Chronic Illness and Covid-19
ALEXANDRA POPESCU
Essex, United Kingdom 15/01/2021
Since the start of the COVID-19 pandemic, the public has been repeatedly reassured that COVID ‘only’ causes death or serious illness in the elderly and those with so-called ‘pre-existing conditions’[1]. The chronic illness and disabled community have watched in horror[2] as both officials and members of the general public have emphasised the low mortality rates and the minor risk of serious illness posed to the general ‘healthy’ public. In the crucial first weeks of the pandemic, the UK government, taking advantage of its chief scientific advisor’s suggestions for following ‘herd immunity’, were quick to advance and defend a policy that would knowingly sacrifice (a projected minimum of) 250,000 lives. These were the lives of the elderly, the disabled and those with ‘underlying conditions’. The rationale for accepting this sacrifice was the need to protect the economy and the mental health of those who are ‘healthy’[3]. The policy was only abandoned when it emerged that it would overwhelm the NHS. The delay that the advancing of this policy caused, however, cost thousands of lives, even though the ‘herd immunity’ strategy was subsequently abandoned[4] as both unattainable from a scientific point of view, and self-defeating from an economic point of view. In its place, a mitigating strategy was adopted that sought to flatten the curve rather than suppress the virus (the latter successfully pursued by other countries). This essentially amounted to social engineering, a survival-of-the-fittest approach. For example, a journalist writing in The Telegraph argued that the ‘herd’ ought to be ‘culled’[5] of people who are “costly” to social security, or, as a former nurse put it, who are ‘bed blockers’.[6] With one in five people of working age in the UK disabled[7], and around 15 million people in England and 1 million in The Republic of Ireland with chronic health conditions[8], advocates of such a policy are, seemingly, quite prepared to see a significant proportion of their fellow citizens sacrificed.
As deaths and hospitalisations break new records, and as the NHS is collapsing under the weight of poor planning and chronic underfunding, policies are being introduced that once again sacrifice those with ‘underlying health conditions’. Spring saw the introduction of illegal ‘do not resuscitate’ orders being imposed on disabled patients’ records, even for conditions that have no bearing on the impact of Covid-19 on the patient, such as blindness or learning disabilities[9]. We are now facing a second wave with a healthcare system operating in ‘disaster medicine’[10] mode. The rationing of medical care is being guided by such factors as the presence co-morbidities (the medical term for ‘underlying medical conditions’), age, and ‘mobility’[11]. Those less mobile, or who have medical conditions could be denied life-saving admission to intensive care. In England during the second wave, patients are now being put into hotels because of a lack of beds[12]. Despite early reports that healthcare systems would be under unmanageable strain during the first wave[13], not enough was done to prevent this situation.
THE POLITICS OF PUBLIC POLICY
That the ableist standpoint of prioritizing the healthy has been the basis of official public messaging and a starting point for policy has come as no surprise to disabled and chronically ill people. What the pandemic and the ensuing governmental response in the UK and Ireland lay bare are entrenched and pre-existing inequalities: decades-long cuts to essential public services and public healthcare systems, and insufficient sick pay. These exist on a background of prejudice against those deemed insufficiently ‘economically active’ and therefore unworthy of help from a capitalist system that values life only insofar as it works towards its profit. With ‘long-Covid’ now being recognised as a major consequence of infection[14], the irony is that the pandemic is creating a whole new category of chronically ill and disabled patients.
