I: Interviewer (Lillie Wenzel)
MD: Mark Doughty
SB: Samira Ben Omar
DW: Dan Wellings
NT: Neil Tester
I: Hello everybody, and a really warm welcome to this online session here at The King's Fund. Today we're going to be talking about public and patient engagement. We're going to be talking about where the NHS is now in terms of engagement, talking through some examples of where it's working really well, but also thinking about some of the challenges around engagement and then we'd also like to look forward and think about what we'd like the NHS to do in terms of patient and public engagement in the future. I'm Lillie Wenzel, I'm a policy fellow here at the King's Fund and I'm delighted to be joined for our conversation today by Mark and Samira and Dan and Neil, and I'm going to ask each of them to briefly introduce themselves now. Mark.
MD: Yes, hi, I'm Mark Doughty, I work in leadership and organisational development here at The King's Fund. I'm also the Director of the Centre for Patient Leadership.
SB: And my name is Samira Ben Omar, I'm Head of System Change, working on the integrated care systems in north-west London and that's the north-west London Collaboration of CCGs, which is eight CCGS in north-west London.
DW: I'm Dan Wellings, a senior fellow here at The King's Fund with a special interest in this area.
NT: And I'm Neil Tester, I'm Deputy Director at Healthwatch. Healthwatch is the independent champion for people who use health and social care services. There are 152 local Healthwatch right across England and our job collectively is to make sure that people have an influential voice in shaping health and social care and also generating a culture where it feels okay to speak up and it feels useful to decision makers and to clinicians to really listen to what people are telling them.
I: Well thank you to the panel and thank you to all of you for joining us, our online audience. It's great to have so many people joined up, signed up, I know that we have people from a really wide range of backgrounds as well as members of the public, we have people from NHS organisations, from local authorities, from voluntary sector organisations and many others. It's great to have all of you and I think we're in for a really interesting discussion. I just wanted to say a few words on how the session will run. So we have about an hour and I'm going to start by putting my own questions to the panel, just to help set the scene and to get the conversation going, but I'd like to use the majority of the time to ask your questions so please do send them through. You should be able to see at the bottom of your screens a box where you can type your questions at any time during the session and they will come through to me on a screen in front of me, so if you see me looking down then that's why, and I will do my best to pass as many of them on as I can to Mark and Samira and Dan and Neil. So, I think that's everything and we can get started. Mark, I wanted to start with you, I wonder if you could just help us set the scene a bit for the discussion today and tell us why it's so important that we talk about these issues.
MD: Yes, I'll set the scene from the perspective that I bring to this conversation with my colleagues, which is I'm going to be bringing particularly the perspective of the patient and the service user to this conversation. I live with a number of long term conditions and this has influenced my relationship with the health care system over a number of years and I think the one thing I take from that experience in my work with patient service users and healthcare professionals is that patient engagement and involvement is absolutely key, it's critical, essential to the delivery of good quality care and supporting the wellbeing of our communities. We know it's central because it's there in the constitution, it's there in the NHS values, it talks about putting patients at the centre of everything we do. It’s there because it talks about organisations needing to be accountable to patients and communities and the public, and it's there because it tells us in the constitution that it's about collaborating and working in partnership with others. It's also there in the 2012 Health and Care Act, which makes it a strategy duty for organisations in the NHS to work with patients, the public and it's there in the Five Year Forward View which actually had a whole chapter talking about new relationships with patients and communities and, it's one thing to have it there in writing, it's another thing to translate it into practice and that's the challenge. There's a … and that's what I'm really looking forward to having a conversation with my colleagues about, how can we really support that going forward?
I: Thank you and so Samira, obviously the … what's happening in practice is the difficult bit, but I wondered if you could say a bit about what you think needs to happen in practice?
SB: So if I … in a similar way as Mark, if I actually set the context within which my work took place. Now if you look at the title ‘Head of System Change’, it doesn't say much. The reason we looked at system change was very much about what Mark mentioned around creating a new relationship or establishing a new relationship with our communities and our front-line staff and the wider system. Now my perspective and our organisation's perspective is very much around integrated care system is about population health. So if it's about population health, it's not only what happens within NHS or social care organisation, it's what happens in the community. Very much if you look at what the Health Foundation report told us about what makes us healthy, 10% of what impacts on our health happens in a healthcare setting. 90% happens outside. Now for us to actually work on that and work on that and to make sense of that and implement that requires a shift in how we think. It's about our communities are shifting how we think about how we relate to our patients and a shift in how we create a shared narrative that will enable us to create a transformation for integrated care system. So in talking about public and patient engagement, what we're keen to do is actually to have a different conversation and create space that nurtures a different narrative that connects individuals to their own health and wellbeing stories, connects communities together around a shared narrative but also connects communities to us as a system.
