Jasmin Adebisi
Health Policy Manager, Policy Connect
September marks Sickle Cell Awareness Month, a critical time to reflect on the challenges faced by those living with sickle cell disease (SCD), a rare but devastating condition that predominantly affects Black communities.
Despite being classified as a rare disease, SCD is relatively common within Black Afro-Caribbean populations, with approximately 15,000 people affected in the UK alone. The current policy landscape for SCD and other inherited disorders is fraught with challenges; and the existing parliamentary efforts, while commendable, have proved insufficient.
Action and policy reform on sickle cell disease
The recent ‘No One’s Listening’ report by the All-Party Parliamentary Group (APPG) on sickle cell and thalassaemia exposed significant shortcomings in the care provided to SCD patients; highlighting inadequate training among healthcare professionals, a lack of investment in SCD services and low awareness of the disease. The NHS Race and Health Observatory’s Sickle Cell Digital Discovery report also identified the negative attitudes experienced by patients and the inconsistent quality of care during sickle cell crises.
Addressing blood donation shortages
The NHS recently announced a critical shortage of blood donations, particularly from Black donors, which has severe implications for SCD patients. Regular blood transfusions are often a lifeline for SCD patients, helping to prevent severe complications such as acute chest syndrome and organ damage.
The new Government’s pledge to reduce
health disparities must translate into
investment for treating illnesses such as SCD.
Funding and investment disparity
The lack of funding and investment in SCD care and research has highlighted the broader health inequalities that exist in the UK’s healthcare system. The new Government’s pledge to reduce health disparities must translate into investment for treating illnesses such as SCD.
Policy recommendations for the Government
- Comprehensive training for healthcare professionals: Mandatory training on SCD for all healthcare professionals is essential. This training should be integrated into medical and nursing education and be required for all practising clinicians.
- Increased funding and investment: The Government must allocate additional resources to SCD research, treatment and care. This includes funding for specialist clinics, access to new and effective treatments and ongoing research into potential cures.
- Standardised care across the NHS: The Government should ensure that all 42 Integrated Care Systems (ICS) across the UK commission SCD services, providing a uniformly high standard of care. This would eliminate the current postcode lottery, ensuring that all SCD patients receive the care they need, regardless of where they live.
