Young Epilepsy's annual review looks at the range of work we have carried out over the course of the year. It explains how donations, contracts and fundraising activities have helped pay for our services.
Message from Chair, Board of Trustees
Markus H Ruetimann
The year ending July 2024 saw the beginnings of growth and recovery, after four tumultuous years during and after the pandemic. Our financial position has been strengthened with the land sale to Audley Villages, the final proceeds from which are to be received in two instalments in the coming financial year, the first of which has been received prior to the approval of these financial statements.
The increase in student numbers in St Piers School has been most encouraging. We were also delighted when Ofsted rated the St Pier’s College ‘Outstanding’ after its inspection earlier this year, following on from the ‘Good’ rating for the St Piers School last year. Our fundraising is growing and enabling us to continue to expand Young Epilepsy’s national reach, including promoting young people’s voice, support and our research partnerships. As we near the end of the current five-year strategic plan, it is refreshing to see how the charity has evolved, grown and adapted, proving its resilience and sustainability. Of course, there is still much to do, and in early 2025 we will set out a new strategic plan for 2025–30.
We continue to ensure the voices of children and young people withepilepsy are at the heart of all we do. Through the Youth Voice Network across the UK, we are seeing young people’s influence grow, shaping our policies and those of national institutions with whom we work, such as the NHS or the Education sector. Our petition this year #UndertsandMyEpilespy attracted over 16,000 signatures and amplified the concerns many young people feel about being excluded in school because of their epilepsy.
Partnership working continues to enable us to excel and we have collaborated across the charity, research, health, technology, education and academic sectors, ensuring paediatric epilepsy is top of the agenda so that system change can happen.
It has been heartening to see staff recruitment and retention stabilise, especially in the education and care workforce this year, enabling us to accommodate more students. We strive to make Young Epilepsy the employer of choice by winning awards and gaining important accreditations. Our staff engagement surveys confirm that our culture, teamwork and employment policies have the desired positive effects.
I would like to thank our Executive Leadership Team, every employee in this wonderful organisation, and my fellow Trustees for their support throughout the year. This year saw several trustees leaving us and new Trustees taking up the helm. Our sincere thanks go to Vivienne Dews, Keith Cameron, Dr. Julia Coop (who remains as a Governor), Claire Wood-Hill, Nick Bell, Katie Stevens, and Young Trustee Annie Davidson. I am delighted to welcome in our new Trustees Tom Hadley, Ash Tailor, Paola Morris, David Pierpoint, Maria Rodrigues and Tanya Moran. We are all looking forward to benefiting from the experience, insights and expertise over many years to come.
Our special thanks go to our former Chair, Jane Ramsey, and to Simon Neville who was acting Chair until my arrival on 8 November 2024. None of our achievements could have been possible without the support of our partners, funders, supporters, service users, students and their families. This enables our wonderful teams to help children and young people to overcome the challenges of epilepsy so that they can reach their potential.
Our heartfelt thanks go to you all.
Chief Executive’s review
Mark Devlin
The year showed Young Epilepsy further accelerating progress in our Voice and Support strategy. This has been achieved through growth in the size and influence of our fantastic Youth Voice Network (YVN), innovation in our research partnerships, and by increasing the national reach and impact of our support and information services, as well as our campaigning work for children and young people with epilepsy.
We continue to work with NHS, education and charity partners to make sure that epilepsy does not become a barrier to children and young people having access to the support they need and to being fully included in society. The inclusion of epilepsy in NHS England’s Core20PLUS5 children’s health inequalities framework, as one of the five key childhood health conditions, is an important breakthrough in recognising epilepsy alongside other serious, chronic childhood conditions. We also collaborated with the Association for Young People’s Health on an illuminating report into the experiences of young people with epilepsy from communities that experience marginalisation. During 2023–24, I continued to co-chair the NHS England Epilepsy Oversight Group (EOG). It was great to see the four key priority areas included in a new NHS bundle of care for childhood epilepsy, which was published by NHS England in November 2023. There are also other reasons to be optimistic. As evidenced in the Epilepsy12 2024 audit report, published in July, the NHS bundle of care comes in addition to improved access to paediatricians with expertise in epilepsy and epilepsy specialist nurses, as well as improvements in care planning and Individual Healthcare Plans in schools.
However, too many children still wait too long for the right diagnostic tests and expert clinical support or care. In particular, mental health assessments for young people with epilepsy are still far from being available as widely as they should, despite the higher prevalence of mental The year showed Young Epilepsy further accelerating progress in our Voice and Support strategy. This has been achieved through growth in the size and influence of our fantastic Youth Voice Network (YVN), innovation in our research partnerships, and by increasing the national reach and impact of our support and information services, as well as our campaigning work for children and young people with epilepsy. health issues and strong feedback from young people on this lack of support. Our growing Youth Voice Network continues to work closely with the EOG and has been involved in the co-design of important pilots for mental health assessment in epilepsy services – putting their voices and lived experience right at the heart of the decisionmaking.
In Spring 24, we launched a petition called #UndertsandMyEpilepsy with the aim of drawing attention to the need for Individual Healthcare Plans for every child with epilepsy. We gathered 16,163 signatures and have delivered the petition to the Secretary of State and Ministers for Education in each of the four UK nations. The campaign calls on teachers and the Department for Education to make sure all children with epilepsy have an Individual Healthcare Plan in school.
St Piers special education campus in Lingfield, Surrey, has had a hugely successful year. Between the summer of 2023 and early Spring 20024, we had three Ofsted inspections with one Outstanding and two strong Good results across our College and Residential Special School. The Outstanding rating of St Piers Special Further Education College makes it one of only a handful of such highly rated settings for young people with special educational needs in the UK.
This year also saw our first pre-school intake at St Piers. Building work is well underway to develop a purpose-built facility to open in later 2024. This development, coupled with the growing reputation of St Piers, has led to record numbers of admissions for the coming year. Our long-awaited site development plans move closer to reality, with site works anticipated before the end of 2024. We have exchanged contracts with our development partners, Audley Group.
Our Research partnership work continued to grow under the leadership of Professor Helen Cross, Prince of Wales’ Chair of Childhood Epilepsy, in partnership with Great Ormond Street Charity and the UCL Great Ormond Street Institute of Child Health. We held the 14th annual Research Retreat in January and a joint research symposium with the newly established Epilepsy Research Institute UK (ERIUK) at the Francis Crick Institute in May. Young Epilepsy is one of four founding partner charities in the creation of ERIUK.
This year we said goodbye to our Chair, Jane Ramsey, who has led the Board of Trustees for the last eight years. We congratulate her for her elevation to the House of Lords as Baroness Ramsey of Wall Heath and thank her for her strong and continued support for children and young people with epilepsy.
We also said goodbye to Rosemarie Pardington, Director of Health and Research/Deputy CEO after seven years in post. Rosemarie has become the CEO of ERIUK. We wish her and the new Institute well and look forward to working with colleagues in Young Epilepsy’s capacity as a founding partner of the Institute, which aims to raise the profile of, and investment into, epilepsy research.
