To mark World Sickle Cell Day HIN project manager Iona de Wet writes about the impact of sickle cell disease on those who have it, and what is being done to improve care.

It is difficult to talk about sickle cell disease (SCD) without reflecting the frustration, anger and sadness of the communities who live with this inherited genetic disorder. If you haven’t read No One’s Listening I urge you to do so. It is a report commissioned by the All-Party Parliamentary Group on Sickle Cell and Thalassaemia (SCTAPPG) in response to avoidable deaths and long standing failures of care for sickle cell patients. It is a sobering read.

I became aware of SCD through my work as a project manager, supporting improvements in treatment through the MedTech Funding Mandate, a policy vehicle that has seen funding released for automated red blood cell exchange, using the innovative technology Spectra Optia. I say ‘aware’, because the cursory nod given to the condition in textbooks cannot even begin to address the challenges faced by people living with SCD: rigid, sickle shaped red blood cells, that are not great at carrying oxygen, and have a tendency to ‘stick’ together. This can lead to, amongst a number of other symptoms, distressing sickle cell crises, causing unimaginable pain. But the fact I found hardest is that, as it stands, our healthcare system fails to adequately support patients.

Contributing to efforts to improve care, therefore, feels good. South London, our ‘patch’, is home to the largest number of people of African and Caribbean heritage in the UK, a community disproportionally affected by SCD. We are working with specialist centres called Hemoglobinopathy Coordinating Centres (HCC) to improve access to automated red blood cell transfusions for these communities. Whilst this work is important, it is only a part of a much larger landscape of care.

We want to join national efforts and contribute to telling a different story about SCD, one where positive experiences become the norm rather than the exception. We recognise that this a huge job but we want to bring our skills in building and nurturing connections, implementing change and accelerating innovation to this important challenge.

What you can do

• If you are a systems leader, I urge to read this report and be an advocate for action.
• Visit the Sickle Cell Society website and learn about the experiences of people living with SCD.
• If you are an innovator with innovations that can support SCD, please get in touch.
• And if you work in the system doing work to support SCD, we are well placed to convene ideas.

We need you help to continue changing the narrative.