Analysis

Self-care is key in sickle-cell disease

A nationwide survey of people living with sickle cell disease in England has revealed that information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences and the care they receive

A nationwide survey of people living with sickle cell disease (SCD) in England has revealed that information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences and the care they receive.

The results highlighted specific concerns about the provision of urgent and emergency care, with many people reporting less positive experiences of emergency department (ED) attendance compared to planned tertiary care.

While more than three quarters (76%) of respondents said that planned care staff know enough about SCD, less than half (46%) said that ED nurses and doctors do.

The report’s main findings include:

  • Clinical awareness and knowledge of the condition are lacking – particularly in emergency care.
  • Healthcare staff do not provide enough information externally, for example to schools and workplaces.
  • Specialist-led planned care is viewed more positively than care in urgent and
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