I: Thank you, and so Samira talked a bit about the shift that we need to see, Dan I wonder if you could say a bit about, from your work, where you think the NHS is on engagement now.
DW: I think, as with lots of things, it's a very mixed picture. So I think we've been looking across different areas and we're working with Samira and others to look at what the extent to which this is actually happening and, as you might expect, there's areas where there's really good practice, where you feel that the voice of patients and users is really being heard, being listened to and that patients and users are becoming much more part of designing services and setting up health which is beyond just a service - what can we do as communities? But there are lots of areas where it still feels in this area it can be tokenistic. It can be that in lots of areas we're … there's lots and lots of information being collected but there's a question mark over the extent to which it's being listened to, and I think that's a real challenge for the NHS. There's huge numbers of initiatives both locally, nationally, in different organisations, but what do we do with all that? I think that's where there is a significant question mark.
I: And Neil, so Dan gave a really good sense of the variation that we see out there, some areas doing well and maybe others a bit further behind, what do you see as the role of the national bodies in encouraging engagement in the NHS?
NT: So I think it's really important, I mean particularly now when some really long-term decisions are about to be made, that we build this in at the front end of decisions not in the classic case of a rushed consultation at the end of change programmes and also that we see this at something that just becomes part and parcel of planning and implementing and reviewing services. So a lot of the things that my colleagues have said really resonate with the thinking we've been doing at Healthwatch about what arguments should we be making as NHS England and NHS Improvement put together the long-term plan for the NHS, and I think one of the key opportunities for us is for this to be seen as a systematic process. Not a set of individual initiatives that have to be done to tick a box, but something that there is a shared interest between individuals and communities and services and systems that it's in everyone's interest to get this right and make this part of how we do things in health and care in England.
I: Thank you. So I think all of you have touched on a bit around the processes and the how, we've had a question in from Emily Reid who's in Harrogate and District NHS Foundation Trust, and she asks the difficult question around, how do we reach out to patients and members of the public who are typically difficult to engage with, it takes time which NHS staff don't always have? Mark, I wondered if you had any thoughts on that.
MD: I think the first thing I would want to reflect on is why is it difficult to engage with them? So it's not a challenge … is it Emily? It's not a challenge to Emily as in … it's a question to support her thinking to maybe reflect on why is it difficult for you to work with these particular groups of people and to identify why that's the case and it's ... for me if we reframe it about building relationships, if we look at it about if I want to involve and bring in different groups of people that we don’t normally work with, we might need to go outside what we are normally used to in order to engage with them. So we might need to find people who have close connections to those communities who are a conduit, a bridge, community leaders, people like that who we can go to in order to have the conversations in order to find ways in which we can work with them.
I: And Samira, I wondered if you had any thoughts.
SB: So that question comes up time and again and I can understand the rationale behind it, but I also want to challenge back and say that actually where we as organisations are very difficult to engage with rather than actually our communities who are very difficult to engage with. In systems where people where you see engagement that is reflective of the diversity of our population and the needs of our population our systems are closer to the communities rather than the other way round where we ask our communities to become closer to us. So I think we need to almost flip the coin and say to what extent … if we begin to ask ourselves to what extent are we closer to our communities rather than to what extent our communities are closer to us. It's interesting because if you look at the makeup of our different committees, our PPE committees, our patient groups, our PPEGs, our lay partners, they are very much … those that are in those groups very much actually speak our language as organisations, they are as close as you can get to our systems. So it does make us then wonder to what extent are we recruiting in our image rather than in the image of our communities and I think it's just something to be mindful of and to begin to question. I don't have the answer, what I have is just more…what questions we need to ask to get us to the answer.
I: Okay, and Neil you were nodding there, do you have the answer?
