It’s autumn 2024 and I’m talking to an A&E doctor. We’re on the refreshment break at a conference about care. He tells me that he and his colleagues keep their NHS lanyards visible when they take loved ones to medical appointments. It means the doctors listen to them. It’s understandable; they’re peers with shared training and expertise. But it’s also infuriating because I know Mary’s story and many more like it.
Mary is 58, and lives in Wales with her husband and their adult son. As a result of epilepsy in infancy, her son has global developmental delay. Practically, this means that he is non-mobile, non-verbal and takes food through a tube to his stomach. I worked with Mary and 15 other unpaid carers last year, supporting them to keep weekly diaries and interviewing them, resulting in a research report.
