ACT Mental Health Project

A groundbreaking initiative aimed at supporting children and young people living with epilepsy is being trialled in Southwest England.

Thanks you for your tireless support on the #OnTopOfEpilepsy campaign

Last year NHS England released a new bundle of care for children and young people with epilepsy with increasing access to mental health checks and support as one of four key areas for improvement. New commitment to improvements in this area has seen funding for pilots focussed on integrating mental health care within epilepsy services approved across all regions in England.

Alex, a Youth Support Coordinator at Young Epilepsy tells us the importance of mental health in epilepsy care.

Having worked with young people living with epilepsy for 15 years, it's clear that many face mental health challenges without adequate support. The ACT project presents an exciting opportunity to enhance access to evidence-based therapy for young individuals diagnosed with epilepsy."

Alex, Youth Support Coordinator at Young Epilepsy

Research has shown young people with epilepsy are more likely to experience mental health challenges compared to their peers.

77%

of young people living with epilepsy

reported significant impacts on their mental wellbeing.
1/5

paediatric epilepsy clinics

offered mental health screening or support in 2022.

Recognising this gap, Young Epilepsy has collaborated with NHS England, particularly the South Paediatric Neurosciences Operational Delivery Network, to develop a new pilot program for group mental health therapy tailored to the needs of children and young people with epilepsy in Southwest England.

For the first time, Acceptance and Commitment Therapy (ACT) will be adapted for use with an epilepsy-focused audience. Virtual group therapy sessions will provide a supportive environment for children living with epilepsy to connect and receive guidance.

About the pilot

As part of a broader mental health pilot by the South Paediatric Neurosciences Operational Delivery Network;

✓ Children and young people in the target area will undergo mental health screenings through their existing epilepsy clinics.

✓ Those identified as needing moderate support will be referred to the ACT pilot.

✓ Over nine weeks, participants will engage in sessions covering epilepsy psycho-education and ACT techniques aimed at helping them accept negative thoughts and experiences while moving towards a fulfilling life.

The project will conclude in early 2025, after the completion of three consecutive intervention groups. Going forward, assessment of the acceptability, feasibility and effectiveness of the intervention through a series of pre and post mental health measures will be key in guiding the provision of mental health support for children and young people with epilepsy.

Milla from Young Epilepsy's Youth Voice Network tells us about the ACT Mental Health Project

Young people at the heart of everything we do

Our commitment to youth voice saw focus groups being set up with with young people and healthcare professionals around the use of digital mental health screening tools in epilepsy care. This work was carried out on behalf of NHS England and contributed to the use of digital mental health screening in pilot projects across the country looking to integrate mental health checks and support into epilepsy care. Pilots like the ACT project, are only possible thanks to brave young people sharing their experiences.

The ACT project is important to me as I have had my voice heard and created something that will help other young people with epilepsy. I have also been able to make sure that it is suitable for the young people that will take part in it as I can relate to them, and am within the age group, so I can see what they will like and what they might feel comfortable with.

My hope for the pilot is that it goes well and can become a frequent thing because it really should be. We’re not getting asked about our mental health enough and there’s a large amount of people that really need mental health support, so I believe this will be really helpful for them. And I just really hope it goes well so this can be accessible for many more people in years to come.

Milla, 15, was part of several interactive workshops