No one's listening: an inquiry into the avoidable deaths and failures of care for sickle cell patients in secondary care (APPG on Sickle Cell and Thalassaemia, November 2021)

Summary

This report was triggered by the Coroner’s report into the death of Evan Nathan Smith in North Middlesex hospital. Evan was a young man with his whole life in front of him. The mistakes made in his treatment leading to his early and avoidable death brought into sharp focus the lack of understanding of sickle cell, the battles patients have to go through to get proper treatment and the terrible consequences which can come about as a result.

Following the publication of the Coroner’s report, the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia held three evidence sessions, hearing from patients, clinicians and politicians. This report is a result of that evidence.

The findings in this report reveal a pattern of many years of sub-standard care, stigmatisation and lack of prioritisation which have resulted in sickle cell patients losing trust in the healthcare system that is there to help them, feeling scared to access hospitals, expecting poor treatment from some of those who are supposed to care for them and fearing that it is only a matter of time until they encounter serious care failings.

Content

Key findings from the inquiry include:

• evidence of sub-standard care for sickle cell patients admitted to general wards or attending A&E departments (including a widespread lack of adherence to national care standards)
• low awareness of sickle cell among healthcare professionals and clear examples of inadequate training and insufficient investment in sickle cell care
• frequent reports of negative attitudes towards sickle cell patients and a weight of the evidence suggests that such attitudes are often underpinned by racism.

The inquiry also found that these concerns have led to a fear and avoidance of hospitals for many people living with sickle cell. 

While the inquiry did find that specialist haemoglobinopathy services are generally felt to be of a good standard, the report shows that this is far from the case on general wards or A&E departments. Care failings have led to patient deaths and ‘near misses’ are not uncommon. The inquiry heard that awareness of sickle cell among healthcare professionals is low, with sickle cell patients regularly having to educate healthcare professionals about the basics of their condition at times of significant pain and distress and that there is routine failure to comply with national care standards around pain relief when patients attend A&E.