ON 5 FEBRUARY 2020, just before the Coronavirus crisis enveloped Scotland, the Independent Care Review (ICR) published a revolutionary suite of reports into Scotland’s care system for children. The reports were built on the views of children and adults with experience of the care system, their families and of the people that care for them. The recommendations that flow from those views will require the care system for children to be completely redesigned, from the bottom up. In the last four months the first minister and many organisations have pledged to do this through “the promise”.
The Covid-19 disaster in our care homes has prompted the Scottish Government to open the door to a review of the care system for older people. It should be based on similar principles, from the bottom up.
In October 2016, following many failed attempts to reform the care system for children, the First Minister made a commitment that Scotland would “come together” and give vulnerable children “the childhood they deserve”. Last week, statistics from the National Records of Scotland showed that 1,818 of the 3,911 Coronavirus deaths in Scotland – over half – had been in care homes. Scotland equally needs a system of care that gives old people the end of life they deserve.
2017 saw the start of the ‘Independent Root and Branch Review of Care driven by those with experience of care’. By the time the ICR’s final reports were published in February, it had heard from 5,500 people. Half of these were children or adults who had had experience of the care system and their families. The other contributions came from people working in the care system.
While there are 15,000 children in the care system (residential is only part of it) at any one time, there are about 32,000 older people living in care homes. A similar review process for older people focussed on care homes might be anticipated, crudely, to be built on the view of c11,000 people. A wider process would involve far more. The last review of long-term residential care for older people in Scotland, published by the Scottish Government in 2014, involved a taskforce of 22 professionals. It, like the previous reviews of the childcare system, tinkered at the edges and lies largely forgotten.
The ICR recommended five foundations for a new care system for children. While the life stages, population profile and legal status of older people needing “care” are very different to children, the five foundations identified in the “Promise” as necessary for good care are likely to be similar. Indeed their absence helps explain the scale of the Covid-19 disaster in our care homes.
Voice – or putting people at the centre of decisions that affect them
“Children [older people] must be listened to and meaningfully and appropriately involved in decision-making about their care, with all those involved properly listening and responding to what they want and need. There must be a compassionate and caring decision-making culture focussed on children [older people] and those they trust” [This and all succeeding quotes are from the ICR].
We now know 1400 or so older people, “delayed discharges” were moved to Care Homes to empty hospital beds as Covid-19 spread. What choice these older people were given is not clear but it appears no one asked existing residents what they thought about potentially infected people being brought into their homes. If older people (and their families) were not so disempowered, the Scottish Government would have never got away with moving people without elementary precautions. Conversely, if older people, their families and the workforce had more power, the Scottish Government might have avoided a mistake that has probably cost hundreds of lives.
Dementia is, of course, a challenge when it comes to involving older people in decisions about themselves. Official statistics suggest c60 per cent of older people in care homes have the disease and that is probably an underestimate. But voice is just as much an issue for older people in full possession of their mental faculties I recall attending a conference in Edinburgh where an older person spoke about his experience of the care system. He had been discharged from hospital to a care home while too weak physically to go home. It had taken him, determined and able to stand up and speak to a room full of people, over a year to get out.
Given the will and the time, it is just as possible to hear the voice of people with dementia as it is for children in care:
“Active listening and engagement must be fundamental to the way Scotland makes decisions and supports children and families [older people]. There is no simple formula or standardised approach that will suit all.
At the end of last week the Alzheimer’s Society (UK) revealed the results of a survey of 128 care homes in England. This found that 80 per cent of the homes reported a deterioration in the health of their residents with dementia due to lack of social contact during the crisis. Symptoms included depression, loss of appetite and weight loss. There are parallels here with some of symptoms traumatised young people display when they are unable to communicate how they feel.
Older people in care homes, whether experiencing dementia or not, appear to have had little or no say about being confined to their rooms and about visits from their families being stopped. They have had no voice during this crisis and precious few people advocating for them. That helps explain the latest statistics for England and Wales – the position in Scotland is similar – which show excess deaths in care homes, i.e. those not due to Covid-19, are 49 per cent higher than normal.
The role of family to children and older people are rather different, but the Covid-19 disaster has brought the importance of family for older people in care homes to the fore.
