Dr Rachel Clarke: How the pandemic unfolded in the NHS

Matthew Taylor

Hello and welcome to Health On The Line. This week, a very special episode. I'm in conversation with Dr Rachel Clarke. Rachel's a former broadcast journalist, current NHS palliative care specialist doctor, and the author of three Sunday Times bestselling books. Rachel's books cover the topics of being a junior doctor, palliative medicine, and working on the NHS frontline during COVID-19.

The last of her books, the most recent one, Breathtaking, which is about that COVID-19 experience, has been adapted into a three-part television series, which is airing this week on ITV. So to mark this new series and to reflect on her work as both a journalist, but particularly as a doctor in the health service, I spoke to Rachel last week. 

Our conversation covered everything from her experiences during covid as told in the new show to how working as a palliative specialist has informed Rachel's view of care within health. Also, we talked about the role of political leadership and what the future of the health service is shaping up to be. I found it a fascinating conversation. I hope you do too. 

Rachel, welcome to Health On The Line. 

Rachel Clarke

Thank you very much. 

Matthew Taylor

I'm sure you are incredibly busy at the moment. Your TV series based upon your book has just gone out there, it's no doubt causing a huge amount of emotional response, I would have thought, in the public. It must be a very intense time for you at the moment. 

Rachel Clarke

It really is. I think it's been three years in the making now, the series. We first started working on it just over three years ago and despite all that time, I don't think you ever quite believe it's finally going to reach a TV screen. So it's a very daunting, exciting, nerve-wracking time at the moment. 

And I think most of all, I'm just on tenterhooks about how it's received by members of the NHS, staff members, colleagues, and you have this real weight of responsibility on your shoulders because I hope we've done a good job, an accurate, authentic job of trying to share this story accurately. 

Matthew Taylor

So I want to talk more about your experience, but also you have insights on all sorts of issues beyond this programme, the book about covid. But there's a couple of things that intrigued me about it. I read the book and I've watched the series. There are quite big differences between the two, aren't there? The series covers a much longer time period than the book, for example. So what were you trying to achieve in having the TV series, which has a slightly different kind of focus? 

And the book, of course, is based, although you anonymise some people, it's actually based on the events that occurred for you working in Oxford, working on the frontline, working in a hospice, whereas the TV series is kind of fictionalised. So I'm kind of interested in what you wanted to get out of the TV series and the decisions you had to make about the ways in which that was going to be slightly different from the book.

Rachel Clarke

I think with the book, I initially just wrote a diary pretty much for myself and not for public consumption at all really. I found it incredibly stressful in the lead up to the first lockdown. Like many of us at the NHS, we could see this horrific thing coming on the horizon and I don't sleep when I'm anxious. So I tended to just get up and bash away my laptop in the middle of the night. 

And then gradually as the months went by, I started to realise that I had this testimony that was important. It might be only my experience, but nevertheless, it was one NHS doctor's real experience of the pandemic. And I started to feel as though it mattered to put that in the public domain. I think when increasingly the public narrative around covid and the management of the pandemic diverged from what we knew to be the case from our perspective, working on covid wards inside an NHS hospital, there were things that were being claimed, alleged to the public that just weren't true. 

For example, the claim that there were no national problems with PPE when we absolutely knew there were because we couldn't get it. We were having to get it from local businesses or veterinary practices. And the book I wrote with the cooperation of my trust, I went to them initially and said, I'd like to do this. I want to show the public what the NHS and NHS staff are trying to do in this pandemic. 

But I only wanted to do it with the support in a way of my trust. I just felt like it was too great a responsibility to do it without that. And they were very supportive. They allowed me to interview other members of staff, patients, and didn't exercise any editorial control at all over what I wrote. And I let them read the book beforehand to make sure that everything I'd written was accurate and they were very happy with it. 

By the time we started thinking about the TV series though, I think enough time had passed for us to have entered the phase of the pandemic where so many times what the scientists and doctors perhaps were feeling about how things should unfold were just at odds with government decisions. And I wanted to have free rein dramatically and creatively to almost tell any story that I could within the constraints that everything that appeared on screen had to be true. 

