She would no longer enter her father’s room at dawn to say, “Good morning, chief! The sun is shining!” And when they played songs by Abba, Queen or Kylie, he was no longer there to mouth the words. But as John and Ida Sullivan grappled with the pain of losing their eldest, they were comforted by doctors’ assurances that they had done all they could. It wasn’t until more than a year later, when they received her medical records, that the family made a devastating discovery. These indicated that, despite Susan being in good health and responding well to initial treatments, doctors at Barnet Hospital had concluded that she would not make it. When Susan was first admitted on March 27, 2020, a doctor had written on her treatment plan: “ITU (Intensive Care Unit) Review if not improving,” indicating that he believed she could benefit from a higher level of care. But as her oxygen levels dropped and her condition worsened, the 56-year-old was not admitted to intensive care. Instead, she died in her bed in the ward without access to potentially life-saving treatment that others received. Hospital records, seen by the Observer, spell out the reason Susan was excluded: “The ITU was reduced due to Down’s syndrome and cardiac co-morbidities.” A treatment plan that states she was not to be revived also states her disability. For 79-year-old John, a retired builder, this realization was “like Susan dying all over again”. “The reality is that the doctors gave her a bed to die because she had Down 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 who have been killed by Covid-19. Last year, a report by the Learning Disabilities Mortality Review Program found that almost half of those who died from Covid-19 did not receive adequate treatment, including problems accessing care. Of those who died from Covid-19, 81% had a decision not to resuscitate, compared to 72% of those who died from other causes. The public inquiry into Covid will examine the triage procedures used in the NHS and claims that, amid pressures on staff, beds and PPE, access to intensive care in some areas was limited. Ida and Susan on holiday in 2019. Photo: Sophia Evans/The Observer The government and NHS deny it ever happened, but testimonies from families like Susan’s suggest otherwise. Elkan Abrahamson, the human rights lawyer representing Covid-19 Bereaved Families for Justice, who is aware of many similar cases, said: “Our concern is that some disabled people were written off.” For Susan’s parents, it is the fear that the doctors made a snap judgment because of her disability that is most on their mind. Her records say her disability and “cardiac co-morbidities” — a pacemaker 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 preventative. By itself it would not have precluded resuscitation and, they say, should not have precluded her from Covid care. For years John and Ida supported Susan while others did not. At her birth, they were told she would never walk or talk. But with their encouragement she learned to do both, and later dance, sing and swim, going on to the Special Olympics. “We decided: we’re going to ignore what we’ve been told and treat her as normal,” John said. Before she contracted the virus, she was as active as ever. But by late March 2020, at the height of the first wave, her spark began to fade. Susan’s symptoms – cough, headache and fatigue – were initially mild. But on March 26, he started suffering from stomach pains. “She was saying, ‘Mummy mummy, my tummy hurts,’” Ida said. At 4.50 am on March 27, they called 999. What followed was a “nightmare”. The London Ambulance Service (LAS) was overwhelmed, with 187 calls in the hour when Susan’s family called 999 – three times the usual volume. The family says they were told the ambulance had been diverted twice. In total, it took more than seven hours to arrive. “All Susan kept saying was, ‘Where is she?’ I’m waiting, chief.” I don’t know how many times I said to her, “They won’t be long, love,” John said. When paramedics arrived at noon, they gave Susan oxygen and rushed her to hospital. Susan’s family photos of John and Ida. Photo: Sophia Evans/The Observer Ida accompanied her daughter but was told she could not stay. In the five minutes she was allowed, she says a doctor asked if Susan had anything to resuscitate. “I said, ‘No, it’s never come up. And if he needed it, we would like it,” said 77-year-old Ida. After Ida left, Susan got worse. The next day, the hospital called to say that he was still removing her oxygen mask. “Patient desaturates to 82% without mask, however if held then oxygen improves,” her notes state. Susan’s family repeatedly asked if a relative could sit with her to hold the mask, but were told it was not possible. In a frantic phone call, Ida tried to calm Susan down. “I said to her, ‘It’s mum, honey. Please keep your mask on, it will help you improve.” And she just said, “Mom, mom, I don’t like it.” The next phone call was to say she was critical.” At 3.10 p.m. on March 28, 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, with neighbors stopping by their doorsteps to sing and share memories. Today, Ida still can’t face going into Susan’s bedroom, and John, who has terminal neuroendocrine cancer, tears up when he describes the impact of losing Susan. In addition to grief, Susan’s family feels anger. They believe the hospital’s refusal to allow a relative to stay amounts to a failure to make “reasonable accommodations” – which are required by law to ensure health services are accessible to people with disabilities – and that the decision to deny her ICU due to her disability. “Had that adjustment been made and had she been given access to intensive care, there is a chance she would have survived,” John said. “She wasn’t given a fair crack. This will haunt us until the day we die.” In a statement, LAS apologized “unreservedly” for the delays and said it was facing “unprecedented levels of demand”. “All measurement decisions were based entirely on clinical need,” said David Macklin, deputy chief medical officer. The Royal Free London NHS Foundation Trust said it took the concerns raised “very seriously” and extended its “heartfelt condolences” to Susan’s family, who it called on to make a formal complaint. John and Ida hope the public inquiry will lead to answers about decisions made behind hospital doors, but they don’t blame the doctors and nurses. Instead, they want the government to be held to account – for its decision-making on pandemic preparedness, the management of NHS resources and the treatment of disabled people since austerity measures began in 2010. “When Boris Johnson says, ‘We’re putting our arms around everyone,’ that wasn’t the case with disabled people,” John said. “They never put their arms around my Susan.”