A recent parliamentary inquiry into avoidable deaths and failures of care for sickle cell patients in secondary care identified inadequate investment in sickle cell care. It recommended that the NHS Race and Health Observatory (NHSRHO) undertake a study into sickle cell care in relation to race and ethnicity. In collaboration with the National Haemoglobinopathy Panel, the UK Forum on Haemoglobin Disorders, and the Sickle Cell Society, NHSRHO has decided to commission comparative research into Sickle Cell by condition (contrasting with, for example, Cystic Fibrosis), and by geographic health unit. This work will build on US sickle cell disparity work.
It is hoped that this research provides us with a rigorous evidence base for comparing Sickle Cell care and research with other rare inherited diseases such as Cystic Fibrosis, and across geographic health units. The purpose of collecting this evidence is to identify UK disparities in sickle care and research that may be addressed by policy recommendations.