Carers in the shadows: confronting our demons

What can we say when staff in care homes and community care organisations plead for resources and recognition?  How do we respond to the distress they are feeling, as they witness severe illness, and unprecedented numbers of deaths, among their residents and clients?  How can we do justice to and support the value of their work?

Certainly, we can all press for them to get the same kind of attention that, albeit inconsistently and often insufficiently, is being given to NHS staff, especially in acute hospitals.  Their alarm and anger that they are not receiving sufficient PPE is more than understandable, when the guidance is clear that it is necessary in environments with very vulnerable or infected people. Their sense that they are being forgotten is only intensified by the fact that the death rate in care homes and the community has not been given the profile that hospital-based deaths receive. The painful reality that they face, the suffering and death they are close to, and the distress of relatives, frequently unable to visit, is hard to imagine. The fact that this is happening to people they know well – many carers describing those in their care as family – has hardly been mentioned.  These omissions need correction.

Would it help to include them in the Thursday ‘clap’, urgently get PPE to their workplaces, make the death rate explicit publicly?  To a degree.  The truth is, however, rather more troubling. We are looking through a door we seldom voluntarily open. As a society, we have apparently been comfortable to leave droves of vulnerable, disabled or old and frail people without the support they need for some time.  The resources made available to local authorities to fund social care have been savagely reduced since ‘austerity’ began.  The threshold for getting help has consequently risen to an indefensible level.  Those who do receive care in the community are frequently served by unsupported people, on zero hours contracts, on the minimum wage, making fleeting contact as they struggle to fulfil their duties, earn their crusts.  The conditions residential care staff work in are often scarcely better: the general quality of care offered is, in the circumstances, remarkable. The lack of adequate funding has led to the bankruptcy and closure of many care homes, with consequent severe disruption to the care of extremely vulnerable people.  The very fact that most of social care has been ‘outsourced’, ‘contracted out’ at unrealistically low prices, to organisations anxiously, naively or grimly looking for survival or profit, says a lot about our attitudes. How can all this be?

At some level, we all want to put the kind of vulnerability that is permanent, or untreatable, out of our minds.  We can care desperately about our NHS when it is a service that cures, at least most of the time, or makes heroic attempts to do so, even when it fails. But severe disability, physical or mental, is a different matter. Even more so, vulnerable, physically or mentally fragile, or frankly dementing, ageing and the inexorable journey towards death. These conditions confront us with the reality of our vulnerability, our dependency and mortality, and we don’t like it. Those who suffer such challenges, and those who work with them, are constant reminders of truths we very much want to go away, but, of course, won’t. 

However much (very welcome) charitable activity goes on to support social care services in our communities, this doesn’t even begin to mitigate the effects of our general denial, even denigration, of the needs they respond to.  Much as it is largely unconscious, this turning of a blind eye, this distaste, infects our feelings about the staff involved, how much we value them, how much we recognise and care about the work they do.

So, to feel sympathy and agitate for PPE or the like when we witness despairing care home managers appearing on the TV, angry about a sense of neglect and being unvalued, is not enough.  We need, as a society, to grow up, squarely face unpalatable truths about being human, understand and value what is really involved in working with vulnerability and mortality. Covid-19 is confronting us all with these hard truths.  Many are encouraged by the increase in fellow-feeling, in the valuing of, especially the NHS, as the drama unfolds. But unless we can move beyond our deeply held preference to think about effective protection and cure, to face the darker facts of our vulnerability, not much good will happen in social care. Thinking about protective equipment for carers is the easy bit because it is tangible and limited. If society is serious about radically improving social care, we need to embrace the need for skilled, and yes, loving, care for people who will not recover, but still have lives to lead. We need to work hard to keep the door into that world open. Thankfully, many in the sector, despite our neglect, offer wonderful care: they need us to recognise and value it properly.  We can only hope that our re-awakened fellow feeling extends to facing up to our fragile mortality and, in turn, the needs, and worth, of the chronically, or terminally, vulnerable and those who care for them.

John