Disabled victims of the Covid care home scandal
DISABLED youngsters are being ‘locked up’ and barred from seeing their parents amid growing chaos over coronavirus restrictions in UK care homes. Scores of anguished families have contacted The Mail on Sunday with harrowing stories of their children, many of whom have complex needs, self-harming. This is a reaction, say experts, to the loneliness, fear and frustration they face. One dedicated father has told how his normally bright, happy 22-year-old son had repeatedly punched himself in the face until he was left bleeding and bruised, and ripped out his own toenails during an episode of extreme anxiety.
The problem came to light only after the father noticed his son’s wounds during a video call.
Another young woman has torn out her own hair, and a once-cheerful 35-year-old woman with a learning disability was physically held down by care home staff – after reaching for her mother’s hand.
‘She just wanted to cuddle her mum,’ said devastated Jackie Snow,
58, a part-time book-keeper from
Hampshire, who added that she’d been warned that if her daughter
Amy touched her, they’d shut her in her room for 14 days.
Last night charity bosses hit out at the ‘shameful’ practices, accusing homes of violating human rights law. Dan Scorer, head of policy at disability charity Mencap, said:
‘Care homes have a duty to protect their residents’ human right to family life. But this is not being done – many are enforcing unnecessarily restrictive policies.’
Scope warned that ‘bewildering’ rules were resulting in heartbreaking situations. They added:
‘Cutting people off from their loved ones risks damaging their mental health.’
One father, Nigel Over, 53, from
Livingston in West Lothian, told this newspaper of the battle to see his son Matthew, 22, who suffers complex disabilities. F OR the first four months of lockdown the family was barred from visiting his care home in Musselburgh, East Lothian. Six weeks ago, single-person, 30-minute meetings in the garden were permitted.
It means that in six months, Nigel has seen his son, who suffers a rare condition called SmithMagenis syndrome, for just a few hours at two metres apart, and cannot touch, let alone hug him.
Residents are prohibited from venturing out of the premises – so Matthew’s thrice-weekly pottery classes and daily walks into town have stopped. Once an active young man, he has become frustrated, anxious, angry – and, shockingly, has started to self-harm.
During one video call in early July, Nigel and his wife, Angela, 51, spotted a large, red gash on the middle of Matthew’s forehead.
In the days beforehand, he had punched himself in the same spot between his eyes over and over again, until he broke the skin. ‘When he was five or six, and he became very anxious, he’d poke his own face, but we hadn’t seen him do anything as severe as this since then,’ says Nigel.
‘He’s also smashed 18 pairs of his glasses since the start of lockdown, as well as countless mobile phones – out of frustration. He isn’t even allowed to go for a short walk, for fresh air.’
Matthew moved into the home five years ago and Nigel has visited every week, without fail, often taking his son for mini-breaks to Center Parcs, enjoying macaroni cheese at their favourite cafe, or bringing him home for the weekend. Moving Matthew into residential care was the ‘toughest choice’ Nigel has ever had to make, but his increasingly difficult behaviour in the house he shared with his young teenage sister, Susan, became impossible to control.
Despite this, Nigel says care has, until now, been a positive step. ‘He’s been able to be independent, and we’ve always been just a phone call away so he’s never felt alone.’
But since the lockdown began, he has noticed a dramatic decline in Matthew’s health. ‘When we leave after our 30-minute visits, he calls within minutes, whimpering down the phone about how much he misses us. Most evenings he’ll just retreat to his bedroom. I keep explaining to the home that his mental and physical wellbeing is at serious risk if he’s denied proper contact with his family, but it makes no difference.
‘We’ve been told he’s had endless toenail infections – usually caused by him ripping his toenails out when he feels anxious. Or perhaps he’s hoping, if he’s injured, it means he gets to see us. We can’t be sure.’
Over the past two weeks this newspaper has told the stories of scores of older adults, many with dementia, cruelly kept away from loved ones for the entire pandemic. Amid the easing of restrictions elsewhere, care homes across the UK, without clear guidance from Government, have remained in lockdown. We have now received hundreds of letters and emails from distressed families of those in care. Among them were also disturbing reports of people with complex learning disabilities in their 20s and 30s locked up, and kept away from their parents.
There are roughly 1.5million Britons with learning disabilities, and 50,000 of them are in full-time care. Many do not have an underlying medical condition placing them in the ‘vulnerable’ category.
And yet reports from families and charities suggest most have remained completely confined to their homes. One desperate mother,
Trisha 43, from Lancashire, hasn’t seen her daughter, Anna, 23, for six months – the Cheshire care home she lives in has banned all visitors and trips outside the premises. Anna suffers severe learning disabilities and cannot speak, wash or dress herself.
Yet prior to lockdown, she lived an active a life as many 23-year-old women, enjoying daily visits to friends at a local trampolining club, meals out at restaurants and walks on the beach with her family. Once a fortnight she would make the 50mile journey to the family home for time with Trisha and her brother and sister.
‘As soon as Covid hit they put their foot down on all visits. She can’t even go for a drive in the car with her carer,’ says Trisha. ‘We’ve tried video-calling but she doesn’t engage.’ Worryingly, Anna too has also been injuring herself.
