For a fresh perspective on the challenges facing the NHS, Matthew sits down with Charlotte Augst, chief executive of National Voices, the leading coalition of health and social care charities in England. Sharing insights from patients and communities, Charlotte explores the pandemic, living with COVID-19 and health inequalities. She also shares details of new National Voices initiative to link people with lived experience of the health service with health professionals to help inform their approach to providing health and care.
- A new relationship between the NHS, people and communities: learning from COVID-19
- How health and care systems can work better with VCSE partners
- Integrated care systems - to whom are you listening?
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Health on the Line
Our new podcast series offers fresh perspectives on the healthcare challenges of our time and ways to confront them. Tune in for interviews with the movers and shakers making waves across health and care.
A few weeks after I became chief executive of the Confederation, I went for a drink with an old friend, and I talked about the challenges of the job. He said there's someone you should talk to. She only lives up the road. So, a few days later, I found myself walking across Tooting Common. It was someone who gave me immediately such fascinating insights about the health service, such different ways of thinking about the challenges that we face, and particularly from the perspective of patients and communities. But ever since then, whenever I've wanted a new insight, I've always turned to her. Today, I'm going to share some of those insights with all of you in Health on the Line.
So, I'm delighted to be joined by that person who walked with me on Tooting Common and gave me that advice and continues to give me great advice. That's Charlotte Augst, who is the chief executive of National Voices. Hi, Charlotte.
Hi, Matthew. Lovely to speak to you today.
First question. I know a bit about National Voice, it's a great organisation. But for somebody who's never heard of what it is you do. Tell us about National Voices.
We have a coalition of health and care charities in England. They are the very large ones you will all have heard of… Cancer Research UK, Alzheimer's Society, Diabetes UK, all those. And then lots you might have heard of if you have a rare illness or maybe love someone who has a rare illness. And then also increasingly because we took all our engagement online during the pandemic, we also have attracted members who are more locally based and focusing much on inequalities issues and inclusion, health, because we've met quite a noise about that.
The thing that means we’re quite an interesting knot in the network of health and care organisations is that we're both very close to the grassroots and that the organisations who are members of National Voices work very directly with people who've got substantial health and care needs, and they know better than almost anyone what those people want and need.
But we're also very much at the top table in many discussions, we’re very much in all the programme boards and transformation groups and project programmes, all that stuff the NHS sets up to reform itself. We are in those conversations, and I think that gives us an interesting opportunity to take the insight from the grassroots to the rooms where decisions are being made.
It's challenging doing that and doing justice to both those cultures. But I feel it's something really worthwhile doing.
What's your kind of mission?
We're trying to make healthcare more democratic, more human and more equal.
There may be some people who say, well, that it's the National Health Service. It is democratic, it is human, it is egalitarian. Why, in a sense, do you need an organisation like National Voices?
Well, there's lots of reasons, really. But one of them is that health is created and maintained, but also undermined and challenged often outside of health services. And health and care charities straddle those places. They look after people and work with people who live with Alzheimer's or severe mental ill health or endometriosis, both inside their health service use but also very much outside.
So, it has a much more life rather than service perspective from my sector, which I think is one that the NHS very desperately needs. But I'm always struck with how clever and committed and good the people are you meet in all these decision-making rooms inside the NHS, and how many of them there are. I mean how many senior leaders can the health system carry? Hundreds and hundreds, but we produce these very unequal outcomes between all of us.
And also apart from the inequality, which is obviously a moral outrage, we produce quite poor experiences for people. We produce avoidably poor public health outcomes. And if you do a little bit of system thinking, one of the mantras of that is every system is perfectly designed to produce the outcomes it produces. It's obviously not to do with lack of commitment or intelligence of system leaders.
Something isn't working in the way we've configured all of this, that it is still quite a rare thing for people to use health services and say, from the receptionists to the pharmacist to the GP to the specialist, people knew about me. I did not have to repeat myself. What mattered to me, mattered to them. As I transitioned from one part of the sector to another part of the sector, what mattered to me was still relevant, it was still known to people. I mean, that does happen. I don't want to say that doesn't happen, but it isn't the norm, is it? There’s a whole genre, journalistic genre, of people like us writing blogs and comment pieces about how we understand the health system really well, but only now that our mum has fallen over, do we realise how it doesn't work.
