Focus on racism- making a difference for sickle cell disease

Principal Investigator: Professor Paresh Vyas, Professor of Haematology, Radcliffe Department of Medicine

Project Summary

In light of the international Black Lives Matter movement, individuals and organisations are re-evaluating their attitudes and approaches to addressing racism and discrimination. The NHS, like all organizations, suffers from racism within its ranks and towards patients. People who live with Sickle cell disease (SCD) are almost exclusively of Black African and Afro-Caribbean origin. This genetically inherited condition puts people at risk of childhood strokes, severe painful attacks, kidney failure and early death. To address the difficult topic of racism in a safe and collaborative environment, we propose to carry out focus groups including members of the healthcare team, people living with sickle cell disease, members of the public of Black African and Afro-Caribbean ethnic origin, and an impartial professional moderator. These will explore attitudes and thoughts about whether and how racism exists in our service, how this impacts the health of the patients, their ability to access services and seek support and advice, how this harms the long term relationship between the health care team and the patients and the general public, and what interventions could be put in place to reduce this. The overall aim is to increase understanding, reduce stigma, and improve the quality of life of people living with sickle cell disease.

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