NT: I don’t have the answer but I have a clue perhaps. So I think part of the answer actually is in the question. I think the more people start to ask the question, why are we struggling with this, that's where creative ideas –
NT: - will come from. Really agree with what Samira was saying, but just one example of how it's possible to do this in a way that doesn't mean you have to come up with something that literally nobody has ever thought of before is currently online, I think you'll be able to find this on the NHS website, there's a great little video which Healthwatch Oxfordshire were part of putting together about the Luther Street Practice in Oxford who have completely turned around the way they do all of the same formal public and patient involvement processes that other practices do, but do it in a way that means that they are driven by and continually involve homeless people in all those processes. It took them a bit of time to do it, but it didn't take a whole load of resource or brain power that other people haven't got. So one of the ways we can make this easier for people is to make information sharing and knowledge transfer easier across the system anyway and that's the challenge for every single subject in health and care but it is part of the key for this one I think.
I: Thank you and I think we've had a really good question here which actually gets us all to take a step back and think about what actually is patient and public engagement and this comes from a student from Derby Grammar School. What is patient and public engagement in terms of GP practice? What does it actually mean and what are the challenges with it? Dan, I wonder if you could start us off on that one.
DW: Yes, that is a good question (laughter). I mean there's lots of discussion often about terminology and there's the word engagement, we have the word involvement, then there's lots of other techniques for understanding users. I think the example … I'll try and answer the question by giving an example where they're doing it and then work backwards. So we're doing some work with Wigan local authority and what's really interesting there is that for everyone, so this is a big part of this and I think this is a discussion we can have, like whose business is this, everyone that works at Wigan Council as part of their induction training has a part of it which is called the deal training, which is about how do you go and have that conversation with communities and users? They do the training and then they go out and have those conversations and for some people it's more comfortable than others, but what we learnt up there was that for everyone there's a benefit. So for me, it's hard to understand how you run a service without understanding, listening and involving users of that service. So whether we use engagement or involvement or participation or many of these terms, and they all have good meanings, for me it's about you have to understand users, that's it, and that's at the heart of it and that's where I think many parts of the NHS are some way away from that partly because of some of the comments that Samira and Mark have made about routes through, that sometimes we … just on that point, the NHS and the social care system can make it hard to engage because it's not thinking about what's the best way. Again, so for example, The King's Fund has things like the GSK impact awards where we work with lots of small charities, they already have routes into some of the populations which are traditionally known as hard to reach. So it's about working with partners in the local area but at the heart of it it's about how can you not under … so almost to give an example, Michelle Dixon, who works for Imperial Hospital, spoke about the fact that they've got a unit there called the Ambulatory Emergency Care Unit and that's an example she gives of that's where they just haven't engaged with patients because that's not the name you'd come up for it if you'd worked with your users.
I: Great, thank you, and so we've had a few questions around how to engage the public with some of the changes that we're seeing in the NHS, so a question about … from Helen Bell in South East Clinical Senate, how can we support people to understand the changes that are happening within STPs and ICSs and Dan I'll come to you again because I know that draws on some of your work, but I wonder if you could start by just telling us all what STPs and ICSs are.
DW: So STPs are called Sustainability and Transformation Plans, so there are 44 areas in England and some of those are moving on to what's called ICSs which is Integrated Care Systems. So I think even the terminology shows you that we're probably not great at explaining this, but at its heart is a relatively straightforward concept which is actually within an area we all will receive care at various points in our lives through GPs, through hospitals, through community services, through social care but at the moment those organisations aren't working necessarily together. It's really interesting when you speak to patients often, it's not about individual satisfaction with services, so we could often measure whether the experience with GPs was good, bad, indifferent, same with hospitals, when you speak to patients often what some of the challenges are, are between those services and actually the idea of something like an ICS, an integrated care system, is if you put the patient at the heart of that system and then work backwards you'd end up with a better system. I think that's where Samira is getting, which is are we asking the right questions sometimes? So the more we ask people about their experience with individual services we're not really understanding their lives, their lives beyond the interaction with individual services. Samira mentioned population health, so again that word sometimes means some people say public health and there's lots of discussion on the terminology, but it's about there are lots of things that determine our health and if we're really going to improve health outcomes we need to start understanding those. So I think just to come back to the question, that's a really good example where perhaps the NHS could have done more work with users to think about what that terminology means.
I: Great, thank you and Samira did you want to add?