So, I think this is quite a very common experience that people, even people who are as smart and empowered as we are, find it quite hard to make the system work for ourselves or our loved ones.
So, listening to that Charlotte, it could almost be a kind of preface to the integration white paper in a sense of, this is the problem, this is the world we want to move from, and this is why in this white paper we’re advocating a joining up of services, sharing of data, devolving power to place level etc.
And yet whilst when one reads that integration white paper and I'm sure you like I was involved in conversations about it, should we have more hope this time that some of these lessons are being learned?
I don't feel terribly hopeful when I read the latest iteration of the centre’s attempts to push the point on integration. I think it's really quite telling that we have a bill worming its way through parliament, which has the explicit and stated aim to integrate health and care, NHS, and local authority services in places or systems or patches or whatever you want to call it.
And then we kind of overtake this process through the publication of another white paper. I can't think of another example where you would do that. I mean, maybe paradoxically, the thing that gives me hope in that is that maybe the people who are tasked with making the change happen on the ground realise that they're on their own. That the help won't come from there and that they just need to, in a way, listen harder to what their local stakeholders are saying, what their local system partners are saying, what their people and communities are saying. Because that hasn't changed just because there's another white paper, and just because there's another bill, and just because the STPs are now called ICSs, we need to create an ICP and an ICB and all that stuff. You just need to actually listen to the very consistent narrative that you will pick up if you listen to your local signals.
So, I want to move to this kind of question of what are the principles and the culture that ought to be underpinning health and care practice? But before we do that, because I don't want us to be in an entirely kind of gloomy territory, what does good practice look like then? Charlotte, you just talked about how you've seen great leadership. Give us a sense of when it feels right, from your perspective.
I think good practice involves a degree of humility. There is an unbelievable prowess and wealth of resources in the modern medical model. Just think about the vaccination programme. My mind boggles when I think about how clever that all was to get to that vaccination so quickly. And then to build the infrastructure, to get it out to people and to put tents in car parks and to build an I.T. system that captures on which day I had which dose from which vile. I mean, that is just it's just genius, isn't it?
But the clever leaders of that system realised it's not enough. The NHS isn’t enough, it can't do it alone, and that it needs to really invest in partnerships. And where we managed to push the vaccination into communities much deeper and much wider, that's what happened. And that super impressive technological skill that was involved in getting the vaccination programme to that point was then complemented with the authenticity and depth of relationships that can only exist in places, and that are different and that are personal.
And that is something a lot of people say, but I think the leaders who do it and who do it well, they realise that this is a non-trivial challenge and that you need to treat it like any other non-trivial challenge, and you need to give it some resource and you need to give it some time. And the volunteer drove the minibus from the mosque to the vaccination centre was very cheap but that didn't happen for free. And with the vaccination programme, we did put a bit of money behind all of that, but sort of treated that as a non-trivial problem. How are we going to get this to people who live with severe mental ill health? How are we going to get this to people who don't speak English as a first language?
I think Charlotte, this is such a powerful point. And, yesterday I was at a seminar on health disparities white paper. And one of the things I noticed in that was this kind of flipping and flopping between we need a big national initiative on smoking or hypertension or obesity and big national targets, and person after person saying, well hold on, you have to engage the community. You have to recognise the specificity of place.
And I think it's strange. It is in no way an obvious point, but the way you've made it is so powerful, the real learning from the vaccine programme is that you can do both at once. You could have your big national mission, which is to get the country vaccinated and beat covid, but you can recognise that actually the way in which you do that has to be one which involves reaching out, listening, empowering and strategies which are suited to local circumstance. That’s the core of it, isn’t it?
Yes, and I agree with you because we don't want to just be gloomy about all of this. I'm actually quite hopeful that on some parts of the inequalities agenda we seem to find ways of combining those strengths. I'm thinking about the Core20PLUS5 way of framing inequalities and what we're going to do about them. And we have raised some questions about this programme and it could always be improved and we hope to get into a stronger dialog around some of it as a sector.
But this idea that you don't treat the inequalities piece any more as a problem of the little inequalities team, the three young bright things who report to the CEO. You sit outside the CEO's office and you write papers about inequality and you say this is now a problem for our cancer director, for our maternity director, for our cardiovascular director, and this is now a problem for the programmes that our trust runs where we spend the millions. And this is a data problem for you, and this is an improvement problem for you. And we want to see some results. I think that's quite a clever move. Because it locates the inequalities question at the core of the activity of healthcare providers and commissioners.
