18th March 2025
FFES holds AGM and previews challenges ahead
The care provided by the Epilepsy Society is very special. 100 men and women with the most extreme forms of epilepsy call it home. As their parents and brothers and sisters, we value the Epilepsy Society more than words can describe, and we will do all we can to preserve it and enhance the experience for residents and the staff who support them.
That was one of the key messages to emerge from the 3rd Annual General Meeting of the Families and Friends of the Epilepsy Society (FFES) charity, held in early March.
Chair Nicola Davies presented her review of 2024, which highlighted an extraordinary array of success, including:
- Enhancements and maintenance of the Nature Trail
- Numerous events under the Sunday Sounds programme
- The introduction of swimming sessions at a nearby pool
- Ongoing support for one another as we seek the optimal care for our loved ones
BBC articleThe charity strengthened its financial position during the year thanks to a number of individual and corporate supporters, and we thank them all.
As always, there remain areas of concern. Perhaps most urgently, FFES members feel that the charity’s medical team needs to be strengthened to ensure preventative care is at the forefront of the charity’s culture, thus keeping our loved ones out of hospital as much as possible through prompt diagnosis and treatment of non-epilepsy related issues. Thus it is felt there needs to be a consistent nurse led medical presence every day of the week.
Similarly, the employment of an epilepsy specialist nurse, for example, would seem like a highly appropriate action for one of the world’s leading epilepsy charities. This would also ease the pressure on consultant neurologists, as access to specialist epilepsy neurologists was also a concern for many.
Two FFES trustees stood down at the meeting. Frank Ryan and Rex Leyland have both served the charity and campaigned for our loved ones for many years. We thank them both, and pledge to continue their work. We were also delighted to welcome three new Trustees in post, namely Jane Knight, Andrew Camp and Jenni Back.
27th January 2025
FFES thanks Bioscript
During 2024 our charity was the grateful recipient of close to £4,000 of funding from Bioscript, the medical communications company. FFES was nominated as Bioscript’s charity of the year following a presentation to a whole company staff meeting by our Trustee David Josephs, which took place in late 2023.
Bioscript invites each member of staff to nominate a charity on their birthday, with that charity then receiving £50. FFES became the preferred charity for nominations, and thus received monthly payments from the company.
Gabrielle Silver is the chief executive of Bioscript. She said: “Bioscript has gained so much from supporting FFES over the past year. We heard first hand how our contribution had made a difference in improving both the home environment and activities in which the residents participate.
BBC article“We felt so connected to the work of FFES through the individual stories and insights that were shared. We were also able to place additional purpose around the work of Bioscript in terms of supporting pharmaceutical developments, knowing that our endeavours could ultimately help those suffering from epilepsy. We wish FFES the very best in their efforts to help all those impacted by the condition.”
Nicola Davies, chair of FFES, said: “The support we have received from Bioscript has been incredible. All the money we receive enhances the quality of life of people supported by the Epilepsy Society, and those who care for them. We would simply like to thank each and every employee of Bioscript for their support.”
2nd January 2025
Epilepsy Society holds 74th AGM
The 74th Annual General Meeting (AGM) of the Epilepsy Society took place in mid-December. This is an important meeting, as it’s where the charity’s accounts are officially approved, and new Trustees are voted on by voting members, a category of membership which until recently anyone who supports the objects of the charity can apply to become. There are believed to be around 100 voting members of the Epilepsy Society. Around 10 attended the AGM.
Chair of Trustees Kate Alcock gave a brief address to the meeting, highlighting some of the charity’s achievements in the year in question. The Annual Accounts for the year ending 31st March 2024 were then adopted.
Total income for the year was £18.7 million, with expenditure of £20.2 million. Income from care services grew significantly, from £12.2 million to £13.3 million, or 71% of the charity’s entire income. The charity has made good progress reducing its pension fund deficit, but this still accounts for a considerable cost every year, as does the cost of the ongoing planning application.
BBC articleTwo new Trustees were confirmed in post, and we wish Sarah Miller and Penny Owen well, and look forward to meeting them. Deborah Wheeler, who many will remember worked tirelessly in her years as a Trustee, especially during the pandemic years, stepped down. All Trustees give their time and expertise voluntarily, and are responsible for defining the overall strategy of the charity.
A number of FFES members are voting members of the Epilepsy Society, having either been invited to join, or applying to join, over the years. It is a cause for concern that new applications have been frozen, with a governance review unlike to report on its findings until next summer, according to the new Company Secretary, Anthony Lumley.
10th December 2024
Professor Ley Sander provides FFES update
Professor Ley Sander is considered to be one of the world’s leading experts on both the diagnosis and treatment of epilepsy. He holds senior positions in various institutions around the world, and has been medical director of the Epilepsy Society since 2012. He is also an elite public speaker.
He has spoken regularly at FFES meetings over the years, which has given us privileged access to the latest trends in epilepsy treatment. Thus we were honoured to welcome Ley to our recent meeting, held online on a Saturday morning. We are immensely grateful to the Professor for his time and his commitment to making life better for people with epilepsy all over the world.
One of Professor Sander’s key messages over the years has been one of realism. He admits that our understanding of the mechanics of the brain and the central nervous system, whilst evolving rapidly, is still in its infancy. There is so much that we do not know about epilepsy, which makes it so frustrating for us all, and such a damaging condition for our loved ones. Epilepsy Society is an important participant in the world of genomics, and the hope is that understanding the genes that may cause seizures will help to lead to better, more personalised treatment plans. As many as 1000 genes may contribute to the causes of epilepsy, once again highlighting the complexity of the medical condition.
BBC articleProfessor Sander also highlighted the need for epilepsy treatment to consider the whole person. Treating seizures is one thing. There are over 30 different treatments available, but we all know there is not a single ‘magic bullet’ treatment that will work for everyone. It is, to some degree, a question of informed trial and error. But best practice dictates looking at what else is going on within each individual. Flu, for example, can be a major trigger for seizures. So too can tiredness, over-excitement, and constipation, to name but a few triggers.
Of course our loved ones who are supported by Epilepsy Society tend to be those with the hardest to treat forms of the condition. We support the charity’s work researching the causes and treatment of the condition, and remain eternally grateful to Professor Sander and his colleagues for their discoveries and accomplishments, and their continued endeavours.
(This short report has been provided by the FFES Trustees. Any errors are our own responsibility, and not those of Professor Sander)
19th November 2024
Lorna Soesman joins FFES Trustee Group
Lorna Soesman has joined the group of volunteers who are Trustees of the Families and Friends of the Epilepsy Society (FFES) charity. Her son Nick lives in Queen Elizabeth House. Lorna has worked in several local authorities as a Children and Families social worker and manager. After retiring in 2016 she enjoyed using the experience and knowledge she had gained over the years, working as a sessional advisor with the Family Rights Group.
The FFES Trustees are responsible for ensuring that our charity adheres to the very clear standards of operation described by the Charity Commission, which regulates all charities. We send a written report to the Commission every year, as well as submitting details of our finances. Any member of FFES is very welcome to volunteer as a Trustee of the charity, as there is plenty of work for all of us to do.
BBC article
24 June 2024
A new and extraordinary treatment
News of an extraordinary treatment for people with Lennox-Gastaut syndrome, which is one of the most severe epilepsy syndromes, was carried by the BBC and other news outlets today. At the moment the neurostimulator technology is rare, but the news article reveals it has made an extraordinary difference to the life of the 13 year old boy who is benefitting from the device. The Picostim neurotransmitter is made by UK company Amber Therapeutics.
BBC article
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