Making it happen

 

The Health Foundation’s REAL Centre is a unique space for the careful and meticulous work required to birth new systems. This is work of the imagination – making a leap into the future, while drawing on the best of the past. And it is work of practical experimentation, drawing on the new ways of caring that are growing all around us. These new models are often fragile, struggling to survive within the apparatus of the old system: regulations, metrics and markets that are antithetical to caring. I can’t cover every aspect of the apparatus that needs to be reimagined and redesigned, but in closing I would like to talk about five aspects we could work on now. Each is largely a silence in current debates but a necessary foundation stone of any new system.

1. The imagineers

It is those with experience of caring and being cared for who have the ideas, the stories, the imagination to help us think again. This work is not about consultation or simply about ensuring a (critical) representation of lived experience. It is not about those with power deciding too late in the process to let others in. It is about shifting the frame, starting from the perspective of those who are knee high, or who at a particular moment in time need extra support, or who like Kelly have suffered from working in the current system and have ideas about alternatives. This is where we must start: with the invisible wiring of the system and the everyday stories that we shouldn’t try to flatten but rather hear on their own terms. This way of working takes time, something I will return to, but it is where we start.

2. The carers

I write with my computer propped up on two large volumes of the Oxford Dictionary printed in 1959. These dictionaries define ‘care’ as to tend, syn. worry, concern, pressure, tension. Interestingly, there is no entry for ‘carer’, a word that Bunting describes as, ‘A reductionist description of a relationship developed to suit the bureaucratic need, rather than lived experience.’

One in ten of us have some form of caring role and we want to see caring reimagined in ways that are at once bold and tender, extraordinary and every day. Millions of us want to have the possibility of caring when we want to: we will be the barefoot carers in ways which can only be enabled by rethinking work. But this will not be enough. Carers – although they might not be called that – must be to this technology revolution what engineers were to the last. The work of this century is work of repair: of ourselves and of our wider environments.

If we are to make a transition to the restorative green economy that will ensure humanity’s future and is longed for by many, then the work of care and of maintenance – of each other and the wider webs of life of which we are part – will be a core and respected activity. We have to design this role in such a way that thousands can embrace the work, not because they have to but because they want to: because it provides a good income and time for a good life, because it is honoured. This means moving from data that tell us about the costs of care to new forms of accounting that reveal the impact of the investment in care. It means creating paths from ‘dirty’ jobs to ‘clean’ care and it requires redefining the nature of the work.

3. The craft

Care is an art, a craft, a relationship. It is about entanglement in the lives of others and in emotions that are not always comfortable. Care is not an activity that can happen by the clock: the slots that undo Kelly, Abbie and so many more brilliant professionals I have worked alongside. Care belongs in the world of kairos time (measured by flow and connection) as opposed to chronos time (the industrial time measured by minutes and deadlines). Care is not the same as cure – yet it so often seems we have confused these categories. This is why our care systems ‘think’ in terms of an activity that is costed, rationed and meted out in response to a specific need or life moment, as opposed to an ongoing human activity.

10 years ago, I led a participative design experiment, which created a new form of community-based care for those aged 60 and older. Circle was a local membership club seeded in a number of different communities. Membership did not distinguish between those offering and those receiving support. Over 10,000 older people joined or took part. They were clear that all activities – from help in the home to social meet-ups – needed to be valued according to the quality of the relationship. We had to design a business model that valued the activity and the relationship forged, as opposed to a traditional model that would cost tasks based on the time taken. Evaluations of Circle showed how developmental metrics and new forms of accounting that take a wide range of values into account can work in practice.

4. The new institutions

As the proverb rightly goes, new wine cannot be made in old bottles, both bottles and wine are damaged. We need to reimagine the institutions that together constitute the 21st century infrastructure of care. This infrastructure includes the spaces in which we play, generous housing that can allow different generations to be together, park benches, public toilets – all these make it possible to connect and live together: they take care of us.

