SCORE – Sickle cell out research, resources and engagement
SCORE – Sickle cell Outreach, Resources and Engagement
2025 – 2026
The challenge
Sickle Cell Disease (SCD) is a lifelong inherited blood condition that begins in childhood and disproportionately affects people from ethnic minority communities. People living with SCD often face physical health challenges, mental health impacts, difficulties accessing services, and wider social and economic pressures.
About the project
The SCORE project was developed in response to concerns raised directly by Liverpool’s SCD community. The project team worked with patients, carers, community organisations and healthcare professionals to design a model for community-based “sickle hubs” that could provide practical support outside traditional hospital settings.
Our approach
Over 15 months, the project used a community-led approach that placed people with lived experience of SCD at the centre of decision making. Activities included:
- Review of international evidence on community SCD support services
- Mapping of SCD hotspots across Liverpool
- Community survey (92 responses)
- Interviews and focus groups with patients, carers and professionals (136 participants)
- Consensus process to agree recommendations for what SCD hubs should offer