Annual Report 16-17

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.

Over the last year, we have continued to help our young people thrive and achieve their aspirations with good education outcomes and positive transitions into adult life - this against a background of a very challenging funding environment.

Social care funding has been the subject of much public debate. We are being asked to deliver significantly more, for significantly less by local authorities who are themselves trying to do the same.

At the same time, we are still operating in a post-recessionary environment impacted by further mid-term uncertainty as a result of the upcoming exit from the European Union. This reduces consumer confidence which, in turn, impacts on fundraising in the charitable sector.

Our Strategy and Vision

  • At Young Epilepsy, our mission is to create better futures for young people with epilepsy and associated conditions.
  • We’ve focused on four key strategic goals:
    • Building a Centre of Excellence at our Lingfield campus for education, care, and health services
    • Becoming the national champion for children and young people with epilepsy
    • Supporting pioneering research that improves lives
    • Expanding our services nationally through partnerships and outreach

Updates and Achievements

  • St Piers School and College saw all leavers progress to further education, with 97% earning qualifications.
  • We supported over 200 young people through education, care, and health services on campus.
  • Our diagnostic and assessment services helped many families, including work with Great Ormond Street Hospital.
  • We faced challenges in our residential services, including staffing shortages and a temporary Ofsted downgrade. We responded with:
    • A major recruitment drive
    • Investment in facilities and staff training
    • Improved leadership and management
  • Ofsted later recognised our progress, and the CQC rated our adult provision as “Good.”

National Outreach and Influence

  • Our Connect and Transitions projects supported over 600 young people and families, with plans to reach 600 more by 2020.
  • We launched a parent guide, highly commended by the BMA.
  • Our Epilepsy Friendly Scheme now supports nearly 50 universities, helping over 500,000 students.
  • We influenced policy through:
    • The All-Party Parliamentary Group on Epilepsy
    • Campaigns on sodium valproate risks and school support
    • Contributions to Welsh Government guidance and the ALN Bill

Research Highlights

  • We launched 11 new research projects and published 82 peer-reviewed studies.
  • Key studies included:
  • We hosted our 7th Paediatric Epilepsy Research Retreat with 100 researchers from 20 countries.
  • We’re proud of awards won by our researchers and the launch of EpiCARE, a European network for rare epilepsies.