Annual Report 19-20

Our purpose at Young Epilepsy is to help create a society in which children and young people living with epilepsy can thrive and fulfil their potential, have their voices listened to and respected, and their ambitions realised.

Young Epilepsy's annual review looks at the range of work we have carried out over the course of the year. It explains how donations, contracts and fundraising activities have helped pay for our services. 

In 2019-20, we worked with children and young people across the country, as well as many of those people and organisations who shape their lives - parents, health and care professionals, researchers, teachers, policymakers and more.

Informed by young people and drawing on our strong legacy of expertise in education, health and research, we have developed and published our new 2020-2025 strategy.

This focuses our work around 4 offers; Learning, Health, Research and Information, with firm foundations in our three value statements:

  • 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

Key Achievements

  • Education and Care

    • Supported 167 students at St Piers School and College.
    • Maintained ‘Good’ Ofsted and CQC ratings.
    • Delivered inclusive education and residential care throughout the COVID-19 pandemic.
    • Achieved Inclusion Quality Mark Centre of Excellence status for both School and College.

  • Health and Research

    • Continued development of our health services at the Neville Childhood Epilepsy Centre.
    • Launched the UK’s first wearable MEG brain scanner project, with clinical evaluation planned for 2021.
    • Supported 47 research projects and published 90 papers in partnership with UCL and Great Ormond Street Hospital.
    • Established a network of 140 families and young people to consult on research.

  • Youth Voice and Digital Innovation

    • Appointed two Young Trustees and formed a group of 15 Young Reps to guide decision-making.
    • Launched The Channel, a digital platform offering peer support and advice tailored to young people.
    • Conducted a COVID-19 experience survey, revealing increased seizures and isolation among young people.

  • Fundraising and Financials

    • Raised £1 million, including £550k in unrestricted income and £413k in grants.
    • Secured funding for The Channel, MEG technology, and outdoor learning facilities.
    • Total income: £25.3 million; total expenditure: £25.8 million.
    • Free reserves stood at £4.6 million, covering 15 weeks of operations.

Looking Ahead

We’re investing in infrastructure, expanding our national profile, and deepening our commitment to youth-led change.