There are not many things to celebrate in these dark days of pandemic, but at least the crisis has finally forced people to look at the country’s decrepit social care system. I have long argued the lack of attention towards such a crucial prop in society is shameful, exposing callous wider attitudes towards people who are old or disabled. We sanctify the health service while hypocritically ignoring another equally important public service — and the legacy of such a shallow attitude has been to allow the sector to be crucified by spending cuts.
Westminster politicians promised reform but just played pathetic tribal games that stymied attempts to salvage the shattered sector. Over the past two decades, there have been 12 White Papers, Green Papers and other consultations about social care in England plus five independent reviews. Yet nothing was done amid an obvious cash crunch. Real-term spending was £300m lower when the coronavirus pandemic struck than a decade earlier, despite surging demand from both older and working-age people. NHS spending soared over the same period by about £26bn, yet there was a constant chorus of complaints about funding
Meanwhile, big corporate players, some funded by debt while sending profits to tax havens, moved in to plunder the forgotten sector — from old people’s homes, through to children’s services. The bosses made millions while the staff actually delivering care on the ground were paid peanuts. People with autism and learning disabilities were locked up in abusive detention rather than given the assistance to live in the community with decent support. Other desperate citizens and their families, including an estimated 1.4m older people, were simply denied support as services were starved of funds. Yet only those trapped in the system seemed to really care.
Many families end up fighting a sector that is meant to support them. “Every single good thing we’ve achieved for our son has been with a lawyer in the background,” the mother of one man with profound disabilities emailed me this morning. “Isn’t this a terrible indictment for our country?” She is right.
Yet as fear stalks the land, there is sudden recognition that social care is an essential part of the British fabric of life. Carers are applauded in appreciation of lives risked on the coronavirus frontline. There is horror over the hideous death toll in care homes, even if many fatalities are not being properly recorded. And Matt Hancock, remembering his full title is health and social care secretary, has put a new badge on his suit lapel.
The current carnage sweeping through care homes was sadly predictable since they are filled with people who are old or may have underlying health conditions. Britain could see it coming when the impact on nations hit first by the disease was clear; one study from five European countries found between 42% and 57 % of all Covid-19 deaths came in care homes. This makes the government’s sluggish response to the virus and multiple failures to protect people on the pandemic frontline even more damning.
But even now discussion on the impact on social care focuses largely on old folk in care homes. About one-fifth of people in such places, however, are under the age of 65 — and more people who rely on care receive the support in their own homes than in residential homes. Indeed, the increase in demand for care services rose more than twice as fast for working-age adults as for elderly people over the past five years, even in a rapidly ageing society. Meanwhile millions of exhausted family carers remain largely ignored.
Look at the disturbing results of an audit by Chris Hatton, professor of disability at Lancaster University, and the Voluntary Organisations Disability Group (VODG). It found that only 36 out of 6,906 frontline staff working with working-age adults in both domestic and residential care settings had been tested for the virus, along with just 61 out of 9,708 of the people they were supporting. Is it any wonder with such low testing rates they found more than one in eight staff to be off sick or self-isolating, heaping more pressure on struggling services? “The figures for disabled people being tested, as well as the staff supporting them, are alarmingly low,” said Rhidian Hughes, the chief executive of VODG.
Hughes added that the government’s response must recognise support for disabled people “and not simply equate social care to older people’s care homes”. As I have seen for myself with a daughter reliant on support, and heard from so many other families, advice offered from start of this crisis has been hopeless. Typical is a new government edict for people using direct payments to “purchase their own personal protective equipment from their preferred supplier” when many have never needed such stuff before. Amazon is more use than the authorities. But perhaps we have an advantage in these strange times since our lives have been filled with fragile uncertainty for so many years, living with someone who has a disruptive and potentially-fatal health condition. Stresses remain intense, however, especially when it is impossible to isolate given the need for care support.
There is much talk that things must change after this crisis. Typical was a punchy column by Rachel Sylvester in The Times, arguing that the government will have to scrap planned immigration rules that keep out carers. She was right to say these are disastrous for a sector with 122,000 vacancies at start of this crisis that relies heavily on foreign workers (as I have seen with deep gratitude). And also to point out the obscenity of the government raising the NHS surcharge — imposed on foreign workers and each member of their families on top of other immigration fees — from £400 to £624 for health and social care employees performing heroics. Others have called for a Royal College to lift the status of carers, better training, more qualifications.
Yet just as in the aid sector, many of the solutions suddenly being suggested follow the demands of big corporate players and their front organisations rather than real needs on the ground. Take the idea of making carers eligible for the NHS visa. Yes, this might help a bit. But it suits interests of providers that can recruit in Poland or Portugal to grab scores of staff. It does not necessarily help those using direct payments to find carers or families searching for help with a relative suffering dementia — or else it forces them to hand thousands of precious pounds to agencies. And what about the therapists and younger special needs teachers who earn too little for entry, even the artists and yoga instructors who can enhance lives of people with disabilities? Life should be for living, not existing.
Many of the finest foreign carers come here searching for work and discover their aptitude for supporting others after taking low-paid jobs rejected by most Britons. Care is hard to define, often tough and with anti-social hours. The best practitioners have qualities such as compassion, empathy and patience rather than the sort of formal qualifications that suit bureaucrats. As Hatton points out, this is backed by people with learning disabilities using services. “The key care competences are human and revolve around relationships,” he said. “Blanket qualifications do not help you sort out who are the best carers. You can teach skills needed on the job.”
If we want to solve problems surrounding care exposed by this crisis, the solutions go deep into society. Look again at the immigration system. The government ignored cries of pain from the care sector while constantly talking about luring “the brightest and the best”. Never any mention of the most caring and compassionate, of course. This stance defined people wanting to work in a crucial public services as being of less worth to the country even than corrupt billionaires from China and Russia seeking a bolthole.
It will take more than shuffling a few visas to cure such ills. Ultimately, the struggling care sector shows an ugly reflection of our society. It reveals the need to rethink the meaning of both life and death. Why are such large numbers of older and disabled people meeting lonely ends in care homes when coronavirus strikes? It is because too many are crammed into large and impersonal units that keep them out of sight and out of mind. Services have been consolidated in bigger places to save cash, encouraged by grasping big firms. So these people are not welcomed as cherished citizens, living in real homes filled with warmth of humanity in midst of communities, but hidden away due to their disabilities or decrepitude at end of life.
This is the same mindset that determines them less important for testing, deems them less valuable if life-saving ventilators are rationed, lets their deaths go unrecorded in this crisis, leaves them at the mercy of money-grabbing profiteers delivering dismal services, allows some citizens with autism and learning disabilities to be locked up in denial of their human rights. The attitude is so infectious even people caring for them are seen as more disposable than doctors or nurses, workers in institutions of minimal value on minimum wages.
The problems plaguing this Cinderella sector will not be solved with sticking plaster technocratic reforms and a cash splurge. For they are at heart about the absence of dignity, the imbalance of values, the loss of shared humanity and lack of respect for all citizens in society. It takes more than a minute’s clapping to show we really care.