The world is changing so fast, it seems each evening we go to sleep in a different one to the one we woke up in. At a (hyper) local level, my household – my partner, my daughter and I – are now in household isolation for the next week. I’m having a ghastly foreshadowing of what a world without childcare, playdates, and social contacts feels like. The thought of not seeing family and friends, my colleagues and students, for weeks or months is utterly miserable. The thought of who I might not see again when we come out the other side of this is just unthinkable. Even just wondering if local cafes and shops will manage to survive is bad enough, without thinking about what it must feel like for those working in the front line of health and social care. To anyone working in health and social care, to anyone working on any front line right now – be it keeping supermarket shelves stocked, caring for your families, or helping ensure your neighbours get their food and medication if they can’t leave the house – a collective thank you and appreciation.
It’s hard finding time to do anything at present except keep the little one entertained and everyone fed and cared for, and trying to keep on top of work. So blog posts will inevitably be brief, typo-ridden, but somehow feel more essential than ever right now.
I want to return to the issue of what happens in care homes. When I last wrote, the government had given no specific advice on ‘vulnerable’ people (by which was meant, people who are especially vulnerable to extremely serious illness or death from Covid-19), instead we were fed a diet of lobby briefings about an unspecified ‘cocoon’ plan whilst everyone developed herd immunity. Since then, the government’s approach has shifted to much more stringent social distancing interventions at the population level, and much more specific advice for higher risk groups.
The new advice is quite specific about who is in a higher risk group. It includes people over the age of 70 (regardless of medical history), chronic (long-term) respiratory diseases, chronic heart failure, kidney disease, liver disease, neurological diseases, people with weakened immune systems, who are seriously overweight, and pregnant women. For reasons I am not quite clear about (but I do not doubt there is some medical rationale for this) learning disability is included within this list (but not, apparently, dementia). This list will include a lot of people in residential care homes, nursing homes, and supported living – as well as a lot of people who do not. The guidance says that those falling into these higher risk groups are ‘strongly advised’ to:
- avoid ‘social mixing’ in the community (e.g. ‘cinema, theatre, pubs, bars, restaurants, clubs’ – to which we might add day centres, memory cafes, community centres…)
- avoid having friends and family to your house
- to use less public transport and work from home if possible.
For some even higher risk groups, more stringent and specific guidance will be published shortly by the NHS.
The guidance is advisory. I am keeping an eye on the new legislation pages and Bills before Parliament , but at the time of writing (17/3/20, pm) I cannot see anything that looks like a compulsory measure, other than the existing Coronavirus regulations. The general approach of the UK currently is to rely on the population being prepared to follow this guidance. Based on my own very limited sample, I have my doubts – an alarming number of people who seem to think they have magical powers of introspection to determine whether they have a cold or flu, rather than Covid-19, and are still out and about (“it’s a wet cough, not a dry cough”… “it’s flu, I’m sure of it because the children are fine and they have been vaccinated”). There were media reports over the weekend about legislation being prepared that would give police powers of detention. Having listened to reports of the compulsory measures being adopted in Italy and France (where voluntary measures failed), these sound almost impossible to imagine in liberal democracies. Impossible to imagine only a few short months ago.
There is an important distinction to be drawn between people who present a risk to others – because they are, or may be, infected with Covid-19, and those who are at risk. The coronavirus regulations concern those who pose a risk, not those who are at risk. Many people are at risk of Covid-19, but do not pose a risk to others. Many of these may be willing to ignore the guidance. For some people, the ‘risks’ of social isolation, or even their everyday practical or economic realities, mean it is undesirable or untenable to strictly comply. As anyone who has attempted to book an online delivery slot with the supermarket lately will know, people may have to leave their houses to get food, to get medication, to visit food banks, to take kids to school (for now), and so on. I hope that in the next few weeks those of us who can leave the house relatively safely will be able to set up street and community networks to help each other out. But there will be gaps in this ad hoc safety net. And there will be those who do not want the safety net, who want to carry on living as normal as life as possible.
For those living in their own homes, there are no compulsory measures requiring them to stay inside for their own protection. It may be that family members exert pressures on each other not to go out (or not!), but it is doubtful anyone ‘official’ will stop them, unless they are infected or symptomatic, and therefore a risk to others. But for those living in congregate settings such as care homes and nursing homes, and even supported living ‘clusters’ – where the risks of infection travelling rapidly between residents, and through staff, are extremely high, a different risk calculus emerges. I just want to stress quite how serious this risk is. To put it bluntly, if Covid-19 takes hold in some of these settings where the majority of residents are older or have serious health conditions, it is not hard to imagine extremely high fatality rates, and high levels of very serious illness.
The government has issued guidance for these settings, distinguishing between residential care, supported living and home care. The most recent version (updated 13/3/2020) of the guidance for residential care gives the following advice to care home providers on visiting policies:
To minimise the risk of transmission, care home providers are to review their visiting policy, by asking no one to visit who has suspected COVID-19 or is generally unwell, and by emphasising good hand hygiene for visitors. Contractors on site should be kept to a minimum. The review should also consider the wellbeing of residents, and the positive impact of seeing friends and family.
