The crisis of Care: Carers are not ‘hard to reach’, they are easy to ignore

Lessons learned about care and care homes from a working life in Leicester, England.

Throughout my working life there have been three unifying themes; gender, race and social class. Having now left the UK to live in Turkey, I am very interested in DiEM25 and am hopeful that Social Care will be an issue that DiEM25 will look at. I’d be particularly interested in talking about this to women in other countries and interested to find out if there are pan-European Care companies. I’ll explain why.

When the extent of Coronavirus was reported on in English hospitals, the TV scenes were chaotic and distressing. I immediately had visions of horrific scenes in care homes. The Care system in England was already broken, way before the virus arrived. If the Health service was already in crisis, the situation in Care would be catastrophic.

Years of underfunding the health service, and the removal of locally accountable Strategic Health Authorities replaced by undemocratic Clinical Commissioning Groups, has led to less qualified staff, lower pay, and longer working hours and waiting lists for appointments. 

For the recipients of, and those who worked, in Social Care, the consequences of a fragmented and 85 percent privatisatised service have been dehumanising. Once run mostly by Local Authorities, the Care sector is in all but name unregulated.

The Home Care Agency.

Working for a national Home Care agency was an absolute eye-opener. We were  paid extremely low wages. We didn’t get paid travel time so that the actual wage you ended up with was miniscule. 

The role was isolating. Staff were not adequately trained and in particular, there was a lack of mental health training or support to ensure a resident’s quality of life. Carers provided empathy and humanity in the health sector, but were unpaid for this labor and had to do so in their own precious time.

Carers didn’t have time to sit and talk to people — to listen, to let people talk. Carers were there to clean, to feed, to prompt medication. The writing up of notes was to be completed during the home visit. Paperwork was often missing, inaccurate or illegible — it was chaotic. 

Early on, I was sent to care for a woman who had dementia and spoke Bengali. There were two carers standing over the woman, shouting at her and pointing in her face.  I was a very new carer who had had middle class jobs up till that point: these two carers had been doing these jobs for years. I felt very conflicted, but I had to say something. I gently intervened and said, “You don’t shout at people with dementia, it will be very frightening for this woman if you are standing over her and she is sitting and you are pointing in her face.” I went back to the managers and said, “I really don’t want anybody to get into trouble — this is not what this is about — but when I did this visit I was aware that the carers really didn’t know how to support people with dementia.” The managers were very nice — everybody was really nice — but the managers said “Oh no — we’ve not had our dementia training either!” So that was my introduction to care in Leicester.

I joined the Labour Party when Jeremy Corbyn became leader in 2015, and I became quite active locally. I remember sitting in a meeting in the town hall with the elected mayor, Peter Soulsby, and nine or ten others. We were talking about a campaign he  wanted to do locally to promote the Labour Party. 

We were discussing possible issues, and I said that, given that Leicester and the East Midlands generally had a very low wage economy, and a very large proportion of BME women working in social care, I thought that it would be a really good way to connect with people when we went canvassing and door knocking. We would be able to raise these issues and get people talking, listen to people’s concerns and in particular to get women involved. 

His response was incredulous. He said: “Oh, we don’t have an issue with social care in Leicester…” My jaw dropped and he must have noticed because he said, very nicely, “No, no, I’m serious. It is very rare that we get social care issues raised with us” His response was so telling, given that the service was on its knees.

Care is off the radar.

Care is largely a women’s issue, a working class women’s issue and massively a migrant and Black and Minority Ethnic (BME) women’s  issue. Just as Peter Soulsby didn’t think Care was an issue, the establishment, most of the media and the public don’t think it is an issue now, because it’s not on their radar. 

Then, as now, a major problem was that there were not nearly enough carers. Here in Turkey the vast bulk of care homes are owned by the state, whereas in Britain, 85% of care homes are private. I remember that years ago Leicester City Council had a very well-run home care system. It was all run by the local authority, so the carers were all on proper terms and conditions. OK, they were still paid low wages. There were still problems. But there was an infrastructure; there was training and support. Private Care homes are first and foremost businesses. There is therefore a lack of durable and connected infrastructure for Care.

There were therefore significant problems, such as the wrong medication or dose being given, or incorrect timing or the omission of doses. If carers had poor literacy, there was no support. If a carer had fifteen minutes or thirty minutes to make a home visit and they had to take the notes and update them, as well as check the medication that is being administered – it was a big mess. There was never enough time, it’s endemic — as Ken Loach portrays so vividly in Sorry We Missed You.  

During my six months working for the Home Care agency, it was clear that the Black and Minority Ethnic (BME) carers tended to be given more complex and time-consuming cases — the residents with multiple problems, acute physical and chronic illnesses as well as dementia. There was a general lack of support for BME carers. A lot of the managers were white, and you know how it is, just like in male hierarchies, promotions were given on the basis of who you knew and got on with. You could see how black and asian women in Leicester were losing out and given worse jobs. 

In my second involvement with the Care sector, I trained managers of both private care agencies and care homes, as the County local authority was concerned about a lack of consistency of care. Carers frequently resigned from home care agencies and care homes but moved on to other care homes and homecare agencies in the area. My role was to help managers develop good employment practices: to train them in staff recruitment, retention, equality and diversity. As I told them, it was essential that they included carers in developing the Care policies.

