Disabled Britons are still being trapped inside care homes for weeks as a result of ‘inappropriate’ rules designed to protect those in old people’s homes from Covid, campaigners warn.
Experts say the strict isolation rules are not necessary for the majority of disabled people who are not vulnerable to the virus – and The Mail on Sunday has learned of a number of residents, some in their 20s and 30s, who have developed serious health problems as a result of the continued isolation.
One 29-year-old woman became so distressed while isolated for three weeks that she developed depression and stopped eating and drinking, according to her mother.
And twice in the space of two months, a 33-year-old man was forced to stay inside a single room for a two-week stretch, barely able to move from his wheelchair, which has damaged his mobility.
‘Before, he could put one foot in front of the other and stand up while he waited for us to arrive,’ says his mother.
‘Now he just topples over on the floor – his muscles have wasted, and he can’t hold his weight any longer.’
Disabled Britons are still being trapped inside care homes for weeks as a result of ‘inappropriate’ rules designed to protect those in old people’s homes from Covid, campaigners warn. Pauline (left) says her daughter Gabriella has become ‘a shell of herself’ after having her daily activities at her care home ended
Currently there are few legal pandemic restrictions on care homes.
Indeed, the Government recommends trips outside and says visits should be encouraged – for an unlimited duration – as long as the visitor presents a negative lateral flow test and calls ahead to arrange the visit.
There is also guidance for outbreaks – when two or more people test positive for Covid.
While visitors in general are not allowed inside the home for 14 days, one named person for each resident is permitted to come in, to offer companionship or help with care needs. The named person is known as an essential care-giver.
There is no guidance on isolation for residents during an outbreak, apart from movements outside the home being kept to a minimum.
But The Mail on Sunday has learnt of cases where care homes are taking the rules to extremes – confining residents to a single room and banning even their essential care-giver from visiting.
Some residents of homes have physical disabilities and others have learning disabilities, such as autism.
One mother told of her 47-year-old autistic son, who is ‘fit and well’, being subjected to a two-week isolation last month in which he wasn’t even allowed out for walks.
‘A mother I know who has an autistic son in a care home for learning disabled people nearby told me that during an outbreak, she can only visit through a window.’
IT’S A FACT
Disabled people spend roughly £583 a month more than the average person due to costs related to their disability.
While accepting that a standard five-day period of Covid isolation is reasonable, she argues that the additional time ‘locked-down’ is unnecessary, and unfair.
She says: ‘These men should be allowed to live a normal life, to go to the pub and see friend, just like everyone else.’
Gemma Harpum, of charity The Challenging Behaviour Foundation, said: ‘We know some people with learning disabilities are subject to strict restrictions during Covid outbreaks. Where multiple people contract Covid, this may mean families are unable to see their relative for a significant period.’
Diane Mayhew, co-founder of the Rights For Residents campaign group which has fought since Covid began for the right of people in care homes to see loved ones, said: ‘We are still hearing from families who are struggling to see their young, disabled relatives in care.’
And Julia Jones of Rights For Residents adds: ‘These young people don’t understand why they’re being left trapped inside, subjected to rolling lockdowns, while everyone else gets back to normal.’
The Mail on Sunday is aware of cases where residents deemed vulnerable were not allowed to leave the home for everyday activities, such as going shopping, even when no one had tested positive for Covid.
One mother of a 29-year-old woman says: ‘I asked the home if I could take my daughter out bowling and to the cinema, but I was told no, we have to wait. But they are all vaccinated – what are we waiting for?’
Experts say subjecting learning disabled people to harsher restrictions than the rest of the population is unwarranted.
Professor Keith Neal, infectious disease expert at the University of Nottingham, calls the situation ‘scandalous’.
He adds: ‘We are inflicting serious mental health problems on people because of a perception that, just because you are considered a vulnerable adult, you are automatically vulnerable to Covid.
‘In fact, the risk of death from Covid for many adults with disabilities is not much higher than the average middle-aged man. With vaccination, there is no reason why they shouldn’t be subject to the same rules as the rest of us – which is no rules.’
There are exceptions. Studies show that people with Down’s syndrome are 12 times more likely to die from Covid that the average person, even after two doses of the vaccine.
But Down’s syndrome represents only a very small proportion of the 1.2 million Britons with learning disabilities. And only a small proportion of people with physical disabilities suffer problems with the immune system that mean they won’t respond well to the vaccine.
Experts say the strict isolation rules are not necessary for the majority of disabled people who are not vulnerable to the virus (stock photo)
Damian Field from Sense, a charity that supports people with complex disabilities, says: ‘There will be some disabled people who are still vulnerable, despite vaccination, but a large number are not.’
Research from Sense shows that feelings of isolation among young disabled people have risen since last December.
The findings come in the same week that MP Gillian Keegan, Minister for Care and Mental Health, is said to have dismissed campaigners’ calls to make visitation in care homes a legal right.
The Mail on Sunday was among the first to reveal the distress suffered by disabled people trapped in care homes without visitors for up to a year, in the first year of the pandemic. Some had become so traumatised by the isolation that they had begun to self-harm.
In January 2021 we told the story of one 42-year-old disabled man, Sam Shepherd, who had seen his mother just a handful of times since January 2020 due to visiting restrictions. He had taken to biting himself, shouting and banging doors to express his despair.
