A frailty index is rationing treatment for older and disabled people who catch coronavirus, says Patience Owen. Patience has has a debilitating connective tissue disorder and, like thousands of others with rare conditions, is already in a minority within a minority, marginalised by our NHS, battling increasing disability day by day.
Back in March, without consultation and days before the first lockdown, the Clinical Frailty Scale (CFS), a worldwide tool used to swiftly identify frailty in older patients to improve acute care, was adapted by the National Institute for Health and Care Excellence (NICE). It asked NHS staff in England to score the frailty of Covid patients. Rather than aiming to improve care, it seems the CFS – a fitness-to-frailty sheet using scores from one to nine – was used to work out which patients should be denied acute care. Nice’s new guidelines advised NHS trusts to “sensitively discuss a possible ‘do not attempt cardiopulmonary resuscitation’ decision with all adults with capacity and an assessment suggestive of increased frailty”.
"Checking the scale, I found I would score five, the 'mildly frail' category, and therefore should I get Covid I could be steered towards end-of-life care. Bluntly, if I catch the virus, the NHS may help me to die, not live," says Patience.
By early April, there was a proliferation of illegal “do not resuscitate” (DNR) notices in care homes for people with learning disabilities, and for older people in care homes and in hospitals. Many acutely ill patients stayed at home with Covid symptoms in the belief that they risked being denied care in hospital. Following warnings by the healthcare regulator, the Care Quality Commission, and other medical bodies, that the blanket application of the notices must stop, and legal challenges by charities, exclusions were made to the NICE guidelines.
These included “younger people, people with stable long-term disabilities, learning disabilities or autism”. Yet the guidelines remain in place, in spite of the fact that they appear to contravene the Human Rights Act (including the right to life, article 2, and the right to non-discrimination, article 14).
A spokeswoman for NICE says it is “very aware of the concerns of some patient groups about access to critical care, and we understand how difficult this feels. Our COVID-19 rapid guideline on critical care was developed to support critical care teams in their management of patients during a very difficult period of intense pressure."
“'Difficult' is a hollow word for the feeling of being selected to die," says Patience. "It’s difficult not to conclude that those with long-term conditions and disabilities, like myself, have become viewed as a sacrificial herd." Read full story
Source: The Guardian, 29 September 2020