Do we care enough? Episode 5 of the Health Foundation podcast

Jennifer Dixon: We all need care at some point in our lives, when we're young, when we're ill, and when we grow older. Caring calls for many of the qualities at the very core of what it is to be human, empathy, compassion, selflessness, and commitment. We're in a pandemic and we've been clapping for carers. Yet care is so often undervalued, skimped on, commoditised, or ignored. The need for care is growing fast, and many feel that we now have a ‘crisis in care’. Why is that? What can be done about it?

Here to discuss this today, I'm thrilled to welcome Madeleine Bunting, who is a prize-winning author, a broadcaster, and as many of you will know, a journalist, formerly of The Guardian. Last year, she authored a really thoughtful book on the subject of care called Labours of love: The crisis of care.

Anne Marie Rafferty: Every part of the care labour force is desperately underpaid, chronically underpaid, because of this fundamental cultural distortion in which we don't recognise a form of emotional labour that can be enormously demanding.

Jennifer Dixon: Anne Marie Rafferty is Professor of Nursing Policy at King's College London. Currently, she's President of the Royal College of Nursing. Anne Marie has written widely about a common theme has been care and its meaning, as well as the role of nursing in health care.

Anne Marie Rafferty: We have got to invest in the care sector as never before. I think we need a massive fiscal stimulus to actually do that, an accelerator putting it on steroids.

Jennifer Dixon: I thought I'd just kick off with a question for you, Madeleine. Your book was written just before the pandemic hit. Has the pandemic changed your view that there is a crisis in care?

Madeleine Bunting: Well, definitely. I think that what happened in March, and my book was just going to the printers, and we hold the presses, sort of thing so that I could write an author's note at the beginning, because never in my wildest imaginings did I think that the nation would stand on its doorstep to clap for carers. In those first tumultuous few weeks of the pandemic, there was the most astonishing inversion of our understanding of value, of labour, of work, whose work really matters.

It was a paradigm shift. Now, I'm not saying that it's going to lead to dramatic political change because I think those two are not necessarily tied together. There can be a disconnect there. What I think, everybody was suddenly brought really up short against was that there was very little they could do about this pandemic. The people who were doing everything they possibly could, the nurses and the doctors in the desperately overworked hospitals, our lives are in their hands.

Our gratitude, there's been many comments made in the month since about that clapping for our carers, but in our street, you could hear the fireworks, and the drums, and the trumpets. I remember watching a pedestrian walking down on our street as we were clapping, and their jaw was just dropping as they filmed it. Now, I think that has a massive impact, and I would hope that we can find the political will to actually follow through on that.

Jennifer Dixon: Anne Marie, do you think that that clapping will change our attitudes to care? Do you think that it was a temporary thing and people will forget and everything will snap back to how it was?

Anne Marie Rafferty: It would be wonderful to think about the clap for carers as having that continuity, but I get the impression that that initial outpouring of emotion, and I certainly felt it myself, was something which has not really been consistently retained. I feel that the energy is eking out of the system and it's certainly not at the pitch that it was. The snapback that you referred to, Jennifer, we can think about the pandemic and being compared to a war zone.

The factors that there were many aspects of war-time policies that did snap back and certainly after the first World War, women's participation in the labour force, things did return to a kind of pre-war norm. I think the challenge here is how to build a sustained form of political pressure to ensure that the snapback simply doesn't happen.

Jennifer Dixon: I suppose there is a question, isn't there, about whether people were clapping for care or whether they were clapping for something else, the security, but I just wanted to move on to what we really mean by ‘care.’ It's a small word, but it has multiple meanings, doesn't it?

Madeleine Bunting: Yes, absolutely. It's a bit of a treasure trove, really. It's a short word and yet actually, when you begin to unpack it, both its etymology, its history, but also the ways in which we use it, it's multifaceted. Just to dip back briefly into that previous conversation about what was the significance of standing on our doorsteps and clapping was. I would say that the key standout from that was the point of solidarity. I think solidarity is actually essential both to motivate care and actually to inspire the practice of care.

