Victoria, 30, from Londonderry, had her first seizure when she was 13 years old, and was diagnosed at 14.
She has tonic clonic seizures, absence seizures as well as myoclonic jerks. At the start, she had tonic clonic seizures at least every three months. Between the ages of 24 and 27 years old, she went for 3.5 years without having a seizure. Victoria summoned up the courage to learn to drive.
Just a few weeks after passing her test, someone drove into the back of Victoria’s car, giving her whiplash and causing her seizures to start again. They are not as regular as they were, but she recently had three tonic seizures in one day. She has dislocated her shoulder and may need surgery which may have impacted on the increase in seizures she has recently experienced.
Victoria used to be under the care of epilepsy specialist nurse Ena Bingham, who was awarded an MBE for her services to people with epilepsy in Northern Ireland in 2011. Ever since Ena retired, she hasn’t experienced the same level of epilepsy care.
She said: “I don’t always feel like my neurologist and my epilepsy specialist nurse have the time to listen to me now. It feels like they are under pressure. I know they have so many people to care for. I used to be able to ask my epilepsy specialist nurse questions and get answers between appointments. Now they refer my queries to my neurologist, and I have to wait until my annual appointment to get the information. This is difficult.
“I have one appointment with my neurologist a year, the latest was only seven minutes long. My mediation hasn’t been changed since 2018, even though I am still having one or two tonic clonic seizures a year, as well as the myoclonic jerks.
“The NHS is amazing, but it needs to be funded properly. Every time I have called an ambulance, the paramedics have been amazing. But doctors and nurses need to have the chance to look after people properly, rather than it all feeling rushed. People with epilepsy in Northern Ireland have a lot to deal with, the stigma of having the condition is still so huge here. We really do need health professionals who have time to listen and added funding to support us.”