Why are care home residents still locked away from loved ones?

With her face pressed close to the window pane and in a strong voice belying her 99 years, care home resident Frances Heaton reads aloud from the piece of paper fluttering in her hand.

It’s a poem the great-grandmother has composed to describe her desolation at being separated from loved ones during the pandemic.

Filmed at her Yorkshire care home by daughter Linda standing outside, on the other side of the glass, Frances speaks: ‘I’m 99. I enjoyed my life. Now it’s an existence. I enjoyed my family. Now they’re unreachable. I enjoyed my outings. Now I’m trapped. I’m 99. I need my family. I’m so lonely. I need a hug. It’s not allowed. I need a chat. 

But there’s endless silence. I’m a prisoner. But I’m innocent. I have rights. But they are ignored. I fought for freedom [during the war] but now I have none. I’m 99. Please help.’

Former prison officer Jim Pegg, 88, has been in a care home in Northumberland since Christmas 2019, following a foot injury that severely affected his mobility. His granddaughter Victoria, 27, a community nurse, says she has seen him go downhill rapidly over lockdown

In 2020, at the start of the pandemic, Frances spent two months isolated in her room. At times, even ‘window visits’ weren’t allowed because of fears of the virus spreading. 

And even when they were permitted, the fact that she is deaf made communication with her family through the glass almost impossible.

Frances’s poem, written in the early months of lockdown, echoed the experience of many of the almost half a million people living in care homes in the UK during the dark days of early 2021, when the virus ran rife.

More than a year on, the situation has vastly improved: the latest NHS figures show 95 per cent of care home residents in England have had two vaccine doses and 81 per cent have had their booster, too. The Omicron variant, though highly transmissible, seems to trigger milder symptoms in those who are vaccinated.

Significantly, there were 40 deaths attributed to Covid in care homes in England in the week to Christmas Eve, compared with a peak of about 1,800 in a week in January 2021.

And yet thousands of care home residents are effectively being imprisoned once again as a result of new Government guidelines — introduced on December 14 (and updated on December 30) — and some care homes’ over-interpretation of the rules, leaving many continuing to feel the pain expressed so eloquently by Frances Heaton.

The resident of one home, Jim Pegg, 88, told his family he felt ‘imprisoned’ — which is tragically ironic, given he is a former prison officer (see box, below).

It’s not surprising, perhaps, that experts are now warning the resulting isolation stemming from such rules poses a serious risk to residents’ health and well-being.

A report by researchers from Oxford University called for an inquiry into tens of thousands of non-Covid deaths in care homes after they found evidence that vulnerable residents had died of thirst, starvation and ‘broken hearts’ in the pandemic.

Their shocking report said almost 40 per cent of excess fatalities were not caused by the virus, with many people dying of neglect and loneliness. 

It isn’t just physical health that’s important 

Retired signwriter John Cross, 76, from Minchinhampton, Glos., has been in a care home for four years since developing mild dementia. 

His wife Angela, 76, has been campaigning since the first lockdown for care-home residents’ rights to family life.

‘It isn’t just physical care that’s important: when you’re in a care home, family is everything. Residents are being denied their right to a family life,’ she says. 

‘John is on his own 24/7 unless I visit, or a carer goes into his room to feed or turn him. He is totally isolated, in a room by himself at the end of a corridor. Before he had a stroke in August 2020, he had a great sense of humour and he and the other residents mixed.

‘In the past year, he developed cataracts so is totally blind. He would have deteriorated anyway, but this is inhuman — the visitors’ pods especially. 

Residents don’t need to be put in a glass case to be viewed like monkeys. He finds it unbearable, and tells me: ‘I’ve got to get out of this place. I’m in prison.’ ‘

Retired Signwriter John Cross, 76, From Minchinhampton, Glos., Has Been In A Care Home For Four Years Since Developing Mild Dementia

Retired signwriter John Cross, 76, from Minchinhampton, Glos., has been in a care home for four years since developing mild dementia

Angela says she had to fight to become an essential caregiver, which means she can visit daily.She and her daughter Rachel handed a petition, with 270,000 signatures, to Health Secretary Sajid Javid last September that said it should be made law for residents to have an essential caregiver.

‘But they left it up to care homes to decide,’ she says. ‘People no longer matter.

‘John rarely speaks now. He wants to come home and has lost his sense of humour. It’s so long since he saw his grandchildren, he asks if they still know him. It’s heartbreaking.’

 

While staff absenteeism and lack of training was partly to blame for this, crucially, the researchers identified a ban on visitors to look after and monitor residents as also a key factor.

Around 70 per cent of people in care homes have dementia or severe memory problems, but many have other health problems that require residential care. All these residents benefit from stimulation that comes from visits with loved ones.

In its updated guidance on care home visitation — introduced as a precaution ‘as we learn more about real-world vaccine effectiveness and disease severity of the Omicron variant’ — the Government acknowledges that ‘visiting is an integral part of care home life. It is vitally important for maintaining the health, well-being and quality of life of residents.’

