New epilepsy group set up by two Doncaster women

Jess Swattridge, aged 44, and Alison Ellis, aged 49, will be leading the monthly meetings in Doncaster. The firstof which took place on Monday.

Jess developed epilepsy when she was a teenager and the diagnosis completely changed her life.

She explains: “My first seizure happened as I sat down to take one of my GCSE exams. After a stay in hospital and multiple tests, I was diagnosed with tonic clonic seizures. It wasn’t until my 30s that I was eventually diagnosed with non-epileptic seizures (NEAD) and after being on the waiting list for a few years, I’ve now had neuropsychiatric appointments to help find the cause, and methods to help control the seizures.

“I felt absolutely destroyed when I was diagnosed. I had planned on joining the army as a medic and had spent my teen years in St John Ambulance and the army cadets all with that goal in mind. Then in a few short moments, that was all gone.

“My seizures stopped for a few years when I was on medication, and I was able to begin to learn to drive. However, I had a seizure on the morning of my driving test and it felt like just another thing that was taken from me. I started to see epilepsy as some unseen enemy within me and it’s taken me many years to come to terms with this condition.

“Epilepsy left me with the feeling of being lost. I’d spent so much time and had put so much mental effort into the career path I’d chosen just for me to be denied it. I struggled to find the career I would do to replace it. After university, I eventually found a career that fulfilled me. I became a Special Education Needs Teaching Assistant working with autistic children and children with behavioural issues. I loved my job as it was something where I was able to help others.

“After a few years of being in this job, my seizures started happening when I was working in the school and it was impacting my work with the children. Eventually I was no longer able to carry on my position which broke my heart. It’s only since lockdown and the rise in work from home positions that I’ve been able to even consider retraining and looking for work again.”

Jess struggled to find the support she needed when she was first coming to terms with the reality of her diagnosis. She said: “At the time, and in the area I grew up in, there wasn’t anyone else with this condition and no source of support for me to turn to. Even my mum didn’t quite understand why I had epilepsy as “no one else in the family has it.” It wasn’t until later in life that I managed to find the support I needed.

“I was contacted by my epilepsy nursing team in Doncaster about the posting to run the Talk and Support group, so I applied as I wanted to do something to help others who are struggling to find support like myself when I was younger. Whether they have been living with epilepsy long-term, are newly diagnosed or care for children and family members, everyone affected by epilepsy deserves respect and support in life.”

Jess will be running the group along with Alison whose daughter was diagnosed with epilepsy when she was just 13 months old. Alison said: “My daughter has various different types of seizures, and her epilepsy is drug-resistant. It was very hard and upsetting to receive her diagnosis, especially with us not knowing a great deal about the condition.

“There was no one for me to speak to back then, and I felt really alone and lost as I was trying to come to terms with what she was going through.

“The most challenging thing for me was learning about the medication and care she would need and how this condition would affect my daughter’s life. Epilepsy has changed our lives. We can’t plan holidays and days out in advance, and often we don’t want to go out in case my daughter has a seizure. Often we feel like people are staring at or avoiding us because they don’t understand.”

Jess and Alison connected through Epilepsy Action in the hope of creatinge a welcoming and supportive space for people affected by epilepsy to come together.

Alison said: “I want to try and help others in a similar situation by letting them know they’re not alone and there’s always someone to talk to who understands what it’s like to live with epilepsy. I wish I knew there was help available back then and how to access it.”

Jess added: “I hope people will find this group to be a place where they are offered support, respect and understanding, where their voices are heard, and their concerns are met.

The group with have a relaxed, friendly atmosphere where people can be themselves and talk about their condition.”

The meetings will be at the C-View centre, Church View, Doncaster, DN1 1AF.

Leona Phillips from Epilepsy Action, said: “Talk and Support groups are so important as they give people who are living with the impact of an epilepsy diagnosis space to connect, share experiences and seek advice. Jess and Alison’s stories highlight just how essential it is to be able to speak to others who understand what you’re going through and we’re delighted that they’re helping us to expand our network of Talk and Support groups.

“Around 13,000 people live with epilepsy in South Yorkshire and the new Doncaster group, alongside the Sheffield group and virtual groups, will mean that more people affected by epilepsy in the area can access the support they need.”

To find out more visit Epilepsy Action – Doncaster Talk and Support group Events | Eventbrite

Epilepsy affects around one in every 107 people in the UK and 79 people are diagnosed every day. Epilepsy Action are committed to improving the lives of people with epilepsy, by campaigning for better services and raising awareness of the condition. They provide a national network of support groups, with expert advice available on its freephone helpline 0808 800 5050.