And then you will find if you look at your cancer statistics in your trust that minority, ethnic and poorer people have their cancer diagnosed far later than white and middle-class people. And to do something about that, you need to go out to those communities.
So, I think that sort of lens, that improvement lens, and starting with a challenge to the core of the system and not just the little strategy team, but then realising that in order to fix it, you need to patch together a whole number of small solutions. I think that could potentially actually take us quite far.
And so, one element of this Charlotte, is just making sure that in the room, in the governance room, in the policy-making room, in the strategising room, there are people who actually understand how this feels, how being a recipient of care feels. And that takes us to this notion of experts by experience or lived experience. And I know you're doing a lot of work in this.
What seems to me is that there's a kind of slight danger that this becomes a kind of tick box thing of we must have someone who's got lived experience, and as long as we've ticked that box, everything is going to be fine. Tell me what's the strength of having experts by experience and what are the things we need to avoid if we're not going to just turn this into something that feels a bit tokenistic?
I should probably start with saying that the people who are leading health and care services have themselves got experiences of using health and care. And so, it’s kind of interesting that doesn't come through more strongly in how they approach their work. And I think there's something about this notion we have of professionalism that reduces the resources we draw on as people in ourselves in making decisions. And I think it's kind of quite telling that sometimes when you look at a health and care leader and you think, gosh, they're a little bit different! They sound like a human being, they seem to bring their heart into work. You then learn when you get to know them a bit better that they're not just casual users of health and care services. They or someone they love, has a substantial health problem or a disability. And this is something that has shaped them as people very profoundly. And I think that should give us pause for thought.
But I agree with you it's very easy to do this work in a in a tokenistic way. And I think you've lost a lot of goodwill by doing this work badly. And I don't just blame the formal health and care system for that, because I think sometimes, we as the voluntary and community sector have been complicit in just the box ticking kind of engagement exercises.
I think what we need to do is to find a more intelligent way of bringing into dialogue learned and lived experience, because I don't want my cancer surgery to be conducted by someone with lived experience of cancer. I want it to be conducted by someone with learned experience of how to conduct surgery. So, in healthcare more than other public services, I think it's very obvious that we need the leadership of learned experience as well as leadership of lived experience.
So, one thing we are trying to do, and we've had funding from the Health Foundation to think that through in a very systematic and sustained way, for which we are grateful because that's not often how my sector is able to work; really try something, really go through a design process, really test, really dismiss, really start again. So that's the luxury you get when you have a progressive funder about your side.
And we came up with this idea that we want to bring learned and lived experienced leaders into a thinking partnership, recognising that system change is actually really hard to do and that when you try to do something about delayed discharge or unplanned admissions, these really thorny, thorny problems, a little workshop isn't going to hack it, is it?
So, what could be done to keep the person in charge of a transformation programme focused on the task at hand, which is to change the experience of actually using services? And so, we have trained our first cohort of people with lived experience of both in health and health inequality, and we've taught them coaching skills and we are now partnering them up with system leaders for them to start a coaching conversation where the system leader can really choose what is the problem they want to think through. And the coaching partner, the person with the lived experience, tries to help them think consistently from the perspective of a service user. I am really hopeful that this intervention might do justice to the complexity of actually leading change. And we are still very much in a learning mode on this, but I'm hoping that it will not feel tokenistic and it might ripple through change in a way that actually makes a difference.
You've talked about transformation, Charlotte, and in a sense, this need for a continuous input from service users. But you're also a very kind of deep, sharp policy thinker. Where do you think are the areas of the health service that do need capital ‘T’ transformation, that really needs a fundamental change? I suspect that primary care might be one of those.
Yes, definitely. And I'm always a little bit scared of that transformation term, because I just do wonder whether that kind of makes people tap into unhelpful concepts of heroic leadership and magic and crossing your fingers and hoping for the best! I think ‘improvement’ is often a more useful framing, measuring outcomes, deciding which one you're going to tackle, trying something and measuring what happens once you've tried it.
Those improvement cycles, it sounds a bit pedestrian, but I do think it is actually quite profound because it keeps you engaged with the outcomes, whereas I think the transformation framing often means you spend all your cleverness, all your very, very considerable intellectual resource on dreaming up a model and then you just sort of throw it over the fence and then kind of move on to the next thing.
