Disabled people with Covid may have been denied treatment

‘Do Not Attempt Resuscitation’ notices placed on those with autism or other disabilities. By Jane Merrick

Thousands of disabled people who died from Covid in the early weeks of the pandemic may have been denied intensive care unit (ICU) treatment in NHS hospitals which could have saved them, campaigners and bereaved families believe.

The Covid inquiry has been handed evidence from charities and bereaved family groups showing that Do Not Attempt Resuscitation notices (DNARs) were placed on the medical files of many people with Down syndrome, autism and other learning disabilities who were otherwise healthy before contracting the virus.

These notices, often placed without the patients’ understanding or consent were due to those with learning disabilities being wrongly classed as “clinically frail” in the NHS in the initial weeks of the pandemic in March 2020, charities say.

Baroness Hallett’s inquiry is expected to investigate whether “ward-based ceilings of care” – meaning a patient was kept on a general ward rather than admitted to an ICU, even if their condition deteriorated – were applied arbitrarily to the disabled, as well as older patients, in an effort to ease pressure on the NHS.

The evidence is likely to form a key part of Module 3 of the inquiry, which focuses on the healthcare response to the pandemic and is being held in public this autumn. The Department of Health and NHS England have long denied there were blanket protocols in place for DNARs for groups of people, and have said these policies should not be used by trusts. But i has seen a raft of guidelines, documents and reports, which are being submitted to the inquiry led by Lady Hallett (inset), suggesting that this rationing was applied by doctors and clinical staff in hospital trusts across the country in the early weeks of the pandemic, to prevent the NHS from becoming overwhelmed.

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.

Six out of 10 people who died from Covid between March and July 2020 were disabled, according to the Office for National Statistics (ONS).

On 20 March 2020, as the Covid crisis was accelerating in hospitals, the NHS watchdog Nice (the National Institute for Health and Care Excellence) issued guidance for trusts and hospitals advising them to apply a “clinical frailty scale” to decide whether patients should be admitted to intensive care.

Older and more frail patients were viewed as being less likely to survive even with critical care treatment.

But according to the learning disability charity Mencap, the original Nice guidance also suggested that those who could

not do everyday tasks like cooking, managing money and personal care independently – which are common for people with a learning disability but may be otherwise healthy – would be considered frail and as a result might not receive intensive care treatment.

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.

But in a report published later in 2020, Mencap said: “The original Nice guidance had ongoing damaging consequences.

“By the time clarification to the Clinical Frailty Scale was sent out, it came to Mencap’s attention that many perfectly healthy individuals received letters from their GPs recommending they think carefully about whether they would want resuscitation if they went into hospital or would even want to be treated in hospital at all, should they get Covid-19.”

Specialist nurses told Mencap that DNARs, also called DNACPRs (Do Not Attempt Cardiopulmonary Resuscitation), were “constantly” being put in place for people with learning disabilities “often inappropriately” and they were challenging them daily.

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: “Mencap saw DNACPRs placed on medical files of people with a learning disability that were otherwise healthy, without their full understanding and/or consent.

“Healthy people were considered medically ‘frail’ – and therefore potentially denied the same medical support as the general population – just because they required social care support due to their learning disability.”

Nice said this week that the 2020 guidelines were to “maximise the safety of patients who need care during the Covid-19 pandemic”, adding: “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.”

A report by the Care Quality Commission (CQC) regulator in 2021 found that there had not been “a national blanket approach to DNAPCR” but there was evidence that “pressures on the health and care providers had potentially led to blanket DNACPR decisions being issued for people with a learning disability, or DNACPR notices being issued without proper consultation”. A Department of Health and Social Care spokesperson said: “It is totally unacceptable for ‘Do Not Attempt CPR’ orders to be applied in any kind of blanket fashion – this has never been government policy.” NHS England was also contacted for comment.