Audit Heroes 2020 Case Study: Epilepsy 12

This is the first of a series of Audit Heroes 2020 case studies to share best practice and promote excellence.

The Epilepsy12 Youth Advocates were the joint winners of the National Volunteer of the Year Award 2020. They are a group of epilepsy-experienced children, young people and families with two epilepsy specialist nurses supported by the Royal College of Paediatrics and Child Health (RCPCH). They volunteer together to improve care for epilepsy patients and their families, creating quality improvement projects linked to the Epilepsy12 national clinical audit programme.

Epilepsy12 Youth Advocates

What did the youth advocates do?

Their ambition was to work to improve support provided to children and young people with epilepsy for their worries and anxieties. Based on research, children and young people wanted more support in helping to explain questions like “Why me?” and “When will it stop?”

The Youth Advocates designed a self-assessment tool, a Clinic Chat Check List, for paediatric epilepsy services looking to find out what makes the “gold standard” in supporting patients’ worries and anxieties.

What happened?

The Youth Advocates worked with 8 paediatric epilepsy services in England and Wales. The services involved members of their team to complete the checklist assessing their own service.

Next the Epilepsy 12 Youth Advocates ‘virtually’ visited the clinics. They asked each clinic to send a short film to introduce their team and show them around the clinic before visiting them to ask a series of questions about their Clinic Chat Check List. The advocates also wanted to see how clinics are coping with changes due to the pandemic.

After the visits the Epilepsy 12 Youth Advocates said:

‘It was great that they were talking about the same things we were talking about’

‘Before the visits I was worried they might talk in ways I wouldn’t understand so it was great that we talked the same language’

What did we learn?

There were lots of great examples of clinics doing a range of activities to support worries and anxieties, with clinics engaging well with the self-assessment process and some involving patients!

When the Youth Advocates visited the clinics they heard more detail about what clinics were currently doing and what their plans were for the future.

After the visits the Epilepsy 12 Youth Advocates said:

‘All the clinics approaches were different but they all had good attitudes and care about patients’

‘It felt nice to give good feedback to clinics. Communication worked both ways’

What happens next?

The Youth Advocates will provide each clinic with an action plan before creating a report and film which can be shared with all epilepsy clinics about their findings. We aim for the clinic chat check list to be made available so that many more clinics can benefit from using it.

We also plan to use the information gathered to create new projects for the Youth Advocates to improve care for epilepsy patients and their families.

For more information about the Epilepsy12 Youth Advocates, please visit Epilepsy12 &Us or email us at [email protected]