This article is written by guest author Graham Coult. A personal experience of getting care support for the elderly

Predators and nurturers

Would you trust a pride of lions to look after your sheep? No, because the sheep would get eaten, you’d most likely choose a Border Collie. Would you put your child in the water to learn to swim with a shark? Again, no, the child would be unlikely to survive, you would most likely choose a swimming instructor.

But do you want to see lions and sharks extinct? The answer again is almost certainly no. Lions and sharks are part of nature, part of our ecology. We accept them as they are, and we don’t place expectations on their behaviour which go against their essence. They are predators, so we don’t leave them to guard what they consider their prey, their source of sustenance.

I mention this in the context of East Riding Council, which I feel is, through its social care policy, figuratively speaking leaving lions to guard lambs and sharks to look after babies. That view springs not from political ideology but from personal experience of supporting my elderly parents. I’ve set out some of these personal experiences and key issues I believe they raise below. They are personal experiences, I suspect many others have their own bad experiences but suffer largely in silence.

Stated versus actual priorities

As with most spheres of activity these days, there is a jargon in East Riding’s care system. “Best interests”, and “safeguarding” spring to mind. It being a care context, it would be reasonable to think that it was the best interests and safeguarding of the clients that is the priority. That isn’t the impression I have gained through my experience, rather the best interests are those of the council and senior management, and safeguarding is the council and the care companies’ reputations.

Thus, the priority in East Riding’s care system seems to me to be:

1)      Protect the authority as a body, its governing party councillors, and members of the executive;

2)     Protect the profits of the care providers;

3)     The Council’s staff;

4)     The clients;

5)     The paid carers;

6)     Family members;

7)     Family member carers (very grudgingly).

Shock and stress: introduction to the care system

In April 2013 my Father fell during a routine visit to the ophthalmology department at Hospital A. He broke his hip and underwent hip replacement. He was sent to Hospital A after his operation in Hospital B, but Hospital B was very keen to send him home as quickly as possible. They called in Social Services who came and did an assessment.

A care package was put in place to get my Father washed and dressed each morning in order to support my then 85-year-old Mother as his main carer. The company contracted by East Riding Council to provide care support we will call Care Company X.

I have lived in London for many years. I told Hospital A and social services at the time that I was concerned about my Mother, as she seemed to have been thrown by my Father not being at home. I returned from meetings one evening to find she wasn’t there, and I couldn’t find out where she was. Eventually, it turned out that she had fallen in the street and had been taken to Hospital B. They had found she was quite confused (she said I was in London whereas I had only gone out for the day to meetings in Leeds), but established she had a sister, contacted the sister, my Aunt, and Mum was sent there. I found that out when I told my Father at Hospital B I couldn’t find my Mother. He said she was in the hospital and had been brought to see him, which the staff confirmed. So, my Mum’s condition was known to the health and social care system when they did their assessments for discharging my Father.

Undetected dementia in main family carer

I established a routine of visiting at least once a fortnight to do heavy shopping, prepare meals to put in the freezer etc. In mid-September 2015 I came back for three days and have never been able to return to my own home in London for more than a few hours.  This was because I realised there was something very wrong with my Mother. She was vomiting regularly, she was also quite confused, and in denial. My housebound Father was very stressed.

Care company policy versus dementia sufferer needs

There then began a process, read hard battle, during which it took almost a year to get attention and a diagnosis for my Mother. By January 2013 mental health nurses were coming each week to assess her. She was suspicious and hostile. The care company decided to send a shadow carer in order that she could learn from the regular carer. In principle I can see that this is a very good thing to do. However, in this instance there was a strong risk the extra person would “spook” my Mother and make her even more resistant to the mental health nurse attending, which was crucial to getting a diagnosis and treatment for Mum.

So, I asked that the shadow not call. I received a rota saying the shadow would be coming. I got in touch to ask again that the shadow not call. I received another message that the shadow would be calling with the regular carer, so I rang and asked if my email had not got through. The then “Care Supervisor” spoke to me and said in aggressive tones that they had a policy, and this must be adhered to. She said that she didn’t want carers going out to people’s houses not knowing what to do because she had “been that carer”. I said we had to get proper treatment for my Mother, to which the Care Supervisor replied that my Mother was nothing to do with them, they were contracted to look after my Father, and then shouted down the phone at me in staccato tones “DO YOU – WANT YOUR – FATHER TO- HAVE PROPER CARE – OR NOT.