It is by now well established that the pandemic has hit the disabled and chronically ill population the hardest[15]. According to Public Health England, disabled people are 6 times more likely to die of Covid-19 than those without disabilities. People with specific learning disabilities are 30 times more likely to die. New research suggests two thirds of Covid-19 deaths have been disabled people.[16] Officials have attributed the figures to higher rates of pre-existing conditions amongst those with disabilities (for instance, obesity, high blood pressure and diabetes). What the literature citing pre-existing conditions as risk factors for Covid-19 fails to emphasize, however, is that a lot of the inequalities disabled people are subject to, which make them more susceptible to death and serious illness from Covid-19, are structural and intersectional. Death rates go up if one takes into account race (black people are four times more likely to die of Covid-19[17]), gender, and poverty (Covid-19 has disproportionately affected poor communities). A lot of disabled and chronically ill people also tend to suffer from financial insecurity[18]. In spite of the fact that research suggests men are biologically at higher risk of death and serious illness if infected, women form a higher proportion of the disabled community than men in the UK: 23% of the general population, as opposed to 19%.[19] Data also shows that women are 50% more likely to suffer from ‘long-Covid’ than men[20], thus being more at risk of becoming chronic illness patients. All of these factors are, of course, related. Disabled women are more economically and socially marginalized than disabled men, for instance. In spite of a paucity of studies looking into the magnitude and effects of what is being referred to as a ‘double discrimination’[21], inquiries have been launched into what disabled women face, as well as what female medical patients in general face.[22] In other words, the pandemic compounds already unacceptable levels of inequality experienced by disabled people (and female and POC disabled people in particular) and the chronic illness community. In spite of early assurances by the UK government, the pandemic has certainly not been the ‘great leveler’ it was touted as being[23].
UNDERSTANDING CHRONIC ILLNESS AND DISABILITY
So, who counts as a chronic illness patient, or as a disabled person? Unsurprisingly, these are not homogenous categories. Whilst the latter is more clearly defined,[24] chronic illness is often a grey area of misdiagnosis, delayed diagnosis and healthcare systems not equipped to deal with chronic illness[25]. Many medical conditions are often disabling, yet are not covered under the official Disability Act. This is due to a combination of factors, including decades-long cuts to disability benefits and a poor medical understanding of certain medical conditions, such as fibromyalgia[26].
This poor understanding of certain medical conditions has had an enormous impact during the pandemic, when people more vulnerable to dying or being seriously ill from Covid-19 have been unable to shield, having failed to qualify as ‘clinically vulnerable’. They have been forced, instead, to continue working, often in frontline, high-risk environments, have been denied food parcel deliveries in schemes initiated by the government, and have been unable to secure supermarket food delivery slots reserved for the clinically vulnerable[27]. The government’s list of at-risk people has been unnecessarily restrictive[28] from the outset of the pandemic. Despite lobbying from UNISON, the UK government failed to recognize the heightened risk to disabled and chronically ill people. Two categories were instead created: ‘clinically vulnerable’ and ‘extremely clinically vulnerable’, neither with any basis in equality legislation[29]. The list of ‘at risk’ people excludes, for instance, people whose white blood cells are low from an unexplained cause (white cells being a key component in the immune system’s fight against any infection) and most autoimmune conditions, many of which impair the immune system’s fight against external pathogens. Neuro-degenerative conditions known to affect cell production, such as pernicious anaemia are not included, but ‘hereditary and degenerative’ diseases of the nervous system are. [30] In spite of emerging evidence that autoimmunity, for instance, is a predisposing factor to serious illness or death from Covid[31], no adjustment has been made to official recommendations. Worse still, official foundations and charities[32] have gone to great lengths to reassure patients that their condition does not make them more vulnerable to Covid-19. Whilst it is understandable that these foundations would seek to provide reassurance for worried patients, medical advice has failed to reflect new scientific evidence that clearly shows an association between some of these conditions and severe Covid-19 infection[33].
VACCINATION CAMPAIGNS
The same exclusion now applies to vaccination. Vaccination campaigns have focused on an age-tiered approach that has also prioritized health and social care workers. Whilst this is understandable, those with co-morbidities that are poorly understood, poorly recognised and poorly treated are once again finding themselves overlooked. Similarly, disabled people are now finding themselves placed in highly variable vaccination priority groups by a system focused on age. In keeping with the government’s prioritisation of those who are ‘extremely vulnerable’, patients with immune-compromising conditions such as diabetes, high blood pressure and obesity, as well as autoimmunity, are being scheduled in groups that will have them waiting months for a vaccine. The assumption is that these groups can simply continue shielding. But this is an impossible demand on a group with the highest healthcare needs of the population, and who therefore come into contact most often with healthcare settings[34]. Many chronic illness and disabled patients are already in care homes, hospitalized, or in frequent contact with local surgeries and hospitals, therefore placing them at risk from healthcare-associated infection. Whilst there have been calls from medical professionals to include these groups and ensure a consistent delivery across regions that is not subject to ‘local availability’[35], the disastrous manner in which the pandemic is being managed in the UK[36] and Ireland[37] likely means vulnerable groups will continue to be subject to risk, as well as severe mental health strain, for an unknown period of time.