This infrastructure also includes professional support: expert child care, personal assistants for adults with disabilities, support when our families are in trouble, as older adults, and later in life. But what we imagine here is not a sibling system to the NHS, a national standardised set of institutions. It is about a web of support: many different actors and possibilities that share a core set of values but operate differently according to what is required. In almost every case we have the templates of these new forms of care from Shared Lives (a growing national home share scheme providing support to young adults and older people); to Buurtzorg (holistic, nurse-led community care); to Somerset Carers (a platform to enable micro providers to support individuals across Somerset); to the community Circles I started almost two decades ago. These new forms of care share an ethos that emphasises care as a relationship – giving autonomy to the carers and to those of us who need support at a particular moment.

Creating this infrastructure requires new leadership. In the United States, the Holding Co. is a lab dedicated to designing how we care for each other. In 2020 it published the first ever Care 100 list. The list is noteworthy because it honours influential people in care based on an understanding of the diversity of leaders (social investors, practitioners, activists, scholars) who are required to build a system.

And it requires new forms of policymaking. The state must provide a framework setting out a new goal that describes national flourishing and the role of care. We require a design code – the values and parameters that enable small, human-scale solutions to grow within a national framework. This is a policymaking process that is about a clear vision, human networks and relationships. It is the opposite of the existing industrial command and control policymaking process. The parameters will specify new forms of metric and regulation, within a culture in which our relationships to one another are what matter most. This in turn requires a new economic framework: a care economy.

5. Within a care economy

What about the money? One answer to this question is: we just don’t know. Our metrics are too limited. When we think about the care economy we sometimes include the expenditure of those who pay for their own care – but not always. We rarely include the contribution of unpaid carers. We are uncertain even about what ‘care’ is: strikingly, what people choose to spend their own money or personal budgets on – perhaps a taxi to see a friend or to get to the hairdresser – rarely tallies with formal categories of ‘care’.

We pay care workers derisory sums and do not factor in the cost of churn, recruitment, agencies, the misery of those who are cared for and the wider system costs dealing with burn out and the mental stress of our carers and their families. We accept an inequitable distortion of resources with funding skewed away from communities and individuals, towards inspection and regulation. With younger people and with old, we do not calculate the later costs of refusing to provide early the smaller, personal things – things those with personal budgets always choose – when needed. And lastly, we accept the scandalous leakage in untaxed profits made by for profit private care providers.

But the more important answer is that this question is too narrow. 21st century care must be capitalised within a new economic framework. We need to start to think about a care economy and this requires two shifts.

First, care needs to be categorised not as a cost but as a core investment: as essential infrastructure, just as understood by the vaccine scientists. In the US we see important moves towards this understanding. The work of the Holding Co. – who have drawn attention to the size of the care economy, which they value at $648bn ‘larger than the US pharmaceutical market and the US hotel, car manufacturing, and social networking industries combined’, has been pivotal in the argument accepted by President Biden that care is critical infrastructure, a core investment category rather than a cost. In the UK, we must recognise the centrality of care to local community and any concept of ‘levelling up’, while placing care and care work as central to a modern, green industrial strategy in the ways I have described.

The second shift is closely related. The care economy will need a particular set of rules to flourish. Foundational principles would include a broad definition of resource in which time, skills and money can be blended in new ways; a regulatory framework that does not distinguish between public and private providers but privileges worker ownership models and makes illegal the extraction of profits (surplus in this economy must be reinvested in the care economy); a culture that privileges learning over audit to ensure continuous experimentation and growth in our still nascent thinking about what could be.

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The COVID-19 pandemic has been a cataclysm, brutally exposing the crisis in the funding, culture and operation of our care systems. I have argued that we can honour this recent experience and the deeper legacies of injustice, by creating something new. There are many working examples of the forms of care and support I have outlined here. What we are missing and I am arguing for, is the new framework that would allow these models to grow and, in turn, allow us to thrive. This can only happen when we dare to imagine: when we recover what it really means to care, and when we rescue this most human activity from the industrial clutches of an outdated system, and together create the new.

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