That sense of common shared humanity, which as you said in your introduction, Jennifer, we all share one characteristic very, very clearly, which is the fact of our vulnerability at different points in the life course when we need and utterly depend on the care of others. It's a circular thing and that's the funny thing about care. We are both receivers and we are givers and that circularity whereby we learn to care by being cared for. That continues throughout our lives that we experienced care and in turn, we then offer it on.

I spent five years asking a very simple question of dozens and dozens of people, including Anne Marie, who was a terrific interviewee. I said, ‘What do we mean by care? What is it? What is it when you do it?’ At the end of five years, I felt there were three words that really run through it a bit like lettering through rock because there's a hundred different ways to care, but I think there's three consistent characteristics and that is presence, attention, and touch. That's my starting point, Jennifer.

Jennifer Dixon: Thank you. Maybe, Anne Marie, could you take that further and just give us a view about particularly nursing and those three characteristics, presence, attention, and touch, because obviously nursing is a job, but also it requires a certain sort of solidarity of the type that Madeleine mentions.

Anne Marie Rafferty: I think for nursing, it's also not just a question of some of those characteristics to do with presence and attention. It's a science, there's a science underpinning how that all happens. I guess the empire of what makes it, of empathy in which care is embedded itself does help us to stretch our faculties into the space where care actually happens. Nurses, of course, have been seen to embody those kinds of virtues. As historians, we've noted the virtue script within which nursing has been birthed and born. Then I think try to reject and repudiate it, because I think we don't just want to be seen as sentimental creatures, empty vessels into which emotion is poured in the caring process.

Jennifer Dixon: I think that brings me nicely onto what you began to touch on, Anne Marie, which is about our attitude to caring and how we have viewed care over time. Madeleine, in your book, you spent quite a lot of time on this. I wondered if you could just outline this, how you think our attitude has changed.

Anne Marie Rafferty: I'm not sure our attitude has changed actually, Jennifer. I think the question you're asking is, what is the history of care?

Jennifer Dixon: Yes.

Anne Marie Rafferty: Perhaps, I'll tackle it that way round because actually, one of the arguments in my book is the persistence of various forms of mythology, which are now really problematic. To just loop back a moment, what I'm going to try and do is put care into a historical context. That means really looking at the way in which from the 18th century onwards, the great traditions of Western thought and philosophy and economics completely ignored the labour of care and these essential processes by which human life is sustained.

The care within a household, which ensures the reproduction of children, the caring of the elderly, and those great 18th-century economists and philosophers such as Adam Smith. There's a wonderfully witty book title by a Swedish journalist called Who Cooked Adam Smith's Dinner? Because, of course, we never get to know. He's pouring over his manuscripts in his study, but actually, the only reason why he was able to do that was because his mother was cooking him supper every night.

That illustrates the invisibility of care. It's been taken for granted. Along with that came the idea that care was just women's work. It was feminised and therefore dismissed. It was a not-of-significance. What was significant was men's role in the public sphere. We then get the incredible trap that nursing has been in, that nurses are saints and angels, and they do it out of the goodness of their heart. They don't really need to be paid properly because they're doing it because they're so virtuous.

It was part of the genius of Florence Nightingale to devise a way of educated, independent women, having an independent working life outside the home. An astonishing, revolutionary thing she managed to do, but she did it by trapping women in this virtue script as Anne Marie describes. They could never assert themselves. They could never challenge the doctors. They could never certainly ask for appreciation or a pay rise. Every part of the care labour force is desperately underpaid, chronically underpaid.

There are parts that are worse than nursing. Childcare sector is appalling because of this fundamental cultural distortion in which we don't recognise what I would describe really, in part, as a form of emotional labour that can be enormously demanding.

Jennifer Dixon: Yes, to pursue that. Anne Marie, in your biog you say that your mother was a nurse and you were strongly influenced by her career. Thinking about how she viewed care, how would you think that has influenced you and changed today?

