Jeremy Taylor: Six principles for engaging people and communities: putting them into practice

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Jeremy Taylor, Chief Executive of National Voices and Chair of People and Communities Board, discusses how the six principles for engaging with patients and communities feed into work on new models of care.

This presentation was filmed at our conference, How to involve and co-produce with patients and communities, on 1 November 2016.

Transcript

Good morning. Thank you very much for being here.  Thank you to The King’s Fund for enabling National Voices to be associated with this event, which is kind of, all about our day job.  So, actually coming first is not such a bad thing because I can give you a bit of an overview of the six principles, which is the kind of anchor point for this day.  I give you a few reflections on how it feels from the point of view of the people on the communities board, which I’ll tell you a bit about, in trying to turn those principles into lived practical reality on the ground, which is really what we’re all trying to do, I think.

First of all, just a brief note about National Voices. I think we will be known to many of you, may be not all of you, we are a national umbrella of charities.  We do two things as our day job.  One is to stand up for the voluntary sector and the very important role it plays across health and care and engaging people.  Secondly, we champion person centred care and everything to do with working in partnership with people and communities.   And as part of that, we are supporting, I think, all the people on the communities board, which is a working group and part of the governance arrangements for the five year forward view and our job, some of our members of it, are here today.  In fact, Christine, is a member of the board.  Our job is to champion chapter two of the five year forward view and the six principles and I’ll be saying more about all those things.

A reminder of what the five year forward view said. It is over two years old.  Some people joke it’s really only a three year forward view now but I think most of us would probably recognise that if it’s going to do its job, the main principles and approaches need to last for longer than five years.  It’s probably more like a ten year forward view, people can stick to it.

Some of the things that the five year forward view and are, the kind of, highlights of what it is trying to achieve. A radical upgrade in prevention and public health.  Addressing the huge variability and the quality of care and outcomes.  Doing something about the horrible financial hole and some very interesting quotes about what will happen to patients.  Patients will gain far greater control of their own care.  Decisive steps to break down the barriers in care, the silos.  I would be interested in people’s views about how far we have got with all that.  That is a reminder about the five year forward view and chapter two of the five year forward view is subtitled ‘a new relationship with patients and communities,’ and that’s where many of us, I think, come in because I imagine that most people in this room are trying to do something to make a reality of those fine words.   A new relationship with patients and communities and again that chapter has got some very interesting stuff about prevention, about person centred care, about working with carers, about working with the voluntary sector, about the power of volunteering and social action.  And it says some really quite powerful things.  Personalised care will only happen when services recognise that patients own life goals are what counts.  That’s quite radical.  That’s saying we need to reorient what counts as success against people’s goals, not necessarily the traditional measures that the NHS and public services more generally use, which are about activity and about cost and about certain outcomes.  But certainly, not routinely about people’s goals.

So, chapter two is radical and the people and communities board was created with a bunch of people from the voluntary sector but now also from the NHS, from local government, from some of the national arm’s length bodies and three experts by experience, as we call them, including Christine, to champion the vision in chapter two.

I think people often forget, what is the point of a new relationship? Is this all just about being nice to people?  Is it all the fluffy stuff?  And I think, there is nothing new about this, and I think there has been probably 20 or 30 years of rhetoric about needing to have patients at the heart of the NHS, about having a different relationship and by giving people power and control.  And I think it’s often landed as, a nice to have, which is not core business, or a must to do, because it is a compliance requirement and people do it not very wholeheartedly, but only because they have to.  A classic example would be the public involvement duty, if you are doing a major service reconfiguration, you have to do public consultation.  People hate doing it because they know that it’s going to be awful and so it’s fraught with negativity.  But the real reason for doing all this stuff is because there is a growing evidence base that it works.  And my guess is, for this audience, I don’t need to, kind of, labour the point.  But the point about having a different relationship when you use person and community focused approaches and work in partnership, as part of the health and care enterprise, you end up with better results.  Better health and wellbeing.  People having a better experience.  Decisions being better.  Better outcomes and although the evidence is still patchy on the money side, quite a lot of evidence to suggest that if you work in partnership with people, built around what they actually need and want, you are more likely to make the money go further.  And the realising the value programme, which may be familiar to some of you, is a big programme that was funded by NHS England to develop the evidence base and to try it out in actual life sites, so it’s evidence and practice that we can learn from, really important and it is coming to a culmination very shortly.  There’s loads of evidence out there.  So, when people say, I’d love to do more person centred care, I can see that it’s quite nice but where’s the evidence that it makes any difference.  There is actually lots of evidence.  Not enough.

