FFES Our Voices Matter: A Request to be Heard addressed to the Board of Trustees of the Epilepsy Society

We are making this request to the Board of Trustees in the form of a letter, because our attempts to establish lines of communication with the current Board of Trustees have been largely unsuccessful FFES (the Families and Friends of the Epilepsy Society) is a registered charity which aims to enhance the lives of the 110 people supported directly by the Epilepsy Society. FFES Trustees all have family cared for by the charity. As well as fundraising for, building and maintaining the Nature Trail, we run a monthly concert for residents and staff and aim to work proactively and co-operatively with Epilepsy Society management in pursuit of our aims.

In recent years we have endeavoured to establish open dialogue with Epilepsy Society Trustees and senior management, but feel we have had little success. There are occasional, formal online meetings with representatives of the Board, but these meetings are one directional: management speaks to us and answers certain pre selected questions. There is little or no dialogue. To be clear, most of our members are extremely grateful for the service provided to our loved ones. They feel it is good, but that it could be better. Furthermore most of our family members cared for by the Epilepsy Society have no voice. We are their voice, and have been for the majority of their lives. We know it is not possible for Epilepsy Society to get everything right all of the time. But things could be better, and improved communication is at the heart of most of those challenges. Thus we request the following:

1. A Place on the Board There are 13 Trustees on the Epilepsy Society Board. At least one should be an FFES member. Quite clearly that person would not be allowed to lobby for their loved one’s individual interests. But they would be there to help inform the Board of the lived experience of residents. Otherwise, how can they gain a real understanding of the lives of the people they serve? The funds received by the charity for these 110 residents comprise over 70% of the charity’s annual income.

2. Regular Informal Meetings with Trustees To be held three times per year, each time on a different residential House. A group of 3 to 4 Epilepsy Society Trustees meet with a group of 3 to 4 FFES Trustees to discuss issues and progress. These meetings would not be to discuss individual resident issues, but to highlight ‘big picture’ issues.

3. A Quarterly Newsletter for Families Families receive very little information from the charity at the moment. This newsletter would fill the information void.

4. Chalfont Restored This small campus in the heart of the Chalfonts, in Buckinghamshire, is synonymous with advances in epilepsy care and treatment. Campus based care may not be considered fashionable by the Care Quality Commission (CQC) and others, but to us, it is a lifeline, and a facility worth fighting for. Specialist care provision for people with very hard to treat epilepsy is extremely hard to find. Let’s celebrate it, strengthen its reputation and restore it so it is fit for purpose for those who live there now, and those who will need it in the future.

SIGNED BY THE CURRENT TRUSTEES OF THE FAMILIES AND FRIENDS OF THE EPILEPSY SOCIETY CHARITY: