People living with epilepsy can face many challenges, from finding employment to accessing available support and coping with the anxiety and stigma that often accompany the condition.
Quarriers Epilepsy Fieldwork Service delivers support throughout Aberdeen, Aberdeenshire, Moray and Fife for people affected by epilepsy and for their families, carers and anyone else who supports them. This support covers a wide range, from advice on maintaining a healthy lifestyle and accessing community resources to advocacy, support groups and advice for employers.
In 2016, the service was awarded a grant from The Big Lottery Fund which will enable expansion across the Highlands and Tayside. Providing support to people in their homes and local communities increases the number of people who can access the service, particularly as many people affected by epilepsy are unable to drive.
When a person gets in touch with the service, they meet someone with knowledge of epilepsy who understands. They can discuss their needs and what they would like to address. Whether it’s having the confidence to leave the house or finding employment, the service is there to help them achieve their goals.
“Confidence is a real issue for people with epilepsy,” says Epilepsy Fieldwork Manager Lynnette Oldman. “Even if you have been seizure-free for a long time, the concern that another seizure could happen at any time is there. But we are here to help, and the best thing is seeing people’s lives turn round after a long period, and seeing that they have achieved their goals.”
When Ross contacted Quarriers Epilepsy Fieldwork Service in 2012, life was difficult. His confidence was very low, and he was about to be made homeless. Fieldworker Lorraine McNab helped him to find somewhere to live and access benefits he was entitled to, and within two months, he felt like his life was back on an even keel.
A real turning point for Ross was helping to set up an epilepsy support group in Inverurie, one of several groups run by the service. As well as benefitting from the support of other people who understand what he has gone through, Ross has become the chairperson of the group.
Overseeing the day-to-day running of the group and organising fundraising activities has really boosted Ross’s confidence and self-esteem. A particular highlight for Ross was helping to organise a sponsored rock climb in which the group raised £1,500 for the service.
“The best thing is knowing that you have helped,” says Ross. “That’s been a brilliant benefit for me.”
Pauline’s life changed when she had a severe seizure which almost caused a traffic accident. She had been diagnosed with epilepsy when she was very young, but describes this seizure as unlike any she had experienced before. Her vision and memory were affected, and she felt disconnected, like she didn’t know what day or time it was. She had to give up work, and struggled to tell her two daughters about what had happened.
“The seizure stopped me going out,” says Pauline. “I wouldn’t get on my bike, wouldn’t go to the shops, and I thought the worst of every situation.”
Things changed when Pauline’s husband heard about the Epilepsy Fieldwork Service. Fieldworker Lorraine visited Pauline and they talked at length about Pauline’s situation. As Pauline says, it was a relief to talk to someone not connected to the family, someone who could give impartial support. Lorraine supported Pauline through reviewing and changing her medication, and to access benefits she was entitled to. Pauline created a list of goals she would like to achieve: find a job, work in a caring profession, walk up and down her street, start a support group in Inverurie, and go cycling again.
Pauline smiles as she says the only thing left on the list is getting back on her bike again. She plays an active role at the support group in Inverurie, and is now working full time as a carer. She’s also happy to walk around her neighbourhood again, and has taken part in a sponsored swim to raise funds for the service.
“It took best part of a year to have the confidence to go down the road, and it took Lorraine to come with me and encourage me. With a lot of hard work from myself and the people around me, I’m getting better.”