I'm just going to interrupt for a second because I want to suggest it's a false dichotomy in the sense that I often talk about split-screen thinking. And what I mean by split-screen thinking is that you have a vision of where you want to get to and the decisions you have to make next, the improvement decisions, as it were, or simply the reactive decisions are at least informed by some notion of where you ultimately want to get.
So, if you take primary care. You need an ultimate vision of primary care, which for me is about primary care in terms of leading population health management. So fundamentally, the transformation is a shift away from the idea that as it were, people sit in general practice and wait to see who comes through the door, to a world where primary care has a deep understanding of the needs of its population, a deep engagement with its population and it's proactively developing strategies which prevent ill health and prevent inequality.
Now, that shift, that transformation from a system driven by demand to a system that goes out proactively manages population health, that's the ‘big T’ transformation. But then the decision about, well, what do we do about the next thing? What do we do about, I don't know, the GP contractor, what do we do about delay, discharge, or whatever it might be? It is at least informed by that vision, isn't that right?
That's a really helpful sort of discipline that I certainly try to engage with my team on. It’s like, okay, where do we want to be in three or five or ten years’ time and what can we do right now that doesn't at least make that less likely to happen?
I think in primary care, it's quite hard to do that well because I think it is so obvious that some of the things that really need to happen are very big things and they need to happen quick. Like we need to really invest in workforce, we need to really invest in buildings, we need to do these things that our current government are quite unlikely to make happen. So, I think we get a bit blocked then, and then we have these sorts of skirmishes instead about what's the percentage of face-to-face versus online consultations and what's the right percentage? Which strikes me as a as a skirmish that's not very helpful for the decisions as to what primary care needs to look like.
I agree with you that the future of primary care needs to be much more concerned with the health of people rather than health service use. I don't like the language of population health management. It sounds to me quite 20th century, like your people being pushed around some map by some army generals.
It just feels like you're doing to. On the right-hand side of my split screen, I see primary healthcare services that support people, particularly those living with long term ill health and disability, to live as well as they can. So, there's a very strong focus on support and self-management.
There's a real recognition that 99.9 per cent of diabetes care happens in the home by people who have no formal medical training, that the vast majority of dementia care happens in the home supported by carers who are often themselves not very well, or old, and often don't work and have very little money. So, you kind of start with recognising who does the healthcare, and you take that as a design principle for what then needs to happen.
So, you build health services that are much more about improving the ability people have to do the right thing for their health and supporting the community to hold each other’s needs to an extent. And then you kind of build permeable structures around and into that. That also takes seriously the insight that no one out there using primary care services understands the distinction between primary care, community care, social care, pharmacy. This is all the same for people already. The public are 25 years ahead on this integration agenda.
The fact that a carer comes in the morning and in the afternoon, they think the GP has sent that carer. This is all the same from a person's perspective. You take that seriously and you say, well why are we insisting in all these different systems, why are we insisting these are all different funding pots? But I think you sort of build outwards from where people are at rather than saying, okay, who needs to sit on which board? Which seems to be the way we try to constantly do this.
Charlotte, one of the things that's happened a few times in my life is a moment when I just suddenly look at an issue from a different angle in a way that's terribly liberating. And I want to end our conversation by offering a suggestion that we might want to use.
But let me just explain what I mean with another example. One of the things about working for Tony Blair in the early days of New Labour, was that from the perspective of the left, my attitude had always been that people were basically wrong about the world and the task of the left was to get people to stop being wrong about the world and to persuade them to think about the world in the right way, in an improved way. And the great thing about Blair, whatever you think of Blair, is that Blair's view of the British people was that they were right. They were right to want to pay less taxes. They were right to worry about crime or whatever it was.
Your job was to tell them that we had the best way of responding to their genuine, legitimate and reasonable views. Now, that doesn't reflect very well on me, but that was a kind of enormous moment of liberation. I stopped thinking I'm going to change what people think and thought, oh hang on, I've got to respond to what people think and persuade them that Labour has the answer.
Now, I want to suggest a similar kind of paradigmatic kind of shift, which is that we have thought of the health service, the fundamental problem of the health service from day one as being this: that there is too much demand and not enough capacity, and that therefore the whole of the health service in some ways is defined around that problematic, which means an enormous amount of time and energy is spent gatekeeping and rationing basically.