Aggression versus best interests

This was an astounding way for a member of the management of a company contracted to provide care (which we pay them for) to a stressed family member trying to do the best for his parents. My Mother was my Father’s full-time family carer. The care package was to support Mum in her role as Dad’s main carer. The care company was contracted by East Riding Social Services. The fact that my Father’s full-time carer had advancing dementia was directly relevant to his wellbeing – both physical and emotional because being housebound with somebody who has dementia is very challenging and this was his wife whom he fell in love with when they were both 21. So, watching his wife’s personality disintegrate right in front of him without understanding why was having a very detrimental impact on my Father. Anyone with any empathy or emotional intelligence would understand that, and empathy and emotional intelligence ought to be core qualities in anyone involved in the provision of care. Hospital A, the care company and social services had effectively between them turned a blind eye to a developing potentially dangerous situation.

I resolved the matter by pointing out that my parents’ home was private property and if a shadow carer was sent in when they had been told more than once not to, they would be breaking the law. I also banned the Care Supervisor from the house, with my Father’s agreement (he had, and retains, full mental capacity). If the Care Supervisor had apologised and said she was stressed, having a bad day, we would have understood and accepted her at the house, but no such apology was forthcoming.

“You’re below my pay grade”

I then received a call from the Managing Director (as he now is) of the Care Company. One of his opening comments was: “I have a contract with East Riding Council so I’m not sure why I’m talking to you.” I explained that I was the son of the person his company provided care to and he said, with no grace whatsoever: “I don’t have a record that you have permission to talk to me about your Father”. So, I put my Father on the phone, who put him right.

Once I had outlined the situation – Mum being spooked by shadow carers when we needed her to see the mental health nurses he said, “well if I were you, I’d be asking social services for one of Care Company X’s care packages for your Mother.” The Mother who the company had said was nothing to do with them. The company, whose culture this MD played a strong role in shaping, which showed no signs of understanding how to care for somebody. It was a sales pitch. From a company contracted by East Riding Council to fulfil its statutory care obligations towards the elderly and vulnerable.

Attitudes revealed

Notice some key points here:

• The care company’s MD sees his relationship being with East Riding Council’s upper echelons, not with those being cared for by his company;
• He sees the family members of those his company cares for as his inferiors and people he should not be wasting his time talking to;
• The policies and procedures of the care company take precedence over the needs (physical and emotional) of the person being cared for and his family;
• An issue as important as a housebound man in his late eighties having his main family carer, his wife, with advancing dementia is not picked up by the care company or social services, that the care company sees its client’s wife as not their problem, and that East Riding’s care system allows this to happen – by implication approves of it happening;
• The family is paying the company for the full cost of the care provided.

The Network Rail School of Timetabling?

Another example of the needs of the people being cared for, their families, and the company’s carers, being bottom of the priorities list can be found in the carer schedules. These have consistently been unreliable, and at times, chaotic, over the years, and not through any fault of any of the carers.

The unexpected does happen, one must be reasonable, understanding and sympathetic when something genuinely unexpected occurs as do emergencies. But there have been issues which consistently cause problems which are avoidable. One example that springs to mind is that one of my Father’s carers, who is excellent, found she had to take her children to school because the person who normally took them had to have an operation and long term couldn’t resume escorting them. So, it was known that she could not start work until just after 9am. Yet, day after day, week after week, she was scheduled to start at 8.30am. The result was she was running rather late for the whole day, day after day. The clients, including my father, got irritated and exasperated, and she was stressed however hard she worked. She was set an impossible task from a scheduling point of view every day, which is the very essence of stress, unnecessary, and detrimental to the carer’s wellbeing and thus ability to provide high quality care. Important items on my to do list were being frequently interrupted by my irate Father – and the whole point of having carers in was to free up some of my time for my professional tasks.

