses help in the diagnosis, treatment and care of people with epilepsy. They also manage clinics and offer people counselling and advice about their condition.

What needs to change

In 2018, the Department of Health commissioned the Regional Review of Neurology Services. This was due to high pressure, workforce shortages, and long waiting times for neurology services in Northern Ireland.

The review was tasked with identifying the best way to set up and run adult neurology services for the next 10–15 years. It began by examining current services, workforce gaps, inpatient capacity, and patient experience.

The final report on the Regional Review of Neurology Services came out in May 2025. It pointed out major gaps in epilepsy services, such as:

• A severe shortage of Epilepsy Specialist Nurses, with only 14.1 Whole Time Equivalent (WTE) posts compared to the 34.2 required.
• The absence of specialist epilepsy clinics in some Trusts, creating a postcode lottery for care. For example, there is no specialist epilepsy clinic in the Northern Trust; and some trusts have patient-initiated follow-up (PIFU) pathways while others do not.
• Limited access to mental health and neuropsychology support for people with epilepsy.
• Insufficient neuropharmacy services to manage complex medication needs safely.

What we’re doing

Epilepsy Action, along with other charities, responded to the Review. They pointed out ways to enhance epilepsy care in Northern Ireland.

Firstly, there must be condition-specific care pathways across neurology services. These set out the processes and standards that the health service should follow when treating a condition.

Currently, Northern Ireland lacks a dedicated pathway for epilepsy. This is notable since epilepsy is a common neurological condition. If proper pathways are not followed, it can lead to serious risks.

The Government must respond to the Neurology Review with:

• A clear implementation plan with timelines and funding commitments.
• Recruitment and training to meet recommended workforce levels, including specialist nurses and neuropsychology staff.
• Specialist epilepsy clinics in every Health & Social Care Trust.
• Investment in neuropharmacy services and robust systems for safe prescribing.
• Ongoing GP training and community support to ensure joined-up care.
• Condition-specific pathways – including for epilepsy, ensuring standardised care and tackling the current postcode lottery.

They should also:

• Design the pathway alongside people living with neurological conditions
• Strengthen data collection to support quality improvement and accountability.

How you can get involved

We are looking for MPs and MLAs to support our work to ensure that these recommendations are implemented, so please do contact your MP to ask them to support improvements to epilepsy services. You can find out who your MP is here: https://members.parliament.uk/FindYourMP

Email us at campaigns@epilepsy.org.uk to find out how you can help.