A Winter with Care Homes and Covid-19
Covid-19 looks as if it is on the rise for Winter 2020
Governments could be criticised for the decisions made about care homes
Unclear rules meant that in certain cases care home visits have been impossible
Visiting, if managed effectively, will not increase risk of covid19 transmission
With the prospect of further lockdowns, it is more vital than ever that we do not forget the severe consequences for care home residents and their families
Care homes find themselves with empty beds
Important to recognise that care homes play a vital role in the economy, and in health care
Coronavirus in winter 2020
As I write this, cases of coronavirus are rising again in the build-up to winter 2020, and it is clear that the government must learn lessons from the decisions about care home care that it has made so far, because many of those decisions have not turned out well. The early public sentiment that was stirred up to blame care homes for the situation has settled - to an extent. The moving searchlight has shifted to the authorities who issue instructions to care home operators. These orders in many cases were virtually impossible to follow, and they changed so rapidly that it was tough to keep up. Care homes were eventually recognised as an essential part of a solution, rather than the source of the problem. But it has taken such a long time for the intolerable situation in which they were placed by government to be highlighted and recognised.
It would be easy but pointless to point the finger and continue the argument about whether what they know now is entirely with the benefit of hindsight or if it would have been obvious from the start to any government that understood more about care homes and the people who live and work there. We are where we are.
And where exactly are we?
Well, the John’s Campaign has appealed for a Judicial Review of the decisions taken by the government. Amnesty International has published a report which it says “highlights the UK government’s failure to protect older people in care homes” during the COVID-19 pandemic. The Alzheimer’s Society has published a report which emphasises how “exhausted family and friends have spent 92 million extra hours caring for loved ones with dementia since lockdown”
Difficulty visiting care homes in lockdown
The lockdown and continued restrictions in care homes have made visiting very difficult and, in some cases, virtually impossible.
I went to see my mum at her lovely care home by arrangement and rang ahead to the home as required to make sure I was Covid free and that she was ready. She fell when walking to the visiting room and they took her to hospital as a precaution. I was not able to go with her. Later that day they let her back to the care home, but the rules said I could not visit for two weeks because she has been “in hospital”. My heart is broken because I did not see her for over a week before that so it will be almost a month since I even saw her. I’ve got no complaints about the care home. They love her almost as much as I do. But she is failing by the day. She doesn’t recognise me through the window, and she can’t hear me on the phone. FaceTime is torture.
The John’s Campaign
The John’s Campaign is arguing that the government acted wrongly on the basis of breach of human rights of the residents and their close relatives. Public authorities are not allowed to interfere with your private and family life under Article 8 of the Human Rights Act 1998. But that isn’t an absolute right. It can be modified if necessary “...in the interests of national security, public safety or…the protection of health.” The government could argue that it made the decisions for public safety with the knowledge available at the time. They thought they were protecting health.
But in terms of “the protection of health” it clearly did not work because so many people in care homes still got COVID. And knowledge available to them at the time would have made it clear that visiting is not an optional leisure activity, but part of the care. Many residents appear to be suffering health problems simply as the result of the Covid-19 visiting restrictions imposed by the authorities.
Outbreaks of the infection must have been brought to residents either by visitors, new residents or staff there. I’ll say nothing here about the numbers of transfers of untested infected new residents from hospitals to homes. That’s now resolved, shocking mistake that it was.
Unreliable testing for care home staff
And restricting staff is extremely difficult. In Canada and Australia, staff being sent home led to neglect. Without testing it is impossible to know whether a staff member is carrying the virus or spreading it. If the care operator is over cautious, they can end up with no staff and having the additional risk of introducing agency staff to their homes. This is a risk that was recognised right from the start, when information was coming from Canada and the US about the risks from agency staff moving from home to home.
Professor Martin Green, the chief executive of Care England, the charity that is the representative body for care providers in England, has said that he repeatedly asked ministers and senior officials to enact the pledge made in early June this year that “every care home” would receive regular testing. Anecdotes abound about staff having to make long trips and, in some cases, impossible trips to get to testing centres. Staff are low waged and may not have time or transport that is needed for some of the drive-through testing facilities. Tests done in the workplace get lost. Results are not reliable.
There was such a restriction on visitors from the earliest days that it would be hard to make the case that they brought it in.
Of course, difficult decisions have had to be made in this public health emergency. It is unprecedented so there is no wonder that some sub-optimal decisions were made in the first six months of the pandemic. But it feels as if it is taking too long to adjust to the information that is now available and being shouted from the rooftops. Thousands of families have already been through this mill. It could be twenty or thirty thousand, depending on how you count them. It is too many anyway.
Visitors least likely to spread infection IF visiting is managed properly
The fault is that the fear of risk of infection takes precedence over the other risks to the older people in care homes in government thinking. We now know that visitors are the least likely to spread infection if visiting is managed properly. Disproportionate restriction on visiting has an often-unnecessary bad effect on residents. It causes terrible hardship. Even after the resident has died, the family lives on with the grief about their last days. The cruel choices about which daughter got to visit when only one was allowed is just one example of the ethical and emotional decisions and dilemmas which will be pored over for decades after all this is over, affecting family relationships far into the future.