There’s no excuse for that happening, it was a known issue, it wasn’t fair to either the carer or the clients. A properly run care system ought to be able to cater easily for times when carers are regularly not available (they are on zero hours contracts for flexibility, and flexibility cuts both ways). The system should be able to take account of specific client needs and requirements – dementia care is an obvious example, but there are others such as times, age of carer (some people are not comfortable with very young carers, who may not yet have the maturity and experience to deal with some situations), or gender of carer. The Care Company X’s system did not seem able to accommodate such issues.

A lot of the disruption seemed to be because new care packages were agreed when there were not enough carers to fulfil what was being taken on. This means the schedules must be rewritten, carers work longer hours on days off – which means they are getting more tired. The danger then is that they burn out and are not able to provide care. While it is true there are increasing burdens on the care system, one can’t help thinking that the cause of many of the difficulties is the pursuit of profit rather than prioritising the needs of those being cared for and their careers.

Carers need respect and support

It has been born in upon me how demanding a carers’ work is. They give a lot of themselves, the work is physically hard, emotionally hard, and for most of them caring is a vocation. Several them are single parents bringing up young children. I do not feel they get the respect and consideration they deserve from the care companies, and from other elements of the healthcare system, such as doctor’s surgeries and chemists. I went to the doctor’s surgery shortly after I had to stay here to support my Mother. The receptionist (who no longer works there) was very rude to me, thinking that I was a paid carer. When I pointed out I was the son of one of their patients her attitude changed – but this shouldn’t happen. Carers should be treated with respect for the demanding and professional job they do (I should add I personally find most of the team at the doctor’s surgery very caring and helpful in challenging conditions).

Inadequate or non-existent briefing

One of the reasons the carers’ jobs are more difficult than they need to be is that, certainly within Care Company X, they are not given enough information about individual clients and their needs. Annual reviews are carried out by social services, but this does not translate into documentation in the client’s home that the carers can read in order to understand how to provide care appropriate to that client’s needs. The paperwork in my experience has been rarely updated even after the review, let alone as care needs evolve.

Hands on family key to quality care

I dealt with this situation by having flip chart sheets on the walls to show daily tasks, and tasks specific to each day, e.g. Monday, Tuesday etc. That meant my Father got his care needs met regardless of who was attending – his regular carers (who in any case cannot be expected to retain the needs of every client in their head) or a carer who was less familiar with my Father’s needs.

So much of my parents’ care, I feel, was as good as it was because of my own efforts, not because the care system had my parents’ needs, and those of other vulnerable elderly people who require support, at the forefront.

A non-establishment dementia care programme that works

I found the support for looking after somebody with dementia completely inadequate. I signed up through social services for a course that was billed as helping carers learn more so they could support family members with dementia. The course was one afternoon on three successive weeks. I found it completely inadequate. It was amateur, the course leader read from the course book (we could have done that ourselves). There was another member of the team there, she said she was new. She said she was there to learn from us how to help people (silly me, I thought I was going to receive some support, not have to offer it to the people supposedly providing it), and it was hard to get a word in edgeways. I was so unimpressed after the second session I didn’t bother going to a third.

Instead, I did some research online. I found a book called “Contented Dementia”. This was written by bestselling psychologist author Oliver James (other books include “They f*** you up”, “Affluenza” and “Not in your genes”, but in effect he was ghost writing on behalf of his mother in law Penny Garner. Penny set up the Contented Dementia Trust as a result of her own experiences supporting her Mother who had dementia. Penny’s Father was a clinical psychologist, which makes her abilities and knowledge understandable, even if she is not a clinical psychologist herself. I signed up for a course, paid for it myself, met Penny and found she was a kindred spirit and a force for good. The course and book were a real help in supporting my Mum. Penny has a “there is a way to deal with this, we just have to find it” approach which I really relate to. I highly recommend The Contented Dementia Trust’s methodology.

Finding the course though underlines my experience of caring for my parents. They have good quality of care because I provide a lot of it myself, find solutions for myself and manage the externally provided care in a hands-on manner myself. I have had to step back from my own personal life, and reduce my professional commitments, to be able to do it. Most of the help that is supposedly on offer, especially the supposed support for family carers, is just a mirage, smoke and mirrors, of no meaningful use.

