THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements Year Ended 31 July 2024 Registered charity number: 311877 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Contents Message from the Chair Chief Executive's review We are Young Epilepsy Our impact io Voice and Support 13 Health and Research 19 Specialist Education Fundraising 25 33 Administrative Details 40 Structure, Governance and Management 42 Financial review Income and expenditure 43 Reserves 43 Funding 44 Risks 45 Going concern Executives, pay increases Statement of Trustees, responsibilities Independent Auditor's Report Financial Statements 46 46 47 48 Statement of Financial Activities 53 Balance Sheet 54 Statement of Cash Flows 55 Notes to the Financial Statements 56 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Message frorn Markus H Ruetimann, Chair, Board of Trustees 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 Group, 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 St Pierfs 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. A5 we near the end of the current five-yearstrategic plan, it is refreshing to see howthe 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 with epilepsy 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 thi5 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 Epilepsythe employer of choice by winning awards and gaining important accreditations. Our staff engagement surveys confirm that our culture, teamwork and employment policie5 have the desired positive effects. THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 I would like to thank our Executive Leadership Team, every employee in this wonderful organisation, and my fellow Trustees fortheir5UPPOrt throughout the year. This year saw several trustees leaving u5 and new Trustees taking up the helm. Our sincere thanks go to Vivienne Dews, Keith Cameron, Dr. Julia Coop (who remain5 as a Governor), Claire Wood-Hill, Nick Bell, Katie Stevens, and Young Trustee Annie Davidson. l am delighted to welcome in our new Trustee5 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 team5 to help children and young people to overcome the challenges of epilepsy so that they can reach their potential. rtfelt t anks go t ou all. Markus H Ruetimann hair, Board of Trustees THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 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 slze and influence of our fantastic Youth Volce Network ("YVN"), innovation in our research partnerships. and by increasing the national reach and impart of our support and information services, as well as our campaigning work for chlldren and young people with epilepsy. We continue to work with the NHS, educatlon 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, 1 continued to co-chair the NHS England Epilepsy Oversight Group {EOGI. 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 reason5 to be Optimistic. As evidenced in the Epilepsy12 2024 report, published in July, the NHS bundle of care comes in addition to improved access to paediatricians with expertise in epilepsy and epilepsy specialist nurse5, a5 well as improvements in care planning and Individual Healthcare Plans in schools. However, too many children ￿711 wait too long for the right diagnostic tests and expert clinical 5UPPOrt or care. In particular, mental health assessments for young people with epilepsy are still far from being available as widely a5 they should, despite the higher prevalence of mental health issues and strong feedback from young people on this lack of support. Our growing Youth Voice Network continues to work c105ely with the EOG and has been involved in the co-design of important pilotsfor mental health assessment in epilepsyservices- putttng their voices and lived experience right at the heart of the decision-making. In Spring 2024, 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 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Chief Executive's review continued campaign calls on teachers and the Department for Education to make sure all children with epilepsy have an Individual Healthcare Plan in school. St Plers special education campus in Lingfield, Surrey, has had a hugely successful year. Between the summer of 2023 and early Sprin8 2024, we had three Otsted inspections with one Outstanding and two strong Good result5 across our College and Residential Special School. The Outstanding rating of St Pier5 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 which opened at the end of 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 c105er to reality, with site works anticipated before the end of 2025. We have exchanged and completed contract5 With our development partners, Audley Group. Our Research partnership work continued to grow under the leadership of Professor Helen Cross, Prince of Wales's Chair of Childhood Epilepsy, in partnership with Greatormond Street Charity and the UCLGreat 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 IERIUK) 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 Lord5 as Baroness Ramsey of Wall Heath and thank her for her strong and continued 5UPPOrt 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 Tn Young Epilepsy's capacity a5 a founding partner of the Institute, which aims to raise the profile of, and i vestment into, epilepsy research. Mark Devlin Chief Executive THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 We are Young Epilepsy Epilepsy can be one of the most frightening and isolating conditions a young person