However, the guidance says that if there is an outbreak in a care home, there can be no indoor visits for up to 28 days following the last positive case. An ‘outbreak’ is defined as at least two people testing positive within the home. 

Although it was reported last weekend that this has now been reduced to 14 days, the transmissibility of this variant means that some care home residents are subjected to a cycle of restrictions and weeks of isolation. The rule compares with the one covering the general population, where you can go back to normal days after a positive test, providing you test negative on days six and seven. Even where there is no outbreak, a resident can nominate only three visitors who can enter the care home for regular visits.

They can also elect someone as an essential caregiver (ECG) — a family member or friend who can provide extra care, such as feeding them a meal or taking them for a walk. An ECG ‘should be allowed to continue to visit during periods of isolation or when there is an outbreak’. However, because this isn’t a statutory requirement, care homes have the power to turn ECGs away.

‘People have been telling us about care homes either picking and choosing bits of guidance or allowing no visitation at all — so it’s a postcode lottery of whether you will be able to see a loved one,’ says Diane Mayhew, co-founder of Rights For Residents, which is campaigning against ‘current inhumane restrictions to visiting loved ones’ in care homes.

The ex-prison officer who now says he feels imprisoned 

Former prison officer Jim Pegg, 88, has been in a care home in Northumberland since Christmas 2019, following a foot injury that severely affected his mobility. 

His granddaughter Victoria, 27, a community nurse, says she has seen him go downhill rapidly over lockdown.

‘My grandpa was always upbeat, but now he’s down and alone,’ says Victoria. 

‘He spends his days in his room, only venturing out very rarely to the dining room. He’s shy and doesn’t find it easy to make friends. And he’s very frail. He could pass away at any time.

‘We come from a big family and my Grandpa and Grandma were the centre of it. Before he went into the home, Grandpa would come to see me every day; and before lockdown, I would visit him most days.

‘When the Government suspended visiting during the original lockdown, we got to see him twice through the window. We weren’t able to speak to him, just see him. When visiting was later opened up a little, we were allowed 30 minutes in a pre-booked visit.’

Jim used to be good with his phone and using FaceTime, says Victoria, but he was diagnosed with Parkinson’s three months ago and can no longer call, further cutting him off.

Now she says the home will not allow any nominated visitors inside unless in a visitors’ pod — essentially a glass box with an intercom, so there’s no physical contact.

‘He’s allowed one essential caregiver, my frail Grandma, who’s 86 and sees him once a week because that’s all she can manage,’ says Victoria.

‘I used to enjoy the visits, but really struggle because he doesn’t understand why I can’t hold his hand, why I can’t kiss him goodbye or why his great-grandchildren can’t sit on his knee.’

Jim is much changed as a result of the restrictions, she says: ‘He has lost so much weight, his mood has deteriorated, he is just withdrawn and sad. He says he feels imprisoned, which he sees as ironic given that his job was in a prison.

‘The care home eased restrictions between December 24 and 26, and Grandpa came to us for Boxing Day with 11 other family members,’ she says.

‘He pleaded to stay on, but he had to go back. Then he had to spend three days in isolation, which felt like a punishment. It was prison all over again.

‘I told the care home I was concerned about the blanket ban on visitors inside the home but they have their own rules, which are different to the government guidelines.

‘My grandpa and other residents may be in the high‑risk group but they are human beings. We all suffered in lockdown and no one wants to go back to that, but these residents are stuck alone in a room.

‘As a family, to know any day could be his last and he has spent almost two years pretty much alone and feeling abandoned — it’s so horrible for us all.’

 

Even if people in care homes are living among others, they can still feel lonely as they aren’t physically connected with friends and family, adds Dr Mani Krishnan, chair of the old age faculty at the Royal College of Psychiatrists.

‘Isolation and loneliness in older people can be damaging for their physical and mental health and can increase the likelihood of mortality,’ he says. ‘The effect of loneliness is so great that research has found it to be comparable to other risk factors, such as obesity and smoking cigarettes.’

Isolation can also ‘exacerbate pre-existing mental illness’ and trigger anxiety and depression in people who don’t have a mental illness.

It can also speed up any decline in mental performance, says Dr Trisha Macnair, a Surrey-based GP specialising in care for the elderly and palliative care. ‘If residents in care homes are isolated, they may not eat well, get up or even stretch their legs. And there can be a decline in cognitive ability.’ She adds that if the brain isn’t ‘stirred up’ through challenging memory and working through processes, ‘there’s a subtle switching down of brain function. This can worsen dementia.’

What seems particularly ‘unfair’ is that people living in care away from their families have faced far more stringent restrictions than the rest of the country, says Helen Wildbore, director of the Relatives & Residents Association (R&RA), which champions the rights of older people in care in England.

‘Our helpline hears daily about the devastating impact on families who’ve been separated from their loved ones. They talk of terrible loneliness and of not being able to see their family when they are in the final stages of life. They want to live, not merely to exist.’