Care system: inappropriate culture

What we have in East Riding seems to be a care system designed to support the business community in exploiting the elderly and vulnerable for profit. The Council abdicates its social care responsibilities to the care companies (the Council could maintain teams of its own staff, properly trained, to meet care obligations but chooses not to). The care companies’ purpose is profit. That is their culture and objective. The senior management see themselves as business people who bring in a business culture. There is nothing wrong with successful businesses, they add much that is valuable to our communities, but their objectives and culture are not compatible with providing high quality care to the needy.

Also, and I feel this is an important point, we as families do not pay for the senior management to live out their fantasies that they are go getting business people, nor should that be what council taxes are spent on. The emphasis should be on providing high quality appropriate care to those in need, and their professional and family carers. When money is tight, and it is as a result of the Govt austerity programme, adding in layers of people with outwardly impressive job titles, and the requirement to make a profit, takes money away from investment in systems that are fit for purpose, equipment and training, as well as front line staff pay.

Terms of business (note the terminology, business, not care provision) and contracts dictate what the care company will and will not do (as it will want to limit risk, and harm to revenue streams). The Council says it is fulfilling care needs by contracting care companies. The care companies generate publicity which gives an idealised impression of how much they care about clients, which does not match the reality. The social workers, Council employees, must demonstrate to the Council they are doing their jobs to protect the salaries they need to support their lives and those of their families. The boxes are ticked, but the clients, their paid carers and family members fall through the gaps in the system. The care is not adequate. The support to paid carers and their working conditions are not adequate – which brings the real danger they will burn out. Family carers get practically no meaningful support, in fact we often get hostility from both the care providers and departments of the Council.

East Riding Council sharp practice

The Council itself has a policy of invoicing in advance of care being provided, rather than invoicing for the care actually provided. So, if for any reason you don’t get the care you’ve been invoiced for, you (as the person cared for or their hard-pressed family member) must then request that the Council takes that item off the invoice already issued. This is burdensome, and the Council does not seem able to do that easily. This practice to me seems deeply unethical, particularly as the vulnerable elderly are involved – are they capable of querying bills? Probably not, which means the Council and care companies get extra revenue. The communications you receive if you don’t pay on the dot are threatening. They could cause a great deal of stress to a vulnerable person.

To be fair, Care Company X do not invoice in advance for care. Presumably they don’t invoice the Council in advance either. So why does the Council invoice the citizens in advance of the service they receive?

East Riding Council also impose a £200 annual fee for arranging care, and it is the Council’s choice to do so. We have not seen any contract setting out the terms, and what will be received for this £200 fee. My Father’s morning care calls were organised through East Riding Social services. His evening calls, and calls to cover when I am out of town, I organised directly. I do question this £200.00 fee.

Stonewalled and ignored

Many in the care system are afraid to complain because they feel it will impact on the care provided. If you do complain, you are labelled a troublemaker, stonewalled and ignored – somebody might listen to you, but they will take no meaningful action to help.

I’ve found (and the example above of Care Company X’s current Managing Director is a prime example) that the care company prefers its clients to be those who do not have hands-on family members, because then it can behave as it likes, without any accountability – that is the most profitable approach for the care company, and profit is what it is all about, not caring for the vulnerable. The most vulnerable are the ones who get the worst treatment from the senior management of the care company and the local authority (but not the carers or social workers themselves). In effect they are bullied, although it is not said openly, the unstated message is “like it or lump it, complain and it will be the worse for you”.

Professionally I’m a researcher, editor and journalist with a specialism in information governance. I must deal with politicians and legislators among others (we advise and help draft some legislation in UK and EU). I normally live in London and have many close friends and my chosen family there. I’m used to putting across my point of view, I’m used to being listened to, I’m used the tricks and manoeuvres, but I’m also used to being treated with respect as a fellow professional. That is not the treatment I receive from the senior management of Care Company X.

I’m not going to be intimidated by people who are treating citizens with contempt and/or exploiting vulnerable people for their own gain. I hope a lot more people will stand up and refuse to be intimidated so we can achieve positive change for deserving people.

