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2023-07-31-accounts

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY

CHARITABLE TRUST

Report and Financial Statements

Year Ended 31 July 2023

Registered charity number: 311877

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Contents
Page
Message from the Chair ............................................................................................................................... 03
Chief Executive’s review .............................................................................................................................. 04
We are Young Epilepsy ................................................................................................................................. 06
Our impact ................................................................................................................................................... 08
Voice and Support ........................................................................................................................................ 09
Health and Research .................................................................................................................................... 13
Specialist Education ..................................................................................................................................... 16
Fundraising ................................................................................................................................................... 21
Administrative Details ................................................................................................................................. 26
Structure, Governance and Management ................................................................................................... 28
Finance Review
 Income and expenditure ....................................................................................................... 29
 Reserves….............................................................................................................................29
 Funding................................................................................................................................. 30
 Risks…...................................................................................................................................30
 Going concern......................................................................................................................31
 Executive pay increases ....................................................................................................... 31
Statement of Trustee responsibilities….......................................................................................................32
Independent Auditor’s Report.....................................................................................................................33
Financial Statements
 Consolidated Statement of Financial Activities…................................................................37

Consolidated Balance Sheet ................................................................................................ 38
 Charity Balance Sheet .......................................................................................................... 39
 Consolidated Statement of Cash Flows ............................................................................... 40
 Notes to the Financial Statements ...................................................................................... 41

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Message from the Chair

Jane Ramsey

The year ending July 2023 saw our impact and influence grow, to continue to improve the lives of children and young people with epilepsy across the UK. Led by our values, we continue to ensure young people’s voices are at the heart of all we do. We were delighted to achieve Flagship status with the National Youth Agency’s Hear By Right accreditation scheme. This reflected our commitment to integrate young people’s voices and views throughout our governance systems up to and including our Board of Trustees. Our Youth Voice Network is now truly UK wide and growing rapidly.

The Young Epilepsy and St Piers brand development continued, and we were delighted to see the successful launch in the year of both new St Piers and Young Epilepsy websites. The distinction between the two brands has been instrumental in improving understanding of our different offers as a national charity, while not diluting the impact of either brand.

In May, we were pleased to join Epilepsy Research UK and partners to co-host a symposium in The Francis Crick Institute in London to share publicly the agreed top 10 priorities for epilepsy research. The event was an opportunity to announce our founding partner membership of the newly formed Epilepsy Research Institute, UK. Together, we hope this will attract more much-needed research into the causes and treatments of epilepsy. Young Epilepsy will sponsor the neuro-development theme, one of the new Institute’s four research areas.

As we celebrated our 125th year of the charity’s presence on St Piers campus in Lingfield, we were delighted at the positive response to our joint planning application with Audley Villages to redevelop and enhance the St Piers estate. We were awarded planning permission in May 2023 and look forward to starting works on the estate during 2024. The sale of land and the opportunity to extend the St Piers college buildings will mean a sustainable future for the charity’s future on the site, as well as making the campus a more attractive and bio-diverse place to live, work and learn.

None of our achievements could have been possible without the support of our partners, funders, supporters, service users, students and their families. Our heartfelt thanks go to them all. We are especially grateful to have the support of the National Lottery Community Fund, the GE Neville Foundation, the Bernard Lewis Foundation, and Innovate UK, which enables us to fund cutting-edge research and deliver vital services for young people across the UK.

Finally, I wish to thank my fellow Trustees for their support throughout the year. We said goodbye to our Young Trustee Renell Mckenzie-Lyle, whose contribution was much appreciated. We wish him all the best in his future career. We also welcomed our new Young Trustee, Annie Davidson onto the board.

Jane Ramsey

Chair of Trustees

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Chief Executive’s review

Mark Devlin

The year saw us continuing to make steady progress in our strategy, increasing our reach and impact for children and young people with epilepsy. We achieved this through raising awareness, influencing decision-makers and sponsoring innovation.

The challenges facing young people with epilepsy were intensified during the year’s cost-of-living crisis, which saw everyone’s bills increase and poverty gaps widen. Epilepsy is more prevalent in deprived communities, the very places where children face more barriers to accessing the right care. We continued working with NHS and education partners to find ways to make sure that epilepsy does not become a barrier to children and young people having access to the support they need and being fully included in society.

An important step was having epilepsy included in the NHS’s CORE20PLUS5, which aims to reduce health inequalities at both national and system levels. The approach defines a target population group – the most deprived 20% – and identifies five clinical areas to focus on to speed up improvement. One of these areas is now epilepsy.

During 2022–23, I was delighted to co-chair the NHS England Epilepsy Oversight Group (EOG), with the National Clinical Director for Children and Young People, Professor Simon Kenny. The Group brings together professionals and young people from across the country and is supported by the NHSE Children and Young People’s Transformation Programme.

Having successfully delivered Young Epilepsy’s #OnTopOfEpilepsy campaign in 2022, calling for improved mental health screening and support in epilepsy care, we made sure that mental health support was one of the four key priority areas to be included in a new NHS bundle of care for childhood epilepsy published this autumn. This is in addition to addressing variation in care, e.g. improved access to epilepsy specialist nurses and information on SUDEP (Sudden Unexpected Death in Epilepsy); improving referrals to tertiary care and epilepsy surgery; and improving transition from paediatric to adult services. Many members of our Youth Voice Network were involved in the work of the EOG at national and regional level, putting their voices and priorities right at the heart of the decision-making.

In February 2023, we published the results of our survey of young people with epilepsy’s experience in school. The survey results showed that still too many young people are still missing out in education. Through the year we have been developing our online schools training offer and resources for teachers. In Autumn 2023, we launched a campaign manifesto to improve inclusion in school for children and young people with epilepsy. The campaign calls on teachers and the Department for Education to make sure all children with epilepsy have an individual healthcare plan in school.

Despite a year of significant progress on several fronts, it was a very challenging year for our finances. The year’s out-turn was somewhat worse than expected. The deterioration was largely due to ongoing income loss in health services and, given the challenging economic context, lower than expected year-end fundraising income and additional overhead costs, including utilities.

Our innovative optically pumped magnetoencephalography (OPM-MEG) brain scanner continues to lead the country in ground-breaking research into epilepsy diagnosis and treatment. With a grant from Innovate UK,

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Chief Executive’s review (continued)

we appointed a Research Fellow to continue developing this new technology to secure medical device approval in the future. We have now begun clinical trials using OPM-MEG with children and young people with epilepsy.

We had many occasions to celebrate and come together in the year, bringing together staff, supporters, donors, students and their parents. We celebrated Purple Day in March, raising over £20,000, and St Piers School and College enthusiastically celebrated the King’s Coronation in May. Our inclusion and diversity work has really gained momentum this year with a newly formed ’Shine’ team delivering information, news and advice to the organisation. Also, we’re proud to have achieved Disability Confident Leader status in August. We were especially pleased to have a walking group in London Pride in July and celebrate Pride with staff and students at St Piers. The College hosted the National Association of Specialist Colleges (Natspec) student parliament, a lively and interactive event.

The year saw a change of leadership of St Piers School and College with the interim appointment of Jeremy Law, followed by the permanent appointment of Simone Hopkins as Executive Principal. We were delighted to achieve Good Ofsted ratings for both St Piers School and our children’s residential provision.

My thanks to all our staff for their hard work and dedication this year, as always. Huge thanks also to all the young people with whom we work, and your parents/care givers for your support. We could not do any of it without you.

Mark Devlin

Chief Executive

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

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, living in an unpredictable world and not knowing 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 values

Our programmes

Our programmes aim to create a society where children and young people with epilepsy are heard and can live happy fulfilled lives.

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 epilepsies can be complex, and the condition is often misunderstood. We deliver cutting-edge health services and coordinate vital research needed to ensure early and accurate diagnosis, 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 working collaboratively with our world-leading clinical research partnership.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

We are Young Epilepsy (continued)

Specialist education

Every young person should have opportunities to develop their skills, gain new knowledge, and get the most out of their education in an inclusive and positive environment, no matter what their learning, health, or medical needs.

St Piers is 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 more than classroom study. It is a nurturing journey of discovery in which students grow as individuals, find their independence, and explore their capacity to live their lives to the full.

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Our impact

Health and research:

398 Diagnostic sessions

43 active research projects

1,000+ attendees at events and webinars

Voice and Support:

Youth Voice Network 98 = includes 17 Young Reps and 81 Young Supporters

Professionals completing e-learning: 889

Supported 598 children and young people with epilepsy

Visits to Online Guide for Schools: 19,270

St Piers:

School student numbers: 65

College student numbers: 97

School attendance levels: 91%

St Piers Facebook followers: 1071

St Piers Instagram Followers: 412 St Piers TikTok followers: 99

Community

Facebook followers: 22,200. Twitter/X followers: 17,700. Instagram fans: 8,777

TikTok: 472

Supporters with email opt in: 10,628

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Voice and Support

We exist to create a society where children and young people with epilepsy are enabled to thrive and fulfil their potential.

Our Voice and Support offer focuses on the priority needs identified by young people themselves. With young people at the heart of all we do, we aim to:

Voice

Voice encompasses youth participation and information, and our policy and influencing work.

At the end of July, our Youth Voice Network (YVN) had nearly 100 Young Reps and Young Supporters, up by 43 on the previous year The network now has a presence in the four UK nations and all regions in England.

We developed our partnership with the National Youth Agency (NYA), building on our ‘Active’ status with Hear By Right, an organisational youth engagement and participation framework.

We received glowing feedback from the NYA on our evidence for ‘Flagship Status’, which ensures that young people’s voices form the bedrock of our activities and decision-making.

The YVN, which includes 17 Young Reps, was involved in the NHS Epilepsy Oversight Group (EOG), part of NHS England’s Children and Young People’s Transformation Programme. Co-chaired by our CEO Mark Devlin, the EOG helped develop a national bundle of care for children and young people with epilepsy, due to launch in Autumn 2023.

Our successful #OnTopOfEpilepsy campaign called for mental health screening and support to be included in the epilepsy care pathway. The bundle of care recommendations will focus on four priority areas:

The YVN also worked with the Association for Young People’s Health, contributing to their report on experiences of marginalisation by young people with epilepsy. Sessions were held with the YVN and students at St Piers School and College.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Voice and Support (continued)

The YVN also worked with SUDEP Action to develop SUDEP resources and FLARE , the Department for Education’s national young SEND advisory group (supported by the Council for Disabled Children), to inform government policy on disability and special educational needs.

