Working together with NHS England and the South Paediatric Neurosciences Operational Delivery Network, members of our Youth Voice Network have taken part in the development of a new pilot for group mental health therapy in the Southwest of England aimed at supporting children and young people living with epilepsy.
This exciting new approach to integrated mental health support will see Acceptance and Commitment Therapy (ACT) used in virtual group therapy sessions to support young people living with epilepsy. Delivered over nine weeks, the sessions aim to equip young people with a range of skills to help them manage their mental health.
Due to the limited capacity of the new ACT pilot, young people and their families living with epilepsy are encouraged to speak to their own epilepsy teams for information and advice on mental health support available in their area.
"In my 15 years of working with young people living with epilepsy, it has always been apparent that many are facing mental health challenges without the proper support. The ACT project is an exciting opportunity to improve access to effective evidence-based therapy for young people diagnosed with epilepsy."Alex - Young Epilepsy Youth Support Coordinator
As part of a wider mental health pilot being conducted by the South Paediatric Neurosciences Operational Delivery Network, children and young people under paediatric care at University Hospital Bristol will be screened for mental health conditions through their existing epilepsy clinic and, following a suitability assessment, a number of those needing moderate support will be invited to take part in the ACT pilot.
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.
Youth Voice
Ensuring young people living with epilepsy were integral to the development of the project saw us setting up focus groups with young people and healthcare professionals around the use of digital mental health screening tools in epilepsy care. The 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.
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.Milla, Youth Voice Network Member
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.
Epilepsy and Mental Health
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.
Though there remains plenty of work to be done in this area to reach a point where every young person with epilepsy is regularly supported with their mental health, it’s inspiring to see young people taking the lead in influencing the direction and delivery of this new service. With this in mind, we are hopeful we are moving towards better access to mental health support for the more than 100,000 children and young people living with epilepsy in the UK today.Mark Devlin, Young Epilepsy CEO
