2024-12-31-accounts - The Families And Friends Of The Epilepsy Society

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14.02.25

Chair’s Report for FFES 2024

This has been the second 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 57 members and an Honorary Membership list of 27. 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.

We have an excellent Board of Trustees who 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 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 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.

Many people enjoy their regular trips to the Nature Trail and have participated in events, such as the small animal petting farm and the picnics and games during the summer months. Maintaining and continuing to grow and develop the Nature Trail has been a joy to all the volunteers working there. We await with anticipation the arrival of Spring on the Trail and gradually see the colour return to it.

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. 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 Medical Director, our Director of Care and Director of Business Development and also with the Learning Disability Nurse at Wexham Park Hospital.

Another great step forward for us as a charity is the formation of our own website (https//www.ffes.info) and that has been possible through the extremely generous free time given by a friend of one of our Trustees. The website 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 Petting again this year 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.

Many challenges await us in the coming year and work has already started! Our main focus, and the one that is troubling members the most, is the low level of Medical Support and Cover at the Epilepsy Society. This must be our main focus at FFES this year to lobby for improvements in Medical Services, both in terms of Consultancy hours available and through employment of an Epilepsy Specialist Nurse.

Another focus is 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 already begun meeting with Rebecca to see how we as relatives can work more closely with ES on this target, initially aiming for everyone who wants an Annual Review to have one as a means of focussing on a person-centred approach to activity planning. Our aim is also 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 SocietyTrustees towards a better understanding of Care Services and the needs of our loved ones.

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 small difference in a way that we can all be proud of.

Thank you.

Nicola Davies FFES Chair.

FFES 14 Slicketts Lane Edlesborough Nr Dunstable Beds. LU6 2JD 27 Planwion R(wl LeightOD Buzzard LU7 3HJ 28th Jan 2025 Dear FFES Trus Independent Examiner's Report to the Trtff of FFES { FFES being the Families and Friends of the Epilepsy Society ) J reEK)rt404hotrustees pn rny examinalion of the aCCOUDts of the FFES for the yew fAd 31 December 2024. Re•poDslbilities And bas1& of the report As the charity trustees of the FFES you are reswmsible for the prepration of the a¢¢owits in accordance with the requirements of the Chan'ties Ath 2011 ( 'Ihe Act" ). J reFx>rt in res1 of my examinalion of tk FFES accounts caTried out under Sli0n 145 of th¢ 2011 Act and in carrying Out my examination I ve follow all the applicable Dir¢¢tions wven by the Chan'ty Commission under section 145 {5Xb) of th¢ Act. Independent EIAminer • Sttement I have completed my examination. I confirni that no material matters have come to my attention in conn¢¢tion with the examination giving me cause to b¢liev¢ that in any material reS¢t .' l. accountin8 records w¢re not k• in r¢sm of the FFES as required by section 130 of the Act. or 2. th¢ a¢¢ounts do nol ard with those rd$. I have no concerns and have Come across no other matters in connection with the examination to which attention should be drawn in th1.5 rert in ord¢r to ¢nable a proper undeTStanding of the accounts to be reKhed. Signed . Name . Retired Cost Engineer Address . 27 Planlation ROA4 Leighion Bzard Beds LU7 3HJ.