It feels astonishing to all of us that we are still in a situation where the rights of care home residents and their families continue to be neglected and ignored. The money previously raised though Crowd Justice forced the government to amend its guidance on visits into care homes and to drop the requirement that visits out could only be contemplated for individuals of working age. There is still much work to do and we are continuing our work on those fronts (our crowdfunding page in relation to that work remains open), but we are now hoping we can press the Government to drop the requirement that all care home residents must self-isolate for 14 days after a visit out as well.   

The Problem

All over the country, individuals in care homes have been cut off from their lives, their loved ones the outside world, and even external medical care for well over a year now. 

In the name of safety, thousands of people are being effectively imprisoned. After over a year of campaigning for the rights of individuals in care homes during the pandemic, we have launched another formal legal challenge to the unlawful and, cruel guidance that anyone who leaves a care home, even if just for a walk in the park or to go to the dentist, needs to self-isolate for 14 days on return.

We are asking for a judicial review of the government’s guidance that permitted this chaotic and deeply desolating state of affairs, which prevents even individuals whose care plans envision regular visits out as necessary from leaving the care home because they can’t possibly be expected to self-isolate for 14 days on return. Guidance that has been drawn up without due attention to human rights and which ignores the practical realities of its effects is simply not fit for purpose. 

Why This Matters

Over 440,000 people in the UK live in care homes. We often think of them as our parents and grandparents, but there are also many young people with both cognitive and physical impairments included in this group. Being disconnected from their lives and the outside world is particularly hard for them; they often cannot understand why they seem to have been imprisoned and abandoned. It is at least as hard for their families, unable to explain why visits out aren’t possible.

Being indefinitely disconnected from the outside is not just distressing: it can cause irreversible harm. It is particularly cruel on sunny Spring days when the rest of the country has been given a clear roadmap out of lockdown. Care home residents have suffered disproportionately through this pandemic both from the virus but also from enforced isolation, as we all enjoy our freedoms. They must not be left behind again. 

Links to the outside world are essential in helping individuals with conditions like dementia, autism and other learning disabilities or with brain injuries hold on to the connection to their sense of self and their place in the world, which is crucial to their survival. People unfortunate enough to get COVID-19 may recover; nobody recovers from dementia or cerebral palsy. Families know this. They can see how their loved ones have suffered throughout the time in which visiting restrictions have applied, and the Office for National Statistics (ONS) confirms that deaths from dementia and other degenerative conditions have risen sharply during the pandemic. 

It is extraordinarily hard for families to see their loved ones and a whole section of the population being left behind again. Everyone else is being encouraged to go out - to the pub or a restaurant, for a haircut or a massage. And yet individuals in care homes cannot even go for necessary external medical appointments, nor for a walk in the park, without facing 14 days of self-isolation on return. 

The person living in a care home is being given no choice or agency at all, and neither are their family.

Time is urgent. The resident of a care home for older people has an average life expectancy of two-and-a-half years. In nursing homes it is thirteen months. More than thirteen months have now passed. Just like the rest of the population, care home residents and their families, most of whom have now been vaccinated are longing for some semblance of normality. They cannot bear the prospect of 14 days of self-isolation on return from any visit out and so if that guidance is applied many of them will continue to be forced to stay inside, in some cases preventing access to healthcare and in most cases with devastating effects on their mental and sometimes physical health. 

The guidance itself recognises that requiring 14 days of self isolation on return means many will not be able to go out at all. 

Why The Government Guidance Is At Fault

The guidance published on 7 April 2021 has no legal basis.

The government admits this and has told us through these proceedings that care homes do not need to follow the guidance and that it is entirely up to care homes whether to require residents to self isolate for 14 days after a visits out or not. However, that is not what the guidance says. The guidance states that it “sets out the approach that care homes should take to planning and supporting visits out of the home where residents wish to make them. It explains the measures that should be taken – by the home, the resident and others taking part in the visit – to manage the risks. The most significant of these is the requirement that a resident making a visit out of the care home should isolate for 14 days on their return (the day of return is day zero).”  

Many care homes consider they are obliged to follow the Government’s Guidance. They dare not open their doors, fearing legal and financial liability. The Government is seeking to abdicate responsibility but it is only the government who can provide a structure in which care homes can be confident that they can balance infection control measures against the needs of their residents to be connected to their loved ones and the outside world.

What We Want

A person should have the right to make safe trips outside, subject to risk assessment and infection control measures, without being punished by self-isolation for 14 days. 

If extraordinary circumstance makes it necessary to restrict this right, that restriction should be applied equitably with the rest of the population. For some people with profound disability, whose care plans require regular trips home/to visit family or for those who require trips out for necessary medical appointments, it should not be applied at all.

We are therefore asking that the government amend their guidance, paying proper attention to the individual needs of people living with disability. They need to show leadership and awareness of the problems facing care homes and local authorities. They cannot outsource this. Visits out should be enabled wherever it is possible to do so safely, without the imposition of a blanket “requirement” to self isolate for 14 days which in effect prevents any visits out from happening. 

Steps Taken

We are one of the hubs to which care home residents and their families come and share their stories. We have done our best to campaign for change without taking legal action - considering it a last resort - but now we feel it is unavoidable and have said so publicly. Our solicitors at Leigh Day agree there is a case to answer.

Next Steps

Our lawyers are preparing to file proceedings in the High Court. They have already sent a pre-action letter and received an unsatisfactory response. We will continue to provide updates on our progress. 

