Greenisland man supports plea for more ‘lifeline’ epilepsy specialist nurses

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 affects 20,000 people in Northern Ireland. The charity believes there should be significantly more adult epilepsy specialist nurses. Its initial estimates put the number needed at around 30.

Paul Strain, 53, from Greenisland, was diagnosed with epilepsy 10 years ago. He has focal epilepsy and tonic-clonic seizures. At the beginning of his diagnosis, he used to have around three to four seizures in a day but now has three to four a month. He says it can take days to recover.

“Some days I have to sleep for at least five hours – I just feel so tired. The seizures can also make me feel very emotional and down. The other frustrating thing is that I get no warning before I have one. It can be really inconvenient depending on where I am, or even dangerous.”

Last year, Paul set up a support group in Carrickfergus to help people with epilepsy (read here). This group has been meeting virtually during 2020.

Paul said: “For the first seven years of my diagnosis, I felt really isolated and found it hard to talk about what I was going through. There was no support group near me, until I went to Epilepsy Action’s coffee and chat meeting in Belfast. I found it incredibly helpful to speak to people who have epilepsy - I instantly felt reassured.

“We are currently so under-resourced here in Northern Ireland. I’ve never had an epilepsy specialist nurse in the health trust where I am, which adds extra pressure. I found out recently there are only two adult nurses in the Belfast trust, and few elsewhere in the country.

“I’ve always had to ring the epilepsy specialist nurse in Belfast if I need any support. When I have managed to reach them, their support has been amazing. I had a PIP assessment review earlier this year and the nurse wrote me a letter to support it. That just shows how beneficial nurses could be to everyone if there were enough.

“In terms of waiting times, my neurology review was due to happen in July but didn’t happen until later on in August. I guess that’s expected though, with the impact of the pandemic. My feedback from the consultant suggests they’re on top of reviews for people already diagnosed with epilepsy. But the main problem is seeing people who’ve just been diagnosed.”

Epilepsy specialist nurses 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, the charity notes, are more likely to report that they are satisfied with their healthcare.

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.

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. 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.

“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.”

Dr Michael Kinney, Consultant Neurologist with subspecialist interest in epilepsy in Northern Ireland and a member of the charity’s advisory council, said: “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 is writing to Health Minister Robin Swann to make this case, and contacting health trusts to discuss their plans for their epilepsy workforce. People can find out more about the campaign, including how to support it, by visiting epilepsy.org.uk

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