Racist abuse of migrant and BME carers occurred often, and most managers were not trained or skilled enough to address this unlawful abuse. Frequently, managers told of the difficulties they faced with the owners of Care homes and agencies. Managers needed more staff, more equipment, and even more food for residents. A culture of fear pervaded the Care sector from the top down.

Carers are told to read and adhere to a whole pile of Care policies. They are told they will be liable, even legally liable for some breaches of policy, especially Safeguarding policy. There is no paid time to discuss them, and misinterpretation is easy. There are high levels of disciplinary actions and terminations and very few carers are represented by a trades union representative. As well as having your employment contract terminated, carers can be barred from working as a carer again — if for instance they are found to have breached Safeguarding policy.

Deprivation of Liberty.

Some people are living in a Care Home because they lack the mental capacity to safely live in the community. They may be subject to an Order known as a Deprivation of Liberty Safeguard (DoLS). Ass a personal representative independent of Social Services and the Care Home my third role involved in the Care sector was to check that a person subject to the DoLS was neither objecting to the deprivation of their liberty, nor that the deprivation of their liberty was too restrictive. Many people with dementia in Care Homes are subject to a DoLS.

During regular visits, I spent time in many Care Homes — speaking, listening to, interacting with, and observing residents and staff. I read Care Plans put in place by social workers and checked that any concerns and conditions were raised and addressed.

With a very few exceptions where excellent care was provided, the Home Managers and carers were struggling with an acute deficit of staff and resources. Carers were fearful of raising their concerns openly. If they felt the social worker was not dealing with the issues, there was a threat hanging over the Home that the resident might be removed and ‘placed’ elsewhere, with the loss of around £1500 a week income. 

In most homes, and again with a few exceptions, it was almost impossible to get the General Practitioner (GP) to visit a resident. There was also an acute lack of nurses in the Nursing Care Homes. Frequently, the one nurse in a large Care Home I visited was too busy to speak to me, and after waiting and having a few minutes of their precious time, nurses often apologized and told me they couldn’t help with my query as they were from an Agency and didn’t know the resident. I would be directed to the busy manager who wouldn’t be able to help either and would refer me back to the nurse.

This is my testimony on Rosa’s case, which is one example of how broken the Care system is:

I visited a lovely care home, with kind carers, cleaners, cooks and managers. I read all the relevant paperwork at the home and discussed Rosa, who I would be visiting fortnightly, with the senior carer/deputy manager. I was informed that Rosa lacked the mental capacity to care safely for herself in the community and was subject to a DoLS. She was losing weight, would not come out of her room and was increasingly aggressive. She would spit, scratch, hit and throw things at staff, telling them to get out of her room. When left alone she would scream and cry at night as well as during the day.

English was not her first language. I advised the deputy manager on how to support the resident with her mental health and weight loss. I asked what Rosa liked: flowers; colours; photos; music; films; pictures on the walls? The deputy manager didn’t know (Rosa had already lived at the Care Home for around a year at the time of my first visit).  

I pointed out she may well regress at times to the concentration camp she had been in, and would need very gentle care. The deputy manager did not know that Rosa had been in a concentration camp, and indeed she said she had heard of one but didn’t actually know what a concentration camp was. She was a lovely, 23 year old deputy manager of a care home. I described what Rosa may well have witnessed, heard and experienced in the concentration camp. The deputy manager was shocked and was keen to help Rosa and a plan was put in place, whereby the deputy manager would oversee a lot of Rosa’s care during the day. We tried to get extra language support for Rosa but none was available.

For about 2 months the plan seemed to be helping. Rosa gained weight, the home carried out regular weight checks. Rosa stopped hitting and carers were by and large able to undertake her physical care. Some carers noticed that she would talk to them more. She was, however, still crying at night sometimes.

We had asked the doctor to provide anti depressants, but these were not given consistently. Paperwork was missing which made tracking progress difficult. After around 3 months of visits I noticed a decline. The deputy manager had been taken off the “floor” to do all the paperwork (which now needed to be logged onto a computer) in readiness for a CQC inspection. It became increasingly difficult for me to read up to date notes as the only computer was in the manager’s office and she was always busy on it.

There were not nearly enough care staff and the deputy manager told me carers were leaving without giving notice because they were so stressed. I told the home I would have to proceed with an application to the Court of Protection as Rosa’s DoLS was too restrictive. I said I didn’t think moving Rosa from the home would benefit her, but the only way we could get the Local Authority to act and provide the extra hours of appropriate social inclusion care, was if the court ordered it. I knew it would take months before the case reached the Court of Protection. 

Rosa died before her case got to court.”

Carers are not ‘hard to reach’, they are easy to ignore.

Companies make massive profits out of the exploited labour of carers. But until carers are supported and funded to unite across regions and borders, they will continue to die from Coronavirus and continue to be exploited. Residents will continue receiving a poor and in many cases inhumane service.

DiEM25 will need to include care workers if they are to make a difference. I hope discussions can start and a thematic group can develop. I hope to be part of those discussions and that group.

To maintain the anonymity of carers and their testimonies,  the names in this account have been altered.

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