can experience; the loss of any sense of safety. Ilvlng in an unpredictable world and not knowlng when their next seizure will happen. Around 100,000 children and young people aged 25 and under have epilepsy in the UK. For them, life can be very different from that of other young people around them. It can take its toll on their physical and mental health, as well as impacting their education and social life. Many children with epilepsy are missing out. We can change that and create a society in which all children and young people with epilepsy can thrive and live happy, fulfilled lives. Our vision Together, we can create a society where children and young people with epilepsy are heard and can live happy, fulfilled lives. Our values Young people at the centre of everything we do We work together to make a greater difference We are courageous and ambitious for change Our programmes Our programmes aim to create a society where children and young people with epilepsy are heard and can live happy fulfilled lives. THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 We are Youn continued Voice and Support Children with epilepsy have a right to be heard. We stand with them. With children and young people at the centre of all we do, we are pushing the boundaries to ensure the voices of children and young people with epilepsy are heard, their voices respected and their ambitions realised. We provide trusted, reliable and accessible information about living with epilepsy. We work holistically with children and young people with epilepsy, their families, health and social care teams, and their school or college, to create a supportive environment for them to thrive and reach their potential. Health and Research Children's epllepsies can be complex and the condition is often mlsunderstood. We deliver cutting*dge health services and coordinate vital research needed to ensure early and accurate dlagnosis, better treatments and better support for living with the condition. Our Health Centre in Surrey offers diagnostic and assessment services for children with epilepsy and other neurological conditions. Set in beautiful grounds and with modern, comfortable and accessible facilities, we support children, young people and their families in a 'home from home, environment. Childhood epilepsy needs more research. Only by understanding the condition can we help secure the best outcomes for the child. Our work is shaped by the views of children and young people with epilepsy and by working collaboratively with our world-leading clinical research partnership. Specialist Education Every young person should have opportunitles to develop their skillsi galn new knowledge and get the most out of their education in an incluslve and positive envlronment, no matter what their learnin& health or medical needs. St Piers 15 our innovative and creative Special Residential School and College for children and young people with special educational needs and disabilities. Our approach is simple: we believe learning is about so much THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 We are Youn continued more than classroom study. It is a nurturingjourney of discovery in which students grow as individuals, find their independence and explore their capacity to live their lives to the full. Our people In July 2024, we had 573 staff across the organisation, with 443 working for St Piers and 130 for Young Epilepsy. Our equity, diversity and inclusion (EDI) focus continued through the year. The SHINE team has grown to 12 members and we launched the SHINE newsletter, of which five editions have now been published. We moved the SHINE Hub to the Intranet, adding more content and redesigning it to make it more accessible. We created a SHINE 'calendar of event5,, which includes Mental Health Awarene55 Week, Time to Talk Day, LGBTQ+ History Month, Stress Awareness Month and Pride. We launched our LGBTQ+ Employee Network and commenced menopause in the workplace training, with 31 managers now trained. We won the Best Engagement Approach Award at the industry-recognised 2024 Menopause Friendly Employer Awards. We also opened a contemplation/multi-faith space on the Lingfield campus. In September 2022, at Young Epilepsy, we introduced Employer Net Promoter Score leNPS), which is a way of measuring of how happy employees are at work. It asks one simple question: How would you rate your happiness at work? We've asked that question three times per year since and are proud to report that our scores have increased from 40 (155 responses) to +18 {290 responses), giving a clear indication that more staff are responding and are feeling happier at work. THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Our impact Voice and Support Youth Voice Network 166 members +69% year on year 16,163 signatures for our petition calling for every child with epilepsy to have an Individual Healthcare Plan for school so they get the support they need. Young people and families we've directly supported through the year 468 children and young people with epilepsy, and their families, through our support service5 93% of young people feel more positive because of the help they have received, including: 96 who had 1-2-1 support 65 at face-to-face meetups 29 at virtual support groups 76 at Virtual Youth Clubs 145 signposted elsewhere for support 15.000 Vislts to the Online Guide for Schools 700 people engaged In our e-learning 90% of those completed feedback, saying their knowledge and understanding