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A new report which highlights the disadvantages people with Sickle Cell face in their care has been published today, on World Sickle Cell Day.

Commissioned by the NHS Race and Health Observatory and carried out by researchers at 911½ñÈÕºÚÁÏ's School of Public Health, “” compares the care, funding and research provided for people with sickle cell disorder with that provided for people with cystic fibrosis or haemophilia.

Examining evidence from January 2010 to December 2024 it finds stark evidence of inequalities, sub-standard care and disparities faced by the sickle cell community in several areas, including a lack of specialist nurses, a shortage of treatment options, and less funding for research into the condition. 

Evidence also suggests that a breakdown in trust is having a dire effect on patients with sickle cell disorder. More likely to have poor experiences of hospital care, patients may prefer to manage episodes of severe pain at home. Despite this, hospital admissions for sickle cell rose by 42% between 2013 and 2022.

Sickle cell disorder is an inherited condition affecting red blood cells. People with the condition produce unusually shaped red blood cells that can cause health problems such as anaemia and episodes of severe pain (termed ‘pain crises’). Sickle cell can affect anyone but is particularly common in people with an African or Caribbean family backgrounds. Historically, people with sickle cell have been impacted by under-resourcing, negative experiences of care, and a lack of specialist knowledge and in-depth research into their condition - both globally and in the UK. 

, Senior Lecturer in the School of Public Health at 911½ñÈÕºÚÁÏ, said: “Stories from people with sickle cell disorder about the challenges that they face in managing their condition and getting the help they need are often heartbreaking. I believe that research can help reducing some of these challenges, but we need reliable data, adequate resources and more awareness about the condition. Hopefully, our recommendations will help to move in these directions.”

However the new report also identifies some areas of progress and opportunities, since the 2021 No One’s Listening Report of the All Party Parliamentary Group on Sickle cell and Thalassaemia and the UK Sickle Cell Society, which found broad disparities around access to specialist care and research funding, attributed to systemic bias and discriminatory practice.

Call for more investment

Aimed at NHS health care providers and commissioners, the report calls for sustained investment in specialist care to equate with sickle cell care and level the wider gains seen across cystic fibrosis and haemophilia care, and outlines evidence-based recommendations to tackle inequalities by analysis of data across a wide range of indicators. 

Across all conditions, analysis was undertaken on hospital admission data in for waiting times, length of hospital stays and estimated costs to the NHS. Survey feedback from patients was captured and used as part of evidence gathering analyses. Six practical and key recommendations for policy, practice, and research are outlined for actionable solutions, driven by the needs for better data, better support for people with sickle cell disorder, and better treatment options.

The report will be launched at an in-person event at the House of Lords, coinciding with this year’s World Sickle Cell Day. 

, Research Associate in Health Inequalities within the School of Public Health, adds: “Our work quantifies evidence of inequalities affecting people with sickle cell disorder, which seem to be partly the result of racism. There needs to be greater investment into sickle cell disorder so that these patients receive the same level of care as people with other, similar conditions. Our report sets out evidence-based recommendations to address these inequalities and ensure a better quality of life for patients.”

Key findings:

• There is a lack of specialist nurses; with only 0.5 specialist nurses per 100 sickle cell patients, compared with two per 100 for cystic fibrosis patients
• Inequalities in research funding – 2.5 times more is spent on research funding for cystic fibrosis than on sickle cell or haemophilia
• Poor hospital experience for sickle cell– in a qualitative study sickle cell patients reported managing an average of seven painful crises without medical help in the past year.
• A lack of treatment options with limited access to treatments for sickle cell – only two approved treatments, hydroxyurea and casgevy. Casgevy is only available for up to 50 patients a year.
• In a multi-country study, people with sickle cell in the UK had the highest annual hospitalisations for pain crises
• In comparison, GPs cited employing more holistic, follow up care approach for cystic fibrosis conditions with additional, large input from secondary care
• A number of other breakthroughs in cystic fibrosis and haemophilia drug development has led to multiple treatment options.

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  The full report '' is available via the NHS Race and Health Observatory website