The failure to protect the disabled and chronically ill has not only exposed them to greater risk from Covid-19, but ensured that existing medical conditions have been treated poorly and deteriorations have been missed. Along with routine medical appointments, procedures and investigations becoming unavailable, many vulnerable patients have chosen to avoid healthcare settings altogether, due to a worry about contracting Covid. This has, predictably, led to medical conditions deteriorating, serious new conditions being missed,[38] poorer quality of life and increased deaths for those most in need of care[39]. Amongst the compounding factors for the lack of trust in the safety of healthcare settings has been governments’ focus on ‘fomite’ (surface) transmission of SARS-CoV-2, to the detriment of aerosol transmission, evidence for which emerged early in the pandemic[40]. This focus resulted in what has been referred to as the ‘hygiene theatre’[41] of surface disinfection, and a lack of consideration for physical distancing, ventilation, the provision of appropriate PPE for healthcare staff and visiting patients, inessential venue shutdowns and the enforcement of mask wearing. In spite of medical professionals’ assurance that ‘the NHS is still open’, assiduous repetition of ‘following protocols’ rings hollow to anyone who has visited a hospital (and an Accident and Emergency unit in particular) during the pandemic, where everyone (including the clinically vulnerable) are grouped together with everyone else in waiting areas for hours.
SHIELDING AND QUARANTINE
Beyond the high death rate and hospitalization impact on the disabled and chronic illness community, the pandemic has also had other effects, some more difficult to quantify. On a background of governmental failures in imposing timely lockdowns that would save lives, many of those in work were, and continue to be, faced with a choice between protecting their lives and protecting their livelihoods. Many of them are healthcare workers and teachers, supermarket assistants and delivery drivers, key workers with health conditions who do not qualify for shielding but are, nonetheless, at increased risk of serious illness and death[42]. Once again, the government’s highly exclusionary criteria for who qualifies as ‘clinically vulnerable’ have resulted in putting lives at risk.
For those qualifying for shielding, the pandemic has had a mixed effect. Many disabled and chronically ill people require home visits from professional carers, thus making shielding impossible in practice. This is a problem compounded by the lack of PPE provided by the government to nursing staff[43] and the lack of a functioning test and trace system, resulting in carers unwittingly infecting their patients. Faced with potential infection, many of those who had the choice have relied, instead, on family members for their care, resulting in an increased psychological and physical burden of care[44]. This has also had a predictable financial impact. Prior to the pandemic, visiting nurses and carers provided items such as dressings, specialized scissors, disinfection materials, etc. and a local physiotherapy centre would provide exercise balls, and machinery prohibitive to a private buyer. Since the start of the pandemic, however, the cost of specialized care has fallen on disabled and chronically ill people themselves. Having family members provide the care that a district nurse might otherwise provide has also raised safety issues. Families have done their best under exceptionally strained circumstances. But this is a poor substitute for years of training, resulting in poor care and a high risk of injury to carers themselves[45], in addition to a heavy psychological toll.
WORKING FROM HOME
For those disabled and chronically ill people who, prior to the pandemic, sought arrangements to support them working from home and were denied, the speed with which employers have implemented the necessary technology and accommodations was both a welcome surprise and a source of unavoidable resentment. A 2019 Unison report found that 67% of applications for working from home were rejected[46]. As many with disabilities or chronic illness will know, the process for making workplace accommodations prior to Covid involved lengthy and taxing meetings with Occupational Health, often resulting in eventual loss of jobs. Suddenly, it was both possible and encouraged that one should work from a home computer. The flexibility of arranging one’s own hours and the comfort of working from a home environment has, for the chronically ill and the disabled, been a blessing in disguise. Many reported feeling guilty that during a pandemic in which millions suffered, they found themselves relieved[47]. This new accessibility did not only apply to work, but also leisure. With lockdowns in place, a lot of previously inaccessible or difficult-to-access cultural and exercise content became available. Cultural centres started streaming free content online, The Royal Opera House added free live performances to YouTube, films premiered online, and yoga instructors offered streamed classes for those able to participate. For chronic illness patients for whom the physical exertion of the journey to many of these places meant that events were prohibitively out of reach, this was a very welcome change indeed. Some even wondered whether the new accessibility and the challenges posed by the pandemic to the average person might lead to some sort of ‘collective empathy’[48].
