People affected by health conditions bring insights and wisdom to transform healthcare – ‘jewels from the caves of suffering'. Yet traditional patient and public engagement relies on (child–parent) feedback or (adolescent–parent) ‘representative' approaches that fail to value this expertise and buffers patients' influence. This editorial outlines the emergence of ‘patient leadership' and work in the Sussex Musculoskeletal Partnership, its patient director (the first such role in the National Health Service) and a group of patient/carer partners, who are becoming equal partners in decision-making helping to reframe problems, generate insight, shift dynamics and change practice within improvement and governance work.
David Gilbert is Director of InHealth Associates Ltd, a small consultancy organisation that supports patient and public engagement.
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