Last week, I was in Sweden, investigating whether the nation’s strategy to avoid lockdown during a pandemic has been a success or failure. The highly contentious issue has become ensnared in the global culture wars, although the arguments in favour of their sustainable stance have strengthened recently as spikes and second waves erupt around the planet. Yet one aspect of their approach is beyond debate: that a key reason for their high coronavirus death rates, among the worst in the world, was due to catastrophe in their care sector.
More than two-thirds of the 5,776 deaths in their population of ten million were older people in care settings, the majority in residential homes. There are grim stories of the elderly being given morphine and left to die rather than overload hospital wards, along with more familiar claims of failure to supply protective equipment and underpaid agency staff working across different locations. An official investigation found the deaths concentrated in 40 of Sweden’s 290 municipalities, with 91 homes needing further investigation. “We failed to protect our elderly,” admitted Lena Hallengren, minister for health and social affairs. “That’s really serious and a failure for society as a whole. We have to learn from this.”
A similar tragedy unfolded in Britain. The big difference was that our leaders chucked 25,000 elderly people out of hospitals, sending them into care homes that were sometimes paid to take them in order to clear space in intensive care units. Incredibly, many of these patients were not tested for coronavirus, despite being sent into places packed with the elderly and disabled people most at risk from this disease. Ludicrous Government advice still claimed, until 10 days before lockdown: “It remains very unlikely that people receiving care in a care home or the community will become infected.
Official data revealed that almost 20,000 care home residents in Britain died with confirmed or suspected coronavirus during the peak 10 weeks of pandemic, although excess death figures suggests the real numbers may be even higher. “Years of inattention, funding cuts and delayed reforms have been compounded by the Government’s slow, inconsistent and, at times, negligent approach to giving the sector the support it needed during the pandemic,” commented the Public Accounts Committee two weeks ago in a devastating indictment of failure.
Britain has the second highest number of deaths as a percentage of its nursing home population in Europe. (There are currently about 400,000 people living in 17,000 nursing and residential care homes across England). The worst was Spain, a country that likes to believe the family is at the heart of its society. Soldiers called in to help tackle the crisis found elderly people in care homes abandoned by staff, with corpses lying in beds; prosecutors are investigating whether to launch criminal cases. In Italy, another supposedly family-orientated nation, police launched probes into what were described as ‘massacres’ in huge care homes. Belgium has the world’s highest Covid-19 death rate, with two-thirds of fatalities occurring in nursing homes during its peak weeks of pandemic as the sector was overlooked in the rush to protect hospitals.
The same issues emerged in North America. The first major outbreak in the United States was centred around a Seattle care home run by one of the largest private operators, which was linked to 40 deaths. Now the world’s richest nation has the planet’s highest death toll due to its dire pandemic response, with four in 10 fatalities linked to long-term care facilities. Canada reacted better, resulting in a relatively low per-capita death rate. Yet an official study found 81% of its fatalities were in care homes — the worst rate among 16 wealthy nations examined and twice the average level in Organisation for Economic Co-operation and Development (OECD) nations. “This report confirms what we all suspected: Canada is not taking care of our seniors as it should be,” said prime minister Justin Trudeau.
Much about this new virus remains mysterious but we do know it impacts hardest on older people and those with underlying health conditions. So we must ask tough questions about these deadly failures. Those let down also include people with disabilities, who comprise two-thirds of the British deaths, according to the Office for National Statistics. And do not be fooled into thinking there was anything inevitable about these fatalities, even among the most at risk groups. Countries such as Australia, Austria, The Netherlands and Slovenia implemented more successful prevention measures in care homes, leading to fewer infections and lower death rates in long-term facilities.
This pandemic has ruthlessly revealed the failure of some social care systems. Many issues have been depressingly similar, with hospitals given highest priority while care homes and their undervalued, overloaded staff were forgotten in the panic of pandemic. So many aspects of the response — from initial political imperatives through to distribution of advice and protective gear — have highlighted the secondary status of this vital public service, as well as that of the elderly and disabled people who rely on it for their daily needs. It is significant to note that carers are paid on average about one-third less than people who do similar jobs in hospitals across OECD nations; it underscores their societal valuation and fosters the frighteningly high churn rates among staff.
In this country, the health service gets worshipped by politicians and public alike while confusion surrounds fragmented social care — until people suddenly discover they or their loved ones rely on it for survival. The crisis struck after two decades of White Papers, Green Papers and other consultations calling for reform of the sector. Yet real-term spending on social care has fallen over the past decade, despite surging demand, in stark contrast to the additional billions poured into the sacred National Health Service.