As beneficial as working from home has been for some, the intensive use of computers and technology has also led to issues of accessibility for some disabled and chronically ill people. Those who require assistants to operate computers for long hours, or who need frequent breaks away from screens due to vision challenges, did find themselves under increased pressure.[49] So did those with neuro-diverse conditions, those who are blind[50] or suffer from hearing loss. Expensive equipment previously provided in offices was suddenly out of reach. Regular therapies that many disabled and chronic illness patients attend to aid in their recovery or day-to-day functioning also became unavailable. Some of these have been impossible to replace through virtual environments.
An important aspect of a lot of workshops, therapies and classes for the chronically ill and the disabled is social. When these became unavailable, the social isolation already experienced by many increased exponentially, further compounded by the reduced social contact from friends and family, who stayed away for safety concerns. Zoom meetings have been an important aid, but no replacement for human contact. In the absence of official provision and protection, many turned to social media health groups for camaraderie and practical advice in dealing with the pandemic and keeping themselves safe. If the beginning of the pandemic saw mass volunteering from local people to help deliver groceries and provide a virtual listening ear to those shielding, pandemic fatigue has meant that many of these opportunities have now disappeared. Those most vulnerable are once again finding themselves alone[51].
CARERS AND FAMILY
Whilst a lot of the impact has been personal (i.e. the impact of the pandemic on the disabled and the chronically ill individuals) the pandemic has also had a significant effect on carers of disabled people and the chronically ill. These carers, both official and unofficial, are overwhelmingly female, sometimes themselves chronic illness patients[52]. In the UK, 58% of carers are female, and 20% of women aged 45-54 are providing care, unpaid, for someone with a disability or chronic illness.[53] During the pandemic, the enormous stress, physical and psychological, that carers were already under is being increased exponentially due to a failure of government to provide the necessary support. Parents of disabled children report having to learn how to do all the therapies their children are no longer receiving through online research, often undertaken at the end of a long day caring for their disabled child. These include speech and language therapies, psychology, physical therapy, occupational therapy, and other specialized care.[54]
THE FUTURE OF COVID
Not only is the pandemic widening the inequality gap between disabled and non-disabled members of the community, ‘long-Covid’ is creating a whole new category of chronic illness patient, the full impact of which has yet to be assessed. Many are now discovering that healthcare systems all over the world, ill-equipped to deal with chronic illness[55], have little help to offer. Fortunately, long-Covid clinics are being opened in England[56] and patients are slowly being offered tests and ways to manage debilitating symptoms. Members of the disabled and chronic illness community have had mixed reactions to this news. That such help is being offered[57] is very welcome news, yet many could not help but notice that previously dismissed medical conditions were now acknowledged as being the result of long-Covid[58]. The problem with this is not that long-Covid patients are getting the care they desperately need, but that long-term sufferers of certain medical conditions now known to also result from long-Covid will still not qualify for care unless they can show they have been infected. For instance, those suffering for years from such conditions as chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME), mast cell activation disorder (MCAS), dysautonomia, autoimmunity or postural tachycardia (PoTS) have had very little medical help.[59] These same conditions are now acknowledged as often resulting from Covid-19. Whilst some have been optimistic that these previously overlooked conditions are now gaining official acknowledgement and scientific attention, it remains the case that many chronically ill people will fall through the cracks of the system, with no access to the long-Covid clinics and no help from their healthcare providers. Once again, chronic illness and disabled patients are invisible to a system that has excluded them and continues to do so. If a catastrophic human and economic impact of the pandemic is to be avoided, far more effort needs to be made to protect the vulnerable. One of the many things revealed by the pandemic is that we are all just one diagnosis away from becoming disabled or a chronic illness patient.
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