The biggest losses keenly felt by care home residents
Here is a newsworthy contrast. Everyone is aware through the news, if not through their own family, of the real hardship being faced by university students, who are experiencing the disappointment of restricted socialising, and the disadvantages of not having face to face teaching. Being confined to their rooms for periods of time has given rise to complaints about risk to their mental health and comparisons with the rights that prisoners have. And it is especially worrying that a number of students are at risk of serious mental health problems. A small number of well publicised suicides in Universities in previous years was already a concern without this additional stressor. However, it could be suggested by sympathetic parents and friends that there will be opportunities for parties and for their education in time to come. They are young, and in most cases fit. They still have a future. Even if they miss this Christmas at home, there will be other Christmases. Memories of “the war time spirit” might make them reflect on the freedoms they have because of uncomfortable Christmases that their grandparents and great grandparents suffered so that they would be able to enjoy these hard-won privileges, now and for the rest of their lives.
On the other hand, the majority of residents in care homes are at the end of their lives. They’ve already lived through their wars and done their service to us. Unlike a healthy student, they are living with a health problem that can be made worse by isolation. This is because many of them, up to 90%, already have dementia as one of their troubles. They have memory difficulties that are lessened by stimulation. They genuinely will forget people they cannot see. Even worse, no matter how often it is explained, they may forget instantaneously why no one they love is coming to see them and continue to feel abandoned. Those residents lose their appetite and become depressed. They lose the will to live. There are many care home deaths that can be attributed to the Covid response, rather than Covid.
The desolation felt by residents is tackled by care home workers the best way they can. They are cracking out the communications technology, learning how to support people using smart phones and tablets to keep in touch. They are constructing visitor pods along a spectrum from pop up tents in the garden to fully constructed sheds and cottages in the grounds of the homes, decorated with bunting and soft furnishings to make them comfortable. At the height of the trouble they often moved into the care homes to reduce the chance of spread, sleeping in temporary beds. In the spring and summer, we even saw staff sleeping in tents to avoid causing infection.
It's about the residents' families - I really don't want to be the one who phones to say that we've got Covid-19 in here. And also, it's to help protect jobs. [Covid-19] testing has been difficult. The government are saying we can get tested but actually when you phone up, they say no - unless you have signs and symptoms.
Sharon Mitchell, manager of Pilgrim Wood Residential Home
Overcrowding NOT the problem with care homes
In the midst of all of this, the number of empty beds in care homes has increased. It is not surprising. People are considering home care, because it might increase the possibility of human contact within families, depending on the local lockdown conditions. The risk of care homes failing has been approached by government providing additional funding to recognise the additional cost of responding to Covid-19.
It is too soon to analyse which care homes are more likely to fail but it is possible to make an educated guess. There may have been homes which were vulnerable before the pandemic. In my book, Care Homes the One Stop Guide, I reflected on how care homes are funded and what can make them vulnerable to closure. Those homes which are entirely dependent on local authority funded clients are at risk when government funding is tight, and councils have to restrict budgets. Well-designed homes that have lots of outdoor access that allows garden contact are likely to be more attractive to families, because of the promise of potential visits. If the home has ensuite facilities in every bedroom, then infection control becomes easier for the staff to accomplish. Homes that are divided into areas where small groups of residents live grouped together, with their own dining facilities lend themselves to having Covid-free areas where residents can associate freely and other areas where temporary special precautions have to be taken.
Care homes have been subject to unjust media representation and government policies. It’s time to recognise the vital role care homes play in our society.
My conclusion is this, a reflection from my book that has not changed, even though the book was printed before the pandemic hit us. A care home is a place of comfort and respite where you can have some fun. People there can care for you and will support you and your family at what is sometimes a difficult and emotional time of life.
More people need to be made aware of the challenges that have been faced by care home residents, care home workers and relatives from February 2020 till now. Operators of those services can rise above the political nervousness in some quarters about the media onslaught this year. We need to be open about what has been happening, even though it is hard for people to look at it. And the most important action now must be to help the government get itself in gear, and use some of the art and science that we have about designing and running care homes, and stop hammering them into a model like a scaled down hospital, which they are not, and were never intended to be.
It’s a real dilemma. We do not want to damage the reputation of care homes by broadcasting how bad it has been. People who don’t know about the best care homes dread them enough already or deride them for operating as businesses. But without some kind of shock to the government, we’ll never persuade policy makers to do better. It is a fact of life that good care homes are needed now and will needed even more in the future. Government policies have smashed into care homes like a wrecking ball, and now they realise that they need to start repairing the damage they’ve done, starting with understanding and supporting the role of families and visitors in care of older people.
If you would like more information, you can buy my book Dementia, the One Stop Guide or Care Homes: When, Why and How to Choose a Care Home. I am available for consultancy for families or organisations. And if you have any further queries or questions, or suggestions for something you’d like to see me write on, please contact me via the Contact Page
See my new course on Dementia the One Stop Guide on Policy Hub here
