Dr Noemi Roy is a consultant haematologist at Oxford University Hospitals NHS Foundation Trust and an Honorary Senior Clinical Lecturer in Haematology at the University of Oxford – working with some of the rarest blood disorders there are. But what struck me most wasn't the information she shared on the disorders themselves, but how she thinks about the people in front of her.

She listens until patients feel safe enough to push back on her own ideas. She prints out pictures so people can see what's happening in their own body. She built a charity from scratch because her patients simply had no community to belong to (https://togetherwecan.uk/)

"Seeing your patient as a partner – even with the time you have, there's a lot we can all do in the way we listen, in the way we speak, that can make a big difference."

✦ KEY TAKEAWAYS

✦ Sickle cell is massively underfunded relative to comparable conditions – research funding runs at roughly one-seventh that of cystic fibrosis, despite affecting tens of thousands in the UK and millions globally.

✦ Racial bias in healthcare is a documented, deadly problem – the APPG report No One's Listening catalogued avoidable deaths where patients in crisis had their pain dismissed or were wrongly suspected of drug-seeking.

✦ Listening is a clinical tool, not just a courtesy – around 30% of prescribed medications are never taken, often because the patient didn't truly feel heard. Real trust-building directly affects outcomes.

✦ Peer support is medicine – Dr Roy's charity CAN grew from 20 to 120 families annually. One mother, seeing young adults with sickle cell living full lives, said it changed her entire outlook on her two-year-old daughter's future.

✦ Gene therapy exists – but at around £1 million per patient, equity of access is a serious question. Dr Roy asks whether that money wouldn't do more invested across the whole system for more patients.

✦ Prescription charges remain a concrete injustice – unlike patients with cystic fibrosis or type 1 diabetes, adult sickle cell patients in England still pay. Repeated parliamentary campaigns have failed to change it.

✦ Cultural humility is essential – assuming Western models of individual decision-making apply universally is itself a failure to listen. Some patients make health decisions as a family, and that deserves respect.

✦ Median survival age is 54 – many patients grew up being told they wouldn't live past 20 or 30. Progress is real, but nowhere near enough.

✦ Early detection saves lives simply – preventive antibiotics and regular monitoring, not cutting-edge drugs, are the foundation of good sickle cell care in the UK.

✦ Dr Roy ended up in this field almost by accident – a maternity cover gap – but gravitated naturally toward a disenfranchised population, echoing an instinct she's carried since childhood.

https://www.rdm.ox.ac.uk/people/noemi-roy

https://www.medsci.ox.ac.uk/for-staff/staff/noemi-roy

https://www.linkedin.com/in/noemi-roy-93891021/?originalSubdomain=uk

https://www.imm.ox.ac.uk/news/focus-on-racism-making-a-difference-for-sickle-cell-disease

https://togetherwecan.uk/