The award, previously won by the Youth Advocates in 2018, celebrates great public and patient involvement in the national clinical audit and patient outcomes programme (NCAPOP). This year, the award has been judged on five categories: patient and carer involvement, accessibility, communication and dissemination, sustainability and impact.
RCPCH President, Dr Camilla Kingdon said:
I want to send my deepest congratulations to the Epilepsy12 youth advocates for such a brilliant achievement.
Keeping the voices of children and young people at the core of our work at the College is essential to our success as an organisation. We have a dedicated group of Children and Young People who volunteer their time to RCPCH&Us to improve outcomes across the organisation.
Through 2021/22, the Epilepsy12 youth advocates have given 156 hours to shape Epilespy12. They have led improvement activities with families and epilepsy services and presented at five conferences during this time. I am so delighted that their hard work and dedication has been recognised with this award and I am so proud of their achievements.
What are some of the Youth Advocates’ projects?
- Two guides aimed at patients and parents using language the Youth Advocates felt would be meaningful for children and young people newly diagnosed with epilepsy to support their own care. They also co-designed a one-page leaflet describing this information.
- Clinical chat checklist, which is a self-assessment tool to help paediatric epilepsy services support children and young people with worries and anxieties related to their epilepsy. An example individual care plan to help children and young people to feel empowered and positive that their school care plans are used and kept up to date.
- The Youth Advocates have presented at five national Epilepsy12 & OPEN UK conferences to present their legacy, current projects, and future ideas.
Some reflections from the Youth Advocates:
“As youth advocates, we have made a difference by sharing our knowledge of epilepsy through our school experiences.”
“As a young advocate, I have been able to normalise epilepsy slightly more at a time where stigmas in illnesses are so important to break down.”
“The impact for me has been seeing how it started off so small with a few clinics to how well known it is nationwide, we’re helping so many patients and families.”
“As a youth advocate, I have shared the best and hardest parts of my epilepsy journey to help make it better for others.”
“We have made a difference by influencing the way paediatricians think of epilepsy.”
“As a youth advocate, I have helped start conversations about epilepsy and mental health.”
“As youth advocates, we have made a difference by influencing other health professionals and spreading the word, raising awareness and working with specialist nurses and clinics.”