Keep reading to find useful resources and support tools for epilepsy care for children and young people. This page includes key RCHPCH resources and signposts to where you can find additional support for:
- Children and young people with epilepsy
- Parents / carers, families and friends of someone with epilepsy
- School individual health care plans
- Mental Health - condition, worries anxieties
- Transitioning to adult services
- RCPCH Projects
National Epilepsy Audit: works to improve the quality of care for children and young people with seizures and epilepsies in England and Wales. Additional resources from this project that you may find useful are:
Epilepsy12 Youth Advocates: a group of epilepsy experienced or interested children, young people and families who volunteer together to improve care for epilepsy patients and their families. Read about their experiences, resources and award winning projects.
Epilepsy Quality Improvement Programme (EQIP): a programme which supports epilepsy teams improve their services for children and young people with epilepsy.
- Epilepsy Action
Epilepsy Action: a charity that improves the lives of everyone affected by epilepsy. They give advice, improve healthcare, fund research and campaign for change. Visit the epilepsy action website for information and support for your epilepsy, or call their helpline on 0808 800 5050.
You may also be interested in the following links from Epilepsy Action:
- advice and information (on epilepsy, diagnosing epilepsy, treatment and information on living with epilepsy)
- information about epilepsy in babies, children and young people
- information for carers for someone with epilepsy and a learning disability
- information about support for your child in education
- support for you (for talk and support groups, epilepsy forums, latest news, epilepsy training etc).
- Young Epilepsy
Young Epilepsy: a UK charity working exclusively on behalf of children and young people with epilepsy. Visit the Young Epilepsy website for more information, or call their helpline on 01342 831 342.
You may also be interested in the following links from Young Epilepsy:
- about epilepsy (What is epilepsy, causes of epilepsy, treatment, seizures/triggers and living with epilepsy)
- for young people (Epilepsy & me, help & advice and support at further education)
- for parents and carers (Epilepsy & your child, share your story and your rights)
- epilepsy Training Courses
- guide for schools
- SUDEP Action
SUDEP Action: a charity dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. Visit the SUDEP Action website for more information or call them on 01235 772850.
You may also be interested in the following links from SUDEP Action:
- National Health Service - NHS
NHS website provides important information on epilepsy.
You may also be interested in the following links from the NHS:
- More charities
- The Daisy Garland: a charity working exclusively for children and families whose lives have been touched by drug-resistant epilepsy.
- Epilepsy Society: a UK charity transforming the lives of people with epilepsy through world-leading research, advocacy and care.
- Mind: a mental health and wellbeing charity providing information and support to empower anyone experiencing a mental health problem. They campaign to improve services, raise awareness and promote understanding.
- Young Minds: a mental health charity for children, young people and their parents, making sure all young people can get the mental health support they need.
Please do contact a member of your clinical team if you have any questions or need advice about your care.
For information on our audit, you can also contact us via email@example.com or visit our Epilepsy12 audit webpages.