Patricia Johnson, Family Support Manager explains why you might like to get active in family support and what opportunities exist.

"Supporting grieving people is at the heart of Epilepsy Bereaved and has been so since its inception as a self-help group. The founders of the charity found others who had experienced a similar bereavement and reached a shared understanding that they and their families were not alone in their grief or in their desire to do something about epilepsy deaths. There is a range of opportunities for helping with the family support service."

Bereavement Contact Line

Family Support is responsible for the bereavement contact line. People email or leave a message on the contact phone line and the family support manager responds as soon as she can and normally the same day. The family support manager can answer questions about Epilepsy Bereaved and will listen to callers about what sort of contact they would like with the charity.

Callers are offered an information pack and the chance to have ongoing contact and support by telephone with a contact line volunteer. Timing, length and duration of these calls are mutually agreed by both parties. Obviously, time to adjust to a death and to living without the loved one is necessary as well as appropriate personal qualities before anyone is able to contribute in this way.

Currently there are ten volunteers, trained in Family Support policies and in this role. Part of my job is to support them and help them reflect on their work.

Epilepsy Bereaved Meetings

Sometime volunteers meet the person they have been phoning or emailing. This might happen at a Epilepsy Bereaved Meeting. These meetings are held in different parts of the UK each year and have the dual aim of giving people a chance to meet and share their experiences as well as learning more about the charity.

We need help with finding suitable venues for these events. They are held on Saturdays usually 11am – 4pm in places with easy access by train and car. Catering also needs to be organised for morning and afternoon refreshments, as well as lunch, and people are needed for serving refreshments and washing up. Please get in touch if you can help with any of this.

Family Support leaflet

Please get in touch if there are places in your locality where our leaflets can usefully be placed.

Volunteering

So volunteering within Family Support can vary from one-off situations of practical help for a short space of time, to regular and sustained commitment over some time, and a variety of options in between.

Please get in touch with Patricia Johnston if you are interested in getting active within Family Support - email: ebfamilysupport@dial.pipex.com