Sickle Cell Patient and Family Feedback Surveys

Our sickle cell surveys have been developed with patients and their families, in addition to those providing their care. The surveys are available to licence (free of charge to eligible care providers in England). They focus on patients’ needs and priorities and can be used to gather actionable feedback on care delivery.

The surveys cover:

  • Access to advice and support
  • Further information for patients and their networks (eg. friends, peers and colleagues)
  • Experiences of urgent care, hospital ward admission and outpatient clinic appointments
  • Emphasis on communication with staff
  • Involvement in care and self-management of sickle cell disease

There are three survey versions for the following groups:

  • Adults aged 16 and older with sickle cell disease
  • Parents of children aged 0-15 with sickle cell disease
  • Children aged 8-15 with sickle cell disease

The content of each survey is age-appropriate in terms of design and wording, and has been thoroughly tested. Findings from the pilot across England can be viewed here, and the development of the survey has been published here.

For further information about the survey, please email

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