Paul, 52, from Greenisland, Northern Ireland, was diagnosed with epilepsy ten years ago. His wife found him when he was having his first tonic-clonic seizure and had to call emergency services as he was completely unconscious. He has no recollection of the paramedics escorting him out of his house. He recalls feeling in total shock when he was eventually diagnosed. His first seizure had totally come out of the blue and there was no previous history of it in his family.
Paul 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 meet with others. This group has been meeting virtually during 2020: “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, but I eventually 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 have 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 the pandemic has had. 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.”