YVN members helped facilitate a joint Research Symposium with Epilepsy Research UK in London in May 2023. Two Young Reps also formed part of the International Bureau for Epilepsy’s Global Youth Summit Steering Group to help shape the agenda for the upcoming International Epilepsy Congress in Dublin in September 2023.

We welcomed the inclusion of epilepsy in NHS England’s Core20PLUS5 framework for children and young people. The framework identifies epilepsy as a priority clinical area for support, improving access and reducing health inequalities for children and young people in the most deprived 20% of the population and other identified groups.

In partnership with the NHS North West region, we delivered a week of healthcare professional training sessions on how poverty affects children with long-term conditions. We also presented at a regional conference on the subject.

In July we shared the latest findings from the Epilepsy12 audit of paediatric epilepsy care. Despite improvements, access still varies depending on where children live. Children with complex epilepsy also struggle to access specialist support, including referrals for surgery.

Together with other epilepsy charities we wrote to the Health Secretary, calling for the Government to consider epilepsy as part of its proposed Major Conditions Strategy.

In collaboration with Epilepsy Action and the Epilepsy Society, we ran the Epilepsy Medications in Pregnancy Survey, asking what medication information girls and women had received, and how this could affect pregnancy planning, now or in the future.

Out of 1,269 responses, over 300 related to children and young people. Early findings were shared with the AllParty Parliamentary Group on Epilepsy and the findings published in March. We found high levels of risk awareness related to valproate use in pregnancy, but much lower levels for other epilepsy medicines.

“I am 23 and have not had anybody speak to me about epilepsy and pregnancy in 16 years of having epilepsy.” - Anonymous survey respondent

The medicines regulator MHRA has announced it will further restrict prescribing valproate. We and other epilepsy organisations have asked for further information on evidence supporting the plans and greater consultation with the epilepsy community.

In March we published the full report from our Epilepsy Support at School survey, which found:

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Voice and Support (continued)

“Today, my daughter’s teachers refused to remove the flashing lights from the Year 6 end of school play, the last one ever for primary school. Yet, they know she has epilepsy and what her triggers are. So, she stayed at home while all her school friends got to perform in front of their parents. They’ll provide a ramp for someone in a wheelchair, so why can't they remove flashing lights so that my daughter can be included and participate? Today was a very sad day. I cried a lot.” - Parent

We participated in the Scottish National Discussion on Education; we highlighted results from the school support survey, calling for children with epilepsy and other long-term conditions to get the support they need to participate fully in school life.

As part of the Special Educational Consortium, we met with Department for Education (DfE) representatives to discuss the Government’s SEND Improvement Plan. We called for the DfE to include the framework of support for children with medical conditions at school in plans for SEND and alternative provision.

We are developing our information management standards so that children and young people get the trusted information they need. We have joined the Patient Information Forum (PIF) and have recruited an Information Manager to help us achieve PIF TICK accreditation.

Support services

The Youth Development and Support team received £375,000 from the National Lottery Reaching Communities Fund. The grant:

In May, we partnered with confidential text support service Shout to improve our support for children and young people with complex mental health challenges, and those who in crisis or needing urgent help.

Children, young people and families living with epilepsy can text ‘PURPLE’ to 85258 for instant support.

“Our child had a diagnosis for a year and a half before I found Young Epilepsy. We felt we weren’t offered any support through the NHS. Since speaking to the youth worker, we as a family feel like we have a lot of support and now know where to turn. Our youth worked has been brilliant with our child, and we are sad to say goodbye to our sessions.” – Parent

Youth support coordinators providing group sessions and meet-ups with young service users.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Voice and Support (continued)

Inclusion

Our online training programme for education professionals received excellent feedback and had 889 total engagements. Our Online Guide for Schools was accessed 19,270 times.

We submitted a funding bid to the Peter Harrison Foundation to develop our Epilepsy Positive Programme for schools in the southeast in 2023–24.

Owen, a member of our YVN, helped pitched the programme:

“It’s important for schools to be trained in the condition before a child is diagnosed. Education professionals need to be able to recognise that a pupil who seems to be daydreaming could be having an absence seizure. When a new student who already has a diagnosis joins them, they should be ready to support them straightaway.’’

Digital epilepsy self-management tool

We launched the My Epilepsy pilot, our epilepsy digital self-management tool, in partnership with Patients Know Best, an electronic patient-held record platform partnered with over 30 NHS Trusts across the country. Using the My Epilepsy self-management tool, information can also be shared with healthcare professionals.

The Channel

In 2023, on its third anniversary, The Channel moved to its new permanent home of Marketing and Communications.

Reflecting on what we have learned, it has become clear that young people prefer to get epilepsy and healthrelated content on social media platforms, not dedicated health websites. Therefore, our next information and content strategy for The Channel will develop its content based on these changing user expectations.

Plans for the Future

The Voice and Support team will be reshaped to strengthen the product offer and services in this area. The team comprises two pillars: ‘Voice, policy and influencing’ and ‘Support and inclusion’. The Youth Voice Network will be grown, aiming to have a membership of over 150 young people by the end of the year.

The second national campaign ‘#UnderstandMyEpilepsy will be promoted. Policies and procedures for improving health information will be developed, aiming to attain the PIF (Patient Information Forum) TICK.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Health and Research

Health

Once again, over the last year, we have continued to work in conjunction with a variety of partners to provide direct health services, training, and advice to improve outcomes for children and young people with epilepsy.

Sadly, during the year, after exploring all possible options, our Trustees took the difficult decision to authorise the closure of the Rehabilitation and Assessment Unit in the Neville Centre. The unit was no longer viable due to a number of factors outside our control, including changing commissioning patterns, the physical (limited) size of the unit and not having NHS status.

It was originally designed as a four-bed rehabilitation unit. Staff worked hard to improve occupancy rates by combining rehabilitation and assessment patients, but because these groups are not always compatible, occupancy remained low, despite the positive outcomes for all those patients who were fortunate to be admitted.

More positively, our diagnostic services continue to go from strength to strength. We have secured additional contracts with a range of partners to increase the number of EEG and telemetry appointments on offer. Over the year, we provided 398 diagnostic appointments.

We continue to develop our optically pumped magnetoencephalography (OPM-MEG) brain scanner in the diagnostic suite. With our research partners, we secured another Innovate grant of £1.7m, of which £284k is earmarked for Young Epilepsy over a period of three years. The money will fund a dedicated Research Fellow to take us to the next stage and secure medical device approval for the OPM-MEG.

Research

Our research programme exists to ensure the best outcome for every child by optimising diagnosis, treatment and support in all aspects of childhood epilepsy.

Led by the Prince of Wales’s Chair of Childhood Epilepsy, Professor Helen Cross, our main research programme is a collaborative partnership with Great Ormond Street Hospital and the UCL Great Ormond Street Institute of Child Health.

Over the past 12 years, the programme has grown from just four principal investigators to 33 Principal Investigators supervising 18 PhD students and 37 international collaborating researchers.

Every project in the programme originates from the identification of clinical needs and feedback from patients. We support investigators to develop these ideas into project plans, obtain necessary funding and assemble expert teams.

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Health and Research (continued)

In the past year, the programme supported 43 research projects working to:

The UK Priority Setting Partnership (PSP) was tasked with investigating the health priorities of people with Epilepsy. A survey, completed by 2,014 individuals, identified approximately 5,418 epilepsy research priorities. From these, 25 were shortlisted for discussion at the UK Epilepsy PSP workshop, at which the top 10 priorities were selected:

Having these clearly defined research priorities allows future research to focus on what matters most to the epilepsy population. Young Epilepsy will carefully consider how our research aligns to these priorities as we develop our research programme.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Health and Research (continued)

Events

In January 2023, our Annual Research Retreat, led by the Prince of Wales’s Chair of Childhood Epilepsy, was our largest to date, with more than 150 leading epilepsy researchers discussing projects and sharing knowledge and ideas. This well-established event helps inspire the next generation of projects.

Throughout the year, we also hosted other research events.

Our first Rare Epilepsies Conference brought together delegates from diverse backgrounds interested in understanding more about rare epilepsies. The conference also allowed delegates to meet representatives from individual rare epilepsy charities.

We also arranged a webinar entitled Epilepsy in Schools, which had nearly 800 attendees. This webinar was born from the ‘What I Need in School’ research project, which asked young people, parents, caregivers, and teachers what they feel children with epilepsy actually need in school.

As part of this webinar, we hosted speakers from our Policy and Advocacy, Youth Development and Support and Health Services teams, and researchers from the Mental Health in Epilepsy (MICE) project. Overall, the event offered many essential insights into how we can better support children with epilepsy in school, and how Young Epilepsy can assist on that journey.

In May, we also co-hosted a Joint Research Event with Epilepsy Research UK at the Francis Crick Institute, in London. With over 150 attendees, the event was a huge success, offering a forum to showcase our joint research programmes.

The event also highlighted the importance of ongoing collaboration between charities, beneficiaries and supporters. It was made all the more special by having attendees with lived experience of epilepsy, including our Young Reps, who helped chair the event, and a mother of a child with epilepsy sharing her experiences.

The event was also the forum for the announcement of the Epilepsy Research Institute UK, of which Young Epilepsy will be a founding partner. The Institute will serve as the central hub for the epilepsy research community and help develop the UK epilepsy research ecosystem, by driving increased research investment, convening, coordinating national and international collaborations, and strengthening the research infrastructure.

Plans for the Future

The assessment and Rehabilitation unit will be closed due to the costs of running this unit. The space will be considered for alternative use and alternative income sources. More home telemetry equipment will be invested in to reduce waiting times and improve services in the diagnostic service. The clinical trial phase of the OPM MEG will begin with first patients expected in Spring 2024. There are plans to set up a potential Autism Assessment service in Lingfield.

The research programme continues to grow, with 45 ongoing projects. The publication of the findings from the mental Health in Childhood Epilepsy (MICE) project is anticipated. The Physical Activity in Childhood Epilepsy (PACE) project will be coming to a conclusion. The organisation will continue to pursue its goals by fostering longstanding partnerships with academia, healthcare and community stakeholders.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Specialist Education

This year, we have been working hard on an innovative strategy, instilled with all aspects of St Piers values, to transform the delivery of Specialist Education at national level. We’re building strong and secure foundations to take us into 2024 and beyond. The journey has already started, and along the way, there will be exciting changes that will shape our 24-hour curriculum offer.

We will strengthen our provision with the medical and therapeutic support that our children and young people need to thrive in a safe, personalised, purposeful and ambitious environment.

