Roseanna’s story

Roseanna has had epilepsy since she was 21. She has focal seizures that are caused by a scar on the temporal lobe of her brain. Her seizures are mostly controlled by medication now, but she says that they caused her to have “15 really dark years”.

Roseanna has directly felt the epilepsy specialist nurses she has had being stretched too thin. She said: “When I was first diagnosed, I had a nurse called Ena Bingham who was incredible (Ena went on to be awarded an MBE for her work in 2001). She gave me and my family so much support at the beginning with my epilepsy. She would be around after my appointments with the neurologist and comfort me if I was upset. And I could call her at any point with questions, or if I had any problems. She helped me navigate having epilepsy.

“Recently, I can really tell that the epilepsy specialist nurses I have seen (there have been a number of changes in personnel) have been under pressure and I feel sorry for them. They just don’t have the time to support everyone as I know they would like.

“People with epilepsy have a lot to deal with. When I was first diagnosed, it took me a long time to come to terms with my epilepsy and accept what was happening to me. It was really hard having seizures in public, especially when people don’t know what to do. I used to really struggle with people’s attitude towards epilepsy. It can feel like people don’t want to know you when they find out you have epilepsy, or that they’re constantly questioning you. We really need enough epilepsy specialist nurses to help people come to terms with the emotional challenges they face, as well as the seizures themselves.

“It feels like epilepsy has been pushed to the side for so long now. We really need more funding and for people to take our health services more seriously.”

Roseanna set up and runs the Fermanagh Epilepsy Action Coffee and Chat group (which is meeting virtually in 2020). Through this group she comes into touch with lots of other people with epilepsy. She said: “I see it affecting the young people who come to the group a lot. We have members who have had no contact with an epilepsy specialist nurse at all. One of them had to wait for 18 months to speak to someone after their first appointment, they just couldn’t get through to anyone to get help even though they were really struggling. It’s just not good enough!”