Who We Are

We are Nicci Gerrard and Julia Jones, co-founders of John’s Campaign. We began the campaign after the death of Nicci's father, Dr John Gerrard. The campaign is founded on the simple fact that people with dementia need to be connected to their family and their lives.

Our lawyers are Leigh Day and Matrix Chambers. Our start target is £5,000 and our stretch target £65,000. The campaign period is three months.

Some Stories

*Names have been changed to protected identity

Tony and Debby speak out for their son  - you can see a video of their story here

Jane*

Jane, whose 83-year old father Reg has not been allowed to go out for a walk or visit anywhere outside of the care home in over 12 months, explained that prior to March 2020, her father who has full capacity, regularly visited family, shops and local attractions. He decided to move to a care home to avoid feeling isolated and vulnerable at home but is now feeling more isolated than ever. His daughter is not allowed to take him out for a walk in his wheelchair, even though she is regularly tested at work and in the care home and Reg has had Covid-19 and been vaccinated. Jane has been asking the home to carry out a person-centred risk assessment to allow for short walks outside and has demonstrated various ways she can minimise risks . However, because Reg would face 14 days of self-isolation on return this is not possible. Jane said: 

“My dad cannot live with the threat that if he wants to be taken out for a walk in the park, he then has to stay isolated in his room for two weeks. The risk of being isolated is too much, he can’t cope with the isolation period. The days are long and hard enough as it is. He’s done it before with Covid and he doesn’t want to experience the severity of the isolation and loneliness he felt for 14 days on his own, so he doesn’t have a choice, there is no choice. He’s disheartened. He feels completely separated from regular life, including his wife who lives independently. The reality of his situation is one of loneliness and isolation and of no outlook. He lives in a home where he has caught Covid already but the hardest part is that he has nothing to look forward to. He keeps saying “I just want to get out”. He doesn’t have an en-suite room so when he previously had to self-isolate he had to use a commode in the room. It’s just so dire.” 

Dana and Tom* 

Dana and Tom have been desperate to see their 30 year old son Robert who has autism and lives in a care home. Robert’s care plan makes provision for regular outings and time together with his parents but that is no longer possible. His parents currently can’t visit because of the distress this causes for Robert who can’t comprehend why he is not allowed to go home with them at the end of the visit like he used to. Robert has had two vaccinations and so has everyone in the care home. His parents undergo regular testing but they still can’t take him out of the care home without him facing 14 days of self-isolation on return. Robert’s mother Dana said:  

“Robert would never be able to do 14 days isolation. He wouldn’t be able to comprehend it. 

If Robert could access coming home, which he asks for every night, his smile would be from ear to ear. He loves coming home. He has always come home. 

I hate lying to Robert every night, asking if he can do a couple more days for me. He says “I am being good mum, but when am I coming home?”. We desperately miss him and feel as parents that all of our rights and Robert’s rights have been taken away, its like we don’t have any.” 

Flora*

Flora’s sister Kate* is disabled and lives in the grounds of a large residential care home. Both Flora, her partner and Kate have now had two vaccinations and weekly Covid tests. Before lockdown, Kate had been coming to stay with Flora every three weeks for most of her life but because of the 14 day isolation rule on return, this is no longer possible. Flora said:

“The 14 day isolation rule is barbaric and prohibitive. Kate having to isolate would be absolutely impossible, they would have to lock her in her room. It’s a catch 22 situation.

What will need to change for care homes to allow people out? What is the road map? With the vaccinations this is as good as it is ever going to be for care home resident, you can never mitigate against all risks. Individualised risk management plans are so important in this situation, a blanket policy across everybody doesn’t make sense when everyone’s needs are individual. It is a deprivation of liberty. If lateral flow tests are an acceptable means for staff to go in and out, why is the same not applied to residents? 

This country has fought so hard to make things more accessible for disabled people, and it now feels so contradictory and like we are going backwards. I have always been able to sort anything out for my sister, but now Kate has realised that some things are bigger than me and that people who have never let her down in her life seem like they are letting her down now. Her mental health and my own has suffered and no one can put a price on that.”

Lucy* 

Lucy and her mother used to like going to the garden centre together before the pandemic. Lucy’s mother lives in a care home. Both her and her daughter have been vaccinated. Shielding for her conditions has now fully ended and others her age who have similar conditions but are not living in care homes are able to meet outside. Lucy’s mother has full capacity and understands the risks of being outside are less than meeting indoors. Lucy says: 

“We do not ask for the earth - just to get her into her wheelchair and walk down to the park, picking up a takeaway coffee on the way. There is a sign in some care homes that says ‘residents do not live in our workplace, we work in their home’ yet sadly care home residents seem to be being held captive.  It’s like being under house arrest. Even prisoners have a projected release date when entering prison but these elders have no such hope and their clocks are ticking louder than anyone’s. They are alive but not living. 

We have gone through months of being told how important being in the fresh air is to people’s mental health and mum has had none of that. I just want to take her to the local park in her wheelchair in the fresh air and look at some flowers. Being kept indoors has been really detrimental to mum’s health. She’s depressed, I can see that in her actions, she doesn’t read like she used to, she doesn’t turn the TV on, she doesn’t want to pick up the phone, the staff say she is a little bit sharp with them which is just not in her nature at all, it’s all these things that are a real worrying. She has always been very stoic and kept a cheerful face but she’s mostly sad now. She has even said she is depressed, she said: “It’s depression isn’t it, this is what depression feels like”.