The other reason, why I think, this stuff matters, is that even though there is an evidence base that it makes a difference, in practice we don’t do it well enough and I’ve just taken out some stats from various recent surveys that both the NHS and local government routinely use to ask people about their experiences. I am not going to go through this whole slide, I’ll just pick out a few things.  Although we know that care and support planning is a fundamental plank of helping people with long term conditions and disabilities, actually hardly anybody reports having a care plan.  Although we know, we have been banging on about shared decision making for quite a long time, very large minorities of people don’t feel fully involved as they want to be, in decisions about their care.  I find it quite interesting that despite the friends and family test, and a great deal of emphasis on the importance of patient feedback, we still find that when people are asked ‘were you asked to give your views?’ and it may just be that some of them forgot that they were, almost four in five said, ‘well no, nobody asked me what my views were’, which shows we’ve got a long way to go.

So, in terms of coordination, in terms of involvement, in terms of respect and dignity, there’s a long way to go. So, the big picture is, we know and it’s the argument of the five year forward view itself, that changing the relationship matters because it is one of the key methodologies for achieving the other goals in the five year forward view.  The money side, the care quality side, the prevention side, but also we are not actually doing it.  So, we need to get better and we need to up our game.

So, what the people and communities board did, was say ‘well we need to try and help local areas put chapter two into practice.’ And we started talking to some of the new care model vanguards quite early on and they said ‘we like chapter two, it’s got great words, we love it, it’s really nice but we don’t understand it and we don’t quite know what we’re supposed to do.’  So, we thought okay lets work together and try and develop a way of articulating the chapter two principles that start to make it feel more practical and implementable.  To cut a long story short, we came up with our six principles.  It’s not rocket science, it’s now new.   But it is a new way of articulating a whole landscape of things, that together, amounts to developing a new relationship, between statutory services and people and communities.  And one of the reasons for setting it out in this way, is that people often default to one mode.  They think that changing the relationship, engaging is all about shared decision making in clinical consultations, or it’s all about co-production and public consultations.  Or it is all about the voluntary sector.  Sometimes, people think actually it is all about health inequalities.  Sometimes people focus on volunteering.  The King’s fund for example has done some fantastic work on understanding the extent of volunteering in the NHS and how it could be built on and improved and expanded.

Some people focus, very much on the role of the voluntary sector, which is very important but only part of the picture. The point is, all this stuff is important, it is all mutually reinforcing if you get it right and it’s all part of the picture of changing the relationship with people and communities in order to deliver better results.  Not for the sake of doing it but because it has an impact.

So, that’s the six principles and each of them has lots of detail of evidence and practice behind them. So, one of the great things about the evidence base and the practice base around person centred care, around engagement, is that we now know quite a lot about what good looks like and how to do things.  So, it used to be that people would have airy fairy conversations about patient and public involvement or engagement.  Actually, there is a series of evidence backed methodologies that are being used in practice and deliver results, often quite patchily and here are some of them.  It is not an exhaustive list.

So, there’s stuff that people can do, stuff that people can learn, stuff that people can apply. That’s quite exciting.  So, sometimes, I can’t remember who came up with this quote, ‘the future is already here, it’s just not evenly distributed.’  I can’t take any credit for that but it is quite a good line.  All the stuff that people like National Voices and the people and communities board are banging on about, is already happening somewhere, often for quite small groups of people in small localities but is being done and it has got an evidence base and it works.  So, we can’t know what to do.  So, the what of the six principles, I think to some extent, is less of a closed book than it used to be and programmes like realising the value are going to help create more visibility and excitement around some of these methodologies.