SB: Yes, so I think how do we engage people in the STP or ICS agenda? Do we really want to engage people in the STP and the ICS agenda? How meaningful is that as an agenda? As somebody who lives with a long-term condition in a particular area, what does it mean to me? What does it matter to me that actually kind of we're trying to engage people around an idea and a strategy? Integrated care happens at community level. People are making sense of the way we try to commission and deliver services. They're already integrated in their communities, in their networks. They actually work together, they make sense of housing and health and social care. So they're already doing it at grass roots level, it's just how we can learn from the way they make sense of integration at grass roots level and almost equally at front-line staff level. Front-line staff understand integrated care, understand the frustration of integrated care, it's just to what extent we're giving them permission and a sense of agency to act on what they see is the challenge in their system. So I think it's really important to frame it the other way round. I mean we have, just to give an example, a local example in north-west London, we have the community champions programme and it is what you might call an asset-based model that actually really looks at working in collaboration with communities. So it's communities who define what needs to happen and in all the eight years that's established at no time have local communities come up and said, ‘We want something that's different from what our public health data says.’ So I think communities no one understands what a good integrated care system is and they do it day in day out. So I think we need to flip the question around what we think we should engage people around the STP or ICS. I want to engage them because I'm in the system and it's meaningful to me, but I wonder to what extent it's meaningful to communities and front-line staff.
I: Okay. That's really interesting and that's the way in which we engage patients in some of these changes has actually come up a few times and, Neil, there's a specific question around what is the role that we'd like to see local Healthwatches in integrated care systems in the future? And that comes from Matthew Parish who's in the Healthwatch in Surrey.
NT: Hi Matthew, there is a really important role for Healthwatch in these broader geographical discussions because one of the really valuable things that Healthwatch are able to do is to look at things through the eyes of people. So there's no distinction in the Healthwatch world between health and social care and there isn't in real people's lives either, there are just all of the different services and the support that you need. They are also really interconnected with the wider voluntary and community sector in the localities. I think one of the real challenges that some of the early conversations about these broader plans have had have been the difficult relationship sometimes between the NHS and local authorities and perhaps sometimes the NHS not being as good as it could be at recognising the strengths around community development type approaches in local government and that strong sense of the importance of democratic accountability in local government. So there's a beautiful example actually in Healthwatch Surrey's neck of the woods that they have been involved in. The Surrey Heartlands Partnership has got all of those people around the table, there's a formal role for local government there, they've worked very actively with their Healthwatch to bring real people into each of the work streams, developing and implementing their combined set of changes, but they've also through that joint thinking realised that they needed to completely transform the way they have an ongoing conversation with their wider public and making sure they are getting to people in every single postcode area across that patch. I know that's now starting to make them think differently about the way they engage their staff across all those organisations as well. So Healthwatch can be a real catalyst in helping people think differently. The other really important role for local Healthwatch and something we're going to be supporting Healthwatch across the country to do as the long-term plan is developed and then as local versions of it are developed through into next year, is to make sure that people developing and delivering the plans are able to make use of what people have already been saying. So we've taken tens of thousands of people's experiences of primary care into that work stream for the plan, tens of thousands of people's experiences of mental health into that work stream and the same for a lot of other things. I think starting from where people are in the way that Samira was describing and then showing how your plans are picking up on that thinking and those experiences, and then continuing to involve people through the rest of the journey is something that for me is part of the prize for the next ten years of the plan and something that we're very ambitious for our network to do its bit to make happen because it's our biggest opportunity to start to change the culture around this engagement and involvement agenda.
I: Yes, and you talked there about an ongoing conversation and you talked about the importance of listening to patients and public and making use of that. Mark, we've had a question on how do you develop a meaningful feedback loop for patient groups from Eliza Hinchcliffe in South London & Maudsley NHS Foundation Trust, and I wondered if you had any thoughts about that ongoing conversation and how we demonstrate to patients that we are listening.
MD: Yes, I'm just very conscious sitting here and being part of this conversation, of basing that conversation in what does it mean … what does it … one of the things that I'm really conscious of is the clarity around what do we actually mean by engagement and involvement? So I'm going to bring that back because that's really important for me, what do we mean by engagement and involvement? I think that's a conversation that we all need to have to be really clear and for something … to me it's a reframing process. It is about the relationship, it's critically about the relationship and it's about supporting people to think differently and see differently what it might mean to work with and be involved with and partner with and collaborate with their patients, their service users, their communities. Therefore, in order to get a feedback loop, which is I'm assuming what … is it Eliza? What she's meaning is we want information coming back to us about what we are doing in order to know that we're on the right path. I … the first thing I would do is again I know it sounds like a broken record, but I would (a) be really clear about what it is we are trying to do; (b) work in partnership and collaboration with the people that you are engaging with to understand what it is they really want and come up together with a solution of how you can learn and identify what works and doesn’t work. So the feedback loop is developed in consultation and co-produced, developed with the people that are you are working with.
