First results announced from trial of blood test for cancer
01 June 2026
Publish date: 19 May 2026
A youth-led project presented at the Royal College of Paediatrics and Child Health (RCPCH) conference in May 2026 highlights the benefits of placing children and young people (CYP) living with sickle cell disorder (SCD) at the centre of service design and improvement can have.
The poster, “From Patients to Partners: A Youth-Led PPIE Project in Sickle Cell Services”, was presented by Dr Yasmin Graham, Stuart McGunnigle and Dr Andrea Leigh from UCLH.
The project explored how patient and public involvement and engagement (PPIE) approaches can better capture the voices of CYP living with SCD, alongside the perspectives of their parents and carers. Despite national commitments to improving SCD services, young people are still rarely involved in shaping care pathways and service priorities.
Using a series of four focus groups, the team adopted youth-friendly and trauma-informed engagement methods facilitated by youth engagement charity Renaissance Foundation. Participants took part in guided discussions and priority-setting exercises designed to identify key areas for improvement.
The findings revealed clear differences in priorities between young people and parents or carers. Young people highlighted the importance of medication and treatment, improving hospital experiences and increasing awareness of sickle cell disorder. They also stressed the need for healthcare professionals to better understand the lived experience of SCD. Parents and carers placed greater emphasis on financial support, quality of care, advocacy and support within schools.
Across all groups, participants identified a significant need to improve awareness and understanding of sickle cell disorder among healthcare professionals, educators and the wider public.
This project demonstrates a replicable model for meaningfully engaging young people and families in service improvement. Embedding co-production into SCD services is essential to ensuring that lived experience directly informs the design and delivery of care. The work reinforces the growing recognition that children and young people should not simply be recipients of care, but active partners in shaping the services they use.
With thanks to Dr Yasmin Graham, Stuart McGunnigle and Dr Andrea Leigh for their work on this project.
