5 May 2021

Throughout this pandemic each one of us knows what it is like to need comfort, to just be with those we love. The lockdowns and restrictions have left many of us isolated. If you happen to be living in a care home, your life and relationships will almost certainly have been reduced to "visits" and "visitors", enforced isolation the order of the day. The door to your home metaphorically and quite literally locked by someone else. Today, Parliament's Joint Committee on Human Rights publishes the latest in a series of reports shining a light on the disproportionate and often discriminatory Covid-19 measures adopted by government, regulators and public services. In today's report "Care homes: Visiting restrictions during the Covid-19 pandemic", the JCHR powerfully opens:

"The last 14 months have been some of the most difficult many of us have ever experienced. The Government has imposed extensive restrictions on our freedom in an effort to keep the most vulnerable in our communities safe from the covid-19 virus. For much of the year, we have all been stopped from being with people we love; we have seen family visits cancelled, celebrations postponed, and farewells missed. But few people have endured more over the last year than residents of care homes and their families … While care home residents were left on the inside, families have been forced to wait on the outside. For much of the last year, there have been strict limitations on visits to care homes."

Over a year of providing direct human rights sessions and resources to people, families, carers, supporters, advocates and frontline staff, the JCHR's report echoes the traumatic experiences BIHR's team have heard most days. 

    

(Research from our work with people with care and support needs, community groups, advocates and frontline staff. See our submissions to the JCHR here)

At BIHR we are focused on providing people with the knowledge and confidence to understand how the law requires human rights to be upheld in practice, including, probably especially in an emergency like the pandemic. Working with over 3000 people with care and support needs and frontline staff - the understanding that human rights must still be respected and protected, not as a nice thing to do, but as the law, is ALWAYS new information. It is virtually impossible to appreciate how poorly understood the legal duty in the Human Rights Act is by those whose daily decisions and services will either uphold or breach people's human rights. But it is also sadly understandable. Government Regulations, guidance and advice has been virtually silent on the legal imperative to uphold people's rights, and where human rights are mentioned, it is as an additional thought, not the golden thread woven throughout guidance.

Protective ring or manacles?

The "protective ring" the Government talks about placing around care homes has slid into manacles that support blanket bans, drawing dividing lines between people and the staff supporting them. We then find ourselves in this week, with headlines about people in care homes now being "allowed" visits out and no longer having to self-isolate after (some) visits. The tone of gratitude feels incredibly uncomfortable. Last week I went to the supermarket, had my vaccine, for a walk with three friends, and went to a pub for an outdoor lunch. Do you know how many times I had to self-isolate afterwards? None. So why then has any person living in a care home had to up to this week (and in some situations they still do)? How many times has a staff member in the very same home had to self-isolate after doing the exact same thing as a person living in the home? I would hazard a guess at none.       

This is not to make light of the very real risks of Covid-19 to people living in care homes. The data tells us a horrifying story of how much more likely people are to both have and die from Covid-19 in care homes. According to the ONS, since March 2020 an additional 29,000 people died in care homes than would be usually expected ("excess deaths"). There is clearly an issue of risk that needs to be addressed urgently. But rather than seeing people living in care homes as having the same rights as the rest of us and thinking about how care homes can be made safe without creating extreme distress leading to avoidable harm, the focus has too often been on shutting in and shutting out. Outside of care homes, even during the strictest versions of lockdown (in England), there were exemptions for leaving home to see and support people the law deemed "vulnerable", but if that person happens to live in a care home the situation has been significantly more complex.

People’s right to life and our other rights

The right to life is vital and carries a heavy legal duty to proactively protect; but this duty is neither at all costs, and nor does it exist in isolation. In our law, the Human Rights Act, the right to life exists alongside 15 other rights, a collective of rights that we all need to live dignified, equal lives. Born from the horrors of WW2, human rights are for all times, including emergencies, and our HRA sets out legal duties for how these rights should be upheld across the UK, including through the everyday actions of public bodies - including the government, regulators, and services. The HRA means that reasonable steps must be taken to protect life. Importantly, the right to respect to private and family life protects people's relationships and contact when they live apart, as well as physical and mental wellbeing. Whilst this right can be restricted, those restrictions must be lawful, legitimate (usually to protect the person or community) and proportionate, i.e. the least restrictive option available. It is hard to see how approaches of shutting in and shutting out, of prison-style visiting set-ups, and 14-day isolation periods for stepping outside the door are reasonable, proportionate measures. Importantly, the Human Rights Act works so that any guidance issued by the government should be applied in ways that uphold human rights so far as possible. 

