We exist to improve the lives
of everyone affected by epilepsy

How our coffee and chat groups have helped people with epilepsy and their families

 Caroline and Jess Daniel
Read Jess and Caroline's storyRead Daniel's story
 Sarah Nell's story
Read Sarah's storyWatch Nell's story

Jess, 16

"Before me and my family went to the coffee and chat group, I knew no one else with epilepsy.

School wouldn't tell me who the other kids with epilepsy are (there are five of us apparently) and my friends didn't really understand what it was, so I couldn't talk to them much. They've learned more as many of my friends have seen me fit. I looked up things on the epilepsy websites a lot, but they can be quite scary!

When I first went to the group, I was a bit apprehensive. But the day I went, I met some really interesting people. I found it helpful when there were older people who could relate to what is happening with me right now.

I liked meeting the little girl from the family that have recently started coming. She has a very innocent perspective on epilepsy and makes it all sound a little lighter, even when she's had a fit recently! I like that she finds me helpful."

Caroline, Jess’s mum

"Before the group started we as a family felt quite alone. Apart from a contact I had made through Epilepsy Action’s forum4e we didn't know anyone or any other family with epilepsy. We felt quite desperate to meet others, share stories and information and basically know that there are people out there who can understand our worries and fears.

When we attended for the first time I felt quite excited that we would meet lots of other families going through the same as us. Unfortunately there hasn’t been anyone Jess's age yet but I am hopeful that the group will grow. It is nice to know there are others who are going through the same as us."

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Daniel’s mum, Julie

Daniel was diagnosed with epilepsy aged four, after temperature-related convulsions. Julie says the family’s life was turned upside down:

"When Daniel was first diagnosed, we didn’t know which way to turn, what to do or what to expect. We didn't know anyone with epilepsy. We found out what we could about epilepsy and the drugs Daniel was being prescribed from Epilepsy Action booklets and the internet. But we felt very alone.

We didn’t know anyone who was facing the same challenges with seizures and time off school. We were quite desperate to meet others, share stories and information.

Daniel always attends the coffee and chat group with me. It's very much about the family, not just the individual with epilepsy. That includes the siblings and the rest of the family too, especially because in our area, it was support for young families that was particularly lacking.

There is another girl who goes. She is at secondary school and because Daniel is about to go to secondary we have been able to ask her how she copes with memory difficulties and retaining information.

I’m still learning things off other parents who go to the group - for example, about medication and side-effects. You just can't get these things from your consultant. We look forward to it every month."

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Photograph of a coffee and chat group

Sarah, 51

"I was diagnosed with tonic-clonic seizures and complex partial epilepsy at the age of seven. I’m 51 now, so for a long time I was very alone. I didn’t have someone to talk to face-to-face about epilepsy.

There was no one who really understood the difficulties I have on a day-to-day basis. It’s not only about having seizures. It’s how they leave me feeling afterwards, the constant fear of not knowing when my next seizure may come along and wondering if I will be safe or even if I will come out of it - especially because I live alone.

I helped another volunteer to set up the Epilepsy Action Hull coffee and chat group last year. Now, by helping to run the group, I hope I am helping to create a safe, friendly, positive place for people with epilepsy and their carers.

We can come and share our experiences with others and gain independence, self esteem and confidence. Hopefully we can also point people in the right direction for the information they may need, by making sure people know about the Epilepsy Action freephone helpline and information leaflets.

People get different things from the group and give so much back too. Some people just want information and feel less isolated by knowing how they can get more help. Others just love to be able to get out and chat and have a good laugh. But it’s great to see people really happy and growing each month –including me.

I really wish this type of support was around for me all those years ago."

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