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.
Despite the difficult financial climate that still pervades, charitable donations and non-charitable income have both increased this year.
Almost 200 of the most special children and young people living with severe epilepsy and other associated conditions such as Autistic Spectrum Disorder (ASD), acquired brain injury, behavioural difficulties, profound and multiple learning difficulties etc, benefit from Young Epilepsy’s unique, holistic, on-site service.
Objective 1: Specialist Education, Residential and Health Services
Young Epilepsy provided tailored education and care at St Piers School and College, supporting students with complex epilepsy and associated conditions. The holistic approach included health, therapy, and residential services. Notable achievements included improved student outcomes, curriculum enhancements, and vocational training. The Connect2 service supported young adults with profound learning difficulties, and St Piers Farm was redeveloped to offer therapeutic and educational experiences.
Objective 2: Voice and Champion of Childhood Epilepsy
The charity raised awareness through campaigns like “Everyone Knows Someone” and the Young Epilepsy Champions Awards. Millie’s story highlighted the stigma faced by young people with epilepsy. Outreach included school training, helpline expansion, and distribution of information packs to clinics. Over 14 million people were reached through media efforts, and advocacy extended to parliamentary engagement.
Objective 3: Pioneering Research
Young Epilepsy led ground-breaking research through partnerships with UCL and Great Ormond Street Hospital. Projects included studies on epilepsy in infancy, sleep and memory, and barriers to education. The CHESS study revealed high rates of cognitive and behavioural difficulties in children with epilepsy. The charity published 49 peer-reviewed papers and secured nearly £1m in research funding.
Objective 4: World-Leading Health Expertise
The Neville Childhood Epilepsy Centre provided diagnostic, assessment, and rehabilitation services. John’s story illustrated the transformative impact of surgery and rehabilitation. Collaborations with UCL Partners and King’s Health Partners aimed to improve access and outcomes. Services expanded to include children with neurological conditions from isolated communities.
Objective 5: Financial Security and Investment
Young Epilepsy raised £3.5m, including £2m from major donors for a new Education Resource Centre. Fundraising events and community support were vital. The charity managed finances prudently, achieving a £1.3m surplus and investing in campus upgrades. The financial strategy focused on sustainability and capital development.
Objective 6: Skilled and Motivated Workforce
Staff development was prioritised through training, e-learning, and performance management. Lisa’s journey from support worker to lecturer exemplified career progression. The organisation earned the Investors in People Standard and won a Surrey Care Award. A values-based competency framework was introduced to align staff roles with strategic goals.
Objective 7: Efficient and Effective Organisation
Young Epilepsy invested in infrastructure, including the redevelopment of St Piers Farm and improved accessibility across campus. CRM and e-commerce systems were upgraded to enhance supporter engagement. Surplus land was sold to fund improvements. Tom’s story showed how therapeutic environments like the farm can transform lives.
