Killers have more rights than care home residents – it’s a scandal that shames us all

Sue’s mother is in a care home. The care home manager’s husband has Covid. The manager tested negative so she can still go to work. Sue’s mother tested negative, Sue tested negative. “But we can’t visit Mum, and Mum cannot leave the home. She cannot even leave her bed for 14 days, because the manager’s husband has Covid!” This has to stop.

It’s a Monday nine weeks ago. Adam’s terminally ill father is in hospital on antibiotics. Adam and his sister are told he has about two days to live. But a nurse tells them they can’t visit their father until he qualifies for “end-of-life” care on Friday, when his course of antibiotics finishes. “But the doctor says Dad will be dead by Wednesday,” Adam protests. The brother and sister are told that, if they give permission to halt the treatment, they can say goodbye in person to their father. This has to stop.

Mathew writes: “My mum had a stroke. We were not allowed to see her in hospital when she most needed us. She was scared and alone. I wrote to the hospital management and, after three weeks, my dad was allowed to visit. Both Mum and Dad had to wear full PPE, mask, plastic pinny and gloves. They weren’t allowed to hug, kiss or touch. Barbaric. They had a nurse sitting there watching to make sure they didn’t touch. The window was wide open and they both got very cold. Dad is a bit deaf and he couldn’t hear Mum through the mask. I am sending you a photo, Allison, of the nurse keeping watch over my poor parents. I wasn’t allowed in to see my mother, but I took the photo from the corridor.” This has to stop.

And here’s Sally: “Last January, my husband, who has a diagnosis of young-onset Alzheimer’s, was admitted to a specialist hospital for dementia. At the time, he could talk, walk, use the toilet and eat independently. As it was high-Covid time, I was not allowed to go with him or visit for five weeks. They told me he was constantly looking for me. He became very agitated and aggressive with staff, resulting in him spending over 100 hours in a seclusion room on 11 occasions. He developed Covid, cellulitis in his legs, wouldn’t sleep in his bed, had a seizure, allergic reactions and two bad falls to his head, all of which resulted in four trips to A&E.

“When he left to go into a nursing home in May, he was doubly incontinent, couldn’t feed himself, had lost his speech, was bent forward with poor mobility and required 24-hour one-to-one care. At a ‘best interest’ meeting, I was denied the right to bring him home. Now he has poor health. He is currently in hospital and as I am Covid-free I hope to visit soon. I strongly feel that if I had been able to go with him into the hospital, the outcome would have been much better. I lost my husband. I feel deep regret that I let him go.”

Even after all of the horrors listed above, John’s Campaign – which fights for the right of people with dementia to be supported by family carers – had to battle for Sally to be “allowed” to visit her husband in the acute hospital when he was refusing to eat. “They were going to tube-feed him, rather than allow his wife to come in and do it,” recalls Julia Jones, co-founder of John’s Campaign.

Having read a hundred stories like Sally’s and Adam’s and Sue’s and Tim and Helen’s, I feel almost chemically altered. The sadness seeps into your cells like icy water dripping into a cave. I cannot recognise the nation where such things are taking place, yet I know that heartless place is our country.

Early in the pandemic, many rules were devised by Brains-from-Thunderbirds types at the Department of Health and in Whitehall’s “Nudge Unit”. They lacked compassion and basic common sense, but people were threatened and ostracised if they dared challenge them. Yes, there are lots of good, kind nurses, doctors and carers in the system, but they were intimidated and uncertain about what they were “allowed” to offer desperate relatives.

Tomorrow, as the Plan B restrictions are lifted, much of the country will mercifully go back to normal. But not for hospital patients or residents of care homes. As Simon, a former inspector for the Care Quality Commission, wrote to the Planet Normal podcast: “Care homes will be left behind in a morass of badly written and unduly restrictive government guidance. My concern is they will become clinical ‘protection’ facilities, with constant testing, isolation and mask-wearing.”

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