Ena Bingham is a retired epilepsy specialist nurse. She was the first Sapphire Nurse in Northern Ireland. Stacie Sheeran was diagnosed with epilepsy in 2007. Together they volunteer at the Belfast coffee and chat group.
They spoke to us about why they began volunteering for Epilepsy Action and the work they have been doing.
Ena’s experience with Epilepsy Action had given her an insight into what volunteering for the charity would be like. “I had been involved with Epilepsy Action for over 20 years and I was aware of the valuable work volunteers are involved in.
“I started volunteering because I wanted to continue my involvement with Epilepsy Action as they had funded my post initially as a sapphire nurse. I wanted to give something back to the association and continue to help those coping with a diagnosis of epilepsy.”
Stacie explains that after her diagnosis she was confused about the condition. “I found that at that time there was no support and the local GP had a very limited knowledge of epilepsy. There was no history of the condition in my family or close circle, so I found that period of time quite isolating."
In order to break this isolation, Stacie searched for volunteer groups in Northern Ireland. As well as looking for support, Stacie was also keen to volunteer her time to raise funds and awareness for epilepsy. This is how Stacie became involved with the Epilepsy Action Belfast coffee and chat group, hosting meetings once a month.
“People who have been diagnosed with the condition or indeed those affected by the condition can come along and feel comfortable discussing how it affects them in an open, non-judgmental environment. Some people come for advice as they have often not found the support they need and some just come along to hear other people’s stories.”
Since becoming a volunteer, Ena has given presentations about epilepsy awareness, using her experience as an epilepsy nurse to offer an invaluable insight.
“Attending coffee and chat meetings and giving presentations on epilepsy to groups has been a very enjoyable experience. It is good to know that so many people want to know more about epilepsy and its management.
“I find it rewarding in many ways as I feel I’m giving back to society some of the expertise I have gained during my working life. Unfortunately so many people with epilepsy and their carers are still given incorrect information. I feel I can give them up-to-date and correct information about the condition and point them in the correct direction for help with issues that are concerning them.”
Volunteering to help run the Belfast coffee and chat group has helped Stacie understand more about epilepsy. She hopes that is also true for others who attend the group. “I hope the group provides a place where each individual realises that they are not alone. The mysterious symptoms that they experience are common in other people with epilepsy.”
Reflecting on her volunteering, Ena has been encouraged by the positive responses she has had already. “It is early days yet but I’m confident that feedback will be positive. After the few sessions that I have been involved in, the people there are pleased with the information and help given.
“It has been a very worthwhile experience and patients and family appreciate any help given to them.”
Stacie feels there is still stigma around epilepsy, and encourages others to consider how they can help raise awareness. “I would recommend to anyone who is passionate about raising awareness of this condition to volunteer a small part of their time. Unfortunately, it is an invisible illness and even in 2018 still has barriers to break down with regards to stigma.”
Find out ways you can volunteer at epilepsy.org.uk/volunteer