Change is urgently needed 

There is a significant amount that needs to change; this feels like an incredible understatement of the obvious. The Government should be issuing guidance that supports care homes to understand how they uphold people's rights, which includes keeping them safe but does not have to be about blanket bans and isolation. This is not happening; on the rare occassions where human rights are referred to it is almost never meaningful or practical nor clear that this is the law. Government drafted guidance continue to astonish us at BIHR, but most importantly, has supported poor practice that systematically isolates people, surviving without so many of the things that fill life with joy, hope and meaning. We agree with the JCHR that the Government must now prioritise people's right to private and family life (Paragraph 24). Residents groups should be involved in preparing guidance, ensuring that strong advocates for the right to private and family life are heard when key decisions are made. (Paragraph 30)

Regulators of health and care are public bodies that are also legally bound to uphold the rights in the HRA; they should be ensuring services understand this needs to happen. The JCHR report is highly critical of England's regulator, the Care Quality Commission: 

"It is clear that public authorities do not have a clear enough view of the care home sector’s adherence to the guidance on visiting. It was astonishing to hear the Care Quality Commission (CQC) claim that they were not aware of any care home in England that was not following the guidance, despite clear evidence to the contrary from residents and their families. The CQC needs to get a grip on what is going on in the care home sector and put in place more robust processes to monitor adherence with the Government guidance by the end of May 2021. The CQC urgently needs to establish better processes for collecting data and monitoring the right of care home residents to receive visitors. It should collect and publish live data on levels of visiting in every care home, the number of complaints that have been received and how these have been resolved. The CQC should immediately look at a sample of care homes to help it assess the sector’s compliance with the government’s visiting guidance." (Paragraphs 62-63)

Importantly, we need to keep equipping people, families, residents groups, carers and care home staff with the tools they need to make sure people's human rights are being upheld each and every day. We know this is possible, it has been happening throughout the pandemic. 

For example, the team at Kepplegate and Care Lead Adam Purnell, have shown that it is possible to not have a Covid-19 breakout and make sure people can still be with their families. It is worth following Adam on Twitter to keep updated on the measures they are taking which has prioritised wellbeing over isolation, with public health measures on testing and safety protocols over locking the doors and is all the better for it. 

We've also supported people to challenge visiting restricting simply by raising the Human Rights Act in conversations with staff, and for those staff to use this challenge as an opportunity to better understand the law and how it can support them to do things differently. 

Edna and Emily 
 
Edna is 83 and lives in residential care; her daughter Emily visits most days after work. Following a Covid-19 outbreak, the home put a no visiting policy in place. It has now been 34 days, and Edna is isolated and lonely, missing Emily hugely. Emily had accessed some support on the HRA and speaks to the care home manager about her mum’s right to private, family life, home, and correspondence, which the home is legally obliged to respect (Article 8, Human Rights Act). Emily discusses how this right includes mental and physical wellbeing, family, and other relationships, and whilst it can be restricted to protect her mum and/or others from harm, this needs to be proportionate. With no consideration of Edna’s ability to keep in touch with Emily, the manager recognises that a blanket ban on visiting is not the least restrictive option. Knowing that they have legal duties under section 6 of the HRA, a meeting is called to agree what alternatives can be put in place whilst they deal with the current outbreak. After the meeting, staff put in place several measures which are less restrictive to support people’s mental and physical wellbeing whilst still protecting the right to life, which is a real and immediate risk during a Covid-19 outbreak. The measures vary as staff know the same measure will not work for everyone but include video calls, PPE provision for visitors of those for whom video calls are not possible, a gazebo in the garden and a floor-to-ceiling screen. Some restrictions are still needed but applying the HRA in practice has ensured this is based on each individual and is more proportionate. Emily now visits her mum every Sunday, wearing full PPE, until the outbreak is contained. The HRA helped keep a family together at a time when they need each other the most.
 

More law?

The JCHR is calling for specific statutory solutions to the family life issues in care homes and we can see the argument for it. The infuriating thing is though, this should already be seen as the law, it is covered within the rights and duties in our Human Rights Act. A new law might address the immediate issue and relieve some people’s suffering, which has significant value. But it does not address the wider issue, so starkly spotlighted this past year, that the operating assumption within government, regulators and public services is not one of human rights. In this environment it becomes easy to "other" those seen as "vulnerable". Paternalism is all the more justifiable, that road to hell being paved with all those good intentions.  Seeing people as rights-holders, as the same, as human can be an incredibly powerful tool for change. That power is anchored in the law, not simply optional extras. But this means we need to make sure that people, communities and frontline staff have respecting and protecting human rights as the starting point for policy and practice. 

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