It had to have really happened in some shape or form to real patients, real members of staff, albeit with everything anonymised. And the only way to do that was by locating the series in a fictional NHS hospital which is set in London, but it doesn't map onto any particular hospital.

Having that freedom meant we could tackle almost whatever territory we felt was most important to try and put in the public domain rather than be constrained by my own personal experiences. 

Matthew Taylor

Yeah, that's fascinating. I would recommend to people to read both the book and watch the TV series because I think they're complementary and I think kind of in a way it's kind of interesting comparing them and the roles that the job that they do in terms of the core messages you're getting across. 

Knowing that series was coming out, you must have watched, I assume you watched the Post Office expose series and some people have drawn parallels between these two, although they're different, but I guess the thing I'm interested in is the Post Office series has led to a huge refocusing or a new focusing on accountability and responsibility for what went wrong in that scandal. 

Is it your hope that the TV series will again kind of rekindle a focus on essentially who is to blame for all those things that went wrong? 

Rachel Clarke

I think more than the question of blame because I'm not sure blame is ever constructive, particularly when we're talking about the NHS. I believe it's right that we inhabit a no-blame culture as much as possible. I'm married to a pilot and talk to him endlessly about the model for investigations in the aviation sphere and how important a no-blame culture is there for properly investigating the root causes of crashes and so on. 

I think we should have something similar in the NHS as well. What I hope Breathtaking the television series will do is first and foremost, make the public engage with the reality of how the pandemic unfolded in the NHS. So there's something very interesting around whose stories are heard in society, why are certain people's stories heard and certain people's silenced or overlooked, and then how do we persuade people to care enough about a particular story to act on it. 

So the Post Office scandal is a wonderful example of a very well-known story that nobody really cared about. A lot of journalists had tried to hold people to account there for a national scandal, but it just hadn't cut through. I think television has this incredible power to harness the emotions of the public through storytelling. 

And what I hope most of all is something very simple that in watching the series, the public, it will stop them in their tracks and they will suddenly say, wow, I actually understand what it was like for NHS staff on those frontlines. Because I think it's easy to assume you understand it without really being emotionally connected to a story and to some extent when that story is traumatic, and living through the pandemic was collectively a national trauma for everybody, we all lost something in this pandemic, even if it was just the freedom to go outside and interact with our friends, everyone lost something. 

It's very easy in response to trauma to just put it to the back of your mind, look forwards, move ahead. But at the moment, if we do that, I think we're doing a grave disservice to NHS staff because at that moment in 2020 when the whole world was collectively and rightfully quaking in the face of this new global disease, NHS staff stepped up and they walked towards the danger and they chose to risk their lives by walking towards patients whose every breath was redolent with a virus that they knew if they caught it could kill them and indeed went on to kill over 850 NHS staff and care workers. 

And I think to do that often with inadequate PPE and sometimes with literally no PPE at all is enormous. I think NHS staff were treated to some extent as expendable, as cannon fodder. They were lied to by people in very senior positions when our PPE was downgraded at a stroke in the early days of the pandemic with no explanation and then an attempt to claim that actually it was physiologically justifiable to send you out with nothing but a paper mask.

All of that was wrong. We need to be telling that story because we owe it to all those NHS staff who took risks with their lives and some of whom lost their lives to hear their story and hear what they went through. So that's not about apportioning blame, it's almost about respect and paying tribute to what people actually did and not forgetting it. 

Matthew Taylor

Yeah, and I want to come back to that, Rachel, because I think that's a really important part of the book in particular, but there's something also interesting for me about the fact that the TV series takes us into the second big covid wave and implicitly a kind of critique of the complacency policies like Eat Out To Help Out, families getting together for Christmas and that whole wave that then occurred subsequent to that. 

That was obviously important to you to want to make a point about that because obviously that's not in the time span of the first book. 

Rachel Clarke

Yes, very much so. I think it's entirely understandable and forgivable to make mistakes in how you manage a pandemic. We all made mistakes, the NHS made mistakes, I have no doubt as an individual I made mistakes and of course the government got things wrong. This was a new virus. None of us knew how to treat it to begin with. But what is much less forgivable is repeating the same mistakes. 