All senior School, College and Residential leaders are meeting weekly to develop plans for rapid change. We will work in close partnership with parents, governors, external agencies, the local authority, Ofsted, the Care Quality Commission and external consultants to make sure everyone knows about all our plans and when we have put them into practice.

We are all committed to providing an ‘Outstanding’ service that enables everyone in the St Piers community to feel part of something unique and very special.

“I am thrilled to have been appointed as the Executive Principal of St Piers. It is a real privilege to be working alongside colleagues who ensure children and young people are at the very core of their thinking.” - Simone Hopkins Executive Principal St Piers School and College

St Piers School

Following a ‘Good’ rating from our recent Ofsted inspection, 2022–23 has been a successful year for St Piers School. The leadership team is now established and making strides to improve our provision, in line with our school improvement plan, and feedback from Ofsted.

The School has further developed and embedded its curriculum. We have also opened the St Piers Shop and all students have been enjoying work experience and applying their English and Maths skills.

St Piers has also introduced four new members to the school family, our wonderful therapy donkeys. The donkeys play an important role, supporting students to self-regulate and manage their own behaviours. All students have enjoyed learning about the donkeys and how to care for them. The donkeys joined staff and all students for a celebration of the coronation of King Charles III.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Specialist Education (continued)

St Piers College

At St Piers College, a personal tutor guides each young person through their journey. Personal tutors work with each student to craft an individualised ‘Personal and Social Development’ programme matched to the young person’s aspirations and interests. Each programme incorporates four key areas that help them to prepare for their future:

As students work towards their Education, Health and Care Plan (EHCP) targets, tutors stretch them to achieve the best they can.

Students’ individual learner journey documents set out their personalised curriculum, from personal and social development (PSD) sessions to subject areas. Year by year, these documents provide a detailed record of the skills students have developed in each area of learning. Learner journey documents give a good overview of each student’s learning, progress and achievements.

At the end of the year, we have a formal awards ceremony at a local venue, attended by parents and dignitaries, to celebrate the achievements of every leaver. This is a wonderful way to end the academic year. The rest of the College joins the leavers for a final disco before they embark on their journey into supported adulthood.

Learner Voice

Learner Voice meetings take place every month, allowing students to discuss all aspects of their life at the College, in the company of invited guests from the community and the governing body.

Students help to make decisions about different aspects of College life, such as health and safety concerns, timetable changes and the student ball. They have even interviewed prospective executive principals.

Other national specialist colleges participate in Learner Voice meetings through the Natspec Student Voice Parliament. At St Piers, we were lucky enough to be able to host the National Parliament in May 2023 and are hoping to do so again in 2024.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Specialist Education (continued)

Accredited Learning

There has been a marked increase in the range of accredited units selected to best meet the students’ EHCP targets, intended next destination and future transition plans.

These healthy increases, especially against the Employment and Good Health tags of ‘The Preparing for Adulthood’ (PfA) framework, reflect the PSD model that came fully into effect in 2022–23, along with the changing positive outlook on employment and work skills for all students. This approach has really benefitted St Piers College students.

----- Start of picture text -----
PfA framework: Units completed Units:
Expected
completion
2021–22 2022–23 2023–24
Employment 114 145 135
Independent living 58 79 65
Good health 67 106 80
Community inclusion 62 65 70
----- End of picture text -----

Work experience

The number of students gaining work experience (WEX) has significantly increased, largely due to greater community access. Since the pandemic, local businesses are more willing to offer placements, while students themselves are much more confident about going offsite.

Through work with previous and new employers, we are now seeing a wider range of placements in the community. Work-based learning workshops with tutors have also had a positive impact on students gaining work experience placements.

----- Start of picture text -----
2021–22 2022–23 2023–24
NOR WEX NOR WEX NOR Predicted
WEX
Learning for life 32 35% 32 50% 26 98%
Skills for life 31 71% 40 98% 39 100%
Specialist skills 29 100% 27 98% 32 100%
----- End of picture text -----*

*NOR = number of pupils on roll

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Specialist Education (continued)

Community inclusion and transition

The percentage of students engaging in community activities and work experience is increasing year on year; as is the number of students securing supported living.

The College has a transition lead, being the person who communicates with students, families, personal tutors and new placements to gather information about where students want to go next and offer further support with the next stage of their life.

Year: Community Work Further Supported Achieved
inclusion: placement: study: living: aspirations:
2020–21 70% 0% 16% 31% 70%
2021–22 Covid
2022–23 70% 9% 0% 53% 70%
2023–24 90% 20% 5% 85% 100%
(predicted)

Attendance

Attendance across St Piers is outstanding and sits above the national average for special educational needs education, which is currently 88%. As you can see from the table below, the College has maintained its higher than average % over the past two years. The new curriculum pathways have had a very positive influence on attendance, with students actively showing that they want to learn.

Attendance: 202-–21 2021–22 2022–23 2023–24
NOR* 92 99 97 97
Attendance 79% 88% 94% 96%

*NOR = number of pupils on roll

Black History Month

Students learnt how Rosa Parks’ brave stance made a significant start to improving the rights of black people in society. They learnt about other influential black people and how they, too, have made a difference, which gave students the insight and understanding to appreciate and respect everyone.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Specialist Education (continued)

Plans for the Future

The Executive Principal (EP) is driving positive change to improve quality and outcomes for students. The vision for 2025, ‘Beyond Outstanding’, includes reshaping management structures, introducing quality assurance measures, and changing the school timetable. An Improvement Partner Committee will be established to review plans and strategic direction. The school is striving to become the ‘placement of choice’ for both families and Local Authorities. Plans are in place to open an Infant/reception class for 4 and 5 year-olds by the end of 2024.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Fundraising

We raise funds through appeals, events, relationship management with supporters, individual donors, volunteer fundraisers, corporate partners and high-value funders, trading activity and grant applications.

We manage our fundraising internally without the involvement of commercial participators or professional fundraising agencies.

Accountability for our fundraising activity

We are registered with the Fundraising Regulator and follow their Code of Practice. We publish our Fundraising Promise and complaints policy and procedure on our websites.

We comply with the guidance set out by the Fundraising Regulator, including publishing our charity and contact details on its website.

Monitoring volunteer fundraisers’ activities

We support volunteer fundraisers who raise funds for Young Epilepsy through relationship management and a Service Level Agreement. We monitor their activity through online giving platforms and social media channels and maintain regular contact.

Complaints about our fundraising activity or presence

In the year to 31 July 2023, we received no fundraising complaints about our fundraising activities.

Protecting people in vulnerable circumstances

All Young Epilepsy employees, including Fundraising team members, sign a clear code of conduct. They also receive safeguarding training at induction, with refresher training at appropriate intervals.

We take a rigorous and robust approach to safeguarding, given that children and young people with epilepsy are a particularly vulnerable group. Our Fundraising team follows our approved Child and Adult Protection and Safeguarding Policy, which we review annually.

We have a Fundraising with People in Vulnerable Circumstances Policy, and follow guidance laid out by the Chartered Institute of Fundraising, the Charity Commission and the Fundraising Regulator. The policy, published on our website, is supported by staff training.

Anyone under the age of 16 is recorded on our customer relationship management system and not contacted for marketing purposes unless they are over 13 years and have given consent.

Our fundraising performance

Fundraised income for the year was £1.4m (2022: £1.8m).

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Fundraising (continued)

We spent £0.5m towards fundraising, yielding a 2.2 return on investment. The decrease in income reflects the challenges faced during the year in grant and trust fundraising. While there was a decline in restricted income, this was partially counterbalanced by an upsurge in unrestricted fundraising income, excluding legacies.

There was significant growth in Sport and Challenge Event income, which raised £175K. This demonstrates the benefits of investing in the team and in digital marketing to support regular official runs and virtual fundraising opportunities, including partnering with ‘Run for Charity’ and ‘Action Challenge’.

The new virtual events programme earned over £50K, including the very successful ‘Walk 40 miles in August’, which raised nearly £17K. Two London marathons raised a total of £48,711 from 39 runners. Our huge congratulations to all those who laced up for us, with special thanks to top Marathon fundraiser, Kate Cadbury, who raised £6,482.

Our supporters continue to impress us with their tireless, creative and enthusiastic activities. Our special thanks go to all those who raised funds through their own challenges and events in the year.

In tribute to his grandson, Lochie, David Worcester, on his 70th birthday, cycled over 1,000 miles from Land’s End to John O’Groats, raising £6,149. Joy Wellstead’s son Zach sadly died at the age of 21. His MuchLoved fundraising page has raised a wonderful £20,513 through donations, skydiving and a charity football match.

We held our annual Star Run in October, again sponsored by Wingate Ltd. Signing up for our 5K, 10K and 1K courses, 139 runners raised £5,764. We welcomed news that we were to become a benefitting charity of CarFest 2023, receiving £62,172 from the CarFest Dine and Disco event in June.

Purple Day, 26 March 2023, was our best yet. We developed new school fundraising packs and 116 were downloaded. Supported by a virtual challenge event and a successful marketing campaign, we raised an impressive £24K, a significant increase on previous years. Nearly half of this income was raised through the virtual challenge ‘Run 26 miles in 26 days’. Young supporter Fliss took up the 26 miles in 26 days challenge, raising an impressive £1,200.

Legacy income was £32.7K from four legators, Kathleen Abbott, Colin Hush, June Quehen and Rupert Best. We are now developing a legacy marketing strategy to grow legacy income.

We invested significantly in supporter acquisition this year, using a digital marketing agency to increase our reach through social media and online advertising. We welcomed 2,260 new contactable supporters, bringing our total to 10,628.

Our Grant fundraising income was £180,950 of which £156,500 was restricted income to support our Health and Research and Voice and Support services, as well as projects at St Piers School and College.

In November 2022, we received our biggest grant, £360,000 from the National Lottery Reaching Communities Fund to fund our youth support work over three years. This year, we received the first payments, totalling £123,000.

Income from Corporate partnerships was £294,301, which included teaming up with Geek Retreat stores across England to create an inclusive gaming space for young people with epilepsy.

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Fundraising (continued)

We we’re also delighted to partner with the NHS Southwest Operational Delivery Network to deliver the Acceptance and Commitment Therapy programme pilot and received £114,469 for an 18-month project starting in August 2023.

We also worked with Neuraxpharm to create a series of epilepsy awareness films and partnered with Destin Pharma Ltd to create updated epilepsy medication booklets.

Special thanks go to key individuals and families whose support has helped provide vital services through the year. We are very grateful to the Bernard Lewis Family Charitable Trust, whose regular gifts help fund our Youth Support Work, and to the Neville family, the George E Neville Foundation and Neville UK PLC, for funds supporting our research programme.