Personal pressures

In the last six years my other half’s Mum died, then my other half died five days later, this coincided with the decline in my parents’ health. In September 2015 I came to my parents for three days and have never been able to return to my own home for more than a few hours. I got a diagnosis for my Mum and I looked after her myself. I was with her holding her hand as the paramedics were trying to keep her alive. I had to take the decision to stop that effort. I was with her as she died, I organised the funeral on my own, I acted as her executor on my father’s behalf and I have continued to look after him and fit in as much of my professional and personal life around that.

In September this year as the anniversary of my other half’s death approached and the three-year mark of this ongoing unplanned care role passed, I began to take in what had happened (there had not been time before), and began to feel myself changing. It was quite a stressful time. I began to be surprised by some of the things I was feeling and while I could cope, there was a lot to process, and it needed some time and space.

Rather like when the mental health nurses needed to call, when I was experiencing a challenging time, I found the care company management added to the difficulties rather than being supportive. The care company’s senior management were again arrogant, self-important, self-satisfied and behaved towards me as if I am an irrelevant nuisance, as if they provided most of my Father’s care, and acted as if he and the house were the company’s property. In fact, as I have already said, it is me who provides most of the care and me who manages it – with the care company providing a comparatively small amount of help. I feel I am entitled to be treated with respect and consideration, not least because of the efforts I have made on behalf of my parents. Again, I felt that the management showed little concern for the wellbeing of its carers – who are in fact a credit to the company. They are the clients’ experience of the care companies, they are the brand.

While the carers have all been excellent, and the new Care Supervisor is also excellent, and we miss them, this time I had had enough and terminated the contract with Care Company X, with my Father’s agreement. The actions of the care company management had caused a good deal of bad feeling and were working against my wellbeing because of the problems their actions and behaviour were causing, which as anyone with any sense realises, will ultimately undermine my Father’s wellbeing. It is much easier to look after him myself and buy in extra help when I need to be away, managed by myself, outside the social care system. At least I have much greater certainty in my scheduling and thus commitments and time management.

During this time messages were circulating round social media from East Riding Council and others about mental health and men’s in particular. This is ironic given that the behaviour of the Council and its contractors is so often prejudicial to people’s mental wellbeing because of the extra stress it causes.

Hallmarks of a well led business

A good business earns its profits by meeting the needs of its clients. The clients of a care company should be the people being cared for. They are clearly not. A good business manager delivering a service on a commercial basis matches product to need and looks at things like product lifecycle management – innovating to ensure that the product evolves to match changing needs. Care Company X’s management I feel seems to be acting out a personal fantasy of people wanting to portray themselves as important business people. The reality is rather different.

Essential qualities in care absent

I’ve seen no evidence of empathy and emotional intelligence in either Care Company X’s senior management, or in the senior people at the council. They seem to be incapable of caring about anything other than their own interests, and those of their cliques.

“East Riding Council: where everybody matters” actions speak louder than words

We increasingly see the above strapline on communications, and even ribbons worn by ERYC staff. It would be great to believe that this was true, but actions speak louder than words, and ERYC’s and Care Company X’s actions provide powerful evidence that the statement is not true.

My Mother was my Father’s full-time carer when he was housebound. She had developing dementia which in retrospect had already been identified by Hospital As an issue, but this was ignored by the care system and my Father was left 24 hours a day seven days a week to be looked after by a wife with developing dementia. I was visiting once a fortnight, but I had raised issues with the care system and they had been ignored. It is not down to a family member to diagnose health conditions, we do not have the expertise. The healthcare system should do that. Were my Mother and Father one of the “everyone” who mattered? I don’t think so.

When I was trying to get a diagnosis for my Mother, did my Mother, my Father and myself matter to Care Company X, East Riding’s contracted care agent? I don’t think so. The then Care Supervisor said my Mother was “nothing to do with them”. They had a policy, and the company and its policies were what counted. The fact that my Father and I love my Mother was irrelevant. The fact that my Father fell in love with my Mother when they were both 21 and was experiencing his wife’s personality disintegrating before his eyes did not matter – Care Company X’s policies did. The fact that I had had to put my life on hold and was myself feeling stressed dealing with all this, when I did not have the expertise to know what to do, counted for nothing with Care Company X’s management – what mattered was them having their own way – their policies and best interests override being caring.