So you can say we made a mistake in locking down too late first time round, but by the time you get to winter 2020 and omicron is ravaging the country and you have the scientific advisors in the SAGE saying to the government, you need to lock down, you need to have a circuit breaker, you need to stop this thing in its tracks. 

To have a government that not only refused to lock down then and made the same mistakes as before, costing tens of thousands of extra lives, but to also have a government that stood up in front of the public and lied and said they were following the science at that time when they manifestly weren't, is just completely unforgivable. And I think that's why I felt so strongly we needed to include that horrific winter wave because that wasn't a question of making mistakes. That was a question of the government not being honest with the country. 

And I am someone who believes to my absolute core in the NHS, I was going to say beauty of candour. That's not what I mean, duty of candour. But it is a beautiful thing. Doctors, all of us, we should be candid with our patients. If my patients can't trust me, I am nothing as a doctor. I don't deserve to practice medicine if I'm not candid. 

And I happen to believe that that duty of candour should go all the way up to the top of the NHS, to the CEO of NHS England, to the health secretary, to the prime minister of the day. And if they, if Boris Johnson is looking the public in the eye and saying, I am following the science at all times when he isn't, and SAGE advisors are now on the record saying, no, he most definitely wasn't, then he doesn't deserve to be prime minister in the same way that I don't deserve to be a doctor if I'm dishonest too. 

And I think that shouldn't be an outlandish or controversial thing to say. That's just obvious. You earn the respect of the people you govern by being truthful in them. And that's never more important than in a public health catastrophe, when the only way you can get through it as a country is by trusting each other and working together. 

Matthew Taylor

So one of the really important ideas in the book, which is also an important idea in your other books and indeed in your whole life, Rachel, is the importance of care. The choices you've made in your career since you came into medicine after starting off your career as a journalist, you say explicitly in the book, you wanted to be with people who were really, really sick because it felt that that was the point at which you could make the greatest difference by caring for them. 

And in some ways the book is, it has more up moments than the TV series, because there's more in the book about those moments of profound care and love and the importance of them. But you also talk in the book about this concept of moral injury. And certainly when I speak to NHS leaders and talk about staff, the thing which they find hardest to talk about, is that there are staff leaving their shifts at the end of the day who feel they've not been able to provide the care, which is the very reason that they embarked on this career in the first place. 

Rachel Clarke

Yes, and for me, I think that's the central tragedy of the NHS at the moment and, putting the politics on one side, it's really astonishing to me that the one thing you never get asked in your medical school interviews, when you're asked, why have you chosen to be a doctor? You're taught never to say, because I want to care for people, I want to help people, as though somehow that's too emotive an answer to give when of course it's what makes people want to work in healthcare. We all go into it because we care about people and we want to help. 

I found during the pandemic, the thing that did break many of us and felt like it was nearly breaking others of us was the unbearable environment of PPE barricading you from your patients in every sense and crucially the requirements of infection control and trying to prevent contagion and infection of other people barricading loved ones from the hospital. 

And I will never forget in the early days I noticed the empty car parks, which for a start were haunting in their own right because everyone knows that it's never possible to get a parking space in an NHS car park. They would be empty apart from a few cars and those cars would just be stationary, pointed at the front entrance of the hospital with a person sitting in each car. 

And after a while I realised, my god, these are relatives and this is as close as they can get to the person who I may be treating who’s dying inside the hospital and every physical human instinct they have to be at the side of the person they love is being denied. And we all had to almost try to be the proxies of the family members who couldn't get inside. 

And that was enormously difficult, but we did step up as staff in every possible way to try and provide humanity and care and a little bit of love at the bedside even during covid. But now the greatest barrier to doing that is time and resources. 

If you're run ragged or if you're trying to treat a patient who's on a trolley in a corridor who can't even get into the A &E department, you just are being denied by the system you are working in anything like the circumstances that are conducive to instilling a patient with some sense of dignity and safety. 

I have to have end of life conversations now, sometimes in A&E, where I'll be talking to someone who's on a trolley and I know they're dying and I'm having to have a conversation about their end of life wishes and we don't even have a curtain to put around us. There's no dignity, there's nothing. It's disgusting and I'll kind of look at this 92-year-old and I'll think to myself, he or she has spent their whole life working hard, paying their taxes, having a good and decent life, and here they are at the end of their life and I'm working in an NHS that cannot even give them the dignity of a curtain around them in the final hours of their life. And I'm complicit in that and it breaks my heart. And I think that's more than anything is what distresses staff today. 