On what should occur if a resident has symptoms of Covid-19:
Care homes are not expected to have dedicated isolation facilities for people living in the home but should implement isolation precautions when someone in the home displays symptoms of COVID-19 in the same way that they would operate if an individual had influenza. If isolation is needed, a resident’s own room can be used. Ideally the room should be a single bedroom with en suite facilities.
The guidance also gives useful advice on protective equipment, hygiene measures and so on, but it is the issues of visiting and isolation that I want to concentrate on for now. And the unmentioned issue of whether residents can actually leave the home (with or without support).
The supported living guidance does not mention any visitor policy. And on what to do if the resident has symptoms that might be Covid-19 it says this:
If the individual receiving care and support has symptoms of COVID-19, risk to their health and wellbeing must be assessed and appropriate action taken.
Rather unspecific guidance, one might say. Surely the point of guidance is to guide on what appropriate action to take in such circumstances? What is interesting about the supported living guidance is that it tacitly recognises that imposing restrictive measures such as isolation, or restricting visitors, has a questionable legal basis within what is – legally speaking – a person’s own home. Yet the logistical realities and the infection risks are not so very different where units are densely packed, there are shared staff and shared spaces, and residents may wish to visit each other, as well as their friends and families.
I do not want to question the medical urgency of preventing transmission of Covid-19 into, or within, care homes or supported living. But there are some striking omissions in this guidance. The assumption seems to be that of course people in care homes (and supported living?) will not be going to shops or the cinema or restaurants or using buses (or working!), and so nothing needs to be said about it. But I have worked in care homes and supported living services where people do all of those things, with and without support. So the question is – how are care providers to approach these newly ‘risky’ activities now, which likely formed the bread and butter of many care plans? Do they still support residents to go out if they want to? Do they prevent them going out? My guess is, to be blunt, many care home residents will not be ‘allowed’ to do these things and perhaps some supported living residents as well. Yet we should remember that for some care home residents (as for some people generally) the risk calculus may not be as we presume it to be. For some – perhaps some of those who already have life limiting conditions – the focus may be on getting the most out of what time they have left. So it would be good to see the guidance engage with these issues. Another striking omission was whether approaches to visitors and ‘isolation’ have any flex in them when the person is extremely ill, or even dying. Yet this is the grim reality that some nursing homes may have to face.
This brings me directly to the issue of by what legal authority is a person in a care home or elsewhere is prevented from ‘accessing the community’, or even ‘isolated’ in their own room. On the former, DoLS could potentially come to the fore here, as a means to support careful risk assessment and enabling risk taking where the benefits outweigh the risks. The problem, however, is that the risks are not entirely the person’s own to take. If they do acquire the infection, and return to the care home, this presents a serious risk to other residents. Congregate settings present particular challenges for infection control (I have heard that this is now being viewed in some DoLS assessments as an argument against a person moving into a care home).
Isolation is even more challenging. In a mental health context, shutting someone in a room for a prolonged period of time without social contact is known as seclusion or even segregation. These are viewed as at the more extreme end of the ‘restrictive practices’ associated with mental health law, and are tightly regulated by the Mental Health Act 1983 and its Code of Practice. Yet here it is blithely being advocated without any clear legal basis (necessity?!).
My point is not that isolation is always wrong in these most extreme circumstances (although in some cases, it may be). My point is that in this current crisis we are in danger of losing sight of one of the most important questions human rights law has taught us to ask: on what authority do you impose this measure on a person? This is a question that has been a long time coming to the care sector, and in some ways it still had not permeated the array of restrictive practices and blanket rules that were still widely practised even before this crisis. But my fear is that with this genuine emergency, it will slip further from our grasp. So the key question is how do we hold onto this, how do we hold onto those questions about the lawful basis for intervention, about non-discriminatory interventions, about least restriction and no blanket policies, about positive rights to take risks, in such extraordinary times? I am worried that when we wake up in the world after this emergency we risk forgetting how to ask these questions, and it will be a long climb back.
Update (ten minutes later!): there is a new announcement about a pending Coronavirus Bill. It looks like a dilution of duties to meet needs under the Care Act 2014, and flex over the number of assessments and timescales for renewal for detention under the Mental Health Act 1983. Oddly, no mention the Mental Capacity Act deprivation of liberty safeguards, even though that is far (far) more widely used and is actually likely to be used in acute settings and care homes where Covid-19 will be applying particular pressure. There are also some powers to restrict or prohibit events or gatherings, to close schools, universities and childcare settings, and ‘the bill will enable the police and immigration officers to detain a person, for a limited period, who is, or may be, infectious and to take them to a suitable place to enable screening and assessment.’ But nothing specific on the issues just discussed.