NHS staff are failing to follow guidelines for providing care to sickle cell patients - and some of the advice has been branded as “unfit for purpose”.
The NHS Race and Health Observatory commissioned research, undertaken by Public Digital, to explore the lived experience of people undergoing emergency hospital admissions for sickle cell and managing crisis episodes at home.
The Sickle cell digital discovery report: Designing better acute painful sickle cell care, found that the existence of service-wide information tailored by the National Institute for Health and Care Excellence has “arguably not been designed for an ambulance, A&E and emergency setting”, and states it has been proven that this guideline is “not being used and adhered to consistently”.
Moreover, healthcare professionals have warned that the National Haemoglobinopathy Register (NHR) - a database of patients with red cell disorders - is not being readily accessed, while patients reported being treated in a way that breached prescribed instructions.
“We believe that sickle cell crisis guidelines could be improved in terms of their usability in a high-pressure emergency setting, and in terms of promoting access to them,” the report authors concluded, adding that current guidance should be adapted.
Source: The Independent, 31 January 2023
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