When Susan Sullivan died from Covid-19, her parents’ world fell quiet.
She would no longer burst into her dad’s room at dawn to say: “Morning, chief! Sun’s shining!” And when songs would play by Abba, Queen or Kylie, she was no longer there to blast out the words.
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 realization 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 Program found that almost half helped 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.
The Covid public inquiry will examine triage processes used in the NHS and allegations that, amid pressures on staffing, beds and PPE, access to intensive care in some areas was rationed.
The government and NHS deny that ever happened, but testimony from families such as Susan’s suggest otherwise. Elkan Abrahamson, the human rights lawyer representing Covid-19 Bereaved Families for Justice, who knows of many similar cases, said: “Our concern is that some disabled people were written off.”
For Susan’s parents it is the fear that medics made a snap judgment because of her disability that plays most on their minds. Her records say her disability and “cardiac comorbidities” – a pacemaker that had been implanted for a heart valve condition diagnosed at 16 – meant CPR was “unlikely to be successful”.
But Susan’s family, from Edgware, say she had “no physical problems” and the pacemaker was preventive. By itself it would not rule out resuscitation and, they say, it shouldn’t have excluded her from care for Covid.
For years John and Ida backed Susan when others didn’t. At her birth they were told she would never walk or talk. But with their encouragement she learned to do both, and later to dance, sing and swim, going on to compete in the Special Olympics.
“We decided: we’re going to ignore what they’ve told us and treat her as normal,” John said.
Before contracting the virus, she was as active as ever. But by the end of March 2020, at the height of the first wave, her spark began to dim.
Susan’s symptoms – a cough, headache and tiredness – had initially been mild. But on March 26, she began suffering stomach pains. “She was saying: ‘Mummy mummy mummy, my tummy hurts’,” Ida said. At 4.50am on March 27, they dialed 999.
What followed was a “nightmare”. The London Ambulance Service (LAS) was overwhelmed, with 187 calls in the hour Susan’s family called 999 – three times the usual volume. The family say they were told the ambulance was diverted twice. In all, it took more than seven hours to come.
“All Susan kept saying was: ‘Where are they? I’m waiting, Chief.’ I don’t know how many times I said to her: ‘They won’t be long, darling’,” John said.
When the paramedics arrived at lunchtime, they gave Susan oxygen and rushed her to the hospital.
Ida accompanied her daughter but was told she couldn’t stay. In the five minutes she was allowed, she says a doctor asked if Susan had anything in place for resuscitation. “I said: ‘No, it’s never come up. And if she needed it, we would want you to’,” Ida, 77, said.
After Ida left, Susan deteriorated. The next day, the hospital called to say she kept removing her oxygen mask. “Patient desaturates to 82% without mask, however if held then oxygen improves,” her notes say.
Susan’s family repeatedly asked if a relative could sit with her to hold the mask but were told it wasn’t possible.
In a French phone call, Ida tried to soothe Susan. “I said to her: ‘It’s Mummy, sweetie. Please keep your mask on, it’ll help you get better.’ And she just said: ‘Mummy, Mummy, I don’t like it.’ The next phone call was to say she was critical.”
At 3.10pm on 28 March, Susan died. Her brother Clifford, who had been allowed into the hospital in her final moments, was by her side.
John and Ida were unable to attend her funeral due to government restrictions so they paid tribute to Susan at home, joined by neighbors who stood on their doorsteps to sing and share memories. Today, Ida still cannot face going into Susan’s bedroom and John, who has late-stage neuroendocrine cancer, is reduced to tears when describing the impact of Susan’s loss.
As well as grief, Susan’s family feel anger. They believe the hospital’s refusal to let a relative stay amount to a failure to make “reasonable adjustments” – which are legally required to ensure health services are accessible for disabled people – and that the decision to deny her ICU was because of her disability.
“Had that adjustment been made, and had she been given access to intensive care, there’s a chance she could have survived,” John said. “She wasn’t given a fair crack. That will haunt us until the day we die.”
In a statement, the LAS apologised, “unreservedly” for the delays and said it was experiencing “unprecedented levels of demand”. “All triaging decisions were based entirely on clinical need,” David Macklin, deputy chief medical officer, said.
Royal Free London NHS Foundation Trust said it took the concerns raised “very seriously” and offered its “deepest condolences” to Susan’s family, whom it invited to make a formal complaint. John and Ida hope the public inquiry leads to answers about decisions made behind hospital doors, but they don’t blame the doctors and nurses. Instead they want the government held to account – for its decision making around pandemic preparation, management of NHS resources, and treatment of disabled people since austerity measures began in 2010.
“When Boris Johnson says: ‘We put our arms around everybody’, that wasn’t the case with disabled people,” John said. “They never put their arms around my Susan.”