When the Covid pandemic struck five years ago, ministers said they would throw a “protective ring” around care homes – a claim that was not grounded in reality.
Instead, elderly patients in hospital were discharged to care homes which were essentially left to fend for themselves as the virus spread rapidly.
Kate Meacock’s mother, Caroline Gray, had been in a care home for over seven years and had advanced dementia when Covid arrived. At the time, thousands of care homes across the UK banned visits and were told to shut their doors. Residents with dementia were particularly affected as few could understand why they could no longer be in the same room as their loved ones and forced to communicate through a window, if at all.
“I was very much part of mum’s life, going to see her up to five times a week at her care home. Then on 11 March 2020 the doors closed and it would be a full 365 days before I could be with her again,” Ms Meacock said.
Eight months into the restrictions, Ms Meacock filmed herself wishing her mother a happy 75th birthday while separated by a Covid screen. The harrowing footage shows her trying to communicate with her mother as she lies in bed behind a large plastic screen, but she does not realise her daughter is there.
“She had very advanced dementia by this time and it was just horrific, horrific for the staff as well. I’d come and stand one side of the window and the carers would have to bring mum in to the room.
“I could see she was distressed and the carers would have to try and comfort mum saying ‘Kate’s come to see you, Kate’s come to see you’, but she couldn’t see me. She couldn’t hear me, she couldn’t touch me. It was really bad for everyone. The effect it had on mum was devastating,” Ms Meacock said.
“She could speak before the pandemic, it wasn’t brilliant but she could at least verbalise a bit. By the time I got in to see her again I walked into the room and said ‘hello mama’, and she just burst out laughing and crying at the same time. She literally did not let go of my hand for half an hour.”
Ms Meacock’s experience with her mother, who died last year aged 78, led to her becoming a founding member and volunteer for Rights for Residents, a grassroots campaign seeking to ensure that the human rights of those in care homes are protected.
Now, a “groundbreaking” data-sharing pilot to monitor infections such as Covid-19 in care homes in England, supported by the group, may prevent care homes from ever shutting their doors again – even in the event of another pandemic.
Nearly 700 care homes have joined the Vivaldi Social Care Project which will create a system connecting lists of care home residents with routine data sets already held by the NHS, including hospital admissions, mortality data, immunisations, laboratory test results, and prescriptions, allowing a comprehensive view of residents’ health.
Insights from this data can then be used to improve care homes’ strategies against outbreaks like this winter’s “quad-demic” of Covid-19, flu, norovirus and RSV infections, as well as urinary tract infections (UTIs).
Thousands of people have been hospitalised this winter after all four viruses struck but the research project, co-led by a team at University College London (UCL), promises to reduce the impact of outbreaks and improve quality of life for residents.
It could not be more timely as latest NHS England figures, published on Thursday, revealed norovirus hospital cases had hit a record high. Some 1,160 hospital beds on average were filled daily last week with patients displaying norovirus-like symptoms, including diarrhoea and vomiting – an increase of 22 per cent compared to the week before, with 948 people in hospital each day on average with the virus.
Although most patients can often take care of themselves at home, the elderly are at greater risk of suffering more serious and prolonged illness. Last month, the UK Health Security Agency said norovirus cases in England are currently more than double the expected number for this time of year, increasing the risk of ourbreaks in care homes.
In the longer term, the project aims to facilitate clinical trials in care homes, for instance trials of norovirus and RSV vaccines. Until now, care home residents have largely been excluded from clinical trials, despite them often having the most to gain from new treatments.
Ms Meacock said: “What happened with my mother is why this project is so important, because if you can help how infections are looked at, how they’re prevented, how they’re controlled, how care homes – which are unique settings – care for their residents but also protect their carers and staff and keep the doors open for those essential family visits, then that is groundbreaking it really is.”
Summerlands care home in Haywards Heath, West Sussex, was the first to join the project. Manager Lowela Alcazaren said the home has been “really lucky” this winter and not been hit by the quad-demic, but nearby care homes have lost residents.