We are hugely grateful to all our donors, grant funders and voluntary fundraisers, both first-time supporters and regular donors, for their generous support. You will find acknowledgement of our larger donors and supporters at the end of this report.

Plans for the Future

The strategy to increase and diversify unrestricted income sources will continue. A Legacy giving strategy will be developed, aiming to launch a new legacy giving programme in the autumn of 2024. The marketing and communications team will continue to build more social media followers and attract more traffic to the websites.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Fundraising (continued)

Major donors, funders, and fundraisers 2022-23

Grants, Trusts and Foundations

Anne and John Walters Charitable Trust

Bernard Lewis Family Charitable Trust

Cecil Pilkington Charitable Trust

George E Neville Foundation

ICG Foundation

Michael O'Sullivan Charitable Trust

The Alison Hillman Charitable Trust

The Baily Thomas Charitable Fund

The Barratt Foundation

The National Lottery Community Fund

The Screwfix Foundation

The Wyfold Charitable Trust

Corporates

Carfest Limited

Desitin Pharma Ltd

National Access & Scaffolding Confederation Limited

Neuraxpharm UK Limited

Neville UK PLC

Pacific Support Services Ltd

Thames Valley and Wessex NHS Trust

UCB Pharma Limited

Veriton Pharma Limited

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Fundraising (continued)

Individual Donors and Fundraisers

David Worcester

Kate Cadbury

Laura Cunnane

The Wellstead Family

Nicolas Turner

Peter Gray

Richard Knowles

Simon Arnold

The Peaky Climbers

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Administrative details

Young Epilepsy is the operating name of The National Centre for Young People with Epilepsy Charitable Trust, which is a charity registered with the Charity Commission (registered number 311877). The registered address of Young Epilepsy is Young Epilepsy, St Piers Lane, Lingfield, Surrey, RH7 6PW.

During the year, and in the months following the year-end to publication, the Trustees were as follows:

Jane Ramsey Prof Helen Cross Keith Cameron (resigned 11 February 2024) Vivienne Dews (resigned 11 February 2024) Dr Julia Coop (resigned 11 February 2024) Lesley Steeds Claire Wood-Hill (resigned 13 December 2023) Nicholas Bell (resigned 21 March 2024) Simon Neville Tamsin Jones Dr Amit Bali Katie Stevens David Pierpoint (appointed 2 October 2023) Tom Hadley (appointed 2 October 2023) Paola Morris (appointed 13 November 2023) Ash Tailor (appointed 21 March 2024)

The Board of Trustees is responsible for the governance of Young Epilepsy and ensuring that its activities are within its charitable objectives. It sets the strategic direction, the responsibility for the execution of which is delegated to the executive management of the organisation through the Chief Executive Officer, Mark Devlin.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Administrative details (continued)

The executive management team is made up of:

Mark Devlin Chief Executive Nazar Al-Khalili Director of Finance, IT & Facilities Sally Brighton Director of Fundraising and Development Richard Gargon Principal, St Piers School and College (resigned 31 August 2022) Jeremy Law Interim Executive Principal, St Piers School and College (appointed 1 September 2022, resigned 31 December 2022) Simone Hopkins Executive Principal, St Piers School and College (appointed 1 January 2023) Tim Moore Director of New Business (resigned 30 September 2022) Rosemarie Pardington Director of Integrated Care (resigned 26 January 2024) Sarah Stookes Director of HR

During the year, Young Epilepsy’s bankers and professional advisers were:

Bankers

Lloyds Bank plc Mid Corporates – Education, Charities and Government 3rd Floor 25 Gresham Street London EC2V 7HN

Solicitors

Anthony Collins Solicitors 134 Edmund Street Birmingham B3 2ES

Property Lawyers Pinsent Masons 30 Crown Place Earl Street London EC2A 4ES

External Auditors

BDO LLP 2 City Place Beehive Ring Road Gatwick West Sussex RH6 0PA

Internal Auditors

MHA MacIntyre Hudson 6th Floor 2 London Wall Place London EC2Y 5AU

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Structure, Governance and Management

Young Epilepsy is regulated by a scheme of the Charity Commission dated 31 October 2002, as amended by deeds of amendment dated 22 January 2004 and 21 October 2004.

Young Epilepsy has one Corporate Trustee, The National Centre for Young People with Epilepsy, a company limited by guarantee registered in England (number 00756798). The sole purpose of the Corporate Trustee is to act as the Trustee of the charity. The Board members of the Corporate Trustee are referred to as “Trustees” in this report.

Young Epilepsy had one wholly owned subsidiary trading company in the group, which is St Piers (Services) Limited (Company registration number 04131530). Its principal activity is the development of property for the use of disabled children. Notice was given to dissolve St Piers Services Limited on the 12 December 2023. The financial statements will continue to reflect the subsidiary figures until dissolved by Companies House.

The Board of Trustees is responsible for the governance of Young Epilepsy and ensuring that its activities are within the charitable objectives. It sets the strategic direction, the responsibility for the execution of which is delegated to the executive management through the Chief Executive Officer. Trustees can serve a maximum of two terms of three years, with a third term only in exceptional circumstances.

New Trustees are recruited through an open process and are appointed by the Board of the Corporate Trustee. Young Epilepsy regularly seeks to refresh the Trust Board with Trustees who have the experience and expertise required to enable the charity to perform to a high level.

New Trustees receive an induction programme including mandatory safeguarding training. They are provided supporting materials including formal governance documents. Other training courses are available for Trustees as required.

The Board of Trustees meets on a regular basis. During the year they were supported by the Education Governing Body, which oversees St Piers School and College, and six sub-committees:

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Financial review

Income and expenditure

Total income for the year was £22.2m (2022: £22.8m). Of this, fees from local government and health authorities were £20.4m (2022: £20.6m). This is mainly due to fewer residential students during the year and lower income from the Rehabilitation and Assessment units. Fundraising and legacy income at £1.4m (2022: £1.8m) showed a decrease on the previous year.

The total expenditure for the fiscal year amounted to £24.0m (2022: £23.4m). Staff costs, encompassing agency expenditures, experienced a rise to £17.8m (2022: £17.5m) primarily attributed to inflationary factors. Overall, we had a consolidated net deficit after depreciation of £1.8m (2022: £0.6m deficit).

Reserves

The level of free reserves should be sufficient to cover operational expenditure commitments in the short term (excluding expenditure on acquisitions and other funded projects) with consideration of operational risks and external factors. This definition is intended to provide the charity with a way of identifying those reserves that are readily available in relatively liquid form if required by the charity and which are necessary for operational matters. These will also include funds available through external bank borrowings and overdraft facilities.

The annual benchmark for free reserves is established during the Board's approval of the budget. It is derived from stress testing the budget to ascertain a worst-case scenario, forming the foundation for determining the free reserves threshold set at £1.1m. The following reserves are held:

Restricted funds

These funds are tied to a specific activity by the funder or by the nature of the appeal and cannot be used to fund other activities by Young Epilepsy. More details of our restricted funds totalling £0.7m at the end of 2023 (2022: £0.6m) can be found in note 12 of the financial statements.

Funds representing functional fixed assets

These funds are equivalent to the net book value of the land and buildings used to support Young Epilepsy’s charitable and commercial operations. The Trustees have designated these funds totalling £21.2m at the end of 2023 (2022: £22.1m) as representing the element of our reserves that are tied to our charitable assets, including land and buildings. Consequently, these reserves are not available to be spent on ongoing activities.

Pension reserve

These funds are held to meet the future liabilities of our Final Salary Pension Scheme. The current pension scheme deficit of £4.6m (2022: £6.6m), calculated in accordance with the requirements of Section 28 of FRS 102, is shown as a liability against unrestricted funds. During the year the deficit diminished, a decrease in investment returns has been outweighed by the favourable impact on the present value of the scheme's liabilities.

An annual payment of £0.6m was made to the fund in the year to further reduce the deficit. The payment for 2023– 24 will rise to £0.7m per annum with stepped increases over the next seven years. This is in line with the agreement signed between the Charity and the Trustees of the pension fund for the April 2022 triennial valuation.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Financial review (continued)

Free reserves

Free reserves represent unencumbered funds not allocated for specific purposes or designated as fixed assets. As at the year end, these reserves amounted to £1.2m, marking a £1.3m decline from the previous year but aligning with our established policy. This figure surpasses the Board-approved annual threshold of £1.1m for free reserves. Incorporating overdraft facilities and loans into reserves calculations is feasible given their immediate accessibility. The overdraft facility enables the Charity to manage its ongoing cash requirements.

The Trustees recognise that the pension scheme deficit will not crystallise in the near future and that all reserves levels will continue to be monitored closely.

The Charity’s Reserves Policy states that the level of free reserves should be sufficient to cover operational expenditure commitments in the short term (excluding expenditure on acquisitions and other funded projects) with consideration of operational risks and external factors.

The Charity is currently in the process of selling part of its land to finance development work on the remaining estate, which will save on future maintenance costs and create the opportunity for additional income streams. These will contribute to the improvement of the free reserves position.

Funding

In total, 92% (£20.4m) of our income was made up of fees from local authorities and other supporting bodies. This funding is used to provide education and residential care for the students at St Piers School and College and healthcare from our facility in Lingfield. The remaining funding (£1.8m) comes from donations, legacies, rents and other sources, and was used to provide national services and support functions, and to ensure the free reserves are within the target level.

Risks

The Trustees have identified the principal risks and uncertainties to which Young Epilepsy is exposed and developed relevant managing actions. These are:

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Financial review (continued)

Going concern

The financial statements are drawn up on the going concern basis, which assumes Young Epilepsy will continue in operational existence for the foreseeable future. Young Epilepsy substantially relies on funding from local authority contracts for its current and future commitments and we seek to manage the risks around this income stream.

The Trustees believe the contracts we have in place with local authorities will be fulfilled and the planned income for the coming years will be received.

The going concern basis used in the preparation of these financial statements is based upon the expectation that Young Epilepsy’s net income or net expenditure are at a level to ensure reserves and cash flow requirements are met.

The Trustees have reviewed our financial position and financial forecasts, taking into account the levels of debt, cash, working capital, net current assets and the systems of financial control and risk management. The Trustees believe that we are well placed to manage operational and financial risks successfully.

Based on their work, the Board considers Young Epilepsy’s current and forecast cash resources to be sufficient to cover the working capital requirements of the charity for at least 12 months from the date of signing the accounts and has determined that it remains appropriate to continue to adopt the going concern basis in preparing the accounts. The Trustees have not identified any material uncertainties relating to going concern.

