‘They gave her a bed to die in’: family of woman with Down’s Syndrome denied intensive care seek answers from Covid-19 inquiry

When Susan Sullivan died from Covid-19, her parents’ world fell quiet.

But as John and Ida Sullivan battled the pain of losing their eldest, they were comforted by doctors’ assurance that they had done all they could.

It was not until more than a year later, when they received her medical records, that the family made a crushing discovery. These suggested that, despite Susan being in good health and responding well to initial treatments, doctors at Barnet hospital had concluded she wouldn’t pull through.

When Susan was first admitted on 27 March 2020, a doctor had written in her treatment plan: “ITU (Intensive therapy unit) review if not improving”, indicating he believed she might benefit from a higher level of care.

But as her oxygen levels fell and her condition deteriorated, the 56-year-old was not admitted to the intensive unit. Instead she died in her bed on the ward without access to potentially life-saving treatment others received.

In the hospital records, seen by the Observer, the reason Susan was excluded is spelled out: “ITU declined in view of Down’s syndrome and cardiac comorbidities.” A treatment plan stating she was not to be resuscitated also cites her disability.

For John, 79, a retired builder, that realisation was “like Susan dying all over again”. “The reality is that doctors gave her a bed to die in because she had Down’s syndrome,” he said. “To me it couldn’t be clearer: they didn’t even try.”

Susan is one of thousands of disabled people in Britain killed by Covid-19. Last year, a report by the Learning Disabilities Mortality Review Programme found that almost half those who died from Covid-19 did not receive good enough treatment, including problems accessing care. Of those who died from Covid-19, 81% had a do-not-resuscitate decision, compared with 72% of those who died from other causes.

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Source: The Guardian, 10 July 2022