Margaret Malcolm from Lochore, Fife, had her first seizure almost 30 years ago. She had no idea what had happened, she was on a playgroup day out and woke up disorientated, wondering where her children were.
This first episode left her with a severe headache and a profound sense of panic.
It was a year later that she experienced another seizure. “It was such a shock,” said Margaret.
“I was a single mother of two very young children and had to confront the reality that I had to prepare the kids for the possibility of future seizures. I taught them that one should stay by my side, while the other went to get help. I hated having to put them in that position. It was so much responsibility for them.”
It was Margaret’s mother that found Quarriers Epilepsy Community Outreach Service – Fife. Margaret continued: “There was a lovely outreach worker who ran the peer support group, she came to see me at home. She asked me what I needed, how I felt. I wasn’t getting any real help from anywhere at that stage, so it was lovely to have someone listen to me.
“I had applied for disability allowance and was rejected. The outreach worker said that wasn’t acceptable and that we should appeal. She helped me explain what it was really like to live day to day with epilepsy, and the challenges it brought. The allowance was approved which made a huge difference. Times were hard financially, and this stopped me worrying about feeding the children.
“The outreach worker talked to me about the help that the service could offer me and told me about the peer support group that meets up every month.
“Looking back, I was probably quite depressed and really wasn’t feeling confident about going along. I felt like I was the only one going through this. And I hated when people would stare at me when I had a seizure. I know they were well meaning, but it was difficult, and I was having maybe two a week and it would take me days to get over them.”
Margaret did pluck up the courage to go to the peer support group, despite her nerves.
“Everyone was so welcoming. I found people who knew exactly what I was going through. Whatever had happened to me, someone there would have experienced it. I had the highest feeling ever when I went home after that first group meeting.”
“Everyone was so welcoming. I found people who knew exactly what I was going through. I had the highest feeling ever when I went home after that first group meeting.”
Through the peer support group, which meets every month in Tesco Dunfermline’s community room, Margaret has made life-long friends.
“We don’t even have to talk about epilepsy. You can just be yourself. You can even forget about having epilepsy for a few hours and talk about other things.
“My son has been diagnosed with epilepsy and he loves the peer support group too. He is one of the younger ones, he is in his mid-30s. He also gets involved with the support group’s online chats and meetings. Plus, we have Whatsapp group chats where we can share worries and sometimes just have a moan or a laugh. Everyone understands what you are going through.”
The Fife service is now run by Leanne Hynes. Leanne’s role is to support people in Fife who live with epilepsy. However, support is different for each person.
“Leanne is very good, she is right in there, she will do whatever she can to help you. She helps me fill in any forms that are needed for social security assistance, and she can help with housing issues.”
“This year there was some funds raised, so the group is going out for dinner in Dunfermline, and we have just been to the Burntisland Highland Games in late July for the day. Last year we went to the pantomime.”
Margaret’s epilepsy has left her with a slight tremor and memory issues. Neither matter when she is at the peer support group.
“I would encourage anyone who has epilepsy or if you have someone in your life who has epilepsy and you want to know more, to come along to the peer support group. It’s easy to get to on public transport. It’s a good mix of men and women, young and old. Everyone is very welcoming, and we can all relate to each other.”
Margaret’s story highlights the diverse ways in which the service can assist the members. It offers a range of services for people living with epilepsy, their carers and professionals.
Providing information, support and advice on how to live well with epilepsy. Advising on matters such as benefits, housing and employment and it can help you access appropriate local resources.
Leanne said: “We offer support in completing benefit application forms such as the new ADP, PiP, ESA and UC. Knowledge of epilepsy and the impact it can have on a person’s life is important to ensure people living with epilepsy do get the benefits they are entitled to. We can help in providing accurate information on seizures and the physical, social, emotional and psychological effects of living with epilepsy.
“The Epilepsy Community Outreach Service – Fife is an essential resource offering personalised assistance to anyone who makes contact.”
To find out more, go to Epilepsy Community Outreach Service – Fife – Epilepsy and Neurology – Quarriers Or you can contact Leanne on 07812 228495 or via email on [email protected]
The monthly peer support group meets at Dunfermline Tesco, the first Wednesday of the month. The biscuits and cakes are an essential part of the support progamme!
