Sickle cell disease patients in England feel neglected, report says

<span>Photograph: Science History Images/Alamy</span>
Photograph: Science History Images/Alamy

People in England with sickle cell disease are experiencing “neglect” and “poor hospital experiences that can cause avoidable harm”, according to a report.

The study, commissioned by the NHS Race and Health Observatory and undertaken by Public Digital, explored the experiences of people who had undergone acute emergency hospital admissions for sickle cell, as well as managing crisis episodes at home.

The research found sickle cell care had a “limited amount of technology” or “dedicated health sites” to support patients in a crisis.

Furthermore, people with sickle cell who took part in the study reported feeling that their crisis pain was undermined while expressing frustration at feeling deprioritised by the healthcare system.

Sickle cell disease changes the shape of blood cells into crescents, hindering blood flow. Sufferers experience severe painful episodes, which can require hospital admission. Life expectancy can be 20 to 30 years shorter than in the general population. The condition is more prevalent in people with an African or Caribbean family background, according to the NHS.

Part of the study’s conclusion was that the NHS should “redesign the operating model of sickle cell services”.

Mary Adeturinmo, a 29-year-old student from London who participated in the study, said she often felt “at the mercy of healthcare professionals who are unaware of what is required to treat a person living with sickle cell”.

She added: “My overall care experience in the NHS has varied from excellent to very questionable. Due to my long-term health condition, I have had multiple hospital admissions. I was ecstatic to find Public Digital’s research project. This research is significant as there needs to be a more diverse, in-depth analysis and understanding of the condition and the impact felt by the people living with this condition.”

The report follows a watershed inquiry by the all-party parliamentary group on sickle cell and thalassaemia published in November 2021 that found there were “serious care failings” in acute services for sickle cell as well as evidence to suggest such attitudes are often underpinned by racism.

Dr Habib Naqvi, the chief executive of the NHS Race and Health Observatory, said: “Alongside the data, the voices of those with lived experience provide stark feedback on the often substandard care received whilst trying to cope with this chronic disease. Thanks to their input, we have now agreed a series of targeted actions and recommendations for healthcare providers to take forward across the NHS.”

John James, the chief executive of the Sickle Cell Society, said: “It is not acceptable that the NHS continues to provide substandard, variable care to those in pain during a sickle cell crisis. Patients are not receiving acceptable, reliable levels of care, with one too many reporting poor experiences in accessing timely medications to reduce their crisis episodes.

“The Sickle Cell Society looks forward to progressing the recommendations from Public Digital and the Race and Health Observatory to solve these historic and debilitating health inequalities which continue to disrupt the lives of people living with sickle cell disorder and their families.”