Chair’s Report for FFES AGM Friday May 1[st] , 2026
This has been the third full year of operation for our charity, FFES, which exists to improve the quality of life of people cared for by the Epilepsy Society, and those who support them. FFES now has a Membership of 63 and an Honorary Membership of 38.
There are still many residents who live at the Epilepsy Society who no longer have living relatives so our philosophy as a charity has always been to ensure everyone who lives at the ES is included in all that we do.
FFES has an excellent Board of Trustees, and we meet monthly with a packed agenda, ensuring we discuss the issues which most concern us and our members at the time. Trustees have worked tirelessly in a variety of volunteering roles to ensure we have strong governance, always focussing on ways in which we can improve and enhance quality of life for the people who live at ES as well as their support staff. We are extremely sorry to report that one of our Trustees, Lorna Soesman sadly died at the beginning of the year and will be greatly missed.
We are always really grateful to our members , many of whom volunteer their time to help maintain the Nature Trail and the Memory Garden as well as gardens in the Houses where their loved ones live; support our Sunday Sounds ‘events through the provision of delicious food, or by assisting at the events themselves; support and attend events we run on the Nature Trail; and, so important for us as a small charity, the many, many people who have donated money to support one or more of our initiatives. We thank them all for their kindness and generosity.
Thanks to the initiatives of our Trustees and Members, we believe that we have helped to enhance the lives of the people who live at Epilepsy Society in a variety of ways. Everyone, (staff, residents as well as relatives), has been able to look forward to the monthly Sunday Sounds events in the Recreation Hall with a different variety of Musical Bands on stage each month. All look forward with eagerness to the delicious homemade refreshments provided free for everyone attending. Last Autumn saw the welcome addition of the Saturday Pump Room café in the Rec Hall where people who live on site enjoyed a variety of games, a nail bar and also, this Spring, a disco with our own resident DJ!
Many people enjoy their regular trips to the Nature Trail and have participated in events, such as the animal petting farm which we held last year and which we have already held at the end of March this year. The Paella van (with accompanying music) was a huge success last summer, as were the picnics and games on the trail. The Autumn pumpkin competition was fun too even though rain stopped play outside and all the pumpkins had to be weighed
in from a wheelbarrow in the Rec Hall! Maintaining and continuing to grow and develop the Nature Trail has been a joy to all the volunteers working there. Spring on the Trail arrived with plenty of colour this year in the form of all the daffodils, tulips and hyacinths which we had planted in the Autumn. A lovely site to see!
There are regular attendees to the two swimming sessions held each week at Woodrow High House and Leisure Centre, with very grateful thanks to our Trustee, Julie, who set up the Tuesday sessions.
These are both very enjoyable sessions, attended also by the Physiotherapist.
Members have had opportunities to meet with the ES Trustees in 2 virtual meetings last year as well as attending meetings with our Director of Care and Director of Business Development and also with a Care Manager from Rennie Grove Peace Hospice Care.
We have now established a practice that at Christmas all Support Staff receive a voucher from FFES to use in the café. This has been a small recognition of all the work support staff do for our loved ones
Our FFES website (https://www.ffes.info) has helped take the charity to a different level, and provides updated information for members and non-members as well as providing a platform for epilepsy related articles etc. As lobbying becomes increasingly important to us, we have a social platform available if needed.
Also established is a good network of mutual support set up through WhatsApp groups amongst our members and regular emails, ensuring everyone is kept in the loop about anything Epilepsy Society related. The Newsletters established during the year by one of our Trustees are also an excellent form of communication in Houses, with staff and with relatives.
You will see from our Treasurer’s report that our finances are currently healthy thanks to the membership subscriptions and the donations we receive and this enables us to plan well for the coming year in terms for example of hiring bands for Sunday Sounds, financing the Ark Farm on the Nature Trail , replenishing summer plants and developing our sculpture and seating areas on the trail as well as buying summer plants for the Phoenix Garden, providing refreshments for our events etc etc.as well as having money in reserve so we can plan further into the future. Your membership subscriptions and donations are really important to us so thank you so much for your generosity.
There have been many challenges over the past year and the one that has troubled members the most, has been the low level of Medical Support and Cover at the Epilepsy Society. At the end of last year, we were very pleased to hear that Gemma Lee (previously working as a nurse in QEH) had been appointed as a full time Lead Nurse across the site. Members remain concerned however about the few Consultancy hours from Neurology available at Chalfont and the fact that we still do not have an Epilepsy Specialist Nurse on site.
Another focus last year was to see the level of Activities both in house and externally improve across the site as this remains inconsistent from Service to Service. FFES Trustees have been pushing for an Activities Coordinator to be appointed, and we are hoping that this position may come to fruition later in 2026. We also pressed for Annual Reviews to be re-established across the site as a means of focussing on a person-centred approach to activity planning. Our aim remains to gain greater consistency across the site for the Keyworker role. We believe that a job description and better training would improve this role significantly.
Amongst our challenges remains the ongoing challenge of improving dialogue and discussion directly with the Epilepsy Society Trustee Board. Currently we have 2 virtual meetings a year with them but no direct face to face contact which we feel is essential if we are to help Epilepsy Society Trustees towards a better understanding of Care Services and the needs of our loved ones. We remain firm in our belief that relatives across the site can play an important role in advocating for the people who live at Chalfont and for that reason representation either at Board level or in coproduction groups with Senior Management can make this belief a reality.
We all now hope that a decision on the Epilepsy Society Planning application will be with us very soon (on or by June 1[st] appears to be the latest estimate). It has been a long wait with the decision being in the hands of the Secretary of State.
Despite everything, this year has been a year of considerable progress for the Charity and everyone in FFES should feel a sense of delight in seeing some of the differences we are all making to bring more joy to the lives of our loved ones. Whether it be thorough volunteering, attending events, making donations or paying membership fees to FFES, all of you are making your own difference in a way that we can all be proud of.
Thank you. Nicola Davies. FFES Chair.
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