Yesterday, at the 11th hour, the government caved in. Knowing that proceedings were being issued against it this week by John’s Campaign (of which I am co-founder), it announced that people in care homes need no longer self-isolate for 14 days after a visit out. It’s a rare chink of light for those who live in residential homes and their families and a victory for charities and campaigning groups, including John’s Campaign.
But the question remains: why was this singularly nasty, cruel and bizarre piece of guidance ever issued in the first place? How was it deemed acceptable that a whole section of people should be imprisoned in the place called “home” and deprived of their liberty?
A friend tells me about her father. A mild, reticent and affectionate man with a deep love of home, he had been living with dementia for some years, cared for by his wife and family. At the end of last year, he went into a sharp and distressing decline and eventually, after weeks of chaos, upsetting days and sleepless nights, they had to find a care home that would take him. “We held off for as long as possible, because we knew we wouldn’t be allowed to see him properly and that was unthinkable. We knew we’d lose him.”
One day in March, my friend, her sister and her mother drove her father to the home; when they arrived, he was bewildered and furious. His daughters had to stay outside. They watched as their mother hustled him indoors with his case and as the carers, who are kind people doing their hard, important job as well as they can, pushed him along. He was crying and shouting and they were helpless. His wife was allowed to unpack for him and then she, too, was obliged to leave and not return for several days. My friend cried for a week and she cries when she tells me her story; perhaps it is a story that will always make her cry. The suffering of people in care homes is also the guilt and grief of those who love them and are separated from them.
When she visited, her father would sit in his room and weep. They have not been allowed to take him out: to a park, to a river, to sit in the garden of a pub, to be with his family, all of them together. If he had gone out, he would have had to quarantine for 14 days. This was solitary confinement and a form of mental torture. But he isn’t a prisoner – he is an old man reaching the end of his life and this is supposed to be his “home”. In the meantime, the staff have come and gone – they were allowed to walk in parks, sit in pub gardens, see their loved ones.
While the rest of the country has been coming out of lockdown, people in homes – old people, the young too, many learning-disabled and autistic but perfectly healthy and not at risk – have been grossly discriminated against and the familiar excuse of protection has worn very thin indeed. Covid isn’t the top killer in the country any more: dementia is. In care homes, it probably always has been.
This is a horribly everyday story of how cruelty happens: not with an individual and a desire to inflict pain, but bureaucratically, pedantically done by probably perfectly nice people reaching for procedures and hiding behind regulations, passing the buck. (The government blames the care home providers and they blame the government and the Care Quality Commission, while directors of public health talk about insufficient data and infection control and the merry-go-round continues.)
These nice people turn a blind eye to the suffering of those most in need, talking about risk-assessments and proper precautions and the “vulnerable”; expressing a bland concern for distress and not seeming to comprehend that this distress is, in fact, profound human anguish.
Until yesterday, the government guidance stated that visits out from a care home should be followed by a 14-day quarantine, a regulation so grotesque and absurd it beggared belief.
Some of its implications demonstrate how staggeringly wrong-headed it was. A wife recently sent her own example to John’s Campaign: her 57-year-old husband has multiple sclerosis with cognitive issues and epilepsy and is in a nursing home. Because he has to go to hospital every two to three weeks for throat procedures, he has been in more or less constant quarantine in his room. “Inhumane,” wrote his wife.
Inhumane is right. Which is why John’s Campaign felt it necessary to turn to the law: our groundhog day, for this was far from the first time we have legally challenged the many iterations of care home guidance during the pandemic, all of which have been unfit for purpose. In our dealings with government lawyers, we have never felt that they wanted to improve the wretched situation of many thousands of people in care homes, only that they wanted to win or, better still, for us to shut up and go away. Which we will not.
In our last pre-action letter, drawn up by our lawyers Leigh Day, we claimed that the 14-day guidance created an unacceptable risk of illegality because it made it likely that care providers act unlawfully in three possible ways: false imprisonment, deprivation of liberty and an undifferentiated approach to residents of care homes that is against the Equality Act. Kafka would be grimly tickled by the response, which was essentially that the 14-day requirement was not actually a legal one (something the health secretary, Matt Hancock, and the minister for social care, Helen Whately, don’t seem to be aware of) and that the providers, rather than the government, are responsible for the safety of their residents. Jaw-droppingly, they asserted that the deprivation of liberty was not an issue, because residents of care homes were free to leave. They just couldn’t come back if they did so.
Yet these places are called their “home”. In your home, you are not imprisoned; you are not stripped of your autonomy, dignity and right to be treated as a citizen; you are not deprived of those people you love most; you are not evicted. You can walk out of the door and into the world, sit in a garden, smile at strangers, walk along a river, go to the sea, be alive in the rich flow of life. You can be yourself. Many people who live in care homes have not long left: they need more freedom, more pleasure, more treats and more love than anyone.
There are still things we strongly object to: the apparent insistence that people who leave care homes, whatever their mental capacity, will have to be accompanied at all times is unacceptable surveillance. And what is there for the young disabled? We also want reassurance that visits to a doctor will not be punished by a period of quarantine. Our campaign is far from over.
However, we of course pleased the government has, far too late in the day, been pushed to abandon shameful guidance that should never have seen the light of day. Glad for my friend’s father and my friend and all and bereft families who can finally open the door and step out together, into the world.