Executive pay increases

The Remuneration Committee reviews executive performance and remuneration annually. We aim to pay salaries at the median level for similar organisations within the not-for-profit sector, and to ensure that increases are consistent with those awarded in the overall organisational review of remuneration.

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Statement of Trustees’ responsibilities

The Trustees are responsible for preparing the Annual Report and the financial statements in accordance with applicable law and regulations.

Charity law requires the Trustees to prepare financial statements for each financial year in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and applicable law). Under charity law, the Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the group and charity and of the incoming resources and application of resources, including the income and expenditure, of the group and charity for that period.

In preparing these financial statements, the Trustees are required to:

The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charity’s transactions and disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Charities Act 2011. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Jane Ramsey

Date: 25 April 2024

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Independent Auditor’s Report to Trustees of The National Centre for Young People with Epilepsy Charitable Trust

Opinion on the financial statements

We have audited the financial statements of The National Centre for Young People with Epilepsy Charitable Trust (“the Parent Charity”) and its subsidiaries (“the Group”) for the year ended 31 July 2023 which comprise the consolidated statement of financial activities, the consolidated and charity balance sheets, the consolidated statement of cash flows and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Independence

We remain independent of the Group and the Parent Charity in accordance with the ethical requirements relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements.

Conclusions related to going concern

In auditing the financial statements, we have concluded that the Trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the Group and the Parent Charity’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the Trustees with respect to going concern are described in the relevant sections of this report.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Other information

The Trustees are responsible for the other information. The other information comprises the information included in the Annual Report, other than the financial statements and our auditor’s report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon. Our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.

We have nothing to report in this regard.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters in relation to which the Charities (Accounts and Reports) Regulations 2008 requires us to report to you if, in our opinion:

Responsibilities of Trustees

As explained more fully in the Trustees’ responsibilities statement, the Trustees are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the Trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the Trustees are responsible for assessing the Group’s and the Parent Charity’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the Trustees either intend to liquidate the Group or the parent Charity or to cease operations, or have no realistic alternative but to do so.

Auditor’s responsibilities for the audit of the financial statements

We have been appointed as auditor under section 144 of the Charities Act 2011 and report in accordance with the Act and relevant regulations made or having effect thereunder.

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Extent to which the audit was capable of detecting irregularities, including fraud

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

Non-compliance with laws and regulations

Based on:

We considered the significant laws and regulations to be the Charities Act 2011 and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

The Group is also subject to laws and regulations where the consequence of non-compliance could have a material effect on the amount or disclosures in the financial statements, for example through the imposition of fines or litigations. We identified such laws and regulations to be the Charities Act 2011, Employment Law, Health & Safety Legislation, Data Protection and relevant tax legislation.

Our procedures in respect of the above included:

Fraud

We assessed the susceptibility of the financial statements to material misstatement, including fraud. Our risk assessment procedures included:

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Based on our risk assessment, we considered the areas most susceptible to fraud to be management override of controls and income recognition.

Our procedures in respect of the above included:

We also communicated relevant identified laws and regulations and potential fraud risks to all engagement team members and remained alert to any indications of fraud or non-compliance with laws and regulations throughout the audit.

Our audit procedures were designed to respond to risks of material misstatement in the financial statements, recognising that the risk of not detecting a material misstatement due to fraud is higher than the risk of not detecting one resulting from error, as fraud may involve deliberate concealment by, for example, forgery, misrepresentations or through collusion. There are inherent limitations in the audit procedures performed and the further removed non-compliance with laws and regulations is from the events and transactions reflected in the financial statements, the less likely we are to become aware of it.

A further description of our responsibilities for the audit of the financial statements is located at the Financial Reporting Council’s (“FRC’s”) website at: https://www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.

Use of our report

This report is made solely to the Charity’s trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the Charity’s trustees those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the Charity and the Charity’s trustees as a body, for our audit work, for this report, or for the opinions we have formed.

BDO LLP, statutory auditor Gatwick, UK Date 30 April 2024

BDO LLP is eligible for appointment as auditor of the charity by virtue of its eligibility for appointment as auditor of a company under section 1212 of the Companies Act 2006.

BDO LLP is a limited liability partnership registered in England and Wales (with registered number OC305127).

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Consolidated Statement of Financial Activities for the year ended 31 July 2023

2023 2023 2023 2022 2022 2022
Unrestricted Restricted Total Unrestricted Restricted Total
funds funds Funds funds funds funds
Income from: Note £’000 £’000 £'000 £’000 £’000 £’000
Donations and legacies 3 641 713 1,354 677 1,081 1,758
Charitable activities
Fees – local authorities and other supporting
bodies		 20,355 - 20,355 20,601 - 20,601
Other trading activities
Income from rents and meals 343 - 343 287 - 287
Other Income 141 - 141 171 - 171
Total 21,480 713 22,193 21,736 1081 22,817
Expenditure on:
Raising funds
Cost of raising funds 546 - 546 393 - 393
546 - 546 393 - 393
Charitable activities
Educational, medical and residential care 22,838 615 23,454 22,321 657 ___22,978
Total 5 23,384 615 23,999 22,714 657 23,371
Net income/(expenditure) (1,904) 98 (1,806) (979) 423 (553)
Transfers between funds 14 42 (42) - 358 (358) -
Other recognised gains and losses: 8 - 8 - - -
Actuarial gain / (loss) on defined benefit pension
scheme		 11 1,615 - 1,615 1,954 - 1,954
Net movement in funds (239) 56 (183) 1,334 65 1,401
Total funds brought forward 18,028 596 18,624 16,693 530 17,223
Total funds carried forward 17,789 652 18,440 18,027 595 18,623

The notes on pages 41 to 62 form part of these financial statements and all amounts in the current and prior years relate to continuing activities.

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Consolidated Balance Sheet for the year ended 31 July 2023

2023 2023 2022 2022
Notes £000s £000s £000s £000s
Fixed assets
Tangible assets 8 21,235 22,051
21,235 22,051
Current assets
Debtors 9 4,776 2,349
Cash at bank and in hand 872 2,587
5,648 4,936
Creditors within 1 year 10 (3,810) (1,855)
1,838 3,081
Net current assets
Total assets less current liabilities and net
assets excluding pension scheme liability 23,073 25,132
Defined benefit pension scheme liability 11 (4,633) (6,509)
Net assets including pension scheme liability 18,440 18,623
Funds
Restricted funds:
Revenue 12 652 596
652 596
Unrestricted funds:
Funds representing functional fixed assets 13 21,239 22,051
Free reserves 13 1,182 2,485
Pension reserve 13 (4,633) (6,509)
17,788 18,027
Total funds 14 18,440 18,623

The financial statements were approved by the Board and authorised for issue on 25 April 2024

Tana AQ maly

Jane Ramsey

Chair of Trustees

The notes on pages 41 to 62 form part of these financial statements.

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Charity Balance Sheet for the year ended 31 July 2023

2023 2023 2022 2022
Notes £000s £000s £000s £000s
Fixed assets
Tangible assets 8 21,235 22,051
21,235 22,051
Current assets
Debtors 9 4,776 2,359
Cash at bank and in hand 872 2,582
5,648 4,941
Creditors within 1 year 10 (3,810) (1,850)
1,838 3,091
Net current assets
Total assets less current liabilities and net
assets excluding pension scheme liability 23,073 25,142
Defined benefit pension scheme liability 11 (4,633) (6,509)
Net assets including pension scheme liability 18,440 18,633
Funds
Restricted funds:
Revenue 12 652 596
652 596
Unrestricted funds:
Funds representing functional fixed assets 13 21,239 22,063
Free reserves 13 1,182 2,483
Pension reserve 13 (4,633) (6,509)
17,788 18,037
Total funds 14 18,440 18,633

The financial statements were approved by the Board and authorised for issue on 25 April 2024

J ane Ramsey

Chair of Trustees

The notes on pages 41 to 62 form part of these financial statements.

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

2023 2022
Note £’000 £’000
Cash flows used in operating activities:
Net cash used in operating activities 15 (1,530) (725)
Cash flows used in investment activities:
Purchase of tangible fixed assets (185) (1,524)
Net cash flows used in investment activities (185) (1,524)
Cash flows from financing activities:
Loan repayment - 1
Net cash flows from financing activities - 1
Change in cash and cash equivalents in the reporting period (1,715) (2,248)
Cash and cash equivalents brought forward 2,587 4,835
Cash and cash equivalents carried forward 872 2,587

No reconciliation of net debt has been prepared as the Charity only holds cash and cash equivalents. The notes on pages 41 to 62 form part of these financial statements.

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Charity status

The charity’s sole trustee is The National Centre for Young People (“the corporate Trustee”), a company which is limited by guarantee, the liability of each member in the event of the company winding up is limited to £1. The registered office of the corporate Trustee is St Piers Lane, Lingfield, Surrey RH7 6PW. The charity is registered with the Charity Commission and constitutes a public benefit entity as defined by FRS102.

2. Accounting policies

a) Basis of accounting

The financial statements have been prepared under the historical cost convention, and are in accordance with the Statement of Recommended Practice: Accounting and reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102) (the ‘SORP’), FRS 102: The Financial Reporting Standard applicable in the UK and Ireland (‘FRS 102’) (2nd Edition), the Charities Act 2011 and UK Generally Accepted Practice as it applies from 1 January 2019.

The preparation of the financial statements in accordance with FRS102 requires the Trustees to make judgements, estimates and assumptions that affect the application of policies and reported amounts in the financial statements. The areas where assumptions or estimates were significant to the financial statements are disclosed in note 2 below.

b) Going concern

The financial statements are drawn up on the going concern basis which assumes Young Epilepsy will continue in operational existence for the foreseeable future. Young Epilepsy substantially relies on funding from local authority contracts for its current and future commitments and we seek to manage the risks around this income stream. The Trustees believe the contracts we have in place with local authorities will be fulfilled and the planned income for the coming years will be received.

In addition, following irrevocable sale of part of our land after the year end, we will be receiving £6 million which will significantly improve our long-term financial viability. This money will all be reinvested into our buildings and estate which is anticipated to both increase revenue and manage costs.

The going concern basis used in the preparation of these financial statements is based upon the expectation that Young Epilepsy’s net income or net expenditure are at a level to ensure reserves and cash flow requirements are met.