“Of course, you never know what will happen as it only takes one person to come in and spread a virus. It’s still stressful for me as a manager, because I don’t want what happened in the pandemic to ever happen again,” she said.
“We didn’t lose anyone during Covid but some of the care homes near us lost half their residents. It was so painful for those managers who had to tell so many relatives that their loved ones had died. It was a nightmare every day for me, so stressful, and affected me a lot as a manager.
“We were really left on our own, especially at the beginning of the pandemic because we just didn’t know what we were facing. I really don’t know how we all survived.”
Sue Curnock waited until the worst of the pandemic was over before finding a home for her mother Dee, 93, and now a Summerlands resident, as the family did not want to leave her in a home only to be unable to visit. Curnock’s uncle was already in a care home when Covid struck and she was forced to try and speak with him through a window.
“He was hard of hearing and the microphone never worked. It was just a nightmare. My husband’s mum was also in a care home and she died alone because we weren’t allowed to be there when she died, which was dreadful. He has to live with that,” Ms Curnock said.
The project funded by the UK Health Security Agency and the National Institute for Health and Care Research, is carried out in collaboration with The Outstanding Society, Care England, and NHS England.
It follows on from the Vivaldi study on Covid-19 in care homes, co-led by the same UCL team, which played a crucial role during the pandemic, helping inform decisions on limiting staff movement between care homes to reduce infection risk and highlighted the need for sick pay for care home workers.
Principal investigator Professor Laura Shallcross, from UCL’s Institute of Health Informatics, said it will be a world first.
“We’ve designed it so the care homes are not collecting the data, as they don’t have the time, but pulling the information from electronic care records so it tells us who is in a care home on any given day – that’s a critical piece of information that doesn’t exist anywhere,” she said.
“If one care home is particulary good at managing urine infections what are they doing well and how can we share best practice across all care homes. Equally, our ambition is then about using this network of data to do more complex research studies, such as clinical trials on how well new vaccines work on care home residents.
Different types of dementia can affect people differently, and everyone will experience symptoms in their own way.
However, there are some common early symptoms that may appear some time before a diagnosis of dementia. These include:
“There’s a norovirus vaccine which is bring trialled at the moment but it has not been tested on care home residents, because it is too hard to do research in care homes. So we’d love this to allow us to start to do those really important research studies in care homes, which would be the first time in the world that has been done. Ultimately, we want to protect residents and staff from future pandemics.”
Zoë Fry, a registered nurse and executive director of The Outstanding Society, which shares best practice across social care providers, said that the pilot would be “groundbreaking”.
Ms Fry, who owned a care home during the pandemic, said: “If we had two or more residents or staff with norovirus or Covid symptoms we had to declare an outbreak and shut down. A lot of that was because the policies we’re following is based on data derived from the NHS, but a care home is not a clinical setting like a hospital ward. It is very different.
“You may have three different levels for residents but because of the policy we have to shut the whole care home. If we look at the data collcted from this project it will come up with a different policy so we can keep those doors open.
“Social care has never collected data like this before that’s automated. The NHS uses data all the time, and we just don’t do it in adult social care.”
Ms Fry described the year-long pilot as the “missing piece of the puzzle” in improving the lives of those using adult social care services. Once the data had been gathered, it would be published on dashboards that can be accessed by different providers from the adult social care sector and the NHS.
Ms Fry said: “If we have that data, then we’ll be able to work with care homes to do things differently, so we can create policy to learn from others. The opportunities are huge going forward.”
Professor Martin Green, chief executive of Care England, said the Vivaldi project “gives a voice” to the social care sector, laying a “strong foundation” for other studies to shape social care through research.
“Infections are still closing care homes,” Ms Meacock added. “That’s why this project is so important now. Yes the pandemic was five years ago but it is still ongoing and care homes are closing because of the information they’re being given. That’s not only for Covid, but for flu, RSV, the norovirus, so it’s not a thing of the past.
“As part of the Rights For Residents campaign, it is a vital and exciting project to be a part of, not only for now, but for us all in the future.”
For support, call Dementia UK on 0800 888 6678 or the Alzheimer’s Society which runs a Dementia Support Line on 0333 150 3456.
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