Lockdown was easy for me, it has become my daily state more frequently throughout my life. I have a debilitating connective tissue disorder that keeps me indoors most days. It was a relief I no longer had to go out and pretend to be normal when wracked with ill-health and hidden pain. Like thousands of others with rare conditions, I’m already in a minority within a minority, marginalised by our NHS, battling increasing disability day by day. So, while many fear a second lockdown over the winter months, I haven’t gone out more often since the first one was lifted because I risk a double jeopardy – catching Covid, then being a low priority for medical care.
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.
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). I feel no ease, for myself or countless others.
England’s initial Covid strategy of herd immunity cost time and preparedness: patient numbers quickly outstripped resources, and medical staff were left to deal with harsh choices. Along with so many missing diagnoses and treatments for cancer and other serious conditions, by May the UK was found to have the most excess deaths of any country in Europe. In June, the Office for National Statistics released Covid-19 statistics that revealed that disabled girls and women (aged nine to 64) were 11.3 times more likely to die of Covid than non-disabled girls and women of the same age, and the majority of people who had died from Covid in the UK had been disabled.
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.
“The guideline says that on admission to hospital, all adults should be assessed for frailty, and that other co-morbidities and underlying health conditions are also taken into account. The frailty scoring system is not perfect, therefore Nice has always made clear that clinicians should take any decisions about care in conjunction with patients and their carers where possible, and that a holistic assessment is the best course of action.”
“Difficult” is a hollow word for the feeling of being selected to die. It’s difficult not to conclude that those with long-term conditions and disabilities, like myself, have become viewed as a sacrificial herd. There are many other high-risk categories of people. Men, overweight people and BAME communities, for example, have all been shown to have a higher risk of dying from Covid, and it would be deplorable if they were denied care on this basis. Why, then, is this acceptable for frailty? The human race has progressed to an era where diversity and inclusion enriches us all, but a deplorable Nice Covid-19 policy has instead regressed 100 years to the darkest era of social Darwinism, where medical care could be denied to those of us who are less fit and healthy.
• Patience Owen has a debilitating connective tissue disorder