Update, 30 May 2025: These resources are now available on this website
These resources will be available in the next several weeks, culminating with a webinar in Epilepsy Week this May.
They will be packed full of practical tips, materials, cards and worksheets to use with your team and the children, young people and families who use your service. They use the Lundy Model of participation which focuses on space, voice, audience and influence as a framework to support you to plan how to develop children and young people’s voice.
These resources were developed through a year-long project funded by the Epilepsy12 Audit Programme where Epilepsy services across England took up the challenge to work with children, young people and their families locally about how their services could improve. Children, young people and their families also came together through a series of RCPCH &Us led ‘Innovation labs’ to develop the key messages, ideas and resources.
Resources that will be released over the coming weeks
- Creating a listening culture for children and young people's voice in your service, using the Lundy Model of participation framework
- Getting going, resourcing, and finding support to start on your engagement journey
- Communication card deck, designed by children, young people and families to support children and young people’s voice to have impact and influence in their care and services, to support conversations and to explore communication preferences or feelings
- Simple ideas for gaining feedback about children and young people’s feedback about your service, linked to the Lundy Model domains of Space and Voice
- Exploring who is listening and what they are doing with the feedback, using the Lundy Model domains of Audience and Influence
Who has been involved?
We put out an open call for epilepsy services to participate in this programme. The selected services/teams represented locations across the country and parts of the epilepsy pathway.
The programme included training co-delivered with the Epilepsy12 Youth Advocates, coaching and then some services going forward with engagement projects.
Thanks to the participating teams!
- Chelsea and Westminster Hospital, – Neurophysiology team
- Children and Young People’s Epilepsy Team, Hull University Teaching Hospital
- Paediatric Secondary Care Epilepsy Service, University Hospital Southampton
- Wythenshawe Hospital, Manchester Foundation Trust
- North East Child Health and Wellbeing Network (ICB)
- Medway Epilepsy Team
- Norfolk Community Health and Care NHS Trust Children's Epilepsy Nursing Service
- University Hospital Coventry & Warwickshire Epilepsy team
- Young Epilepsy
- Great Western Hospital Swindon Children's Services
- Plus 15+ families from England and Wales
You'll be able to read case studies and experiences from those involved across the next few weeks, with Hull kindly sharing their case study linked to the Lundy Model below, alongside one of the resources created by children and young people in the innovation labs, to support conversations about communication preferences.
We really look forward to launching the rest of the resources over the coming weeks. If you have any questions, ideas or would like information on our epilepsy projects, please contact and_us@rcpch.ac.uk.