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.

Mary’s son requires medication to prevent excess drooling. He can’t stop himself choking, so it’s essential to minimise his saliva production. But in her diary, she explained that the medication was changed and the new type was less effective – he was having dangerous coughing fits. Mary reported this to his medical team but, in her words: “It was a feeling of, if it wasn’t witnessed by a health professional it didn’t happen.” A few weeks later, she had a meeting in her home with some of his care team. “I was just lucky that he performed,” she told me with a wry, tired smile, by which she meant he had a coughing fit in front of the professionals. His medication was swiftly reverted.

I wish Mary’s story was unique. But it’s not. Ada is 80 and also cares for her son. He’s in his 40s, and has autism and several other conditions. She had been warning medical professionals........

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