Suddenly, we are all living with intense restrictions on our basic human rights. Everyone is under a form of ‘house arrest’, reduced to contacting our relatives and friends only through the internet or on the phone. Summer is coming, but, for the foreseeable future, without those casual evenings with people important to us and with no chance of a few days away.
I know how much anguish is caused to care home managers who are forced to impose a ban on residents’ visitors or outings. They, and others responsible for service users’ health and well-being, are feeling their way in this scary new world. At the same time, they are coping with staff sickness or self-isolation, and also worried about their own families.
Restrictions in care settings: View from the Court
Without doubt, though, things are exceptionally hard for residents of care homes or in supported living settings. The dilemma facing service users and care providers, together with relatives, is starkly outlined in a recent Court of Protection case.
This tells the story of Mr P, a care home resident, subject to a DoLS authorisation. It is extremely important, because it shows the Court grappling with exactly the same hard problems that care providers are facing. From being visited, pretty well daily, by his many loving relatives and friends, Mr P was, together with the other residents, at a stroke deprived of any visits at all. This was, of course, not the result of any high-handedness on the part of Mr P’s care provider, but, rather, the only way to protect him and the other residents from COVID-19, which would be very likely to cause serious illness among them.
Mr P’s additional disability
Mr P, like many of his fellow residents, is living with a degree of dementia. Unlike many of them, however, he is also extremely deaf. This means he has never learned to use Skype or other internet tools and cannot keep in touch by phone: he communicates by using a communication board. Unlike some other residents who can talk to people they love by phone or on the internet, his isolation from his entire emotional world is now distressingly complete.
As the Judge said, Mr P ‘… does not use a telephone, facetime or Skype. There can be no doubt that the change to [his] quality of life from 5 o’clock on Friday 20th March 2020 [when Government announced new sweeping restrictions on contact] was seismic.’
Family dispute about best interests
Even before COVID-19, Mr P’s family had disagreed about the best way to care for him. In a commonly-occurring situation, some relatives were very happy with the care home placement, but others thought he should be cared for at home with a care package. And he himself, lacking the mental capacity to weigh his care needs properly, wanted to go home: this is why his rights needed protecting by the deprivation of liberty safeguards (DoLS).
This case came to Court – and was heard, itself, over Skype – because one of Mr P’s children was sure it couldn’t be in his best interests to be so isolated. She praised the care home as excellent, but asked the Court to set aside the DoLS authorisation so that he could live elsewhere. She pointed out that the authorisation had assumed his existing high level of contact with those he cared for, which gave him enormous pleasure, would continue. She suggested, instead, that she would live with him at his former home, and be his carer 24/7, for the duration of the pandemic.
She admitted, in discussion with the judge, that this would be an impossible task unless she could find some home-care support: her father has significant care needs and is also prone to what she called ‘misadventures’ unless supervised. She further agreed that this would be impossible during the pandemic.
The importance of fairness and equal treatment
The judge emphasised that the law says you must act, where possible, to lessen the impact of restrictions that weigh more heavily or intensely on someone with disabilities. Human rights law, and the Mental Capacity Act, are about preventing discrimination towards those who carry additional burdens through their health or circumstances.
As the judge said, ‘In the context of Coronavirus, the State’s obligation is to ensure equality for people with disabilities and to guard against them being inadvertently left behind by a system which deprioritises them in the urgency of a response to crisis.’ (My emphasis)
What the judge decided
Nobody could safely discount the huge risks to Mr P of exposure to the virus, given his age and underlying health problems. So the judge decided that Mr P should stay in the care home, but with real attempts to address the extra stresses of his deafness.
Everyone involved in this case tried really hard and creatively to find ways Mr P’s visitors could go on spending time with him, but it proved impossible. The plan that was ultimately put together provides for BP’s education into the world of Skype with creative use of a communication board and the exploration of instant messaging to be used at the same time. Additionally, the family can, by arrangement, go to BP’s bedroom window which is on the ground floor and wave to him and use the communication board. As the judge recognised, ‘All this will require time, effort and some creativity.’
We face a situation never dreamed of only a few weeks ago, but this emergency is, as the judge said, so dire that it threatens the life of the nation. The judgment quotes from the useful Council of Europe Statement of Principles https://rm.coe.int/16809cfa4b
Any restrictive measure taken vis-à-vis persons deprived of their liberty to prevent the spread of COVID-19 should have a legal basis and be necessary, proportionate, respectful of human dignity and restricted in time. Persons deprived of their liberty should receive comprehensive information, in a language they understand, about any such measures.
Conclusion
We are still, at the time of writing, waiting for the promised guidance on when – and whether – DoLS (which are not designed to restrict family contact) or the Court will be required during the COVID-19 emergency. In the meantime, follow the guiding principle above: be kind, and empathise with how hard this is for all residents of care settings, particularly if they have communication difficulties.