Message from the Chair
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, subject to the judicial review period, 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
Chief Executive's Review
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; 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, 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
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, not knowing when their next seizure will happen.
Our Vision
Together, we can create a society where children and young people with epilepsy are heard and can live happy, fulfilled lives.
Our values
- Young people are at the centre of everything we do.
- We work together to make a greater difference.
- We are courageous and ambitious for change.
Our programmes
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.
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.
Voice & Support
Being part of the Youth Voice Network and the Hear by Right process means a lot to me as I’m able to help change the system for other young people! It makes me feel more positive about my struggles with epilepsy.
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:
- Bring about societal change, by amplifying young voices and campaigning with them
- Support the children and young people with epilepsy most in need
- Influence policy and practice across health and education systems to improve inclusion and support
- Innovate through digital information and support services to improve self-management of epilepsy
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. 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:
- Mental health support
- Variation in care
- Tertiary care and surgery
- Transition from paediatric to adult services
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.
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. 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.
YVN members helped facilitate a joint Research Symposium with Epilepsy Research UK in London in May 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 All-Party 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.
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