One young adult who has seen his health deteriorate as a result of multiple lockdowns is 33-year-old Thomas Graham, who lives in a care home for learning disabled people in the South East.
IT’S A FACT
There are seven million disabled people in the UK – and two per cent of working-age people become disabled every year.
Thomas, who is non-verbal and requires 24-hour care, has endured two lots of 14-day lockdowns in the past two months, after other residents tested positive.
On both occasions he was forced to isolate in his room and spent most of the time sitting in his wheelchair with only a nurse for company. His parents were only permitted to visit at the window – contrary to Government advice.
‘It’s just ridiculous,’ says his mother, Sandra, a 64-year-old former nurse. ‘There was no reason why some of them couldn’t have just sat together in the living room. Instead he’s left sitting in a chair all day like an elderly person, getting more and more frustrated and fed up.’
Before Covid, Thomas enjoyed going swimming every week, as well as regular bus rides out. Since the pandemic struck, he’s been on the bus once and all other activities have been stopped. Carers rarely take him out of his room.
When Sandra and her husband were reunited with their son after one of the home’s lockdowns, his eyes were ‘heavy’ with misery and he was ‘just not with it’, she says.
‘It is difficult to know exactly what Thomas is thinking, but I know he doesn’t like going back to the home.
‘Sometimes when he has to go back, he starts biting his arm and I can tell he is stressed. It’s like he’s saying, “I don’t want to go back there.”‘
For 29-year-old Gabriella Bardon it’s the ending of her beloved daily activities that has turned her into ‘a shell of herself’, according to her family.
Prior to Covid, Gabriella, who has a genetic disorder that causes impairments in language development, physical growth and co-ordination, was a ‘vibrant, happy girl’ who would spend most days shopping, at her beloved music group or in hydrotherapy.
‘She’s always been really happy because she could have a sense of independence,’ says her mother, Pauline, a 57-year-old telecom business owner who lives in North London.
But for two years now, all indoor activities outside the home have been banned for residents.
Pauline recently asked the care home if she could take Gabriella bowling, or to the cinema during the week when it was quiet. The care home said no.
Two members of staff tested positive in December, and residents were put into isolation. Pauline was allowed to visit under essential care-giver status but hydrotherapy stopped, and Gabriella could only walk around the grounds of the home.
A week later, Gabriella went home for a day and Pauline noticed she had lost weight. ‘She refused to eat or drink anything at all. She’d just turn her head away, look down and push her lips together.
‘She’d gone from 8am to 10pm without eating or drinking anything. It wasn’t like her.’
In February, two staff members tested positive again. Gabriella was put into a second round of isolation – this time for three weeks, due to a third staff member testing positive a week into the two-week isolation.
‘What’s ridiculous is that the staff only have to isolate for five days and then they can come back to work and go about their business again,’ says Pauline. ‘So why does my daughter have to stay inside for three weeks?’
At the end of February, Pauline went to visit and noticed her daughter had lost even more weight. ‘She’s very slim anyway, so she doesn’t have a lot to lose. I think she’s about a stone lighter.’
A fortnight ago, Pauline went to the GP to ask for a prescription for antidepressants for her daughter, with the hope of improving her mood and reviving her appetite.
‘This is my happy, energetic, bubbly girl. I can’t believe that I’m now seeing her like this,’ she says. ‘I am not in the least bit afraid of her catching Covid, but I am scared of her being stuck in that room.’
Last week two staff members tested positive again. The care home had previously agreed for Pauline to take Gabriella to a friend’s party, but the plans must now be cancelled as all residents are self-isolating.
‘There seems to be no light at the end of the tunnel for these young people,’ says Pauline.
Families speaking to The Mail on Sunday are reluctant to blame the care home for the situation. Both supported living services and care homes for disabled people must adhere to Government guidance and advice from local public health chiefs.
Official guidance states that ‘local health protection teams, clinical commissioning group infection control leads and other partners can provide advice to care homes to help them’ with risk assessments in an outbreak.
Campaigners say that, in many cases, local health chiefs are using ‘extreme’ interpretations of the Government guidance.
‘We’re seeing that as soon as Covid gets into the care home, local public health teams clamp down on everything,’ says Diane Mayhew of the Rights For Residents campaign group.
Meanwhile, Dan Scorer, head of policy and public affairs at Mencap, said such situations are often the result of over-zealous and overly cautious risk assessments performed by the care provider.
‘It is the responsibility of the care home to look for potential risks associated with visits to places outside the home, and decide if it is safe for residents.
‘If a person is vulnerable to Covid, I can see why a home might deem it unsafe to venture out if there are high rates in the local community. But I see no reason why a young learning disabled person without those needs should be subject to restrictions.’
Some charities suggested care homes may be adopting extreme interpretations of the rules in fear of pricey insurance premiums for Covid-related claims.
‘Insurers came down hard on care homes because of Covid,’ says Damian Field from Sense.
Yet Ms Mayhew says: ‘I understand that many of them [care homes] went through hell in the first wave, so they are cautious,’ she says. ‘But that was then and this is now.
‘I have heard from a family member who overheard staff at one large care provider whispering, “It’s so much easier without visitors coming in.” That says it all.’
Additional reporting: Erin Dean