Young People Win National Award for Epilepsy Quality Improvement

The Epilepsy12 Youth Advocates have been announced as joint winners of the Healthcare Quality Improvement Partnership Audit Heroes Award 2020 in the Volunteer of the Year category. The judges said the Youth Advocates:

“Demonstrated a very impressed programme of activities – research based and piloted in real-life settings – looking at the important area of mental health support for children & young people growing up with long term conditions.”

The Epilepsy12 Youth Advocates are a group of epilepsy experienced children, young people and families with two epilepsy specialist nurses. They volunteer together to improve care for epilepsy patients and their families, creating quality improvement projects linked to the Epilepsy12 national audit programme.

The 2020 project has focused on improving support provided to children and young people with epilepsy for their worries and anxieties. The Youth Advocates built on patient and family feedback in 2018, designed a self-assessment tool for paediatric epilepsy services looking to find out what makes “gold standard services” in supporting patients’ worries and anxieties in 2019, then started working with 8 paediatric epilepsy services in England and Wales through 2020 to pilot it.

The clinics involved different members of their team to complete the checklist, assessing their own service, processes and ideas for the future. The checklists were reviewed by the Youth Advocates who provided feedback to the clinics and arranged virtual visits. They asked each clinic to send a short film to introduce their team and show them around the clinic before the virtual visit where they asked a series of questions about their Clinic Chat Checklist. The advocates also wanted to see how clinics are coping with changes due to the pandemic.

They have also been able to identify lots of great examples of clinics doing a range of activities to support worries and anxieties within clinics, sharing what they’ve learnt from the first 8 clinics as well as explaining the process and tips to help other epilepsy services. You can read their chapter in the 2020 Epilepsy12 National Audit report for more information and watch their 2020 OPEN UK Conference presentation below:

Huge congratulations and thanks to the young people, parents and epilepsy specialist nurses for all their volunteering and winning this award!