Anne Marie Rafferty: When my mum did nursing, the career choice was going to nursing for her anyway, coming from a very small mining village in Fife with very few prospects because she had to leave school at 13 and in fact, it was really go and work in a factory or a shop or nursing. That's where it was pegged in terms of the status. She chose nursing because she would get some top-up education. I think we perhaps are in danger of over sentimentalising motivation.

Sometimes it's very pragmatic in terms of why people make these choices. The emphasis that Madeline draws out on labour process, and the fiendish hard work that goes into caring, I think nowhere is that more evident than in those early days. My mom trained in the 30s, did seven years of training, fevers, general, and midwifery. There were scrubbing, you were doing a lot of domestic work, but you were doing the work of probably two or three people. It was a really, really tough physical and the psychological regime itself was pretty tough going.

I think the environment of care was one of regimen and of routine and of complying with rules and punishments and sanctions, even sitting and talking to patients was considered a negative that took you away from the work. It was a hard, emotional environment.

Jennifer Dixon: Madeleine, I wondered if you could talk a little bit about that where some of the biggest challenges are for care, particularly on time, the demand for care, the supply for care, the shortages, and so on.

Madeleine Bunting: Well, there is so much to say about this. One of the things I would say is about ratios, which has, of course, being the subject of some of Anne Marie's research, how much time a nurse has on a ward is about how many staff there are. How much time a nursery worker has for each individual child is about ratios. How many kids is she responsible for? The social care worker or the domiciliary care worker who's rushing in 15-minute appointments, which is a scandal into someone elderly at home to help feed and wash and dress.

That appalling measure of time, which has caused great outrage. Everybody knows it's shocking, but in the end, that is about how much we're prepared to pay for care. It's all about budgeting. It's back to this question about as a relatively rich society, how much do we value care, and are we prepared to pay for it? That's to loop back briefly to the starting point of our conversation around the impact of the pandemic, which is that we're going to emerge from this pandemic with a shattered economy, really desperately, desperately high levels of debt.

We will feel that deterioration in the country's economy very clearly in the years that lie ahead, and the battle for resources and state resources is going to be really fierce. The paradox about the pandemic is it's made us aware of care and the value of care, but actually is going to leave us with fewer resources than for several generations to really invest in the kinds of care that we're going to need. That's why I find this particular historical moment, one of the many reasons why I find it so incredibly painful is that as an aging population, the demand and need for care is increasing significantly long before the pandemic hit.

We all know the figures, we all know this, but the point is we seem to be peculiarly incapable at a collective level to meet that challenge about what does it - the Lancet project projects a doubling in the over 85s requiring 24-hour care by 2035. That's 14 years away. That's not even that far away.

Jennifer Dixon: If policymakers have 10 years when it comes to the value of care, how do we demonstrate better the arguments for better care and not cutting back? Anne Marie, I know you've spent quite a lot of time thinking about the nursing shortage and the impact. Is there some more work we could do there to demonstrate? Often it's quantitative, isn't it, facts and figures rather than moral arguments of the value of care that somehow holds sway in these discussions?

Anne Marie Rafferty: Well, I have a challenge actually, Jennifer, that proposition that policymakers have a 10 year, I think we are reaching politicians in a way in which perhaps we've not really been able to before. You're right about the qualitative angle on this storytelling is the most powerful tool that we have. We've been convening meetings in my RCN role up and down the regions with MPs, politicians, and decision-makers. They literally are all ears and so moved by the stories that nurses are telling them about what it's like actually nursing patients, not just on wards, but in communities.

It could be toxically optimistic, but I do think the tide might be turning a bit, but if I can also return, Jennifer, to the point about the economy and what do we do when we are debt-ridden and we have a shattered economy, then what about a Keynesian care economy? What about actually using our health needs for growth in jobs, growth in the economy through jobs? The RCN's just done a piece of work on the pay deal; we're asking for 12.5%. That seems like a big jump, but actually not in the context of having lost something similar to that over the last 10 years, through various austerity measures.