Everything they've done in their training is about trying to help people and their hands are tied, they’re trust up impotently by the system and they cannot deliver the care they want to or even anything close to it and they find it heartbreaking. And I probably see a doctor or nurse in tears every week at work at the moment and have done for a long time. 

Matthew Taylor

So Rachel, that's typically eloquent and you're a fascinating person with this background that you've got, you're from a family of medics, you decide not to go down that route, you become a journalist, then you retrain, become a doctor, and then in a sense, almost full cycle, you're now known as a doctor, but also as a campaigner and as a writer. It gives you a really interesting perspective. 

So I just want you to stand back a bit now and say, what do you think as a nation we're getting wrong with the health system? And we can all say, well, we should put more money into it, but, as I'm sure you'll know, we're not putting enough money into schools, we're not putting enough money into prisons, into libraries, into defence. You know, if there is a new government, not only will the new Secretary of State find it hard to get money out of the chancellor, but they'll be sitting around the cabinet table with other people saying, well, look, I can't fulfil my statutory responsibilities. And health looks like it's done rather well in comparison to other public services.

So look, money is a big part of this. And we at the Confed will argue for realistic, revenue money, we'll argue in particular for more capital investment because that's a huge issue. But what else is it apart from investment that we're getting wrong about our approach to the health service, Rachel?

Rachel Clarke

Well, really taking a step back and always thinking globally for a moment as well as nationally, I think there's an incredibly fundamental conversation that we are not having at the moment about healthcare in the broadest sense, not whether we're treating the social and economic determinants of health versus just trying to treat problems when they arise. That's an interesting conversation in its own right. 

But even more broadly, I think that we, the medical profession, have created an enormous societal problem through our own successes. So if you compare what we can do to intervene to help people who are ill and to help support their health today compared to a century ago, so 1924, obviously the differences are immense.

In 1924, by and large, most illnesses, if they were going to kill you, there was always nothing we could do to stop that happening. We didn't have expensive chemotherapies or technologies or genomics or even hospitals. We didn't have that technology. And so medicine was cheap because we couldn't do very much. At most we could maybe afford a few antibiotics and then it's starting to come in. 

Now we can do the most dazzling and miraculous and astonishing things. We can transplant hearts, faces, we can cure sickle cell disease with gene therapy. It's astonishing, but all of that is expensive. So at the moment, the whole discussion of how much healthcare are we collectively going to provide as our basic universal rights to everyone in British society versus how much could we provide if we paid for everything? 

I don't think it's happening in a fundamental sense. You can say, well, look, it is happening via NICE, the National Institute for Health and Care Excellence. But I think as a society, we need to be asking ourselves that fundamental question - how much expensive technological healthcare do we want to spend on ill health in our society? 

Because we can't afford state-of-the-art single gene manipulating drugs or chemotherapies or immunotherapies for everybody, even if they might give you an extra two months of life. So how much are we going to decide is the right amount? 

And at the moment, I think instead of having that discussion, the limiting factor on how much healthcare we are providing ourselves as a population, is determined by waiting lists. It's determined by the 8 million people waiting for operations, the people who die at home because there aren't enough ambulances even to get to them, let alone get them a bed in a hospital. And these are terribly wrong and barbaric ways to allocate healthcare.

You could say in some ways they're almost as bad as allocating healthcare according to who can pay for it. So there's an enormous conversation to have about recognising how expensive our capabilities are now in healthcare. And in the light of that expense, what proportion of our societal wealth are we willing to spend on healthcare versus, for example, making sure that kids are going to school and not being hungry or they're actually getting a halfway decent education. 

And I just don't think any of the political parties are really engaging in that. And nor in fact, I think is the medical profession. 

Matthew Taylor

Yes. Well, Rachel, we don't have that much time, but I'm going to I'm going to abuse my position as host of the podcast to just suggest a couple of ideas to you, because I think what you've said is powerful, but I think there's a couple of other ways I think we need to start to change. It's not going to happen overnight, but start to change our thinking. 

