People living with sickle cell disease in the UK are still receiving lower-quality care than patients with other, similarly serious genetic conditions, according to a new report from the NHS Race and Health Observatory and Imperial College London. Despite affecting a comparable number of individuals as cystic fibrosis, around 17,000 for sickle cell and 11,000 for CF, the level of support, investment, and medical attention provided to sickle cell patients falls drastically short. Experts say this disparity isn’t based on clinical need but reflects a troubling pattern of systemic neglect and racial inequality.
The report highlights some sobering statistics. For every 100 patients with cystic fibrosis, there are two specialist nurses available. For sickle cell patients, that figure drops to just 0.5. Research into CF also receives more than twice the funding of sickle cell, leading to more treatment breakthroughs and improved care outcomes. These numbers reveal more than just funding gaps; they point to an imbalance in the way different patient groups are treated within the NHS.
Perhaps most concerning is the fact that 20% of babies born with sickle cell are not seen by a specialist within the first three months of life, despite NHS guidelines requiring that at least 90% should be. Hospital admissions for sickle cell crises have risen by over 40% in the last decade, yet the infrastructure and support systems haven’t kept pace.
John James, Chief Executive of the Sickle Cell Society, called the findings “a wake-up call,” noting that these failures disproportionately impact Black communities, particularly those of African and Caribbean descent. Professor Habib Naqvi from the NHS Observatory added that these inequalities are not due to a lack of clinical need but years of under-prioritisation in healthcare planning and delivery.
Patients have also reported painful personal experiences in emergency departments, where their symptoms are often not taken seriously, and pain relief is delayed. These concerns mirror findings from a previous parliamentary inquiry that cited serious failings in emergency care and even pointed to racial bias within the system.
In response, NHS England has launched improvement initiatives in dozens of hospitals, created digital care plans, and funded public awareness campaigns. But campaigners insist much more is needed. They are calling for mandated nurse-to-patient ratios, better training for NHS staff, and increased research funding to ensure sickle cell patients finally receive the care and attention they deserve.