Last week, Jeremy Richardson, the chief executive of Four Seasons Health Care, one of the UK’s largest care home providers, pointed out that since March 2021, 2,320 Four Seasons residents had died from all causes, and only 29 of them (1.25 per cent) from Covid.

In that period, the overall death rate has been below the four-year average prior to Covid. ‘We are depriving people of their right to visitors, which is an absolute outrage,’ he says.

If Mum dies we can see her, but not while she’s alive 

Julian Hamlin, 53, is a composer from Somerset. His mother Nancy, 83, who was a nurse for 47 years, developed dementia in 2018.

‘We didn’t want to put my mother in a care home but it was taken out of her hands after she was sectioned. My father had died in 1992 and she was living alone,’ says Julian.

‘Just before lockdown, she had a bad fall and we were warned she could die. My brother flew over from Qatar to say goodbye.

‘The following day when I went, there was a sign on the door saying the care home was locking down owing to Covid. I thought I I’d missed the chance to say goodbye. But then she rallied — yet I still wasn’t able to hold her hand for a year. With people without dementia, you can wave through a window and talk. But we didn’t even have that luxury. So much of being with a dementia patient is about touch or sound — not staring through a window.

Julian Hamlin, 53, Is A Composer From Somerset. His Mother Nancy, 83, Who Was A Nurse For 47 Years, Developed Dementia In 2018. 'We Didn'T Want To Put My Mother In A Care Home But It Was Taken Out Of Her Hands After She Was Sectioned. My Father Had Died In 1992 And She Was Living Alone,' Says Julian

Julian Hamlin, 53, is a composer from Somerset. His mother Nancy, 83, who was a nurse for 47 years, developed dementia in 2018. ‘We didn’t want to put my mother in a care home but it was taken out of her hands after she was sectioned. My father had died in 1992 and she was living alone,’ says Julian

‘With no family contact there was a steep decline in my mother’s condition. Then, after December 2020, we were allowed visits through a glass partition in a garden room. That first meeting was wonderful. She remembered me. And when I went to leave, she simply said: ‘Stay.’

‘So we all visited her every few days. My two children loved seeing her and we’d sit, talk and hold her hand.

‘This week we were told only three of us can be named visitors.

‘If my mother does die, we will all be allowed to see her as a family — but not while she is alive. How can that be right? We are vaccinated and so is she. Our mother needs us all now.’

 

In a joint letter on January 5 to local health and care leaders and seen by Good Health, campaigners including Rights For Residents and Dr Caroline Emmer De Albuquerque Green from the Health & Social Care Workforce Research Unit of King’s College London called on them to end ‘harmful isolation practices’.

The British Geriatrics Society has also joined calls for care homes to remain open to visitors whenever it is safe to do so.

Adam Gordon, the society’s president-elect and a professor of care of older people at Nottingham University, told Good Health: ‘It’s important that we keep care home routines and visiting schedules as normal as possible when we can, to maintain a normal life for residents and their families, and minimise the risk of deterioration associated with social isolation.’

Campaigners also point to a cruel anomaly in the rules where visitation restrictions are lifted when residents appear to be in terminal decline. ‘So we have a perverse situation where residents distressed by lack of contact with loved ones refuse to eat and drink, become so ill they are given end-of-life care — and this triggers a permissible family visit,’ says Helen Wildbore. ‘The care resident then begins to improve thanks to the contact, so the visits stop.’

Richard Hawes, chief executive of Elizabeth Finn Homes, which runs nine care homes across the country, has tried to support families and residents with their safe and practical interpretation of Government guidance. He says their homes have been fully open. ‘I think that care homes — with testing, vaccinations, boosters and PPE — are some of the safest places right now and will continue to be so. We find those visiting are really understanding of the risks and recognise that to keep their loved ones safe, they themselves have to be safe; in my opinion, they can be relied on to follow sensible behaviours.’

Jenny Morrison, a co-founder of the R&Ra campaign, knows how devastating Covid-enforced isolation can be. Her 87-year-old mother Jean died in her care home in August last year. 

‘Before the pandemic, even though she was physically frail and had mild dementia, Mum had a good quality of life and loved our visits.

‘During the three months of lockdown when we couldn’t go in, she went downhill. She couldn’t understand why we had to be on the other side of the window. She seemed to think she was in prison because she used to say: ‘Get away from the window, the guards will come.’ The rate of deterioration was terrible.’

These days, Frances Heaton, now 100, is one of the ‘lucky ones’. Her daughter Linda has essential caregiver status, and the care home permits her to take her mother out to see the family or do some shopping. 

Otherwise, Frances has to isolate in her room and says this is ‘no life’.

But campaigners want the Government to enshrine its guidance in law.

‘If other occupations can go back to work in seven days [after a positive test for Covid], we have to learn to live with the new situation,’ says Helen Wildbore. 

‘Residents with capacity, or family members in the case of those who don’t, should be able to decide the level of risk. So that they can have everything they need that comes with being in a loving home environment.’

And not feel, as many do, that they are in prison.

Case study interviews by Sally Beck and Julie Cook

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