So the first is there's a kind of industrial model of health, isn't there, which is NHS England and trusts, and it's all around access and meeting demand. It's a medical model, medical industrial model. 

And then there's a social model of health that says, well, look, 80 per cent of our health is determined by factors outside the health service. And actually, if we really want to improve the nation's health, we want to focus less on kind of organisations and more on places, not just on the health service, but on housing and welfare and all of those things. 

And that's not just a conceptual distinction because actually the industrial model says the problem is the public and their demand and it's impossible to meet that demand. Whereas the social model says, no, the problem is the reverse. It's actually about how do you engage the public? Because ultimately it's only by feeling a greater sense of agency and confidence and efficacy about their own health individually and collectively that we can really make a difference. 

Now it feels to me as though these two paradigms exist uneasily together and it's really important to make progress in that industrial medical model and as you say that there's been amazing innovations and the health service has fantastic work every day and although those innovations are important, unless we get the social side right, we are forever going to be on a hamster wheel because rising public expectations and growing demand means we can never meet need just ourselves in the health service. What's your view of that, Rachel? 

Rachel Clarke

I essentially agree with you apart from in one aspect. So you said, you know, in that medical industrial model, the problem is its public demand. I don't think that's right conceptually. If you get hit, by a car and you need very, very expensive surgeries that cost tens or hundreds of thousands of pounds, you're not demanding something. You need something. So I think the model, the medical industrial model is actually driven by health needs that are nothing to do with demand. It almost sounds slightly as though you're blaming the patients. 

And I think the difficulty with investing, resources into environments, homes, the social determinants of health, all of which is clearly, I think, going to end up giving you more health overall in a utilitarian sense. The problem with that is you are still left with scenarios where somebody has a baby and they discover they have a congenital heart defect, and a very expensive heart surgery or heart transplant followed by years of follow-up and expensive treatment. 

That happens. And we know that we have the ability to do all of those incredible things and transplant that heart. But we are now saying, sorry to that family. We're not going to do that. Your baby's just going to die because we have chosen on utilitarian grounds to put our resources into the environment to inhabit and make them as healthy as possible for the benefit of the population at large. 

I absolutely agree that that is the way to maximise health in a population. But when you're sick or when it's your baby who needs the million pound therapy, you don't care about everyone else. You don't want your baby to die. And that's the problem. And it's not about demand. It's that we have created all these astonishingly expensive treatments that we now can't afford to provide everybody while building healthy environments. 

And I don't know how we fix that, but I think it's understandable that simply talking about building healthy environments is not going to get round the problem of having created these magnificent, astonishing, very, very expensive technologies. 

Matthew Taylor

I agree with that. And I think part of that is about distinguishing between interventions which clearly are very effective and save money and do people a lot of good. I did an edition of this podcast a few weeks ago on vaccination and it kind of feels to me like we ought to put much more energy into vaccination even than we do now because it's incredibly cheap... 

Rachel Clarke

Yes.

Matthew Taylor

…it's incredibly effective and it saves us a lot of money from people not being sick. 

So I think part of this is about where do we put our energies because there are places and when we talk about prevention, we're very imprecise. Often we say, prevention saves money – well, some prevention saves money, some prevention doesn't save money. Some prevention costs a huge amount of money, but it helps people live longer lives. So I think you're right, we have got to be clearer about our priorities at least. 

Rachel Clarke

And of course, the other problem with prevention is prevention, if it helps more of us live longer, healthier lives, on the one hand, that's wonderful, that seems to be the goal of medicine. But at the same time, you're then creating an extremely costly problem. You are creating an ageing multi-morbid population. In fact, that's exactly the world we inhabit now compared to a hundred years ago. 

Life expectancy is extraordinarily long compared to a century ago, but we also have many more relatively unhealthy people living with conditions that become increasingly costly to treat. So that's the other problem. I think almost all of the investment you pour into creating healthy environments creates a problem almost down the line of people who now are living longer and have more expensive health needs and who is paying for them? 

Matthew Taylor

I agree with that. Although there are lots of things that we could do to reduce the number of unhealthy years that people live. And if most people were reasonably healthy until they got to 70 plus, it'd be better for them and better for those. It's the real issue. I mean, a really big issue is the number of people who get sick, chronically sick, pretty young in their life. And that has an impact not just on their health, but of course it means that they can't work and et cetera. 

