Epilepsy and Mental Health
Mental health difficulties such as anxiety and depression are common in people with epilepsy. Research suggests 37% of 5 to 15 year olds with epilepsy had a co-existing mental health condition. Findings from Young Epilepsy in 2021 show that 77% of young people say living with epilepsy has had a significant impact on their mental wellbeing, including their thoughts, feelings, and how they’re able to cope with everyday life. Despite this, recent findings from Epilepsy12 in 2024 show that less than two-thirds of children and young people with epilepsy and a mental health problem had received any kind of mental health support.
We have brought together some resources to help you build and maintain your mental wellbeing. You and your family will be able to access many of these without being referred by a professional. There are also opportunities to connect with other children and young people who have Epilepsy.
For general information about epilepsy and living with epilepsy, please visit the NHS website here: Information about epilepsy (NHS)
Epilepsy specific support services
Young Epilepsy works with children and young people with epilepsy, to ensure their voices are heard and their rights protected. They deliver health services and research that improve diagnosis and treatments. They support children and young people throughout school, college, and university, and provide information, friendly advice, and practical help for living everyday life.
Young Epilepsy provide a Mental health wellbeing space which you can access by clicking here
Young Epilepsy also provide Virtual Youth Groups which you can access by clicking here
The Channel is an online space for young people living with epilepsy. Here you can find trusted advice and honest answers, and read real stories about life with epilepsy.
For Parents & Carers, Young Epilepsy provides lots of advice and support. You can download a free guide for parents by clicking here
Young Epilepsy’s Support & inclusion team works with children and young people with epilepsy aged up to 25 years old who have a range of abilities and needs. Their 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.
- To contact Young Epilepsy with a general enquiry about their youth service please use this contact form here
- If you think you or your child needs support from Young Epilepsy’s Youth support coordinators, for one-to-one or group support, please click here and submit the form
Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy. They provide information, advice and support for people with epilepsy and their families.
Epilepsy Action provide lots of support, including a phone helpline: Helpline: 0808 800 5050
They provide lots of useful information online, one-to-one support through their befriending service, and Virtual Support Groups. Their online support groups provide a safe space to talk and ask questions, share experiences, and a chance to connect with others.
Epilepsy Action also offer free online learning. The ‘Your Child and Epilepsy’ course is a free, online 8 part course which you can do at your own pace. The aim of the course is to provide parents and carers with the knowledge, skills and confidence they need to care for and support children with epilepsy.
Hub of Hope Mental Health Support Network provided by Chasing the Stigma
The Hub of Hope is an online network and search tool developed by the charity Chasing the Stigma. On the Hub of Hope website, you can enter your location, and filter for ‘Epilepsy Friendly’ local services. You can further filter to see support for Young People. The results include local NHS services as well as voluntary/charity and community groups, local peer support groups, and online groups/telephone support.
Epilepsy Parent Workshops
As part of our ongoing pilot project, NTPN regularly run Epilepsy Parent Workshops for parents of children with epilepsy. These are targeted at either primary school age or secondary school age children. The aims of the workshops are to give parents a bit more information about how epilepsy can impact on emotional wellbeing in children, to look at some common issues and how parents might manage them, to explore parents' own wellbeing, and to look at where parents can get more support for their child. We have recorded these workshops (with no parents present) so you can view them in your own time as well. Please visit the links below
Mental Health services and resources
For information, advice and support about mental health for children, teenagers, and parents, visit this NHS website here. For advice for parents, please click here. To learn about Children and young people’s mental health services, click here.
The NHS Every Mind Matters website provides more information about mental health and mental wellbeing, both caring for yourself and how to support others. Click here for advice about looking after a young person’s mental health: Children’s mental health – Every Mind Matters – NHS
If you are worried about your child’s mental health, click here: I’m worried about my child :: Healthier Together
There are many organisations which provide free mental health support for young people. Here are some we recommend:
YoungMinds
YoungMinds is a charity that offers information and advice to young people, parents and carers about mental health. They have a free parents helpline and online chat service, which can be accessed by clicking here.
- Young people looking for support with their mental health should click here.
- For Parents, they provide lots of useful information and advice about how to get support from mental health services for your child, which can be accessed by clicking here
The Mix
The Mix is a UK based charity that provides free, confidential support for young people under 25. They help with a wide range of topics, including mental health, via their online support groups, online one to one chat function, and free online counselling service.
Kooth
Kooth is a free, safe and anonymous online counselling service for young people. Their team of mental health professionals can provide free 1:1 support.
Good Thinking
Good Thinking provides a range of resources to help Londoners improve their mental wellbeing.
Barnardo's
Barnardo’s is a leading children’s charity who, for over 150 years, have been making sure children and young people feel safer, happier, healthier and more hopeful, by running over 800 specialist services across the UK. Parents who are looking for support with being a parent or carer should click here.
- For information and advice around Supporting your child’s mental health, please click here
Shout
Shout is a free, confidential and 24/7 text support service for anyone in the UK. Shout’s trained volunteers are available around the clock to listen and support anyone who is suicidal, depressed, anxious or overwhelmed. The service is anonymous and does not show up on phone bills. Click here to find out more.