Clearly the system needs a huge injection of cash. It is not impossible to find the necessary sums when there is the political will: the £20bn spent furloughing British workers over the past two months alone could fund the care system for a year. But simply ploughing in money will never be enough — not least when in Britain, as in other badly-afflicted nations such as Spain, a key part of the problem has been expansion of the sector by debt-funded private equity firms that rake off vast sums, often using tax havens and complex corporate structures. Their financial model relies on economies of scale delivered through larger ‘homes’ — yet the inevitable consequence is that, when disease strikes, there are more deaths in bigger units crammed with citizens at most risk of dying. One recent Scottish study concluded that care home size was “strongly associated with outbreaks”.
This dark tsunami of death exposes systemic corrosion, sometimes dating back decades. So if extra cash were to go into the system, how would we ensure it delivers better services and ends up in the right pockets? Politicians have a poor record at controlling increases in state spending while the voices often heard representing the sector are simply lobbyists for big providers. This is the first big challenge in any reform.
There are, though, more fundamental questions that need to be addressed. Our care system has become essentially custodial: people who need support are warehoused out of sight from the rest of society. Elderly and disabled citizens have been corralled into what the Canadian sociologist Erving Goffman termed ‘total institutions’, designed to reduce risk and facilitate operations for staff at the expense of the freedom and self-respect of the inhabitants.
Goffman, writing some six decades ago, focused on the institutionalisation of mental health patients, something that remains a big problem in Britain with a flawed psychiatric system that relies increasingly on incarceration, restraint and over-medication. More recently, the brilliant physician-writer Atul Gawande has explored the issues concerning treatment of the elderly. He raises concerns over profiteering firms who infantilise their charges while also asking profound questions about the effect of the elevation of our quest for longevity over the quality of life itself.
Today, in the wake of this terrible tragedy, we have a chance to pick up on such threads. We should move beyond the simplistic and rather sterile debate about funding to delve deeper into a floundering system. We need to ask ourselves how we ended up with a system that hides away and often dehumanises the citizens at its core? These are complex concerns. Dementia is a complicated disease to manage, as I saw over several years with my own father who died shortly before lockdown. I am also well aware from my adult daughter of the challenges in providing effective and empowering support for a person with profound disabilities. But as a society, we need to ask ourselves why we so readily commit people to spend years in residential institutions far removed from the warmth and spirit of genuine homes. These issues go to the heart of our shared humanity.
We live in an ageing society in which extraordinary medical advances are keeping people alive longer, but this also leads to more citizens with comorbidities. The Government has responded to the pandemic with crowd-pleasing pledges to build more hospitals and to fix the long-standing problem of families selling homes to fund care. But it is neglecting the more pressing care challenges: sorting provision of decent community services; the drastic need for improved co-ordination between health and social care services; the dwindling support for people in less prosperous parts of the country after the system shifted towards wealthier self-funders. Ultimately, there is a critical need to shift from provision of top-down to bottom-up services that empower users and families rather than bureaucrats, officials and private equity barons. This can only be done by confronting the drift towards warehousing.
There is a glimmer of hope in the Government’s recruitment of Camilla Cavendish to help shape their oft-promised plans for social care reform. The former journalist turned political adviser is author of a well-informed book on ageing societies that pointed to smart innovations in other nations. She highlighted the benefits of ideas such as Germany’s Mehrgenerationenhäuser (multi-generational houses), which provide support for older people alongside facilities for younger generations such as family advice centres and nurseries, and the superb Dutch Buurtzorg model of community nursing based on small local teams delivering care for people in their own homes. Both countries escaped the worst carnage rates among older citizens — as did Denmark, which focuses spending on alternatives to residential institutions such as retirement communities and supported living in flats.
Another person who understands such issues is Doreen Kelly, who has spent 20 years — first in Scotland and now in the south-west of England — getting people out of institutions and into supported living. She runs Beyond Limits, a small firm focused on people with autism, learning disabilities and mental health struggles, and has been alarmed to see the rise of big providers who view care homes as property plays and vulnerable human beings as commodities. “It has become an industry with bigger and bigger places that warehouse people,” she tells me. “But it is difficult to be person-centred when you run large places. The bigger you become, the more you focus on bureaucracy and red tape and accounts rather than delivering personalised care.”
Our default position, she says, is to shut away the old and disabled with other people who are old and disabled, rather than at the heart of communities. This explains why social care can become so forgotten and so dysfunctional in such rich countries — and with such devastating consequences in a pandemic. “There is more to life than being fed, watered and kept warm,” she says. “You can have aspirations in your seventies and eighties but if left in these care homes there is often little to do. We must always place people at the centre of social care systems.” Yet she sees one upside to the Covid crisis since it has sparked a sharp reminder how much we depend on each other. ”And that,” she says “includes everyone.”
The ultimate question, of course, is simple: how much does society really care? Not much in the past, as revealed in such hideous style by this cruel pandemic. So what about in the future?