I think we also know a lot about the who. And this is a shared enterprise.  We have all got a role to play.  How many of you are engagement leads in Trusts?  Yes, quite a few but obviously, a lot of other people as well, involved in this business too.  There are lots of people in the NHS, in local government, in the voluntary sector, who are absolutely champions of this approach.  And patient leaders, experts by experience, engagement leads, clinical champions, managerial champions.  There’s already quality improvement gurus.  There’s loads of people out there who are really trying to make a difference on the ground, which is really exciting.  The voluntary sector is a real, good part of this and actually, potentially, if we get the mechanisms right, everybody whether as an individual or as part of a community, has a role to play, potentially in generating, co-creating better health and better wellbeing, wherever they are.  So, we have got no shortage of what’s, we’ve got no shortage of who’s in my opinion, to drive this agenda forward.

I think the problems are with the how. We have got lots of hows.  We have got various national levers and incentives and laws and requirements.  Metrics, tariffs, public involvement duties and so on and so forth.  Lots of different national bodies with all slightly different roles.  We have got commissioning.  We have got funding, or the lack of it.  We have got regulation, whether there is too much or not enough, depends on your personal views, I think to some extent.  We’ve got the new care model vanguards that that was the first wave of the five year forward view, trying out in 50 sites.  New models of more personalised, more coordinated, joined up care.  But also, other test beds of innovation like the integrated care pioneer programme, the NHS innovation accelerator programme, there’s lots of innovation going on.  We have got the contractual forms that have been developed by some of the new care vanguards, which are now, people are being invited to adopt these, whether or not they are vanguards.  The MCP and PACs, it is an acronym strewn territory as I think you all know.  And so, these contractual forms for having joined up services, they’re being spread and we’ve got the SDPs.  I think unless you have been to Mars in the last couple of years, you probably can’t have avoided hearing about SDPs and footprints and sustainability and transformation plans and got yourself into a debate about whether sustainability and transformation plans are actually about sustainability, actually about transformation or whether they are really plans.  Or whether anybody has been involved in creating them.  So, we can have that debate another time.

The GP contract, changes to that. The GP forward view.  There are lots of forward views attached to the five year forward view.  There’s the mental health bits, the cancer bits, the maternity bits, there’s loads of stuff going on.  Integrative personalised commissioning, the development of integrated health and social care personal budgets, a really exciting programme.  Really empowering for many people.  All the different aspects, kind of, group specific around the five year forward view.  The whole agenda around clinical training, around re-validation.  Oh, my God.   There’s an awful lot of howls going on.  Hands up if you think there is a coherent framework that connects national and local, for driving the chapter two agenda of the five year forward view.  Ah.  I suspected that you would agree with me on that.  This is the real problem, I think, we don’t have, what you might call, a delivery plan for making this happen.  And there are lots of delivery plans, some of them are getting in each- others way and some of the key aspects of health and social care right now, particularly the huge pressure, and the lack of funding, particularly with social care, actually getting in the way.  So, we have got some real issues about how we are going to implement this in practice.

As it happens, we are currently working with people on the communities board, has been given a commission by Simon Stevens at NHS England to say can we up the ante on this, can we come up with some high impact actions, as he called them, to really drive this agenda forward and make a difference. What are the next big pushes that need to be made, particularly by the national arm’s length bodies but actually not necessarily exclusively them, because we all know that national bodies pulling levers does not necessarily achieve the results you want, either because the lever isn’t attached to anything or because it is and it has horrible unintended consequences that make matters, in some respects, worse, as well as better.  So, we have got an interesting intellectual and practical exercise for coming up with high impact actions that would drive this and actually, I would welcome your input and views on this.  And please feel free to get in touch with anybody from the people and communities board, myself at National Voices, anybody at National Voices to feed in your views.

We have a sense of what the territory of high impact actions might look like already. It was something about a shared vision and narrative.  It is partly in chapter two, but not entirely and when leaders, Jeremy Hunt, Simon Stevens, Jim Mackie, stand up and talk about health and social care reform, often the changing the relationship with patients and people and communities is not the top line, it’s something else.