- To get help, text SHOUT to 85258. To let them know you have epilepsy and start a conversation, text PURPLE to 85258. (Note: You must text not WhatsApp)
Step Forward (Tower Hamlets)
Step Forward (Tower Hamlets)
Free & confidential counselling, wellbeing and mental health services for all young people aged 11-25, living in & around Tower Hamlets, East London
The team at Step Forward offer services Monday – Saturday in person or via telephone and video calls. (By appointment only on Saturdays). The best ways to contact us are by emailing us on info@step-forward.org or calling us on 0207 739 3082 or 07961 201234 and leaving a message for the team with your name and contact information and we will get back to you.
If you are struggling with your mental health and wellbeing and feel that you need urgent help then you can call the 24hr Tower Hamlets Mental Health Crisis Line on Free Phone 0800 073 0003
Docklands Outreach (Tower Hamlets)
Docklands Outreach
Docklands Outreach offer free services to families and young people in Tower Hamlets, including counselling and CBT for people aged 12-25, and Parenting Support for Parents of children aged 3-10.
T: 07434 643 725
E: info@dockout.org.uk
Mind
Support line: 0300 102 1234
Mind are open 9am to 6pm, Monday to Friday (except bank holidays).
Their support line is a safe space for you to talk about your mental health. Their advisors are trained to listen to you and help you find specialist support if you need it.
Talk to them if:
- You want a safe and confidential place to talk openly about your feelings
- You want someone to listen to you and help you to find the right steps to take for your mental health
- You’re looking for emotional support for your mental health and wellbeing
They are not a crisis service. If you’re in crisis, visit their crisis helplines page.
Infoline: 0300 123 3393
Ask them about:
- Mental health problems
- Where to get help near you
- Treatment options
- Advocacy services
- Welfare benefits (ask to speak to a welfare adviser)
Other ways to contact them:
Email: info@mind.org.uk
How to support 11-18 year olds with their mental health – Mind for Parents
Information for young people on mental health and wellbeing – Mind for Young People
HappyMaps
HappyMaps is an award-winning charity founded by healthcare professionals in collaboration with parents and young people. We understand the challenges families face when seeking help and how time-consuming it can be to navigate online information and find resources you trust. Let HappyMaps be your guide in finding the support you need, along with accurate information and recommended resources endorsed by CAMHS and fellow parents and young people.
Urgent Mental Health Crisis Support
If you or someone close to you is having a mental health crisis and you need urgent support, you can call 111 or visit https://111.nhs.uk/triage/check-your-mental-health-symptoms
Alternatively, you can call the relevant 24/7 mental health crisis lines below. These free support lines can provide advice to anyone in a crisis and are open 24/7 365 days a year. These mental health crisis lines are for people of any age (children, young people, and adults) and are supported by trained mental health advisors:
Area | Boroughs covered | Crisis line number |
|---|---|---|
North West London | Brent, Hillingdon, Harrow, Kensington & Chelsea and Westminster | 0800 0234 650 |
Ealing, Hounslow, Hammersmith and Fulham | 0800 328 4444 | |
North Central London | Barnet, Camden, Enfield, Haringey and Islington | 0800 151 0023 |
North East London | City & Hackney | 0800 073 0006 |
Newham | 0800 073 0066 | |
Tower Hamlets | 0800 073 0003
| |
Barking & Dagenham, Havering, Redbridge and Waltham Forest | 0300 555 1000
|
In an emergency, please call 999 or go to A&E.
Local Offers
Every council must publish a local offer. A local offer is a wide range of information about all the support and facilities which families can expect to find in their area for children and young people. It should include information about education, health and care provision.
Explore your local offer by clicking on the links below for East and North East London, or for North West London
If your local area is not listed, Google your local area + ‘local offer’ to find your Local Offer.
East and North East London:
North West London:
Other Support
The Sleep Charity
The Sleep Charity is a free helpline that is run by trained sleep advisors, many of whom are specialists in working with SEND. They can talk to young people directly, or parents (they can also talk to adults, including older people, about their sleep issues).
Sibs
Sibs is a charity that supports siblings of people with disabilities. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings. They provide information, support and training on sibling issues for adult siblings, young siblings, parents and professionals.
The Challenging Behaviour Foundation
The Challenging Behaviour Foundation is a registered charity focussed specifically on children, young people and adults with severe learning disabilities whose behaviour challenges. We are making a difference to the lives of children, young people and adults with severe learning disabilities whose behaviour challenges, by providing information, support and workshops to families and professionals, and advocating for families.
Scope
Scope is a disability equality charity in England and Wales. We provide practical information and emotional support when it’s most needed, and campaign relentlessly to create a fairer society. There is a telephone helpline, an online community, and online advice and support.
Breathe Education
Breathe is a collaboration of mental health experts from the NHS, academia and local government seeking to provide innovative digital solutions and strategies for the well-being of young people.
Samaritans