On the one hand there are families who, as Covid-19 spread, took over care of older people in the community as services collapsed preventing admission. Being furloughed, losing a job or working from home transformed the ability of some families to care for their relatives and in some cases probably saved their lives. For the last thirty years, the policy aspiration has been to keep more older people living in the community, but still far too many end up in care homes against their will. The reasons for this are complex but include lack of suitable housing, the amount spent on services in the community but also the lack of support for families. In normal times, carer’s allowances does not compensate for loss of earnings. How many families would want to continue providing such care, given the right support, is a question that needs to be asked.
On the other hand, are the families who have been denied access to their relatives in care homes, even while they were dying. The risks of not having or breaking “stable, long term loving relationships” applies to older people as much as it does for children. It affects relatives, as much of older people, and it is likely that many will now be traumatised by the separation or from being unable to be with loved ones as they died.
The termination of visiting also removed the most important advocates and companions for older people, their relatives, from the scene. This helped enable untested older people to be discharged from hospital in March and April without protest.
Poverty, an issue central to the ICR, also affects many older people in care homes but in different ways. Increasingly, we are seeing the development of two systems, one publicly funded, the other self-funded. The latter, in return for significantly higher fees, provides older people with a little more human contact and quality of life in the form of staff time.
Care – what should it be about?
The ICR put rights at the centre of the care system:
“If Scotland removes children from their families [places older people in Care Homes], their rights must be upheld as a basic minimum standard for their care. That must mean a clear commitment to creating the right culture of care where the whole of the workforce respects, upholds, champions and defends the rights of children [older people] for whom they are responsible.”
A lack of respect for rights is likely to be central to understanding the extent of the Covid-19 disaster in our care homes.
Other recommendations about the care system in the ICR report also have obvious relevance to older people.
“Scotland must avoid the monetisation of the care of children and prevent the marketisation of care.”
The ICR places relationships and nurture at the heart of care for children. While relationships are also critically important for older people, other physical and mental needs are different. Health care, which has been stripped out of our care homes, is generally far more important. What the ICR shows, however, is how a bottom up review would enable the care system to be redesigned about what is really important for older people.
People – the providers of care
Besides family, the most important stakeholder in the provision of care to older people in care homes is the workforce.
“The workforce needs support, time and care to develop and maintain relationships”.
The longstanding problems besetting staff working in care homes for older people are well documented. The workforce is underpaid, poorly trained and understaffed – a consequence of our marketised care home system. Despite these challenges, many perform miracles.
The workforce, mainly women, also has little or no say in the day to day operation of the system or the management of crises like the Covid-19 disaster. They are treated as expendable. The trade unions are, outside of the local authority and voluntary sector, very weak.
“Supporting the workforce to care must be at the heart of Scotland’s service planning”.
A bottom up review of the care home system would enable the workforce to help re-design a system that depends on them.
“Children [older people], families and the workforce must be supported by a system that is there when it is needed. The scaffolding of help, support and accountability must be ready and responsive when it is required.”
The Covid-19 crisis has revealed critical weaknesses in the scaffolding. There has been very little support for older people, their families and the workforce in care homes when they have most needed it over the last three months.
Regulation was invisible until the end of April, far too late:
“There must be a complete overhaul of regulation and scrutiny that centres on listening to children [older people] about how they are cared for, their ability to flourish and thrive and that measures the things that matter to them.”
And this is equally relevant to the care of older people:
The current ‘care system’ does not operate as a system. At its worst, it can perpetuate and worsen the trauma that many children [older people] have already experienced.
There are many examples, including the disjunct between the NHS and care homes and the different contractual and fee arrangements for self-funding and publicly funded residents. Like children, at its worst, the care system can create trauma, as is likely to become clear as the full extent of the Covid-19 disaster becomes known. Our current scaffolding is not fit for purpose.
The Scottish Government deserves to be criticised for their unpreparedness and subsequent mis-management of the Covid-19 crisis in care homes. But Nicola Sturgeon did the right thing four years ago when she set up the Independent Care Review for children and did the right thing when she promised to implement its recommendations.
The Scottish Government should do the same for older people, building on the experience of the Independent Review, and with equal determination. Instead of the current vague assurances, the Scottish Government must commit now to a bottom-up root and branch review of care homes in Scotland aimed at providing older people with the care they deserve.