Now, Rachel, one last question, I'll ask of you as a doctor, but also as a doctor who's worked a lot in palliative care and written about it. 

So this is a kind of parallel distinction between that kind of industrial medical versus social one and that's medicine treating bits of people's bodies, the medical model if you like, and addressing people as a whole. I have a close friend who's had long COVID for a long time and found it very difficult to get any kind of proper treatment. 

Finally got to see somebody and said to this consultant, why is it that there's so little being really done around long COVID? And he said, well, part of the issue here is that we in medicine like to treat individual things that we can address. The thing about autoimmune conditions is they're complex, they are multifaceted, they don't fit that easy model, they require a whole person approach which we're not terribly good at. 

Now of course that whole person approach is also what characterised palliative care because you've moved beyond the idea that medicine can fix the bits and pieces of our body and you're thinking once again about the whole person. Do you think that there is some truth to that and do you think we still have a journey to go on in terms of trying to see people in the health service as whole people, not just as bits of bodies. 

Rachel Clarke

Very much so. And actually, Matthew, I think that applies as much to how we treat staff, who are, of course, the lifeblood of any healthcare system, as it applies to how we treat our patients. So in the same way that it is absolutely not conducive to good medicine to treat your patient as the liver in bed eight or the glioblastoma in room two, you know, that kind of language is still used sometimes. These are people, they're human beings. 

Well, so too, is it not helpful to treat staff as numbers on a rotor or a spreadsheet? I sometimes feel as though the focus on efficiency and demonstrable performance means that healthcare outcomes are skewed towards that which is countable. 

Can you reduce it to a number? Because if you can't, it doesn't necessarily exist, except in a sort of patient experience survey, what percentage of people thought you provided good care? And actually, the things that are the glue of a healthy functioning hospital or healthcare service - morale, teamwork, solidarity, willingness to go the extra mile - they are born out of human relationships in exactly the same way that a patient feels cared for, feels listened to, feels as though they can trust their doctor, all on the basis of the human relationship they have with that doctor in front of them. 

I was lucky enough to start my medicine 15 years ago when we still had medical firms. And so I have this incredible experience of being part of a small team of people led by a consultant. And we were like a little, I'm not very good with military vocabulary, but platoon or squadron or whatever the right phrase is, we were a little group who were in it together, sort of going into the trenches every day on take in A&E. And our relationships were nurturing and I was taught by my seniors. And as I became more senior, I loved teaching the juniors on my team.

Now in a hospital, the junior doctors I encounter so often are little pinballs. They're just ricocheting around from one ship to another, one spreadsheet to another. There are no human relationships. And in just the same way that that lack of humanity is toxic and corrosive to the doctor-patient relationship, so too I think it is in a managerial sense, anything we can do to nurture humanity in a healthcare setting is precious. 

And maybe to end on something positive. I am a doctor, despite everything, who goes to work every day loving my job. I look forward to going to work every day. I know that something interesting and fulfilling will happen to me every single day at work. 

And I think that's because I know that no matter how awful the conditions, how many ambulances are stacked outside A&E that day, if I focus on this human being right in front of me right now, and I give them my full attention and I try to understand them and I try to communicate to them that they're important to me and I will do everything I can to help them. 

Even if they're dying, even if there is not a single treatment I can offer them, I am still offering them my humanity and that counts for something. It makes a patient feel less alone, less frightened. And I always try to tell junior doctors, people I encounter to remember that fundamental fact there's always something you can do to make it better for a patient always because you're a human being. 

Remember you've got agency, you've got that power and that applies to us as colleagues to each other as much as it does to a doctor and a patient. 

Matthew Taylor

Well, Rachel thank you so much. I can strongly recommend Breathtaking. It's an inspiring book, an important book and I could also of course recommend that you watch Breathtaking the TV series available on ITV. 

Rachel, thank you for your work as a journalist and writer, thank you for your work as an activist and campaigner, but thank you most of all for your work as a doctor for our health service. 

Rachel Clarke

Thank you very much Matthew.