Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how many sickle cell patients who had complications due to sickle cell listed as their cause of death experienced haemolysis in the period before their death in the last 12 months.

The Department does not hold this information. NHS England does not hold or have access to data that would accurately represent the number of sickle cell patients that have died due to complications due to sickle cell in the last 12 months, or how many of those patients experienced haemolysis in the period before their death in the last 12 months.

The National Disease Registration Service, part of NHS England, is expanding its rare disease collection to include patients with sickle cell disorder (SCD) in England. This will form a comprehensive national dataset to enable improved understanding of patient pathways for SCD, support planning and commissioning of services and improve patient outcomes.