My Susan was allowed to die of Covid because she had Down's syndrome, father says
Publicly available versions of some of these documents have since been deleted from the internet, fuelling families’ fears that there has been an attempt to cover up the practice ahead of the inquiry.In one such case 56-year-old Susan Sullivan, who had Down’s syndrome, was declined admission to intensive care despite being seriously ill with Covid at Barnet hospital in March 2020.
Mencap complained to NICE and the watchdog revised its guidance in April 2020 to “make clear that the clinical frailty scale should never be used to assess patients aged under 65 or patients of any age with stable long-term disabilities, for example cerebral palsy, learning disabilities or autism”, the charity said.
Denying a person potentially life-saving treatment based on their learning disability is an act of discrimination and unlawful.Dan Scorer, head of policy at Mencap said: “The pandemic affected every single person in the UK, but it had a devastating impact on people with a learning disability who were already experiencing barriers to accessing health care even before the pandemic, and dying on average 22 years earlier than people in the general population.
In a statement, NICE said the 2020 guidelines were to “maximise the safety of patients who need care during the Covid-19 pandemic”, adding: “As we made clear at the time, we agree that whether or not to sign a DNA-CPR form is an individual’s decision, and they have a right to make that decision without feeling pressurised.”
Official data from April 2020 also shows anomalies in the UK’s ICU capacity compared to countries that were experiencing similar case and death rates: for example, on 2 April there were 1,813 patients in ICU in the UK, compared to 4,053 in Italy. In 2021, a report by the Learning Disabilities Mortality Review Programme found that 81 per cent of learning disabled people who died from Covid had a DNAR notice in place, compared to 72 per cent of learning disabled who died from non-Covid conditions.