Who cares?

Mahmatma Ghandi once famously said “The true measure of any society can be found in how it treats its most vulnerable members.” By that measure a society that allows its most vulnerable members to be treated without respect must be judged fairly badly.

Imagine this scenario. Some will not need to imagine as they are likely to be living it. You are a married (or cohabiting) couple who have been together for 40,50 or 60 years. You have created a life together, you have friends, perhaps a family, you’ve weathered the bad times and reached a point where you are retired, perhaps with a modest amount of savings for a rainy day. Then one of you begins to lose their memory and becomes incontinent. The other partner soldiers on trying to give support and care but increasingly finding it impossible to cope and rapidly falling into despair. Eventually you make the decision that your partner, somebody you have loved for the best part of your life, must go into a home. But, now comes the first whammy. Finding a home in an overcrowded market. And, then the second whammy. Remember those modest savings well if they are over £23,000 you are now responsible for the entire cost of your loved one’s care. And, whilst you are struggling with the guilt people often feel at making this decision, your loved one is disappearing deeper and deeper into a reality of which you are no longer a part. Old age far from being the golden years rapidly turn into a living nightmare.

Elderly population in the UK

According to Age UK there are around 5.4 million people aged over 75 in the United Kingdom. To be clear they are not the only vulnerable people, but as we now know they were the most susceptible to Covid-19. Around three-quarters of deaths from Covid-19 were in the over 75’s and around one-third occurred in care homes. When younger people, frustrated at the lockdown restrictions, refer to Covid-19 as “only” killing a few elderly it reveals a deeper seated prejudice against the elderly. It is that prejudice that leads to a situation where citizens who have given their lives to their communities, in one way or another, can be discarded.

The Methodist Homes Association estimates that about half a million people currently live in care homes in the U.K. Of these, approximately, 288,000 are living with dementia. In Wales, which is where I live, there are about 23,000 people living in around 673 care homes. Data on this is quite difficult to come by and those figures are taken from a report from the Public Policy Institute for Wales published in 2015 and titled, interestingly enough, The Care Home Market In Wales.

It’s interesting that the report describes the provision of ‘care’ as a market, though a better word might be ‘racket’. According to a U.K. Government report from 2017 the care sector was worth £15.9 billion a year.That report suggested there were 5,500 different providers in the UK operating 11,300 care homes for the elderly. Around 95% of the sector was privatised. At that time there were around 410,000 people in care homes and the cost was, on average, £44,000 per year.

Professional qualifications

Professional carers are very often thoroughly decent people but they are professional only in the sense that they get paid for what they do. Which is just a way of saying that being a carer requires little in the way of the professional qualifications that accompany a profession such as, for example, nursing. You might think this does not really matter. After all, you can't teach people how to care can you? You either do or you don't. But a side effect of not being professionally accredited is that wages are kept down. The average care worker earns between £16-22k a year. As a comparison a refuse collector typically earns £14-22k a year. Working as a shop assistant you might expect £12-20k. 

Pay is not everything, but you might consider pay as an indicator of where society places you in terms of the esteem in which you are held. In 2009 the New Economics Foundation produced a report on esteem in which they make the following point: "The least well paid jobs are often those that are among the most socially valuable – jobs that keep our communities and families together. The market does not reward this kind of work well, and such jobs are consequently undervalued or overlooked." 

Ask yourself this: if you are an ordinary person on average wages what are you most likely to need in your life, a carer or a stockbroker? A stockbroker earns between £15-101k a year. According to Totaljobs website "There are no set qualifications if you want to become a Stockbroker.." So, a stockbroker is very comparable to a carer. There are, according to Statista, 53,000 stockbrokers in the UK. According to Skills For Care there are about 1.6 million people employed in the care industry (thanks to Twitter user @DebraClaridge for providing this data).

All these stats tell us important things about the global picture (at least as it applies to the UK), but behind them lie a multitude of real lives taking place in real time. I have a friend who I shall call Martina whose Mother went into a care home in Wales recently and this is her story. I should stress this story may or may not be typical.

Martina's story

My Mother was diagnosed with dementia in 2014. To start with it mainly affected her memory and she would forget what she had just said and tell us the same thing two or three times. But, other than that she seemed fine. Then last year things started to deteriorate and she started hallucinating, seeing people who weren't there, and also started to lose control of her bodily functions becoming unable to control her bladder. It was this that got to my 90 year old Father. He really did not know how to cope and to be honest it really rocked him.

 

Eventually it became obvious that Mum needed to be in a home where she could be looked after by people who knew what they were doing. My Dad was just shell shocked.By this time Covid was on us and we were in lockdown so getting into a care home was not easy. I knew that Covid had been pretty rampant in care homes so this was pretty worrying, but Dad just could no longer cope and when the first care home went into lockdown the day she was due to go in, he went into meltdown. Our social worker was brilliant and found us a small, family run home not too far from where Mum and Dad lived. The thing was we had no chance to really check it out because Dad was desperate. So Mum went into this home and we had to hope for the best.

 

Everything was fine to start with but because of Covid Mum had to quarantine for 2 weeks. This struck me as really harsh. She had been vaccinated, she'd had a test which was negative, but she had to be in a room on her own. I know this wasn't the home's fault but I contacted my MP and also the Older Peoples Commissioner for Wales to register that I thought it was inappropriate for people living with dementia to be placed in quarantine for that length of time. We have only a limited time with our loved ones and the state is stealing that time from us. The MP just sent me a standard letter back but the OPC gave me a good piece of advice. It was still possible to have a window visit provided it would not put other residents at risk.

