In November 2021 the The All-Party Parliamentary Group on Sickle Cell and
Thalassaemia (SCTAPPG) published the findings of their research into avoidable deaths and failings in the care and treatment of sickle cell patients within the health system.
They found that the care of sickle cell patients on general wards and within A & E was substandard.
They also found failings in joined up care for sickle cell patients and most disturbingly, they found that awareness of sickle cell disease was low among healthcare professionals across all services.
As well as low awareness there was a lack of training opportunities to make healthcare staff aware of how to manage and treat patients presenting with a sickle cell pain crisis. Unsurprisingly, the research showed that healthcare professionals generally had a negative attitude towards sickle cell patients.
Finally, the research highlighted that investment in sickle cell care was inadequate.
The report concluded, “It is a damning indictment of the way sickle cell patients have been treated that so many told us they fear, or actively avoid, accessing secondary care services. The feeling that many sickle cell patients have been left with is that that they are not a priority, that their suffering is not considered important and
that treatment that would not be accepted for other patient groups is ignored when it relates to sickle cell.”