of epilepsy and their conf5dence in supporting a child with epilepsy had increased 10 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Our Im art continued Health and Research 420 diagnostic sessions 93 patient carer feedback score- surpassin8 exemplary benchmark of 58 45 active research projects 830+ attendees at events and webinars Specialist Education 85 School students 90.5% attendance 102 College students 94% attendance Community Facebook 23,401 followers +6% increase year on year Instagram 11,284 followers +28.7% increase year on year TikTok 1282 +187% increase year on year 17,937 Supporters with email opt in +69% increase year-on-year THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Our Im act continued People 85% of our workforce +12months of seniice 17Yo of our workforce is made up of people of the global majority Brand profile Since relaunching the Young Epilepsy brand and establishing a PR function, our profile-raising focus has yielded strong results. We worked with the BBC to produce a short film to be aired on The One Show. Our priority for this exposure was to spotlight on a national stage three young people's experience5 as part of the #UnderstandMyEpilepsy campaign. In year two of our relationship with the Carfest Festival we leveraged the connection to support Purple Day efforts, pulling in coverage and generating social buzz. Aligning Carfest's Do More Good Week to ensure Young Epilepsy was mentioned on Purple Day saw us get coverage on their social media channels and on the Virgin Radio breakfast show. Plus, we also achieved a collaborative social media post with Chris Evans. We also saw significant growth as part of our relationship building with ex-premier league footballer, Jay Bothroyd. An interview we arranged for him last year, published in the Mailonline, was picked up by other significant regional titles. 12 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Voice and Support In 202312024, we reshaped the Voice and Support team to strengthen our product offer and services in this area. The team now comprises two pillars: Woi¢ei policy and Influencing, and 'Support and inclusion,. With input from the YVN, we developed a Theory of Change to support our Voice and Support ambition. This 15 helping us to streamline and focus our work. so that the outcomes for children and young people with epilepsy are improved in three key areas: Feeling more informed and confident Improved emotional wellbein8 Feeling more included in learning and play Support and incluslon Our Virtual Youth Clubs started in November 2023 and have been a huge success. We have connected 76 young people to others with epilepsy from all over the UK. We run two monthly groups, one for those aged l(F12 and another for those aged 13+. The Virtual Youth Clubs are designed to help build self-esteem and confidence, and create a space where young people can grow, learn and shine. Attendees have said that the Virtual Youth Clubs give them an improved sense of community and help them to feel their epilepsy is understood. We've improved the wayyoung people can access our support this year. Injanuary 2024, we introduced a digital referral process on our website, making referrals accessible for young people and parents, as well as professionals. We saw 3 50Yo increase in the number of referrals coming through in six months compared to the same period in 2023. In total, our support services have directly supported 468 children and young people with epilepsy, and their families. We also introduced a new case management system to help us track and manage our services. It enables us to identify areas we should focus on, where additional 5UPPOrt may be needed. The system links with our assessment tool, which measures the impact of the support being delivered. Of the young people who used the system, 93% reported feeling more positive because of the help they received. 13 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Voice and Su ort continued We're building on our partnership working to increase the awareness and reach of our services across England. We ran five family meetup events in different regions and attended the Epilepsy Specialist Nurse Association conference. Our pilot of the digital self-management tool, My Epilepsy, came to an end this year. Taking what we learned from this project, we partnered with finy Medical Apps to develop an epilepsy section within their Digital Health Passport App. Our role in the collaboration was to include young people living with epilepsy and their families in the co-design of the app. We recruited young people for 12 workshops with 88 participants, comprising 49 young people, 34 parents and 5 care workers. Our online resource, a Guide for Schools, is still sUPPOrting teachers across the country. It was acce55ed more than 15,000 times. More than 700 people have engaged in our two eLearning courses for education professionals this year. Of those completing the feedback section, 90% said their knowledge and understsnding around epilepsy had increased since doing the training. The same number also said they also felt more confident about 5UPPOrting young people with epilepsy. Voice, policy and influencing In October, we launched our #UnderstandMyEpilepsy campaign, standing shoulder to shoulder with young people living with epilepsy across the UK to tackle the issue of inclusion. We know children and young people are often unnecessarily excluded from events in their life, through a lack of understanding of their condition. The campaign highlighted the shocking fact that one in three children with epilepsy are not getting the support they need to parkncipate fully at school. Seizures are missed or mistaken for 'not paying attention,, school staff don't know what to do when a seizure happens, and children are unnecessarily excluded from learning, sports and trips. 