 

By the time all this had happened Mum was out of quarantine and able to mix with other residents. I suggested to the manager of the home that I could have a window visit and he thought this was a good idea. But it was in the guidance, so he should have known this. But then as we were about to visit, there was a positive test of a member of staff and the manager told me that the visit was cancelled. I got back to the OPC who said that the guidance allowed window visits even if there was an outbreak. When I told the manager he was really put out. He accused me of going behind his back writing to the MP.

 

After that the whole attitude toward my Mum changed. The staff were constantly phoning me saying that she was abusive and attacking other residents. On the phone Mum was in tears saying the staff had favourites, that they had told her she was a "mean old woman". When I raised this with the manager he just ignored it and said they were trying hard to contain her. She's a 88 year old woman with dementia!  Things just went from bad to worse. Mum was really upset, the staff seemed to be victimising her and then I got a call saying they were issuing a V1. I had no idea what that was and when I asked they said they couldn't tell me and I'd have to ask our social worker.

 

I felt desperate because I felt that the manager was angry with me for telling him what was in the regulations, which he should have known, and they were taking it out on my Mum.  Eventually I found out that a V1 was a safeguarding notice requiring a mental health assessment. The manager of the home was trying to get my Mother sectioned! Unfortunately for him the mental health team found nothing wrong with my Mum but did tell me that they thought the home wanted her gone.

 

A few days later I got a call to tell me Mum  had had a fall whilst in the toilet. The manager had no idea how this had happened giving me two totally different stories. They were giving Mum more and stronger drugs to control her alleged violent behaviour. I’m saying alleged deliberately because apart from staff saying other residents were scared of her there was never any actual evidence. 

 

Then I got a call from the manager to tell me that they were “reluctantly” giving her 28 days notice. A week later my Dad got a 2 line letter confirming that. In a way we were relieved because she was so unhappy there.  I’ve got to say the social worker was brilliant and found her another home and she is now there with really dedicated and kind staff and the change in her is amazing. I wrote to the Care Inspectorate in Wales and got a bland letter back telling me that they did not investigate complaints but my letter would be on file come the next inspection.

Concerns not complaints 

The Care Inspectorate in Wales is the statutory body which has responsibility for both adult care and children’s homes. It has a budget of £14 billion a year and  their annual report reveals that they received 1,117 “concerns” last year, none of which they directly investigate. It is interesting that they use the word concern which means “to relate to” rather than “complaint” which means “an expression of grievance”. 

They also received 139 concerns from children’s care homes. At least some of those “concerns” would have been about Ty Coryton a children’s home in Cardiff. According to BBC Wales whistleblowers, or what you and I might call ex-employees with a conscience, described how children were humiliated and restrained. Allegations included a teenage girl locked up because she was menstruating, a 10 year old denied lunch because he had eaten two packets of crisps, a young person who had soiled himself being put in a bath and forced to wash in his own faeces, and a boy held down for over 20 minutes causing a member of staff to think he “was going to die”. A spokesperson for Orbis Care and Education Ltd (profits of £4.86 million last year) told the BBC:

"During the period since these alleged incidents took place, Ty Coryton had 21 inspections or visits (up until 17 May) by independent organisations and authorities who found no faults relating to any of the allegations”

Twenty one inspections and not one of those inspectors noticed systematic abuse. You have to ask whether there is a problem with an inspection regime that fails so miserably? Whilst the companies running care homes rake in huge profits the staff are kept on the minimum wage and homes starved of resources. Martina told me that the home her mother was in (profits of £386k) promised WiFi access when her Mum arrived but staff had to use their own phones for the video calls they arranged.

We are failing the most vulnerable

Care homes are tasked with caring for the most vulnerable people in our society. That they so often fail in that duty is problematic. That we only hear about those failures when a catastrophe happens is an outrage. Martina was advised to write to the home detailing her complaints. She did so and the complaint was investigated by a director of the company against whom she was complaining. The outcome of that complaint which she forwarded to me was “I found no evidence to support your allegations.” Big surprise there. 

The statutory body overseeing care homes does not investigate complaints, the minister responsible for funding this massive business passes on concerns to the statutory body, the homes which are supposedly being regulated are free to carry out their own investigations and invariably find themselves innocent. Family members who complain are told that others are not complaining therefore they must be wrong. Staff who raise their head are in danger of being blacklisted. Meanwhile humiliating and abusive behaviour towards those who are least able to fight back continues.

What is the answer? In 1980 only 17% of the care home market was privately provided. Now it is 95%. This means that 95% of care homes are now seeking to make a profit. And, the profits to be made are huge. HC-One, the largest provider in the U.K. made £3.2 million last year, Barchester Healthcare made £37.7 million last year. That money is in large part public money. As with so many privatisations this was not the state selling off an industry wholesale, it was the state transferring monies from the public purse (that’s your taxes dear reader) to private companies. Private provision does not entail private individuals taking a risk, it is private companies taking over public services and being guaranteed public money to sustain them. Don’t get me wrong, I am not arguing that private provision is always bad, my Father finished his life in a Barchester home and as far as I could tell from 150 miles away was reasonably well cared for. But, if the profits of the companies are so high what are they cutting back on? If those companies were run on a not-for-profit basis how could that money be spent to improve the living conditions of residents and the working conditions of those who care for them? And, how can an industry caring for the most vulnerable in our society be left to an inspection regime that does not even recognise the word complaint and is happy to support a situation where the accused are not just innocent until proven guilty but are allowed to appoint themselves as judge and jury with the inevitable result that the word 'guilty' becomes as redundant in their world as the word 'complaint' is to the inspectorate?