Piloting a new Patient Reported Experience Measure for Sickle Cell Disease: A report of the findings

A national survey of over 600 adult and child sickle cell patients, and parents of children with sickle cell, found:

o Clinical awareness and knowledge of the condition are lacking – particularly in emergency care
o Participants reported that their friends, family and co-workers did not know or understand enough about their condition
o Healthcare staff do not provide enough information externally (for example to schools and workplaces.)
o Specialist-led (planned) care is viewed more positively than care in urgent settings such as A&E departments
o Londoners have more confidence in the care they receive than people receiving treatment outside of the region
o More negative survey responses from adolescents and young adults (aged 16-20) than other age groups – this is the age that children are likely to be transferring to adult services

Download a summary of the key findings

Download and read the full report