And that sucks out a lot of time, a lot of energy, a lot of goodwill. It's one of the reasons people find the engagement with the system so unsatisfying. But what if we were to kind of somehow move away from that? What if we were to say, actually, maybe that's not quite right? Maybe if we could think of the health and care system as almost an open access system. And actually what we would say is the fundamental problem is not that there's too much demand and not enough capacity. If you empowered everybody and supported everybody, they would make a demand that we could fulfil, but the problem would be that because society's very unequal, those people with the greatest assets would get the most and those people with the fewer assets would get the least.
So actually, our problem is not gatekeeping and rationing. It's actually about how do we have a much more preventative, personalised, empowering health service but do it in a way that doesn't exacerbate inequalities.
One of the things I would say in response is the current system we've got with the gatekeeping, despite it being all about objectively assessing the need and so on and so on, leads to hideously unequal outcomes. That’s where our conversation started.
So, the fact that your mental ill health and your endometriosis pain and your dementia are not, at least formally, at least explicitly, assessed by how loud you shout, but how serious your need is, which is assessed by a serious medical expert, doesn't do away with the fact that the people shout louder get through and the people who don't, don't.
And so, the current system doesn't work in terms of equalising outcomes. And I know that this is something that, particularly primary care colleagues feel very invested in, but this is their role to ensure that scarce healthcare resources given to the people who need it the most. And I don't want to poopoo that. That's a very noble ambition.
And clearly, our health system is doing better on that than some other health systems. So, it's not like this has no effect, but I just don't think it has entirely the desired effect because the system makes itself so difficult to use that you have to actually be very empowered and very good at self-advocating to get through the dysfunctionality of the system.
Just to end on a very personal note, but many of you may know, my husband David had cancer and died of it. And so, I have over the years, spent lots of money on psychological help for the children. But at one point, my daughter was being helped by actual formal services. And they kicked it in when David still just about alive. And my daughter had, I don't know, four sessions. And so, then the person looking after her started a conversation with her about how she mustn’t become dependent on this and how we needed to bring this to an end, between David dying and his funeral.
And I do remember the red rage descending when this was relayed to me, but I just sort of felt like, where have we got this notion from about overdependence on services? And the hospice where David died, Trinity Hospice in Clapham, I remember when David died and I picked up the death certificate and I was given his stuff, they said to me, any time, any time you or your children need our help, you can reach us.
There is a forever offer to support you with this. And I used it maybe for a few counselling sessions, and my son has used it for one series of counselling. But between us, we've used maybe eight conversations with the hospice. So, an open-ended offer was made, no gatekeeping. And we've used it very sparingly.
Now, we are obviously privileged, and we can buy ourselves for when we need it. But I just found the approach to what is possible so profoundly different. And you can imagine what makes people, at a moment of very deep distress feel held and what doesn't. And I just think a different future is possible around this.
So, I think that's so powerful Charlotte. And it reminds me of a conversation I had a few weeks ago with the Bristol Dementia Service. Again, it's a well-run service, I think it's pretty well resourced. But having seen people go through dementia and the terrible kind of process whereby you wait until it's obvious there’s a problem, you get a diagnosis, you're kind of sent away while you see how long you can cope and then you get to the stage where you can't cope. Okay, you get a kind of new diagnosis, you get some care. You cope with that care at home. You then get finally to the stage where the person who's got the condition can't cope anymore. You go back into the system and then you get a kind of residential placement. Each time you go back, you start again.
The Bristol Dementia Service, once you've got the diagnosis, they say this service is here for life. It will go with you on the journey. You won't have to come in and out each time. So, people listening might think this is unbelievably unrealistic, but I think if we start to imagine services that hold people in the way that you describe. What we might find is that they empower people in terms of self-care, in ways that are profoundly different from the way in which services work at the moment.
Look, Charlotte, I could talk to you for hours and hours and in fact, I do talk to you for hours and hours and I will talk to you again for hours and hours very soon. But we have limits on Health on the Line. We look forward at the Confederation to continuing to work with you at National Voices. You are an incredible source of wisdom. Charlotte, thank you so much for spending time with us.
Thank you for this. Thanks, Matthew.