Contributing to the Cambridge School of Clinical Medicine’s Patient Voice programme
Our chair, Will, was delighted to receive an invitation to talk to Year 4 Medical Students at Cambridge School of Clinical Medicine in November 2024. This was part of their Patient Voice programme to give students the opportunity to listen to the experience of someone connected with a rare condition and to be able to ask questions. Will was able to share his family’s story and the key intervention points with the NHS where things had gone well… or not so well. The talk has been recorded as a resource for all students. So that’s 200 more potential clinicians for whom ‘cystinosis’ is not just a word in a text book. As well as getting immediate feedback, Will was delighted and surprised to receive the following gift (the below hat and note) in May 2025 from one of the students who had heard his talk. Such a kind gift and positive response. Will will be returning to Cambridge in December 2025 to try to fix ‘cystinosis’ in the heads of a fresh batch of year 4 medical students.
Dear Ellie and Will
My name is Ellie. I’m a Year 4 medical student from Cambridge and I was in the audience when your grandad came to talk to us about you at our medical school. I was really moved by your story – cystinosis is a condition I’d never heard of until then, and now I think of your story often. This hat was inspired by one of your grandad’s awareness campaigns. I loved the idea of shaving a message onto your head. This way you can carry a whole slogan, and without a trip to the barbers. Really, anyone who can knit can make one (and maybe get the size more accurate). I hope you are all well and thank you so much for coming to talk to us at Cambridge. From Ellie (2?)