The results of a newly developed survey of people living with Sickle Cell Disease (SCD) in England have revealed that information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences, and in turn, the care they receive.
The survey was a Patient Reported Experience Measure (PREM), which ran for a total of six months, from March to October 2015. It was available in three separate versions, suitable for both paediatric and adult patients, and parents/ carers of young SCD patients.
The first of its kind, the tool was intended specifically to understand the lived and healthcare experience of patients with SCD in the UK and thereby improving services by informing future service developments. Developed by the Picker Institute, the not-for-profit organisation dedicated to healthcare improvement, the research was commissioned by researchers from the NIHR CLAHRC Northwest London based at Imperial College London and Chelsea & Westminster Hospital, in partnership with the Sickle Cell Society.
Dr Subarna Chakravorty, Paediatric Consultant at King’s College Hospital NHS Foundation Trust, talks to London Live about the findings.