I: And picking up on I think one of the points that we touched on earlier, there is a question, isn't there, about how do we engage with a wide range of people? We've had a question from Rachel Brown who says PPI groups tend to be largely retired individuals from more affluent backgrounds, do we have any tips … do any of the panel have any tips, perhaps starting with you Mark, on how we can collect more diverse views?
MD: Firstly, the people who are involved in working, developing the engagement, the involvement with their communities, needs to … this goes back to what we were saying again, you need to think differently, you need to think about where you might go in order to find people who are really interested and involved and Samira mentioned something really critical at the beginning, we have been doing it for years. It's out there in the communities, making things work to support our health and wellbeing because for many, many years it hasn't been joined up. It hasn’t been integrated. There have been fantastic services, there have been small pockets of joined up supported integrated services, but when they're not there the communities have to come together to make it work. Therefore, reflect on that, reflect on where you might need to go in order to find it operating in your communities. Local support groups, charities, health and care third sector organisations, they will all be operating in your areas and they'll be the areas that … they'll be the organisations and the groups who will tell you where to look and where to go. I think sometimes the danger is because we're so used to, in the NHS, doing things in a particular way it can create blind spots to what's right in front of us at times.
I: Dan, do you have some other thoughts?
DW: Yes, I mean I agree, though I think the only thing I'd say about that question about the PPI, is there's just a danger sometimes dismissing the people that do want to give their time. So I think it's a good challenge but we often talk about who do you represent, who do … and it's a really thorny issue. So is a patient leader representing other people? Are they there representing themselves? Are they representing the community at large? These are really difficult questions which are good to go through, but what I would say with PPI is not to dismiss people that are willing to give their time and effort but, that being said, there's a decent challenge there to say, and I think this is what the Healthwatch are working on, is Healthwatch is representing a community, an area, how are they collecting some of that feedback which … so we went to … just to give you an example, there was someone … we were working with West Yorkshire in terms of some patient engagement they're doing, and they had a patient at one of the meetings we went to and this patient had gone away and worked with a number of users within the area and come back with that feedback into the meeting and they were from the background that perhaps is being referred to there, but they had taken the effort to go and find out views from a range of people. So, I think it's about not dismissing, but also looking at some of the challenges that you can do about how do you get to a wider audience?
SB: I just … so it's an interesting question around how we engage with people from particular communities or from diverse communities and those that reflect the diversity of our population. I just want to give the example, so when we had the tragic events of Grenfell, it was really interesting right at the beginning to what extent actually the diverse community came together to support each other and to support us to support the wider community and there was absolutely no sense in terms of lack of engagement or lack of wanting because we had a shared agenda. There was a shared urgency of wanting to actually ... and a real clarity in terms of wanting to support people who were desperate, who needed help and support there and then, and it's really interesting as that emerged the community in north Kensington, in the area where the tragedy … the Grenfell tragedy happened, that continued. So communities have found their voices and they actually want to use their voices to actually kind of challenge but also to provide services. So I think it's a really interesting dynamic that we're seeing there because they have actually come together, they are dictating as a community what needs to happen at grassroots level. We as organisations are on the outside. So we have to wait to be invited to be part of that conversation and it's a very interesting dynamic to actually see and to experience and it makes me think in terms of how we engage our communities and to what extent we engage our communities. We engage them around our agenda and regardless of how much we do around engagements of our communities, it's always about a service or an activity, what do you think of this service or how we can improve this service. That's not going to help us deliver the transformation that we need for the integrated care agenda. That's going to help us so far in tinkering with the current system. If we're going really create integrated health and care system, we need a paradigm shift in how we commission and deliver services. That requires a completely new conversation and relationship with our communities that's based on their needs. So I think the whole idea of whether it's engaging with a hard to reach group or sometimes what we call ‘easy to ignore’ rather than hard to reach, we really need to rethink our engagement not only in terms of how we engage them but the type of conversation we have with our communities.
