The Sickle Cell Society has published a report highlighting dangerous shortages in the sickle cell nursing workforce in England.
The Difference Between Life and Death report follows a 2021 All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia inquiry into sickle cell care which found ‘serious care failings’ in acute services and evidence of attitudes underpinned by racism. The inquiry also reported “chronic under-staffing”, with fears that the problem was on course to get worse.
Today’s report presents research which has found a disproportionate shortage of sickle cell nurses in the NHS workforce due to decades of underfunding and under-prioritisation.
Sickle Cell disorder is an inherited, long term and potentially life-threatening condition. It causes debilitating pain and multiple problems such as severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage. Approximately 17,500 people in England are living with sickle cell disorder with the vast majority being of African-Caribbean heritage.
Specialist Sickle Cell and Thalassaemia nurses undertake a wide range of vital roles for sickle cell patients including running and assisting with patient clinics, supporting people presenting at Emergency Departments in severe pain (also known as ‘sickle crisis’) and educating and advising colleagues who may not have experience of treating the condition.
The Sickle Cell’s Society’s report found an overwhelming consensus among sickle cell healthcare professionals, patients, patient carers, relatives and relevant organisations that there is an insufficient number of specialist sickle cell nurses to deliver a good standard of care to patients. This was supported by the charity’s analysis of workforce data which found that, in many parts of the country, there is a lower number of specialist sickle cell nurses than required to enable routine delivery of good care.
The Difference Between Life and Death report highlights that this shortage of specialist sickle cell nurses has a profound impact on patients and their carers, but also on the specialist nurses and their clinical colleagues. In some instances the consequences of the shortage of specialist staff are deadly. The 2021 APPG inquiry found that sickle cell care failings have led to patient deaths and that ‘near misses’ are not uncommon. Among the cases reviewed were the tragic deaths of sickle cell patients Evan Nathan Smith and Tyrone Airey, both of whose deaths were found to be avoidable and a result of oversights by insufficiently-trained healthcare professionals.
The report found that there are a range of factors which have caused the workforce shortfall including an under-prioritisation of sickle cell among healthcare leaders and, consequently, a lack of funding for specialist sickle cell nurse posts.
John James, CEO of the Sickle Cell Society, said: “While there are undoubtedly workforce challenges across all parts of the health system, the evidence in this report suggests that sickle cell is disproportionately impacted as a result of the legacy of neglect of sickle cell care.
“On behalf of everyone affected by sickle cell, we are urging NHS England to take action now to ensure all sickle cell patients have access to the specialist care they are entitled to.”
“SY”, a specialist sickle cell nurse, said: “There are definitely not enough nurses to provide safe sickle cell disease care. This is concerning because it is a condition that can deteriorate so quickly within the acute setting, and a lack of nursing staff can significantly exacerbate morbidity and mortality rates among this patient cohort.”
Janet Daby MP – Chair, All-Party Parliamentary Group on Sickle Cell and Thalassaemia added: “Dedicated, expert specialist sickle cell nurses play an absolutely crucial role in delivering care to sickle cell patients. Inadequate staffing levels for sickle cell care are a key factor in the care failings sickle cell patients encounter. Through the evidence the Sickle Cell Society has gathered for this report, it is clear that there remains an insufficient number of specialist sickle cell nurses to meet the level required to deliver a routinely good standard of care to patients.”
In light of the findings published today, the Sickle Cell Society is calling for the sickle cell workforce to be an urgent priority and given particular attention as part of the implementation of the NHS Long Term Workforce Plan.
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