Case Studies:

Sickle Cell Society

  • Health

April – November 2021

In 2021, we worked with the Sickle Cell Society to shine a light on the experiences of sickle cell patients by coordinating an inquiry and writing a hard-hitting report.

IMPACT

We supported the Sickle Cell Society and the All-Party Parliamentary Group on Sickle Cell and Thalassaemia to run an inquiry into sickle cell care, comprising three oral evidence sessions and a call for written evidence, which resulted in over 100 submissions.

Based on the extremely powerful and concerning evidence we received, we produced a report, No One’s Listening, which detailed the experiences and perspectives of sickle cell patients, including widespread consensus that racism is a factor in care failings around sickle cell, a condition that primarily affects people with African or Caribbean heritage. 

The report received prominent media coverage, including by the BBC Radio 4 Today programme, ITV News, Channel 4 News, The Guardian, The Independent and the New Statesman, among others.

During a debate in Parliament on the report, the Shadow Social Care Minister Liz Kendall described the report as “one of the most powerful, serious and substantial reports I have read in a long time in this place and while working in the health and care field”.

The report has prompted a response to the long-overdue need for action around sickle cell care, with the NHS launching a wide-ranging review of the sickle cell care pathway, which has already resulted in the launch of a sickle cell awareness campaign and the establishment of new specialist NHS sickle cell centres across the country.

We have now been commissioned by the Sickle Cell Society to conduct a follow-up project, focused on the sickle cell nursing workforce.

“It has been an absolute pleasure working with Principle. Our Consultant, Aidan Rylatt, hit the ground running and was an integral part of the team.

Our commission was a major piece of work involving people living with sickle cell from across the country, senior healthcare professionals and cross-party Parliamentarians. 

Principle helped us deliver our excellent “No One’s Listening” Report. The report was of a very high quality, receiving many plaudits nationally and internationally. Thank you Principle. This is the most comprehensive report on sickle cell care that our All-Party Group has ever published.”

John James, Chief Executive 

The Sickle Cell Society supports and represents people affected by sickle cell disorder to improve their overall quality of life.

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