14 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Volce and Su ort continued So, we launched a petition calling for every child with epilepsy to have an Individual Healthcare Plan for school so they get the support they need. The campaign attracted 16,163 si8natures from acr055 the UK. At Young Epilepsy we are committed to producing high-quality health information. This means providing health information that is based on the latest evidence, involves and meets the need5 of children and young people with epilepsy, and is accessible and easy to understand. As part of our commitment, we set the goal to attain the Patient Information Forum {PIF) TICK accreditation and were successfully cerknfied under the scheme in May 2024. In the context of the approaching general election in 2024, we supported the Children at the Table campaign alongside colleagues in the children's sector, asking the future UK government to". Make sure politicians across government work together to improve the Itves of babies, children and young people Put children's needs and voices at the heart of decision-making Invest more of the nation's wealth in babies, children and young people International Youth Summit, Dublin In September 2023, six YVN members attended the first Youth Summit at the 35th International Epilepsy Congress in Dublin. They met with 30 young people from more than 10 countries, which led to a report highlighting a range of experiences coverin8 mental health, stigma, employment and self-care. Bundle of care implementation In October 2023, NHS England launched the national bundle of care forchildren and young people with epilepsy, with recommendations influenced by members of the YVN. The bundle highlights their lived experiences through direct quotes. Throughout the year, we have worked regionally to ensure young people's voices are central to the implementation of these recommendations. Here are some ways the YVN has contributed: 15 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Voice and Su ort continued Resource co-production: YVN members worked to develop informational resources on a range of topics. Service design influencing: YVN members met with a range of NHS professionals at a regional level to share their experiences and views. Collaboration with the Associatlon of Young People's Health (AYPH): In October 2023, in partnership with AYPH. the Understanding the experiences of young people with epilepsy from communities that experience marginalisation report was released. It includes YVN members, shared experiences and sets out children and young people's recommendations for improving care, education and support. Acceptan￿ and Commitment Therapy (Acf) co-production: ACT is a therapeutic intervention for mental health support. We are working with NHSE in the Southwest of England to co-create group resources foryoung people with epilepsy facing mental health challenges. We are evaluating the impact of the intervention with the hope of testing this new model and seeing it replicated across other NHS regions. As part of the ACT Mental Health Project, YVN members have co-produced systems, resource5 and therapeutic se55ions. They have also produced and starred in a series of short films sharing their experiences, which will be shown during the therapy sessions. Young Epilepsy Loud in London (YELL): With funding from The City Bridge Foundation, we've launched YELL, a new project aimed at improving confidence, leadership and communication skills in young people with epilepsy living in London. The project also seeks to influence healthcare and education leaders in the city to improve the experiences of young people with epilepsy. FLARE: We've continued our involvement in the Council for Disabled Children and the Department for Education's FLARE project. By sharing the views and experience5 of YVN members with the Department for Education and other organi5ations, FLARE aims to help them understand how young people want to receive the education and support they need. Hear By Rights Flagship Status: The National Youth Agency's Hear by Right accreditation scheme the award, which we received last year, recognises best praciice and supports organisation5 to plan, develop and evaluate their participation prdctices and provision. Inspired by Article 12 from the United Nations Convention on the Rights of the Child, the scheme fosters a culture of development, a continual journey that keeps young people at the heart of decision-making. 16 THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2024 Voice and Su ort continued Looking ahead In 2025, we will be developing a monitoring and evaluation framework, based on our Theory of Change and in support of our Outcome Goals. This will help us to better understand and report on our reach, impact and improved outcomes for the young people we support. Through the voice of children and young people with epilepsy. we raise awareness of the issues they face and develop support for them and their immediate support network.. helping them to live ambitious and fulfilled lives. hal wc do". How we do il. Our desiied OuSCOfne5-, Our de5iled irnpa