Chair of the Board

Young Epilepsy 

Chair of the board

Salary: Unremunerated, expenses paid 

Location: Board meetings will be a blend of presence in Lingfield, London and some online. 

Young Epilepsy is a national charity that is a major provider of support to children and young people with epilepsy and associated learning, emotional and behavioural difficulties. Our team of over 550 staff help us with our mission. For 125 years, we’ve led the way in an inclusive, progressive and nurturing approach to the education and support of children and young people with epilepsy so that they can fulfil their potential.

Epilepsy can be one of the most frightening and isolating conditions a child can experience. The loss of any sense of safety, trapped in an unpredictable world, not knowing when their next seizure will happen.

All this takes its toll on a child’s physical and mental health, as well as impacting their education and social life. It can limit opportunities for the rest of their life.

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

Young Epilepsy funds and coordinates research to improve epilepsy diagnosis and treatments, campaigns for children’s rights, and provides innovative tools, information, and practical support for living day-to-day life.

Our specialist education provision at St Piers school and college in Surrey, offers tailored care and support for children and young adults with epilepsy, autism and other complex educational needs and disabilities. We are proud to have an Outstanding rating from Ofsted for our college and are working towards outstanding across the school and residential services.

We are now looking for a new Chair of the Board that will work closely with young people, the Board and a highly committed team of professionals to deliver the impact we need to improve the lives of children and young people with epilepsy and complex learning needs and disabilities. The Board of Trustees currently has 13 members and is responsible for the governance of Young Epilepsy and ensuring that its activities are within its charitable objects. The Board sets the strategic direction of the charity and is supported by the Education Governing Body (EGB) which oversees St Piers School and College, and five further sub-committees. Our current Chair is moving on and we are now looking to appoint a new leader with a range of skills and life experiences to set the direction for our organisation over the next chapter of its history. 

 What we do: 

Together with a Youth Voice Network of over 150 members across the UK, we campaign for children’s rights and influence decision makers to improve systems of support for young people with epilepsy.  Deliver health services that improve diagnosis and treatments for epilepsy.  Coordinate and fund research into the causes, diagnosis and treatment of  childhood epilepsies, and their impact on all aspects of life for children, young people and their families (Working in partnership with Great Ormond Street Hospital and University College London).  Directly support over 1000 children and young people with epilepsy each year across the UK through one-to-one support, group work and social gatherings. Provide trusted information and advice for the 100,000 children and young people with epilepsy, and their families, across the UK.   Offer guidance, resources and training for professionals supporting children and young people with epilepsy. Provide a specialist independent residential school and college for around 200 children and young adults aged 4 to 25 with complex learning needs and disabilities. We are committed to safeguarding and promoting the welfare of children, young people and adults at risk. By protecting the health, wellbeing and rights of our students and service users we enable and empower them to live and learn free from fear, harm, abuse and neglect.  

To read the full role profile, please click Apply.

Once you have read the information, for a confidential conversation, please contact GatenbySanderson who are managing the process, who will be happy to discuss this opportunity with you and answer any questions you may have. 

Emma Jamison, Senior Researcher emma.jamison@gatenbysanderson.com
Liz Dean-Stevens, Principal Consultant liz.dean-stevens@gatenbysanderson.com

Closing date: 5pm on the 17th June 2024