Studies show that up to 40 per cent of learning disabled adults in residential care self-harm – particularly when distressed. ‘The staff told me she’s started to pull out the hair on the top of her head. There’s barely any hair left,’ says Trisha, who works for an organisation supporting autistic people.
‘I haven’t seen her do this in her whole adult life. Isolation is the worst thing for her – her behav
iour gets more extreme and she eventually refuses to go anywhere or even take a bath. I’m frightened she’ll end up being sectioned.’
Shockingly, the care home’s medical team sent her a letter in March, asking if she wished for Anna to be resuscitated, should she become critically ill with Covid-19. Trisha was horrified. ‘She’s a 23-year-old girl. Before all this, she was thriving and happy. Why on earth wouldn’t I want doctors to save my daughter’s life?’
She points out that Anna does not have any medical conditions that mean she would be more likely to suffer severe Covid. At the end of July, the Department of Health and Social Care updated the guidance on care homes, allowing a ‘single constant visitor’ who must ‘wear PPE beyond a face covering’, if having close contact with a resident – but, crucially, contact is not prohibited. Despite this, it seems homes have been over-zealous in their reading of the guidance. Parents have told us their disabled children are being forcefully restrained when attempting to touch them. Jackie Snow visited her daughter
Amy for the first time in five months in mid-August. She left barely an hour later, traumatised. Within minutes of the visit, Amy, 35, who has a rare genetic condition, Angelman syndrome, causing significant cognitive problems, was physically restrained by two members of care staff after she reached for her mother’s hand. Jackie said: ‘She normally grabs your wrists or slumps herself on your lap, or puts her arms round your neck – she’s a loving, engaging person.’
The care home provider says the ban on physical touching is in place to protect residents from catching Covid-19 from visitors.
And Jackie has been warned that should Amy touch her, she will be shut inside her room alone for two weeks – a situation her mother says she would find unbearable.
Until the first week of August, the facility’s Covid-safety policy prohibited family members from visiting at all. Now, Amy is allowed supervised visits from one household in a gazebo outside the home, with a table placed between residents to separate them. ‘She was twisting and wriggling, clambering over the table, desperately trying to make her way to me,’ says Jackie. ‘It was heart-breaking.’
Unable to watch her daughter being restrained, Jackie cut short the long-awaited meeting.
‘I ran to the entrance gate and locked it before she could get to me. I was crying but didn’t want her to see so I said, “OK, lovely to see you, Amy, time to go now.”
‘She looked at me as if to say: Why are you abandoning me?’
Now, with cases on the rise again, life for disabled youngsters is set to get even lonelier. Outright bans on visitors and trips out have been reinstated in homes and supportedliving services in the North West, parts of the North East and the
Midlands. Anthony Ellis, a 33-year old from Sutton Coldfield in Birmingham who has cerebral palsy and a learning disability, has been banned from seeing his family for the second time in six months.
His mother Sylvia, a retired police officer, was delighted when they reunited after three months of separation. ‘I see him every week and meet him in the pub for scampi and chips,’ says Sylvia, 70. ‘So sitting 8ft apart in the gardens for an hour a couple of times wasn’t ideal, but it was at least something. He was singing with happiness for days before he saw me, he was so excited.’
But three weeks ago, following an uptick of cases in Birmingham, the supported-living facility where Anthony lives barred visitors again for the foreseeable future.
Sylvia has been told she isn’t even allowed to wave at her son through a closed window. ‘I have a permanent ache from missing him,’ she says. ‘He was frightened about this happening again too and I worry because he suffers anxiety attacks, especially when he’s cooped up.’
At the start of the pandemic, the Government introduced legislation granting the NHS indemnity, meaning the health service would not be liable if something went wrong with their treatment of Covid-19, given it is a new, unknown disease. But these measures do not apply to care homes. As a result, insurance costs for residential facilities have become ‘extortionate’. According to the National Care Association, some premiums have risen up to 800 per cent. Last week the Government announced that an extra £500 million will be injected into adult social care in the coming months. But it is not clear how much of this will be ring-fenced for testing younger adults with learning disabilities.
Adam Sampson, CEO of St Elizabeth’s, a residential home for people with complex needs in Hertfordshire, warned: ‘We are supposed to test staff every week, and residents monthly, but the test kits ran out quickly. We have 550 kits left for 600 staff and 200 residents and we’re struggling to get confirmation that we’ll get more.’
After months of Jackie Snow fighting the care home to allow her daughter to touch her, last Tuesday a manager agreed to tell staff not to restrain Amy during the next visit. But on Wednesday morning, as Jackie prepared to leave for the home, she was called to be told that problems with getting test results for staff meant visitors were no longer allowed at all.
‘After weeks of fighting, it’s just another step backwards. You learn, as a parent of a disabled child, that you’ll always be fighting for something. Nothing comes to help you.
‘You have to go out looking for it. And now, with winter coming, it’s only going to get worse.’
One desperate mother hasn’t seen her daughter for six months