The Trustees have reviewed our financial position and financial forecasts, taking into account the levels of debt, cash, working capital, net current assets and the systems of financial control and risk management. The Trustees believe that we are well placed to manage operational and financial risks successfully.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Accounting policies (continued)

Based on their work, the Board considers Young Epilepsy’s current and forecast cash resources to be sufficient to cover the working capital requirements of the charity for at least 12 months from the date of signing the accounts and has determined that it remains appropriate to continue to adopt the going concern basis in preparing the accounts. The Trustees have not identified any material uncertainties relating to going concern.

c) Consolidation

The statement of financial activities (SOFA) and the balance sheet consolidate the financial statements of the charity and its subsidiary undertaking (see note 17). The results of the subsidiary are consolidated on a lineby-line basis. No separate SOFA has been presented for the charity alone as permitted by paragraph 397 of the SORP 2005.

d) Income

Income is accounted for on an accruals basis, except cash donations which are accounted for when received. Income received net of taxation recoverable is accounted for gross. Fee income from contracts is accounted for with regard to any in-year admissions and leavers along with any contractual reviews of service levels. Legacy income is recognised when then there is entitlement to the funds, probability of receipt and the amount due is able to be measured reliably. Grants receivable based on performance are accounted for as the Charity earns the right to consideration by its performance. Where income is received in advance of performance its recognition is deferred and included in creditors. Where entitlement occurs before income is received the income is accrued.

The value for gifts in kind, donated services and donated facilities are recognised as income when the charity has control over the item or received the service, any conditions associated with the donation has been met, the receipt of economic benefit from the use by the Charity is probable and that economic benefit can be measured reliably. This is in accordance with the Charities SORP (FRS102).

e) Expenditure

Expenditure is accounted for on an accruals basis. Costs are attributed directly to activities where possible on either actual or estimated time basis. Indirect costs are shown as support costs, where these relate to the infrastructure in which charitable services are provided, including gaining support for the furtherance of the charity’s objectives. Governance costs comprise those costs incurred in the governance of the charity and its assets and are primarily associated with constitutional and statutory requirements.

f) Depreciation

Capital assets costing below £1,000 have been written off in the year in which the expenditure is incurred. Assets above £1,000 are capitalised. All building work and capital improvements that are not completed at the year-end are included under ‘Assets Under Construction’. These are moved to ‘Freehold Land and Buildings’ on completion.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Accounting policies (continued)

Depreciation has been provided on tangible and intangible fixed assets at the following rates which are anticipated to reduce their cost to residual value by the end of their expected useful lives. Land has not been depreciated.

Plant and Machinery 20% on cost Computer Software 20% on cost Computer Equipment 20% on cost Motor Vehicles 25% on cost Buildings 1%–7% on cost

Within Buildings, individual components are depreciated over the useful economic life as follows:

Construction 100 years
Roof 55 years
Lift 50 years
Bathroom 30 years
Windows & Doors 30 years
Heating 30 years
Kitchen 20 years
Air Conditioning 15 years
Boiler 15 years

Donated fixed assets are capitalised at their open market values at time of donation and depreciated in line with the above rates.

g) Pensions

The charity has three principal pension schemes for staff, the St Piers Lingfield Retirement Benefits Scheme, the Teachers' Pension Scheme (TPS) and The Pensions Trust. The first two schemes are defined benefit schemes, which are externally funded and contracted out of the State Second Pension.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Accounting policies (continued)

St Piers Lingfield Retirement Benefits Scheme

During the year, the charity operated a defined benefit scheme, which had been closed to new members on 7 April 2000, hence any liabilities will be restricted to current members only, and this number will decline over time. On 30 November 2022, this scheme was closed to new accrual so the remaining active members will no longer accrue benefits.

The difference between the fair value of the assets held in the St Piers Lingfield Retirement Benefits Scheme and the scheme’s liabilities measured on an actuarial basis using the projected unit method is recognised in the Charity's balance sheet as a pension scheme asset or liability as appropriate. The pension scheme balance is recognised net of any deferred tax balance.

Teachers’ Pension Scheme

Pension costs in respect of the TPS charged to the SOFA are equal to the contributions paid to this arrangement. The contribution rate is calculated in such a way that it is a substantially level percentage of current and future pensionable payroll. Not less than every four years, with a supporting interim valuation in between, the Government Actuary conducts a formal actuarial review of the TPS in order to specify the level of future contributions.

Changes in the defined benefit pension scheme asset or liability arising from factors other than cash contributions by the Charity are charged to the SOFA in accordance with FRS 102 section 28. Under the definitions set out in Financial Reporting Standard 102 section 28, the Teachers’ Pension Scheme is a multiemployer pension scheme. The charity is unable to identify its share of the underlying assets and liabilities of the scheme. Accordingly, the charity has taken advantage of the exemption in FRS 102 section 28 and has accounted for its contributions to the scheme as if it were a defined contribution scheme.

h) The Pensions Trust

A money purchase pension scheme with The Pensions Trust is available to all members of staff.

i) Fund accounting

Where funds are received for specific purposes set out by the donor or implied by the terms of appeal, these are shown as restricted income in the Statement of Financial Activities. Expenditure for the purposes specified is applied against the income and any amounts unexpended at the balance sheet date are shown within restricted funds. Amounts used to purchase tangible fixed assets are transferred to funds representing functional fixed assets at the time the assets are acquired.

44

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Accounting policies (continued)

j) Accounting estimates and key management judgements

Accounting estimates and judgements

In preparing the financial statements within the accounting frameworks set out in note 2, the Trustees are required to adopt those accounting policies most appropriate to the charity’s circumstances with a view to presenting fairly the charity’s financial position. In determining and applying accounting policies Trustees make estimates and judgements and the matters set out below are considered to be the most important in understanding the judgements that have been involved in preparing the financial statements and the uncertainties that could impact the amounts reported.

Estimation of assets useful lives

The charge in respect of periodic depreciation is derived from determining an estimate of an asset’s expected useful life and the expected residual value at the end of its life. The estimates of the lives by asset category are set out in note 2(f). The useful lives and residual values are determined by management at the time the asset is acquired and reviewed annually for appropriateness.

Provision for doubtful debts

Provisions have been made against specific invoiced debts where the collectability of these debts is uncertain taking into account their age, activity on the account and any correspondence.

Actuarial assumptions in respect of defined benefit pension scheme

The application of actuarial assumptions relating to the Defined Pension Scheme is incorporated in the financial statements in accordance with FRS102. In applying FRS102, advice has been taken from an independent qualified actuary. In this context, significant judgement is exercised in a number of areas, including future change.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

3. Donations and legacies

Donations:
Projects and residential house funds
Youth Development Programs
ACT Mental Health
Lottery Funding
Mental health, Youth and Digital projects
Unrestricted donation
Research Funds
Education Funding Agency (EFA)
Legacies
Total Donations and Legacies		 2023
£’000
81
31
114
123
91
608
50
223
1,321
33
1,354		 2022
£’000
218
367
-
-
-
444
303
194
1,525
232
1,758

The legacies are final payments in respect of legacies which were substantially recognised in previous years.

£713k (2022: £1,081k) of donations overall relate to restricted income.

4. Employees

Staff costs consist of:
Wages & Salaries
Social Security
Pension Costs		 2023
£’000
15,231
1,365
1,210
17,806		 2022
£’000
15,116
1,344
1,033
17,493

Included within wages and salaries are agency costs of £1,127,459 (2022 – £1,203,645) and termination payments of £68,469 (2022 - £53,449) incurred during the year.

Employer's pension costs comprise the following:
Teachers’ pension scheme
Defined contribution scheme
Deficit repayment for defined benefit scheme		 2023
£’000
227
492
501
1,220		 2022
£’000
228
455
343
1,026

46

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Employees (continued)

The average number of employees during the period was:
Teaching and Education Support Staff
Residential Care
Medical and Clinical Staff
Other staff
Full time equivalent		 2023
No.
202
189
63
100
554
372		 2022
No.
200
220
63
95
578
397

Number of staff with total remuneration (including settlements and benefits but excluding pensions) greater than £60,000 in bands of £10,000:

£60,001–£70,000
£70,001–£80,000
£80,001–£90,000
£90,001–£100,000
£100,001–£110,000
£110,001–£120,000
£120,001–£130,000
£130,001–£140,000		 2023
No.
9
3
2
-
1
1
1
-
17		 2022
No.
8
2
3
2
1
-
-
1
17

Contributions made in the year for the provision of the defined contribution scheme on behalf of 14 (2022 – 8) higher paid employees was £40,883 (2022 – £29,964). There is 1 (2022 – 2) higher-paid staff to whom retirement benefits are accruing under defined benefit schemes. The total remuneration paid to the Executive team amounted to £766,332 (2022 – £799,790).

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

5. Total Expenditure

Staff costs
Other direct expenditure
Support staff costs
Support costs
Auditors' remuneration
Depreciation
2023 Total
2022 Total		 Education,
Medical and
Residential
Care
£’000
13,856
813
3,543
4,162
75
1,003		 Fundraising
£’000
409
138
-
-
-
-		 2023
2022
£’000
£’000
14,265
14,292
951
972
3,543
3,201
4,162
3,935
75
40
1,003
931
23,452 547 23,999
23,371
22,978 393 23,371

Auditor’s remuneration relates solely to audit related services and is inclusive of Value Added Tax where not recovered.

Included in expenditure are governance costs amounting to £138,594 (2022 – £43,446), which relate to audit fees, legal advice for trustees and costs associated with constitutional and statutory requirements.

Direct costs are allocated to the fundraising team, but all other support costs are allocated to Education, Medical and Educational Care, which generate the majority of our income.

6. Trustees’ transactions

The Trustees do not receive any remuneration in respect of their services. Six Trustees (2022 – 6) received expenses reimbursed in line with the Trustees Expenses Policy amounting to £790 (2022 – £1,630). Further costs incurred on behalf of Trustees relate to Trustees’ indemnity insurance costs of £1,476 (2022 – £12,040).

7. Taxation

The organisation is a charity within the meaning of Para 1 Schedule 6 Finance Act 2010. Accordingly, the charity is potentially exempt from taxation in respect of income or capital gains within categories covered by Chapter 3 of Para 11 of the Corporate Tax Act or Section 256 of the Taxation of Chargeable Gains Act 1992, to the extent that such income or gains are applied exclusively to charitable purposes. The subsidiary trading company makes qualifying donations of taxable profit to the charity to the full extent allowable. Unless material any corporation tax liability arising in the subsidiary is included within the expenditure by the Group.