When you actually look at what pay rises do in terms of reinvestment back into the economy, creating jobs, consumer spending, and local economies, it comes out at a fraction of 12.5%. Part of my perhaps Pollyanna solution to moving forward post-pandemic is a Keynesian care economy, we have got to invest in the care sector as never before. I think we need a massive fiscal stimulus to actually do that and find ways of growing the care sector. It's already been marked as one of the big growth areas, but giving it an accelerator, putting it on steroids.

Jennifer Dixon: Yes, that is certainly discussed as a possible solution. In fact, everyone, every country in the world needs more carers as it seems. The other great hope seems to be technology and I noticed, Madeline, in your book, you are worried about technology playing too big a role in the area of care. In fact, you said in another sentence, ‘Bureaucracy, marketisation, and technology is a toxic combination.’ Do you think technology really does have a bigger place or do you think, actually what Anne Marie is saying that actually, we really must take a more Keynesian approach to employing more carriers is the way forward?

Anne Marie Rafferty: Implied in your question there, Jennifer, is an either/or. It's kind of either more people to be employed or it's technology, and I think that's a kind of false dichotomy. I think there are contexts in which forms of robotic care, and I'm not talking about some sort of anthropomorphic kind of robot Dalek looking after you. I definitely can imagine that it may be that when I reach frailty in my 80s, that to have various aids in the house that help me make a cup of tea might be quite handy. The way in which designers are thinking about how to create environments which assist in that way can be very, very interesting and exciting.

I am not 100% against all forms of technology, that would be absolutely daft. I'm very, very grateful for all kinds of medical technological breakthroughs that have been absolutely spectacular in terms of medical achievements. I think it's really dangerous to get really to not recognise the both aspects of this. One of the problems about some planners and policymaking in health care, and Lord Darzi is a classic example of this, is to get so swept away by the technology and think that this is the perfect answer to everything.

Equally, it's crazy to say it's a disaster. You quoted a phrase that I used, and the phrase is quite specific. I'm saying the combination of bureaucratisation and technology and commercialisation is a toxic brew. It's when you put them all three together. Independently, of course, you need some bureaucracy in a health service. Of course, you need technology and the maybe points where you need some commercial activity. I'm not ruling out all of that. It's when they come together without a proper understanding of the role of relationship in all healing and all processes of the body and health, that there is a dimension of relationship and that cannot be fully replaced by any form of technology.

When people say actually, there's forms of AI that can diagnose faster and more accurately than a doctor, well, that's possible to which my reply is that, okay, so the doctor may be able to draw on those diagnostic programs to help her or him, but the diagnostic programs can't do all the other parts of a doctor's job, which is so much to do with observation and understanding where the patient is at in terms of their acceptance and knowledge of a complex program of medication, et cetera, et cetera.

To go back to Anne Marie's point, I'm a hundred percent with Anne Marie. I don't even think we should call this Pollyanna. Economists have looked at a Keynesian type approach to the care economy, and they have concluded. They did a really interesting study in 2015, but if you need to stimulate an economy like after a crisis, the conventional model is through infrastructure, build lots of roads, build lots of bridges, get money into the economy. In fact, if you decide, let's get the money into the economy through the pay packets of carers, of hundreds of thousands of the largely female workforce, you are going to distribute the benefits of that much more evenly in terms of geography and regions.

You're going to get it right into the heart of families, where we know that the effects of poverty on children are so disastrous. In fact, what Anne Marie is suggesting in terms of a major, major investment in the care economy could be the best way out of this pandemic, because we know that the impact on children has been devastating. It's going to be urgent that we address their plight in the years ahead. The care economy ends up hitting all sorts of targets dead-on. I'm a very enthusiastic supporter of exactly that and being able to argue for it in a way that is this is not about some wishy-washy wouldn't it be nice. Actually, this makes really clear economic sense.

Jennifer Dixon: We know that social care has been such a threadbare service. This has been in plain sight for so long and yet still, successive governments as we well know have ducked it. How on earth can this be amplified enough to get them over the line in something so basic as social care, let alone early years care or anything else? What is really going to make the difference this time?

