These pages are about children with epilepsy in the UK. If you are looking for information about children with epilepsy in another country, please contact your local epilepsy organisation.
Is there any help I can get for my child?
Some children with epilepsy have more needs than other children. The local authorities in the different countries of the UK have a duty to provide a range of services for children in need. These are likely to include:
- Day care
- Advice, guidance and counselling
- After school activities
- Help with transport and holidays
- Short-term or respite care
- Cultural, social and leisure activities
If your child has more needs than other children, speak to your family doctor, epilepsy specialist nurse, health visitor, or staff at your local social services agency, or local authority. They can tell you more about these services.
How do I support my child with epilepsy?
“It was a shock being told I had epilepsy. And it made me scared to go out with my friends” Jasmine
Some children deal with their epilepsy and seizures in a very matter-of-fact way. Others feel embarrassed about having seizures, especially if they happen at school, or with their friends. You can support them by talking to them about their concerns. You could take information into school, so that staff can explain epilepsy to the other children.
Some children have triggers for their seizures. These can be things like late nights, tiredness, not eating well, stress or being unwell. In some children, avoiding triggers can reduce their number of seizures. You could work with your child to see if they can identify any triggers, and help them to decide how to avoid them.
How do I support other children in the family?
Having epilepsy in the family affects everyone, not just the child with seizures. Some brothers and sisters of children with epilepsy need more information about what is happening to their sibling. They may feel anxious about seeing a seizure, or not really understand what is going on. We have information about epilepsy for brothers and sisters.
It’s natural to have concerns when you are told your child has epilepsy. You might worry about how their epilepsy will affect them, or be concerned about side-effects from their epilepsy medicines. You might worry that family, friends and neighbours will not know much about epilepsy, or how to deal with it. Finding out as much information as possible about your child’s epilepsy and treatment, and sharing it with other people could be helpful. Once they understand, they are more likely to offer you support.
Who can I talk to about my concerns?
Your family doctor can give you information and advice about your child’s epilepsy, but probably won’t have the time for long discussions. If there is an epilepsy specialist nurse attached to your child’s epilepsy clinic, they should be able to offer you advice and support. Or you could speak with an advisor on the Epilepsy Action Helpline.
ACE Education Adviceline
Ace offers independent advice on a wide range of education issues.
Tel: 0300 0115 142
Carers UK provide information, advice and support for carers.
Tel: 0808 808 7777
Citizens Advice provides advice to everyone on their rights and responsibilities.
Telephone advice in England: 03444 111 444
Telephone advice in Wales: 03444 77 20 20
Contact a family supports families with disabled children.
Tel: 0808 808 3555
Disabled Living Foundation
The Disabled Living Foundation provides information about suppliers of specialist equipment to help with everyday living. Their website is called Living made Easy.
Tel: 0300 999 0004
The Dyspraxia Foundation offer support and advice to about living with development coordination disorder.
Tel: 01462 454986
IASS are an information, advice and support service network. They have a duty to provide information, advice and support to disabled children and young people, and those with special educational needs, and their parents. There should be an IAS Service in every local authority.
Independent Panel for Special Education Advice (IPSEA)
IPSEA offers free and independent advice on Local Authorities' legal duties to assess and provide for children with special educational needs.
Tel: 0800 018 4016
The following organisations can tell you more about services in your area:
- England and Wales: contact your local Social Services office
- Northern Ireland: contact Department of Health, Social Services or Public Safety department
- Scotland: contact your local Social Work department
Mencap supports people with a learning disability to live their lives as they choose.
Tel: 0808 808 1111
National Autistic Society
The National Autistic Society offers impartial, confidential advice and support on autism for anyone affected by, or researching autism.
Tel: 0808 800 4104
The NHS website
The NHS website is the online 'front door' to the NHS. It is the country's biggest health website and gives all the information you need to make choices about your health.
YoungMinds is committed to improving the emotional wellbeing and mental health of children and young people.
Tel: 0808 802 5544
Newlife is a charity for disabled children. It has a helpline run by nurses, is involved in research and campaigning and has an equipment fund. It has also published a guide to getting help from social services.
Tel: 0800 902 0095
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.
Epilepsy Action would like to thank Dr Amanda Freeman, consultant paediatrician at Queen Alexandra Hospital, Portsmouth, UK for her contribution to this information.
Dr Amanda Freeman has no conflict of interest to declare.
This information has been produced under the terms of Epilepsy Action's information quality standards.
- Updated September 2016To be reviewed September 2019