48

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

8. Tangible and intangible assets

Group
Cost
As 1 August
2022
Additions
Transfers
Disposal
At 31 July
2023
Depreciation
As 1 August
2022
Additions
Transfers
Disposal
At 31 July
2023
NBV Current
year
NBV last year		 Freehold
Land and
Buildings
Plant &
Machinery
Computer
Software
Computer
Equipment
Assets under
construction
Vehicles
Total
£'000
£'000
£'000
£'000
£'000
£'000
£'000
39,909
776
512
501
167
422
42,287
50
9
19
97
15
-
190
15
-
167
-
(182)
-
-
-
-
-
-
(19)
(19)
39,974
785
698
598
-
403
42,458
18,849
567
310
171
-
343
20,239
730
37
87
113
-
35
1,003
-
-
-
-
-
-
-
-
-
-
-
-
(19)
(19)
19,579
604
397
284
-
359
21,223
20,395
181
301
314
-
44
21,235
21,061
209
202
330
167
80
22,049

Freehold land and buildings have been included in the balance sheet at historic cost less the depreciation charged on the buildings. All assets are held for direct charitable use.

9. Debtors

Trade debtors
Amounts owed from
subsidiary undertaking
Other debtors
Accrued income		 Group
2023
£’000
1,761
-
881
2,134
4,776		 2022
£’000
1,001
-
585
763
2,349		 Charity
2023
£’000
1,761
-
881
2,134
4,776		 2022
£’000
1,001
13
582
763
2,359

All amounts shown under trade debtors fall due for payment within one year.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

10. Creditors: amounts falling due within one year

Trade Creditors
Accruals and deferred
income		 Group
2023
£'000
2,343
1,467
3,810		 2022
£'000
320
1,535
1,855
 Charity
2023
£'000
2,343
1,467
3,810		 2022
£'000
318
1,532

1,850

11. Pension Schemes

St Piers Lingfield Retirement Benefits Scheme

The Charity operates the St Piers Lingfield Retirement Benefits Scheme (“the Scheme”), a UK registered trustbased pension scheme that provides defined benefits. Pension benefits are linked to the members’ final pensionable salaries and service at their retirement (or date of leaving if earlier). This scheme was closed to new members on 7 April 2000, hence any liabilities will be restricted to current members only, and this number will decline over time. On 30 November 2022, this scheme was closed to new accrual so the remaining active members will no long accrue benefits.

The Pension Scheme Trustee is responsible for running the Scheme in accordance with the Scheme’s Trust Deed and Rules, which sets out their powers. The Pension Scheme Trustee is required to act in the best interests of the beneficiaries of the Scheme. There are three categories of pension scheme members:

The Pension Scheme Trustee is required to carry out an actuarial valuation every 3 years. The last actuarial valuation of the Scheme was performed by the Scheme Actuary for the Pension Scheme Trustee as at 5 April 2022. This valuation revealed a funding shortfall of £6,008,000. The Employer has agreed to pay regular contributions of £14,000 per month to cover Scheme expenses. In respect of the deficit in the Scheme as at 5 April 2022, the Employer has agreed to pay the following contributions:

Year beginning 1 August Contributions
£’000
2022 625
2023 682
2024 842
2025 969
2026 943
2027 652
2028 672
2029 692

50

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Pension schemes (continued)

The Employer has also agreed to pay additional contributions equal to 20% of audited Net Income in excess of £0.5m each year. The additional contribution in any year will be limited in value to the remaining payments outstanding on the July 2023 Recovery Plan, or such subsequent Recovery Plan as is put in place, less any additional contributions already made under the 2023 agreement.

The Employer therefore expects to pay a minimum of £798,000 to the Scheme during the accounting year beginning 1 August 2023. St Piers Lingfield Retirement Benefit Scheme.

The results of the most recent formal actuarial valuation as at 5 April 2022 have been updated to 31 July 2023 by a qualified independent actuary. The assumptions used were as follows:

2023 2022
Significant actuarial assumptions:
Discount rate 5.1% 3.4%
Inflation (RPI) 3.3% 3.5%
Inflation (CPI) 2.6% 2.7%
Other actuarial assumptions:
Rate of increase in salaries 2.60% 2.70%
Rate of increase in pensions:
Non-Pensioners – Pre 05 benefits 3.20% 3.20%
Non-Pensioners – Post 05 benefits 2.50% 2.50%
Pensioners – Pre 05 benefits 3.20% 3.20%
Pensioners – Post 05 benefits 2.50% 2.50%
Revaluation of deferred pensioners in excess of GMP 2.60% 2.70%

The demographic mortality assumptions adopted at 31 July 2023 imply the following life expectancies at age 65:

65:
2023 2022
Mortality assumptions:
Mortality S3PMA/S3PF S3PMA/S3PFA
A CMI 2019 CMI 2019
1.25% 1.25%
Life expectancies:
Male currently age 45 at 65 22.1 years 22.7 years
Female currently age 45 at 65 24.8 years 25.2 years
Male currently age 65 20.8 years 21.3 years
Female currently age 65 23.3 years 23.8 years

Under FRS102 the expected return on the schemes assets is now assessed using the discount rate underlying the valuation of the schemes liabilities, which is based on AA rated corporate bond yields.

At 31 July 2023, the discount rate used to calculate the schemes liabilities and hence the assumed rate of return on the Schemes assets was 5.1% p.a. (2022 – 3.4%).

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Pension schemes (continued)

The fair value of the assets in the scheme were:
Bonds
Gilts
Cash
Annuities
Other
Total market value of assets
Present value of scheme liabilities
Net pension liability
The actual return on assets over the period was
Interest income
Return on assets less interest income
Total return of assets		 Value at
2023
Assets
% of
total
£’000
Scheme
1,228
12%
2,976
29%
104
1%
820
8%
5,069
50%
10,197
(14,830)
(4,633)
2023
£’000
(2,025)
421
(2,446)
(2,025)		 Value at
2022
assets
% of
total
£’000
Scheme
1,072
9%
3,213
26%
163
1%
1,040
8%
7,063
56%
12,551
(19,060)
(6,509)
2022
£’000
(3,127)
236
(3,363)
(3,127)
Analysis of changes in the value of the scheme liabilities over the year:
Opening present value of the defined benefit obligation
Service cost
Interest cost
Member contributions
Benefits paid
Actuarial gain
Closing present value of the defined benefit obligation		 2023
£’000
(19,060)
(14)
(635)
(7)
825
4,061
(14,830)		 2022
£’000
(24,629)
(87)
(365)
(18)
722
5,317
(19,060)

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Pension schemes (continued)
Analysis of changes in the value of the scheme assets over the year:
Opening market value of Scheme assets
Expected return on Scheme assets (excluding interest income)
Interest income
Employer contributions
Member contributions
Benefits paid
Administration expenses
Closing market value of Scheme assets
Analysis of the amounts charged to Statement:
of Financial Activities:
Current service cost
Administration expenses
Total service cost
Net finance charge
Total pension cost charged to Statement of Financial Activities
Analysis of actuarial gain recognised in the Statement of Financial
Activities:
Actual return on assets less interest
Actuarial gains on defined benefit obligation
Total gain recognised in the Statement of Financial Activities		 2023
£’000
2022
£’000
12,551
15,741
(2,446)
(3,363)
421
236
762
766
7
18
(825)
(722)
(273)
(125)
10,197
12,551
2023
2022
£’000
£’000
£’000
£’000
(14)
(273)
(87)
(125)
(287)
(212)
(214)
(129)
(501)
(341)
2023
2022
£’000
£’000
(2,446)
(3,363)
4,061
5,317
1,615
1,954		 2023
£’000
2022
£’000
12,551
15,741
(2,446)
(3,363)
421
236
762
766
7
18
(825)
(722)
(273)
(125)
10,197
12,551
2023
2022
£’000
£’000
£’000
£’000
(14)
(273)
(87)
(125)
(287)
(212)
(214)
(129)
(501)
(341)
2023
2022
£’000
£’000
(2,446)
(3,363)
4,061
5,317
1,615
1,954

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Pension schemes (continued)

Movement in deficit during the year:
Deficit in scheme at the beginning of the year
Movement in year:
Current service cost
Administration expenses
Net finance charge
Contributions
Return on assets excluding interest income
Actuarial gain
(Deficit) in scheme at end of year		 2023
£’000
(6,509)
(14)
(273)
(214)
762
(2,446)
4,061
(4,633)		 2022
£’000
(8,888)
(87)
(125)
(129)
766
(3,363)
5,317
(6,509)

Teachers' Pension Scheme

Under the definitions set out in Financial Reporting Standard 102 section 28, the Teacher's pension scheme (TPS) is a multi-employer pension scheme. As the TPS is underwritten by central government and the Charity has no future obligation to make contributions to the scheme, this is effectively a defined contribution scheme in so far as it affects the charity. As a result, contributions to this scheme are accounted for as if the scheme was a defined contribution scheme.

The charity has set out below the information available on the Scheme and the implications for the charity in terms of the anticipated contribution rates.

The Teachers’ Pension Scheme is a statutory, contributory, unfunded, defined benefit scheme. The regulations under which the TPS operates are the Teachers’ Pensions Regulations 1997, as amended. Contributions are credited to the Exchequer on a “pay as you go” basis under arrangements governed by the Superannuation Act 1972. A notional asset value is ascribed to the Scheme for the purposes of determining contribution rates.

The Government Actuary's report of March 2019 revealed that the total liabilities of the Scheme (pensions currently in payment and the estimated cost of future benefits) amounted to £218.1 billion. The value of the assets (estimated future contributions together with the proceeds from the notional investments held at the valuation date) was £196.1 billion. The assumed real rate of return is 2.4% in excess of prices. The rate of real earnings growth is assumed to be 2.2%. The gross rate of return is 4.45%

TPT Retirement Solutions

The company participates in the scheme, a multi-employer scheme which provides benefits to some 638 nonassociated participating employers. The scheme is a defined benefit scheme in the UK. It is not possible for the company to obtain sufficient information to enable it to account for the scheme as a defined benefit scheme. Therefore, it accounts for the scheme as a defined contribution scheme.

The scheme is subject to the funding legislation outlined in the Pensions Act 2004, which came into force on 30 December 2005. This, together with documents issued by the Pensions Regulator and Technical Actuarial Standards issued by the Financial Reporting Council, set out the framework for funding defined benefit occupational pension schemes in the UK.

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THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Pension schemes (continued)

The scheme is classified as a “last-man standing arrangement”. Therefore, the company is potentially liable for other participating employers’ obligations if those employers are unable to meet their share of the scheme deficit following withdrawal from the scheme. Participating employers are legally required to meet their share of the scheme deficit on an annuity purchase basis on withdrawal from the scheme.

