“The question is no longer whether Northern Ireland can afford to invest in neurology reform – it is whether it can afford not to,” says new report ‘Left Behind: The Price of Inaction on Neurology Reform’, published today by the Northern Ireland Neurological Charities Alliance (niNCA).
The report identifies a crisis in Northern Ireland’s neurology services and the need for urgent reform, not only for a better outcome for people with epilepsy, but also to cut costs and extra pressure to the health system.
The report describes that as of December 2025, 28,188 people were waiting for a first neurology appointment, making neurology the specialty with the longest waiting list in Northern Ireland.
It says people are waiting around 18 months for a specialist appointment, with some waiting for more than seven years.
Around 40,000 people in Northern Ireland rely on neurology services – although the true number is likely to be considerably higher.
All of these delays often lead to a worsening of people’s symptoms, avoidable disability, poorer mental health and greater demand on emergency services.
The niNCA report calculates that for £13 million annual spending to reform neurology services over five years (£65.4 million in total), there would be a saving of £869 million per year, helping reduce the current annual cost of neurological conditions in Northern Ireland of £2.72 billion.
The report says more than half of this annual cost from neurological conditions is due to lost productivity, early retirement and growing reliance of unpaid carers.
The Department of Health has put together a Regional Review of Neurology Services which identifies next steps as:
- Expansion of the neurology workforce
- Increased numbers of specialist nurses and allied health professionals
- Better community-based care
- Improved access to diagnostic and specialist clinics
- More coordinated, person-centred care
- Stronger data collection and service planning
“People want action”
Paul Strain, 59, from County Antrim had his first seizure in 2010, but did not receive a confirmed diagnosis until 2019.
For nine years, he lived with uncertainty, trying multiple epilepsy medications without achieving good seizure control.
Paul believes long waits for specialist diagnostic services including video EEG telemetry, contributed to the delay in getting answers about his condition.
He says NICE guidelines state a patient should be referred to a specialist after two or three failed medications. But that didn’t happen for him. “The resources just aren’t there,” he says.
In November last year, after being seizure free for 16 months, Paul experienced a breakthrough seizure and was admitted to Antrim Area Hospital.
Despite repeated attempts by doctors to contact neurology specialists, he spent around 48 hours in hospital without specialist input and was eventually discharged without a care plan. There were no beds available during the two days and one of the known triggers for seizures is lack of sleep.
Paul did not receive a call from the Neurology department until later that week. Paul describes the delay as “dangerous”, saying he was at risk developing focal status epilepticus – a potentially life-threatening emergency where seizures happen one after another without stopping.
Paul says a shortage of epilepsy specialist nurses has also had a significant impact. He says people in the Northern Trust – the largest trust in Northern Ireland – often have to rely on support from services elsewhere, while epilepsy nursing teams struggle with staff shortages and overwhelming caseloads.
The pressure on services, he says, can leave people feeling they have nowhere to turn. When trying to access the epilepsy advice helpline, Paul says waits of up to 30 minutes are not uncommon and the service closes at 1pm. “Imagine being in a crisis, trying to get advice and realising the phone line has closed,” he says.
Paul believes earlier access to specialist neurologists, epilepsy nurses and multidisciplinary care would have made a significant difference to his epilepsy journey.
He hopes the neurology review will lead to more specialist staff, better communication between hospitals and faster access to the care people with epilepsy need.
“Patients are being left without the support they need to stay safe,” he says. “People are sick and tired of hearing talk. They want action.”
Neurology reform: overwhelming evidence
Speaking about the report, Epilepsy Action says inaction can’t be justified.
“Bringing this report to the steps of Stormont takes the human reality of this crisis directly to those with the power to change it,” said Alison Fuller, director of health improvement and influencing.
“The evidence is overwhelming. Inaction can no longer be justified.
“Every delay has real consequences and until action is taken, people with neurological conditions like epilepsy, and their families will continue to pay the price.
“The current state of neurology services in Northern Ireland is wholly unacceptable.
“More than 28,000 people are waiting for their first neurology appointment, with some facing waits of more than seven years. For people with epilepsy, that means living in limbo without the specialist assessment and answers they need.
“‘Left Behind: The Cost of Inaction’ sends a stark message: Northern Ireland cannot afford not to invest in neurology services. The financial case for reform is compelling, but behind the figures are people dealing with everyday consequences of a system at breaking point.
“We particularly welcome the report’s call for more specialist nurses. We know there are too few epilepsy specialist nurses to meet demand in Northern Ireland, despite the crucial role they play in helping people understand their condition, manage their treatment and navigate care.”
You can help encourage change by sharing the niNCA report with your MLA or MP and ask them to lobby the government to ensure the recommendations by the Regional Neurology Review are funded and implemented.
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