This Sickle Cell Awareness Month, we’re proud to publish new community-led research by Xaira Olaifa-Adebayo, produced through the ROTA Community Research Partnership (RCRP).
Sickle cell is the UK’s most common genetic condition. It mainly affects people of African and Caribbean heritage, and it remains under-researched and under-funded.
Xaira’s research looks at what happens when the healthcare system meant to help people with sickle cell ends up harming them, and at the psychological toll that harm leaves behind.
Participants described:
- Waiting an average of 3.5 hours for pain relief during a crisis, when NICE guidance says 30 minutes
- Being labelled “drug-seeking” and having to fight for pain relief
- PTSD, flashbacks, and avoiding A&E even in crisis
- Complaints met with generic letters, and no accountability
The report sets out five changes the NHS must make:
- Mental health screening and culturally competent therapists in sickle cell care
- Anti-racist, bias-aware training on pain, linked to revalidation
- An independent, accessible route to report negligence
- NHS funding for peer-led sickle cell support groups
- Enforced Individual Care Plans and joined-up teams that include mental health
Awareness is growing. Now it has to become action. Download the research report below.
Thank you to Xaira, our second-year RCRP cohort, and City Bridge Trust and Propel for making this work possible.
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