Anne Marie Rafferty: Health and care and whether we combine them somehow, we used to have a department of health and social services, and bringing everything together, separating it, these schisms are political conveniences at some point. Getting back to Madeleine's point around what are we actually prepared as a society to pay for care is probably the bottom line, and at what level are we prepared to do that through general taxation and other sources of finance, some of it private, maybe through pensions, I don't know, but I think there's got to be an honest and grownup debate about the likely cost of getting both sectors, health and care brought together.

That is happening in integrated care systems. Jennifer, you've written very eloquently about this, but I think there's a tremendous amount of goodwill out there to draw these together and have that kind of big bang. It's interesting I think the point that Madeleine makes in the book about who actually makes the decisions on care and policymakers themselves. You think about it. Most people are not moribund and ill themselves. Most people are relatively healthy.

What if we inverted, we appended that and we said, ‘No care policy can be made of significant proportion.’ I'm just busking this on my… but I see it for both paths. Actually, it's got to contain people who are going to be the end-users and the beneficiaries. What if we were to really ramp that up and say, ‘What kind of design of service do you actually want?’ Then it's up to politicians to actually find the solutions as to how to enable and deliver on that. I think there's probably a radical re-imagining of how we do policy in that space to help guide us through this huge moment of opportunity because a crisis brings opportunity, as well as pain and the mega downside, of course.

Jennifer Dixon: Madeleine.

Madeleine Bunting: Well, again I suppose I think it's both. I think we need a sort of national championing. It was interesting to see Boris Johnson's tone after he came out of hospital and the way in which he talked about the medical staff. I find that moment where he listed the names of all the nurses that had looked after him. That was a real moment of hope because I thought he's actually had a personal experience or something that could be really lasting and significant. We're yet to see whether that translates.

Imagine if he launched a care economy and made all the sort of song and dance about it and it was a big thing, I think it goes against the grain of a still very male-dominated political establishment. There's plenty of them that have very little insight into what care really entails. They're not going to get that insight and Anne Marie points out, until they're their 80s when the penny will drop, and then it's too late because they've no longer got the power. I think that the big national change of the language is…

I'm very interested in language. I don't like the language of delivery, delivering care. That's what you do with packages. You don't deliver… Somebody comes to my doorstep and hands a package over; I don't see them again. That is not care. Can we change that language? Then to go to your other point about local people, I think of it as a hugely important task about that redesign. One of the very interesting conversations I've had since the book came out is with the organisation Shared Lives, which is a terrific organisation which is about re-inventing social care.

Very, very inspiring and bringing almost like a foster model to people who for one reason or another can’t live on their own, and building relationships between people who agree to ‘foster somebody.’ They've got to scale now. There's about 14,000 people in their program. There's been some work with Manchester about how that will become the dominant role, the model of social care across Greater Manchester. It's just those kinds of organisations which are really taking the kind of relationship aspect of care.

They're not leaving that as a last thing to think about. They're actually putting it right in the centre, alongside expertise and skill and training. It's a bit of both. I would love it if a national commission was set up which was all about the care economy. Just to pick up the point that Anne Marie made which is that the politicians are listening. I was on Start the week with Jeremy Hunt, it was really remarkable. He's not the most favoured person in health circles I know for his various decisions he made as health secretary, but I think he's really made a journey. He was really interesting. It was terrific.

Jennifer Dixon: Actually, he was our first guest on our first podcast and was very thoughtful, I think, in many respects. What a good place to end the discussion. These are huge issues and we'll clearly be looking at them again later this year. Meantime, I'd like to thank Madeleine Bunting and Anne Marie Rafferty for their analysis and suggesting some really useful ways forward. I'd strongly encourage you to read Madeleine's really thoughtful book, Labours of love: The crisis of care.

As always, you will find other material we've mentioned in this episode and more in the show notes. We'd also love it if you could give us a friendly review. Next month, we'll be crossing the pond to ask the question ‘What will President Biden do next about reforming health care in the US and what does this mean for the UK?’ Join me then, and thanks for listening.