About Young Epilepsy
Children and young people with epilepsy have a right to be heard. We stand with them.
About us
We are Young Epilepsy
Epilepsy can be one of the most frightening and isolating conditions a child can experience. There’s a loss of all sense of safety – not knowing when and where their next seizure will happen, who’ll be there and whether they’ll be hurt.
For 125 years, we’ve been transforming the lives of children and young people with epilepsy.
We’ve led the way in an inclusive, progressive and nurturing approach to the education and support of children and young people with epilepsy.
Today, more than ever, Young Epilepsy is dedicated to standing up with and for children and young people with epilepsy. We’re here for them. It’s our job to listen and work with them so they can fulfil their potential.
What we do
We campaign for children’s rights. We deliver health services and research that improve diagnosis and treatments. We support children and young people throughout school, college, and university. We provide information, friendly advice, and practical help for living everyday life. We have developed a new range of services including health information resources, training courses for professionals in health, social care and education and the promotion of good practice in schools.
Research
We coordinate and fund epilepsy research into the causes, diagnosis and treatment of the condition, and its impact on all aspects of life for children, young people and their families.
We focus on three key workstreams, with over 40 current projects, some with international reach.
Our three key workstreams
Our research partnership is led by the Prince of Wales’s Chair of Childhood Epilepsy, Professor Helen Cross OBE, President of the International League Against Epilepsy, Director of UCL GOS-ICH and Young Epilepsy Trustee. We work in partnership with Great Ormond Street Hospital and University College London Great Ormond Street – Institute of Child Health across three key workstreams:
- Understanding childhood epilepsies
Around half of people diagnosed with epilepsy never learn the cause of it. But the sooner we know the cause of someone’s epilepsy, the sooner we know how else it is affecting them, and how best to manage and treat it. Early epilepsy diagnosis is also better for the person’s understanding of their condition. - Outstanding treatment
Epilepsy treatments have not changed very much in recent years, and it can take a long time to find the right combination of treatments for each person. This is very hard on children, young people and their families. So, it is crucial that we make advances in imaging, surgery, dietetics, genomics, targeted treatments, and new medicines, if we are to effectively treat and one day perhaps cure, every epilepsy. - Outstanding support
It’s important to know what epilepsy is and how to treat it. But it’s also crucial that we tackle the wider challenges associated with growing up with epilepsy and treating childhood epilepsy. We can then put in place the right systems and supports for children, young people and their families.
Health Services
Our health and research centre provides a calm, reassuring environment that puts children, young people and their families immediately at ease. This together with our friendly staff also helps to reduce the anxieties associated with traditional hospitals and clinical settings, making it easier to collect good data.
Our diagnostic suite provides a range of routine and long-term video-EEG diagnostics and now includes the first clinical OPM-MEG brain scanning system, that will revolutionise the diagnostic experience for children and young people with epilepsy.
Support and Inclusion
Our Support and Inclusion Team work with children and young people with epilepsy who have a range of abilities and needs and our Youth support coordinators provide one-to-one guidance, whole-family support and social get-togethers for children and young people with epilepsy, and their families. Support includes:
- Giving a young person a safe space to speak.
- Informing young people of their rights.
- Creating a community for young people, to meet others with the condition and share their stories.
- Empowering young people to improve their outlook on living with epilepsy, building their resilience, confidence and independence.
- Helping children and young people manage their wellbeing and mental health, signposting them to the help they need.
Youth participation
Listening to and understanding the lived experiences of children and young people with epilepsy is at the core of how we work at Young Epilepsy. We are pushing the boundaries to ensure young people’s voices are heard and respected.
The right for every child to have their opinions heard and taken seriously is fundamental to our work with the Youth Voice Network and Young Trustees. We work with a growing community of over 100 children and young people with epilepsy, aged 13 – 25 from across the UK. Through sharing their stories, they help shape our policies and campaigns, products and services, to create positive change in wider society. Every young person with epilepsy has a unique story, we work to ensure their voice is heard.
Policy and campaigns
Our purpose is to inform, educate, inspire and engage the nation, through young people with epilepsy living ambitious and fulfilled lives. We want an inclusive society that understands epilepsy.
Campaigns led by young people’s voices
Our campaign priorities are led by the views and experiences of children and young people with epilepsy. We work closely with our Young Reps and Young Supporters to inform our campaigning work and support them as advocates for children and young people with epilepsy across the country. Through peer-to-peer group discussions we enable young people with epilepsy to share their experiences together.
Improving systems of support
We campaign to improve systems of support for children and young people with epilepsy. This includes influencing policy in government, healthcare and education to ensure the rights of children and young people with epilepsy are upheld. We enable our supporters to campaign with us on the issues that matter to them, connecting them with decision-makers relevant to them.
#UnderstandMyEpilepsy
1 in 3 children with epilepsy do not get the support they need at school
They are unnecessarily missing out on their childhood and their futures are being put at risk, because people don’t understand epilepsy and how it can be different for everyone.