Sickle cell digital discovery report: Designing better acute painful sickle cell care (31 January 2023)

Summary

Last year, the independent NHS Race and Health Observatory commissioned consultancy, Public Digital, to undertake a ‘digital discovery’ project to explore the lived experience of people undergoing acute emergency hospital admissions for sickle cell and managing crisis episodes at home.

The NHS Race and Health Observatory’s January 2023 publication – ‘Sickle cell digital discovery report – Designing better acute painful sickle cell care’ – sets out to understand the broad availability of digital products and services that currently exist. The report explores the range of technology that is in place for Accident and Emergency clinicians, red-cell specialists, and ambulance care, to aid timely support to sufferers on their emergency hospital arrival.

A number of focus groups and interviews were carried out with those that have lived experience of the disease, including patients who have suffered acute, painful sickle cell episodes during NHS A&E admissions.

Research found a lack of individual care plans in place and, more broadly, no clear definition of what constitutes an actual care plan.

A number of recommendations are set out in the report for the NHS and the wider healthcare system.