Our resources
These webpages are packed full of practical resources, tips and worksheets for you to use with your team and the children, young people and families who use your service. It uses the Lundy Model of participation 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 where Epilepsy services across England took up the challenge to listen more to children, young people and their families about how their services could improve. Their experiences and tips are contained throughout the downloads and webpages. Children, young people and their families also came together through a series of RCPCH &Us led ‘Innovation labs’ to develop key messages, ideas and resources.
How to use these resources
- 1. The Lundy model: creating a listening culture in your service
-
This page introduces you to the Lundy Model of participation framework.. We look at how you can apply this framework for children and young people’s voice to your epilepsy service.
- 2. How to get started: Getting going, resourcing and finding support
-
This tool helps you work out how to get this work off the ground. What will be your focus? Who do you need to get on board? In this section you will find a worksheet to use with your team to help you plan your activity. The Epilepsy services in our pilot, who were able to develop their engagement work, found ways to lever in more resources or support. Check out their tips and ideas on how to go about this.
- 3. Communication cards: Supporting children and young people’s voice in their care
-
Children, young people and parents and carers have devised a set of cards to help you facilitate children and young people’s voice in their care and your service. The easy-to-use card set has conversation starters, topics for discussion, communication preference cards and feelings cards.
These cards can be used by children, young people, parents, carers and clinicians to help support communication and make tricky conversations easier.
- 4. Space and voice: Simple ideas for gaining feedback about children and young people’s feedback about your service
-
Head to this resource for ideas about how to get feedback and involvement from children and young people about your service. From weaving activities into your existing clinic time to hosting specific events to gain feedback, this part of the resources has ideas and ways to develop engagement activities in your service.
- 5. Audience and influence: Who is listening and what are they doing with the feedback?
-
Last but most importantly Resource 5 provides you with ideas and examples of how your service can build the feedback and suggestions from children, young people and families into your service planning and delivery and ensure they are kept up to date with what is happening next.
A note on language
At RCPCH we use the term engagement to mean active involvement of children and young people in decision making processes. Sometimes you will also hear this referred to as children and young people’s participation. Other terms commonly used are co-production, consultation, active involvement or Patient, Public Involvement and Engagement (PPIE).
It is important to agree as a team the language you use and to establish your common understanding. When working collaboratively across sectors and with children, young people and families, it can be useful just to share your understanding of these terms so everyone is on the same page.
Thanks to everyone who took part in this project.
Children, young people and families:
- Children, young people and families from across England who took part in Innovation Labs in London and Newcastle.
- RCPCH &Us volunteers Owen and Demi who helped to train the hospital units.
- The Epilepsy12 Youth Advocates who joined the Innovation Labs and supporting the thinking for this project.
Hospitals who completed projects and/or shared case studies:
- Dr Sutapa Biswas (Consultant Neurophysiologist) at Chelsea and Westminster Hospital, – Neurophysiology team
- Christine Bennet (Senior Epilepsy Nurse) and Dr Sandhya Jose (Consultant - specialist interest in Epilepsy), Children and Young People’s Epilepsy Team, Hull University Teaching Hospital
- Marisa Findlay (Epilepsy Youth Development Worker) and Dr Kate Pryde (Consultant Paediatrician). Paediatric Secondary Care Epilepsy Service, University Hospital Southampton
- Laura Crowther (Paediatric Epilepsy Specialist Nurse), with support from Dr Deepa Naga (Consultant with a specialist interest in Epilepsy), Wythenshawe Hospital, Manchester Foundation Trust
- Louise Dauncey (Epilepsy lead), Dr Ramesh Kumar (Clinical Lead for Epilepsy) and Sophie Gilmour-Ivens, (Paediatric Epilepsy Nurse – strategic lead) from the North East Child Health and Wellbeing Network ICB.
Hospitals and organisations who joined training sessions:
- Teresa McIntyre (Paediatric Epilepsy Nurse Specialist) at Medway Epilepsy Team
- Lisa Pedder (Lead Children's Epilepsy Specialist Nurse) at Norfolk Community Health and Care NHS Trust Children's Epilepsy Nursing Service  
- Sophie Burns (Paediatric Epilepsy Nurse Specialist) at University Hospital Coventry & Warwickshire
- Kirsten McHale (Epilepsy Nurse Consultant) with Young Epilepsy
- Sue Mulhall (Lead Children's Epilepsy Nurse) at Great Western Hospital Swindon Children's Services.
We hope you all enjoy and share these resources! For any further information, advice or guidance, please contact and_us@rcpch.ac.uk.
See the resources from this project in the Related content box!