A full actuarial valuation for the scheme was carried out at 30 September 2020. This valuation showed assets of £800.3m, liabilities of £831.9m and a deficit of £31.6m. To eliminate this funding shortfall, the Trustees have asked the participating employers to pay additional contributions to the scheme as follows:

Deficit contributions

From 1 April 2022 to 31 January 2025: £3,312,000 per annum (payable monthly), unless a concession has been agreed with the Trustees the term to 31 January 2025 applies. The scheme’s previous valuation was carried out with an effective date of 30 September 2017. This valuation showed assets of £794.9m, liabilities of £926.4m and a deficit of £131.5m. To eliminate this funding shortfall, the Trustees asked the participating employers to pay additional contributions to the scheme as follows:

Deficit contributions

From 1 April 2019 to 30 September 2025: £11,243,000 per annum (payable monthly and increasing by 3% each on 1 April).

The recovery plan contributions are allocated to each participating employer in line with their estimated share of the Series 1 and Series 2 scheme liabilities.

Where the scheme is in deficit and where the company has agreed to a deficit funding arrangement the company recognises a liability for this obligation. The amount recognised is the net present value of the deficit reduction contributions payable under the agreement that relates to the deficit. The present value is calculated using the discount rate detailed in these disclosures. The unwinding of the discount rate is recognised as a finance cost.

Present value of provision
Present value of provision
Reconciliation of opening and closing provisions
Provision at start of period
Deficit contribution paid
Remeasurements – amendments to the contribution schedule
Provision at end of period		 2023
£’000
5
8
(3)
-
5		 2022
£’000
8
31
(7)
(16)
8

55

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Pension schemes (continued)

Income and expenditure impact 2023 2022
£’000 £’000
Interest expense:
Remeasurements – impact of any change in assumptions - -
Remeasurements – amendments to the contribution schedule - -
Contributions paid in respect of future service - (16)
Rate of discount 5.98% 3.15%

The discount rates shown above are the equivalent single discount rates which, when used to discount the future recovery plan contributions due, would give the same results as using a full AA corporate bond yield curve to discount the same recovery plan contributions.

12. Restricted funds – Group and charity

Revenue
Research Funds
Mental health, Youth and Digital
projects
Lottery Funding
Act Mental Health
Youth Development Programmes
True Colours Trust – Epilepsy Infancy
Other funds
EFA grants
Restricted funds		 As at 31
July
2022
£’000
82
-
-
-
239
17
247
11
596		 Income
£’000
50
91
123
114
31
-
81
224
714		 Expenditure
£’000
(110)
(90)
(83)
-
(160)
-
(44)
(128)
(615)		 Transfer
£’000
-
-
-
-
-
-
(8)
(35)
(43)		 As at
31 July
2023
£'000
22
1
40
114
110
17
276
72
652

56

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Restricted funds – Group and charity (continued)

Revenue
Research Funds
Fidelity UK Foundation - Digital
Project
National Services Programmes
True Colours Trust - Epilepsy Infancy
Other funds
EFA grants
Restricted funds		 As at
31 July
2021
£’000
164
147
85
20
83
31
530		 Income
£’000
303
185
180
-
220
193
1,081		 Expenditure
£’000
(122)
(83)
(276)
(3)
(56)
(117)
(657)		 Transfer
£000
(263)
(249)
250
-
-
(96)
(358)		 As at
31 July
2022
£’000
82
-
239
17
247
11
596

Fund accounting

Where funds are received for specific purposes set out by the donor or implied by the terms of appeal, these are shown as restricted income in the Statement of Financial Activities. Expenditure for the purposes specified is applied against the income and any amounts unexpended at the balance sheet date are shown within restricted funds. Amounts used to purchase tangible fixed assets are transferred to funds representing functional fixed assets at the time the assets are acquired.

13. Unrestricted funds

Group
Unrestricted funds
Designated funds
Fixed assets
Pension reserve
General unrestricted funds
Total unrestricted funds		 As at
31
July
2022
Income
Other
Gains/(Losses)
Expenditure
Transfers
As at
31 July
2023
£’000
£’000
£’000
£’000
£’000
£’000
22,051
-
-
(812)
21,239
(6,509)
-
1,876
-
-
(4,633)
15,542
-
1,876
-
(812)
16,606
2,485
21,227
-
(23,385)
855
1,182
18,027
21,227
1,876
(23,385)
43
17,788

57

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Unrestricted funds (continued)

Charity
Unrestricted funds
Designated funds
Fixed assets
Pension reserve
General unrestricted funds
Total unrestricted funds
Group
Unrestricted funds
Designated funds
Fixed assets
Pension reserve
General
unrestricted
funds
Total unrestricted
funds		 Charity
Unrestricted funds
Designated funds
Fixed assets
Pension reserve
General unrestricted funds
Total unrestricted funds
Group
Unrestricted funds
Designated funds
Fixed assets
Pension reserve
General
unrestricted
funds
Total unrestricted
funds		 As at 31
July
2022
Income
Other
Gains/(Losses)
Expenditure
Transfers
As at 31
July
2023
£’000
£’000
£’000
£’000
£’000
£’000
22,063
-
-
-
(824)
21,239
(6,509)
-
1,876
-
-
(4,633)
15,554
-
1,876
-
(824)
16,606
2,483
21,227
-
(23,385)
857
1,182
18,037
21,227
1,876
(23,385)
33
17,788
As at 31
July 2021
Income
Other
Gains/(Losses)
Expenditure
Transfers
As at 31
July
2022
£’000
£’000
£’000
£’000
£’000
£’000
21,459
-
-
-
592
22,051
(8,888)
-
2,379
-
-
(6,509)
12,571
-
2,376
-
592
15,542
4,121
21,311
-
(22,712)
(235)
2,485
16,692
21,311
2,376
(22,712)
357
18,027

58

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Unrestricted funds (continued)

Charity
Unrestricted funds
Designated funds
Fixed assets
Pension reserve
General unrestricted
funds
Total unrestricted
funds		 As at 31
July 2021
Income
Other
Gains/(Losses)
Expenditure
Transfers
As at 31
July
2022
£’000
£’000
£’000
£’000
£’000
£’000
21,472
-
-
-
591
22,063
(8,888)
-
2,379
-
-
(6,509)
12,584
-
2,379
-
591
15,554
4,117
21,311
-
(22,710)
(235)
2,483
16,701
21,311
2,379
(22,710)
356
18,037

14. Analysis of net assets between funds

Group
Tangible Fixed Assets
Net Current Assets
Total Assets Less Current Liabilities
Defined Benefit Pension Scheme Liability
Net Assets
Charity
Tangible Fixed Assets
Net Current Assets
Total Assets Less Current Liabilities
Defined Benefit Pension Scheme Liability
Net Assets		 Unrestricted
Funds
£'000
21,235
1,186
22,421
(4,633)
17,788
21,235
1,186
22,421
(4,633)
17,788		 Restricted
Funds
£'000
-

652
652

-
652
-

652
652

-
652		 2023
Total
Funds
£'000
21,235
1838
23,073
(4,633)
18,440
21,235
1,838
23,073
(4,633)

18,440

59

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

Analysis of net assets between funds (continued)

2022
Unrestricted Restricted Total
Funds Funds Funds
£000 £000 £000
Group
Tangible Fixed Assets 22,051 - 22,051
Net Current Assets 2,485 596 3,081
Total Assets Less Current Liabilities 24,536 596 25,132
Defined Benefit Pension Scheme Liability (6,509) - (6,509)
Net Assets 18,027 596 18,623
Charity
Tangible Fixed Assets 22,051 - 22,051
Net Current Assets 2,495 596 3,091
Total Assets Less Current Liabilities 24,546 596 25,142
Defined Benefit Pension Scheme Liability (6,509) - (6,509)
Net Assets 18,037 596 18,633

15. Reconciliation of net expenditure to net cash flow used in operating activities

Net expenditure for the reporting period
Adjustments for:
Depreciation
Adjustment for pension funding
Increase in debtors
Increase/(decrease) in creditors
Net cash used in operating activities		 2023
£’000
(1,806)
1,003
(259)
(2,425)
1,957
(1,530)		 2022
£’000
(554)
931
(425)
(442)
(235)
(725)

16. Operating Leases

The total of future minimum rentals receivable under non-cancellable rental agreements are as follows:

60
Total minimum lease payments
Within one year
Within two to five years		 2023
£’000
2022
£’000
60
51
49
111
111
160

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

17. Subsidiary company

The charity owns the whole of the issued ordinary share capital of St Piers (Services) Limited, a company registered in England. St Piers (Services) Limited was dissolved on the 4 July 2023. The subsidiary is used for non-primary purpose trading activities, namely to develop facilities for disabled children. All activities have been consolidated on a line by line basis in the SOFA. The results below are for the period to 31 July 2023.

Turnover
Cost of sales/administrative expenses
Net loss
The aggregate of the assets, liabilities and funds was:
Assets
Liabilities

 2023

£’000

-
-

-
2023
£’000
-

-
**- **		 2022
£’000
-
(3)
__(3)
2022
£’000
6
(1,121)

(1,115)

The National Centre for Young Epilepsy is a trust corporation and acts as a trustee for the National Centre for Young People with Epilepsy Charitable Trust.

18. Related Party Transactions

During the year the debt between the Charity and its Subsidiary of £1.1M was waived as part of the intention to wind up the Subsidiary. There were no transactions between the Charity and its Subsidiary during the prior year.

19. Results of Parent Company

Included in the consolidated statement of financial activities are the following amounts in respect of the charity:

Total income
Total expenditure
Actuarial gain on defined benefit pension scheme

Net movement in funds		 2023
£’000
22,193
(23,999)
1,615
(191)
2022
£’000
22,819
(23,369)
1,956
1,406

61

THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY CHARITABLE TRUST Report and Financial Statements for the year ended 31 July 2023

20. Post Balance Sheet Events

On the 14 February 2023 Tandridge District Council issued a formal decision notice in relation to granting planning permission for the sale of 149,188 square feet of land owned by the Charity and the proceeds from the sale will be re-invested in our estate to benefit current and future students at our school and college.

Young Epilepsy had one wholly owned subsidiary trading company in the group, which is St Piers (Services) Limited (Company registration number 04131530). Its principal activity was the development of property for the use of disabled children. Notice was given to dissolve St Piers Services Limited on the 12 December 2023. The financial statements will continue to reflect the subsidiary figures until dissolved by Companies House.

62