The below links cover 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
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National Epilepsy12 audit: We work to improve the quality of care for children and young people with seizures and epilepsies in England and Wales. You may find these project resources useful:
Epilepsy12 Youth Advocates: We're a group of epilepsy experienced or interested children, young people and families who volunteer together to improve care for epilepsy patients and their families - and you can read about our experiences, resources and award-winning projects
Epilepsy Quality Improvement Programme (EQIP): We support epilepsy teams improve their services for children and young people with epilepsy
- Epilepsy Action
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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 these 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
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Young Epilepsy: A UK charity working exclusively on behalf of children and young people with epilepsy.
You may be interested in these 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 care givers (Epilepsy & your child, share your story and your rights)
- epilepsy Training Courses
- guide for schools
- SUDEP Action
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SUDEP Action: A charity dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. Find out more on their website, including I want more information, or call 01235 772850.
- National Health Service - NHS
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The NHS website provides important information on epilepsy.
You may also be interested in these links from the NHS:
- More charities
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- 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.
Contact information
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 epilepsy12@rcpch.ac.uk or visit our Epilepsy12 audit pages.