Young people call for mental health support in epilepsy care

Over 10,000 people across the UK have signed a Young Epilepsy petition to improve access to mental health checks and support. As the world marks World Mental Health Day, young people across the country are writing to their regional healthcare leaders to ask them to ensure that every child with epilepsy has access to the support they need.

This is part of the charity’s #OnTopOfEpilepsy campaign that highlights the link between epilepsy and mental health and takes the lead from young people affected by the condition to advocate for better support.

Children with epilepsy face a wide range of physical, social, and emotional challenges, which can significantly impact their daily lives and may leave them feeling anxious, isolated and overwhelmed. An earlier survey by the charity found that three-quarters (77%) of young people said their experience of living with epilepsy significantly impacted their mental wellbeing. At the same time, more than half of them did not find it easy to talk about their feelings with friends and family.

One young person who was diagnosed with epilepsy at 11 years old, explained her reasons for writing the letter:

“I am supporting Young Epilepsy’s #OnTopOfEpilepsy campaign for better mental health support because when I was diagnosed with absence epilepsy, it had a huge effect on my mental health. I didn’t understand at the time, but I was experiencing anxiety and panic attacks due to the impact of the diagnosis and the fear of not knowing when another seizure would happen.

“Going from being a healthy child to then suddenly having seizures and experiencing medication side effects was very daunting and isolating. It had an impact on my whole life and especially my mental health.”

Young Epilepsy Chief Executive, Mark Devlin, said:

“Every child with epilepsy should have access to appropriate mental health support as part of their care, but current provision is patchy at best.

“Young Epilepsy is working with NHS England to raise awareness of this important issue, and we are pleased that NHS regions in England are already looking at the availability and accessibility of mental health screening and support for young people with epilepsy. We would encourage every NHS region to prioritise mental health support as part of children's epilepsy care.”

Children and young people with epilepsy are more at risk of experiencing mental health problems due to various factors. This could include the underlying cause of epilepsy (such as a brain injury), side effects from anti-seizure medication, as well as the anxiety, stigma and marginalisation often associated with living with this condition. 

Young Epilepsy's #OnTopOfEpilepsy campaign is looking at all elements of mental health care and wellbeing support. The charity has taken the lead from young people living with epilepsy and developed a co-created Mental Health and Wellbeing resource, compiling the best information available to help young people with epilepsy find the right mental health support for their individual needs.

Find out more about the #OnTopOfEpilepsy campaign