The back view of a young man looking out of the window in comtemplation.


Thanks to your support...

We're thrilled to announce a major advancement in children's epilepsy care in England—a direct result of Young Epilepsy's impactful advocacy efforts. NHS England has recently launched a comprehensive 'bundle of care,' establishing standards for all young people in epilepsy services.

One of the crucial areas in the new bundle of care includes recommendations to enhance young people’s access to mental health checks and support as part of their epilepsy care. 

We highlighted the link between epilepsy and mental health back in 2021 with the launch of our #OnTopOfEpilepsy campaign.

Over 10,000 of you signed our petition to ensure every child living with epilepsy is offered mental health screening and support as an integral part of their paediatric epilepsy care and today we welcome a major step forward for this issue in England

The new recommendations state that children over the age of five years old with epilepsy should have their mental health screened routinely within epilepsy clinics. Young people with epilepsy who have been identified as requiring additional support with their mental health and wellbeing should be referred to an appropriate service to manage their mental health care. Providers should also aim for mental health care to be integrated within the epilepsy service. 

Other key areas for improvement in the new recommendations include addressing regional variations, improving referrals to surgery and other specialist treatment, and improving transition from children's to adults' epilepsy care. 

This collaborative achievement between the NHS and Young Epilepsy underscores the influential role of advocacy in shaping positive change. Mark Devlin, CEO of Young Epilepsy, co-chairs the National Children and Young People Epilepsy Oversight Group alongside NHS England, and he is delighted that young people’s experiences have helped to launch the bundle of care

Young Epilepsy remains committed to actively working with regional NHS leaders, leveraging its advocacy efforts to support the implementation of programs targeting progress in these priority areas. This includes providing information on support services, sharing reports on young people's experiences, offering guidance on youth participation, and facilitating connections for young individuals to influence epilepsy services in their localities.

"I would like to see mental health care integrated more with epilepsy care. Many epilepsy medications, including my own, often have side effects like depression, leading to suicidal thoughts, anxiety, eating disorders, and stress - all factors that trigger seizures and make you feel worse overall."
Daisy, a supporter of the campaign

Some background to the campaign...

In May 2021 we launched the #OnTopOfEpilepsy campaign to raise awareness of the links between epilepsy and mental health and call for mental health support to be integrated into children’s epilepsy care.

We surveyed over 240 young people to find out how living with epilepsy has affected their mental wellbeing. Over three quarters (77%) said it had a significant impact on their mental wellbeing, including their thoughts, feelings and how they’re able to cope with everyday life.

Less than 1 in 5 paediatric epilepsy clinics currently offer mental health screening or support. [Epilepsy12 - England and Wales]

In January 2022 we launched a petition, calling on UK healthcare leaders to make sure all children with epilepsy have access to mental health checks and support as part of their epilepsy care. Thanks to your support the petition received an amazing 10,826 signatures. On World Mental Health Day - 10 October 2022 - young people living with epilepsy wrote to healthcare leaders to share our #OnTopOfEpilepsy petition.

We’ve been working with the NHS to explore what can be done to improve support. In England, we’re working with the NHS to develop recommendations to improve access to mental health checks and support in children’s epilepsy care. We’ve met with representatives from the Scottish Government, as well as leading healthcare professionals in Northern Ireland. We’ve also offered our support to strengthen mental health services for children with epilepsy in Wales.

Young girl representing the mental health campaign, OnTopOfEpilepsy for Young Epilepsy charity.


Young people’s views and experiences have been at the heart of our #OnTopOfEpilepsy campaign. We’ve shared the findings and quotes from our mental wellbeing survey with key decision-makers and supported young people with epilepsy to help influence epilepsy services at a national and regional level. In England, for example, we’ve supported young people to participate in a national oversight group on children’s epilepsy care, which has mental health as one of its top priorities. We’ve also linked up young people with opportunities to improve epilepsy support local to them.

Being part of the NHS working groups has been amazing. It's good to know young people's voices, advocated for by Young Epilepsy, are considered by those with so much power. To speak for children not yet born is truly an honor.
Annie, a member of Young Epilepsy’s Youth Voice Network
Play video young girl with epilepsy talks about her mental health on camera

Watch our mental health film

Why did we launch the #OnTopOfEpilepsy campaign?

Epilepsy is not a mental health condition, yet children with epilepsy are four times more likely to develop mental health problems than other young people.

This is because there is more to epilepsy than seizures alone.

When asked about their experience of living with epilepsy, 77% of young people said that it had a significant impact on their mental wellbeing, including their thoughts, feelings and how they’re able to cope with everyday life.

Despite this, only 18% of paediatric epilepsy clinics offer mental health services that helped Bella so much. With your help, we plan to change that.

We are calling on UK healthcare leaders to integrate mental health screening and support into paediatric epilepsy care.

There's more to epilepsy than seizures.
Let's get on top of it.

Bella was diagnosed with epilepsy at the age of five. Frequent seizures meant she was often in hospital and isolated from her family, friends, and regular daily life. She struggled with her emotional health, feeling hopeless and angry.

Bella missed so much time at school because of seizures, surgery and a lack of understanding about epilepsy. She felt isolated, despondent and angry and just wanted to be able to do the same things as other children, like playing round friends' houses.

Children like Bella face a wide range of physical, social, and emotional challenges, all of which can have a significant impact on their daily lives and may leave them feeling anxious, isolated, and overwhelmed.

Thankfully Bella was able to benefit from a clinical trial providing mental health screening and care for children with epilepsy. This helped identify the best way for Bella to be supported.

"The mental health support Bella received made a massive difference and restored her confidence. She met other children with epilepsy experiencing similar issues and now knows she’s not alone.

The therapist suggested strategies for us to use at home which not only helped Bella but also the whole family. I can't imagine what life would be like if we didn't get this support.

It gave Bella the confidence to tell us when something wasn’t right. Even though she can still feel angry, she’s now able to talk about her feelings so they don’t overwhelm her.

"Bella now has a more positive outlook and knows that she is going to have the life she wants."
- Bella's mum

We want every child to have access to mental health screening and support that helped Bella so much.

If you have been affected by any of the issues raised in this story and feel you need support, there is help and advice available, click this link to find out more.

  • 77%

    of young people

    said that living with epilepsy it had a significant impact on their mental wellbeing, including their thoughts, feelings and how they’re able to cope with everyday life.

  • 18%

    of paediatric epilepsy clinics

    offer mental health services that helped Bella so much. With your help, we plan to change that.

Photograph of a young woman looking at her mobile phone

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