Mark's story August 2012

Mark's story is a classic example of the challenges faced by many people with epilepsy. He’s a polite, bright and articulate 30 year old man whose confidence has been eroded by a long battle with epilepsy. He has clusters of seizures lasting for seven to ten days, then calmer, seizure free periods. The intermittent nature of epilepsy, especially for people with hard to control seizures, can have a huge impact on people’s lives. However, it doesn’t need to take away their ambition.

Mark comes from Tamworth, Staffordshire. Before moving to Independence Homes he lived with his parents Sue and Dave and younger brother Paul. Mark moved to Liberty Court, a purpose built block of flats for adults with epilepsy in 2007. He’d been looking for greater independence for some time, but still needed the kind of support for his epilepsy that his family had been providing at home.

Like many people, the Taylor family found Independence Homes through an internet search for suitable care providers. They arranged a visit, followed by a six week assessment, during which time it became clear that Liberty Court would be ideal for Mark.

Mark shares his flat with another man who has epilepsy, and has settled into a positive lifestyle. Mark is a member of the local Baptist church in the area. The church has a very active congregation, and Mark is involved in many aspects of the church community.

Mark’s epilepsy means he relies on others for support. However he has clear ambitions and on learning about a Christian event called Momentum, due to be held near Bath during August 2009, he wanted to go. He made this clear to his support workers, but obviously there were concerns. Independence Homes, as the name suggests, looks to help all its service users to live an independent life, but won’t compromise on their safety.

Mark’s request was discussed with his parents, who had their own reservations, but he was positive. His care manager felt that as long as Mark was making an informed decision, and was fully aware of the risks, his request should be agreed to if possible. And so Independence Homes began planning for the trip.

Kate Hardcastle, wellbeing manager, worked on a safety plan with Mark. He would be travelling towards Bath with a group of nine others, so Kate spent time with some of them, explaining what to do as and when Mark had seizures. It was also agreed that Mark would phone in twice a day to confirm that he had taken his regular anti-epileptic medication.

The trip was a huge success, thanks to Mark’s growing confidence and the preparation that had taken place. He did have two seizures whilst away, but his companions knew precisely what to do.

As Kate says “We’re very proud of how Mark handled this. He has grown in confidence since he came here, and was able to present his case sensibly when we were at first cautious about the whole idea of the trip. He stuck up for himself, and I don’t think he would have done that a couple of years ago. I think Mark has gained a huge amount of social confidence from the whole experience. He got so much from the trip.”

Mark speaks modestly about the trip, but it is clear how much it meant to him.

“There was just so much to do. It was an absolutely amazing event. I’m happy for myself, happy that I finally got there. It was good to make my own decisions about what to do.”

Helping people with epilepsy to achieve the independence they want is challenging but not impossible. Epilepsy can be a debilitating condition, not least because of its unpredictable nature. It requires team-work, planning and a positive spirit, all of which Mark has in abundance.