In the latest incident which collapsed the relationship between Care Company X’s management and myself, the senior management handled an issue so badly that one of the carers whom I hold in very high regard is now clearly very angry with me. The exact for reasons for this I cannot understand unless they are explained to me, they are a mystery in the context of me having praised the carer’s abilities. I asked Care Company X’s management to put right their mishandling of the issue, they didn’t want to know. Their packages, inanimate and intangible entities, are their top priority, not the people who are meant to be cared for, their clients, or the people caring for them. That is what was the last straw for me. This particular experience is a fine example of the management crushing goodwill using the jaws of control freakery, callous disregard for their staff and clients, and self-satisfaction.

On Care Company X’s website, they claim their aim is to ensure that people receive the best quality care possible. I suggest achieving that requires a senior management team who understand caring for people, who have empathy, emotional intelligence, and have other priorities than just making a profit. But then again, the senior management are doing their job – they are focussed on profitable business, it’s a numbers game, the business culture where people don’t count, it’s the bottom line that matters. But, long term, those types of business, tend not to fulfil their full potential and are hampered by the ill feeling that their “winning” generates – Donald Trump is a prominent example of this “tough” exploitative approach. In my view that is not the right culture to bring to the provision of care for the elderly and vulnerable.

But it is East Riding Council that sets this culture. The senior management of Care Company X evidently feel they have the green light for their behaviour, that they are so well in with key decision makers at east Riding Council that they are above criticism or challenge.

There is give and take, we must be tolerant and forgiving, but when a pattern emerges that I am not being treated in a way that it is reasonable in the circumstances to expect, then I take action. When trying to resolve issues results in being stonewalled and ignored, then if that is repeated and persistent it becomes very damaging to relationships. This is as true of provider-client relationships as it is of personal relationships. The final incident was the last in a series of bad experiences, having tried to make things work with the provider. Care Company X’s MD was shocked that I terminated the contract, and said he really hadn’t wanted that to happen. He seemed mystified when I said that I had told him that if they didn’t put right their mishandling of the issue I had raised with them, I would terminate the contract, so their refusal to do so, ignoring what I said, caused the contract’s ending. I think this shows a fundamental lack of understanding about how to nurture good relationships.

I can handle all this. I find it difficult, I find it stressful, but I can cope. I have choices. I was free to choose to end a contract that was causing me grief and make alterative arrangements that work much better. Many, many, other people in the care system are less able to cope and don’t have the choices I have had. They do not have a determined family member willing and able to bat for them. The lack of choice, the lack of respect and consideration they are shown by the Council and by the Care Companies’ management adds to their stresses, and is detrimental to their wellbeing. To add insult to injury, as often as not they are paying to be treated like this, and if not, the people of this area paying for their fellow citizens to be treated like this through tax, National Insurance and Council Tax.

What do we need to do?

In my view this is all very, very wrong. It is a culture set by East Riding Council’s majority party and the executive. That culture is itself shaped by the policies and attitudes of the Government. I have lost all faith in the care system and taken my father and I out of it (it is easier to provide care myself and buy in help as required – we are able to do that).

This absolutely must be challenged – in National and local government, and in care providers. Many many more of us need to be hands on, to question, to challenge, to insist on improvement – and we must not to be afraid of being labelled trouble makers. Portraying people who challenge as trouble makers is always a sign of an organisation with a self-serving arrogant and complacent management culture.

It is always best to listen, to explain, to negotiate, to try to resolve issues with goodwill and bring positive change. My personal view is that highlighting issues falls on stubbornly deaf ears, that it needs regime change, in National Government, local government, and this care company, to bring about the dramatic improvement in care provision that we need, and which our elderly deserve. Otherwise we cannot claim to be an advanced and civilised nation. Good quality care costs. We can afford it, we are the fifth or sixth richest country in the world, if we get our priorities right as a nation, and as a region.

When do we need to do it?

Now!

Graham Coult