So, for us there is something about, is the narrative right and is it sufficiently a priority for the national leaders. For discussion, I think.  Do we have, or should we try and create a coherent framework of national levers and incentives and metrics and accountabilities.  Are we driving all this in a consistent way, so that all of the six, or possibly seven arm’s length bodies depending how you define them and the department of health are sending consistent signals to the health and social care system.  Are we measuring the right things and holding people to account for them.  It is sometimes said, that Trust chief executives are very sharply held to account for losing control of the money, or losing control of the targets, or having a major scandal of one kind or another.  Being an out liar on mortality.  But it would be rare, in fact I don’t know of an example of somebody losing their job, because they weren’t being engaging enough, because they weren’t doing shared decision making enough.  Because they hadn’t got a partnership relationship of co-production with their local communities.  Would we want them to lose their jobs over that?  That’s an interesting question.  What about the unintended consequences?

And, we don’t, it seems to me, have a coherent framework but there is an opportunity to try and develop one. There’s something about whether national bodies can actually really support local areas, so there’s lots of talk about support to local areas, the SDPs the vanguards, the CCGs.  How supportive is that support offer?  Are we making best use of the four thousand or so people, who work in the area offices of NHS England and the other arm’s length bodies? How helpful and supportive are they being?  What would the support look like, that would enable people to knit together all the different things that are coming from on high into something coherent and genuinely engaging?

You think about all the major changes that have happened in health. They have often been spurred by a very strong sense, sometimes a moral outrage, or a very strong sense of shared purpose.  Think about the closure of the old mental asylums, community care.  Think about the de-stigmatisation of mental illness.  Some of the big things that have happened, have been about opinion and culture and a sense of moral purpose.  How do we develop a real sense of moral purpose around this?  Yes, it is really important to ensure that people can survive a cancer diagnosis as well in the UK, as they can in some other western countries.  And there is a sense of moral outrage around the extent to which it sometimes feels as though we are not as good on cancer as we are in other countries.  Should we not have a similar sense of moral purpose around why aren’t we as good as the best at ensuring that people are partners in their care, rather than being done to.  A road map for change.  We don’t have a road map.  We don’t have a delivery mechanism.  Can we develop one?  Do you have thoughts on what that would look like?

We have got lots of champions for change already. As I said earlier, that’s what gives me hope.  How can we ensure that the champions for change, can actually really make change because I think that the elephant trap in this area is to become obsessed with national levers and what Jim Mackie and Simon Stevens can do.  Where as we know, from many other areas of our lives, professional and personal, that real change is often something that is bottom up and is just done by people getting on and making a change where they can.  Small steps.  And actually, there’s something quite engaging about small steps and sometimes something quite disempowering and disengaging about the idea of major system transformation.  It might be what we need but people kind of shy away from it.  It sounds scary and alienating and top down.

We need partnership working. And there is something and it relates to the idea of social and moral purpose.  How do we create a social movement out of the six principles?  How do we recognise there is already a social movement?  But there may be a number of different social movements with common elements around empowerment.  Can we do something to join those social movements together and make it a big social movement?  Can we adapt to NHS Fab Change Day into something that is also about people pledging to work in partnership?  I think there are loads of potential ideas out there that are worth grasping.  So, those are some thoughts.

What would an overall framework look like? Here’s some thinking that is emerging from the realising the value programme.  The bit that National Voices have been involved in.  A framework that might be thinking about everything to do, particularly with people with long term conditions and disabilities, about starting with care and support planning as a kind of foundation. We need to work out what it is that people want and need.  Then we need a system for brokering access for those people to whatever the things are that they need.  Some of that might be formal medical care, some of it might be wider social support.  That’s where social prescribing comes in.  So, what would a framework look like that could also address the big issues around health inequalities and a social gradient on health and what sort of role of skilled commissioning in all this.  That’s one idea of a framework on which you could pin lots of things.

And so, the six principles have got huge potential. We have all got a part to play in helping make them a reality and thank you for listening.

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