MD: You just identified something there really important which is language, which I don't know if we're going to come on to, but … and I'm really glad you reframed it away from hard to reach –
MD: - because that's defined in my experience by people within organisations defining how they perceive patients, public communities to be when, as you’ve said very … when you said earlier on, they've been knocking at the door often -
MD: - trying to be engaged and involved. One final thing, Dan, I think you're spot on, I think it's so easy if we're not careful to say that this particular group, because they've always showed up, potentially because of the office and opportunities that have been put on the table they're the ones who have been showing up in terms of wanting to support engagement within the system, it's very easy to then create another us and them and say, ‘Actually we don't want you, we want somebody else.’ It's about both and it's about how do we collaborate and partner and how do work with the challenge of working with everybody?
DW: Yes, I think for me there's a real question. I mean we haven't talked about methods but that's a really important thing which is just to pick up on Samira's point. I get that point about how you do it differently, but also there's an equity argument as well and inequality argument. So we have something like the GP patient survey which is traditionally seen as a patient experience survey, and the really interesting thing for me is not seen in the patient engagement field and we might come onto this because I think we make false distinctions between patient experience, between patient engagement. Often patient experience will sit within often a nursing directorate within a Trust, the patient engagement will often sit within a comms function and actually you think, well, have you spoken to each other, is the first question. So if anything came out of this would be how do you speak to each other because it's all about learning. On the GP patient survey, there's a 30% variation between access, between experience of access across CCGs. So for me it's not just qualitative of quantitative or individual conversations, it's about using an appropriate range of methods and one of the things with surveys is really interesting, you often show the results and people say, oh they don’t tell you why, and you're like, ‘No, they don’t tell you why,’ that's the next step for you to go away and find out well, which groups are saying that? Which are groups are saying that more and which groups are saying that less? That's when you move into more of the conversations and the qualitative work that would help you unpick why is this happening? Why is it happening more to this group than another? So I think there's an inequalities agenda here as well. If you look at many of those surveys they're picking up quite significant inequalities.
NT: Can I just add Lillie?
NT: So I think there's something really … there's a powerful thread that's run through what everybody has said just thinking back to that original question about people who are prepared to be on those formal patient public involvement groups. So just as Dan was saying actually don't worry too much about any one individual method, I've got all of the information you're getting from all of the methods you use, so I think the heart of how do we engage more people in the idea of being involved and playing an active role in the system isn't so much about any one committee or formal group, it's about across the board how can we make sure that all of the population are linked in to these discussions and decisions? So for me a lot of that comes back to looking at what motivates people to give up their time and in this arena it's generally because they have had some motivation, maybe something has happened to them or to their family or to people in their community that they want to help make sure the learning is taken from and things are improved. So there's that sort of fairly concrete motivation. Or in the kind of situation that Samira is describing around Grenfell, people who feel really strongly that their communities have historically not been listened to and feel that they can be part of changing that. You have to work with those motivations and instead of saying, ‘Who would like to play this defined role in this defined structure?’ say, ‘Here are a whole range of ways that you can help make a difference, talk to us about which of those would work for you.’ And there's learning to be had there from the wider volunteering sector about what motivates people to be volunteers and what helps them to be effective as volunteers and there's a lot of thinking going on across the NHS at the moment about bringing new complementary volunteering roles into the NHS. So we need to join up, just as Dan was saying, join up the nursing directorate and the comms directorate around this, we need to be thinking about human resources and support for volunteering and making sure that helping services to learn and change and improve is just as valuable a volunteering activity as the really important stuff around ward level, support for feeding or whatever it might be.
SB: So I've got two challenges in a way, one of the challenges is around the lay partner or the … I absolutely agree, I think we have to honour and value the contribution that these people are willing to give, they give up their time, their energy, their capacity, their expertise to help us, but they also become part of the system. They are the system, they speak our language, they reflect in our image and therefore to what extent … I've had many conversations with our lay partners where they have a phenomenal amount of understanding about what ICS and STP is, that you become the system. So how do we become mindful that they don't become our biggest almost spokespeople rather than actually have an independent lay perspective? The second is around the patient's experience and whether it's the GP patient's experience or the other surveys, is how representative are they of the diversity of the population? So if we are going to use them as a starting point for prodding or thinking what next, is to what extent those surveys are reflective? I mean my experience … I … when I worked as Assistant Director of Patients' Experience in north-west London was the issue of the lack of data around experience whether it's through complaints or though the patients' experiences from BME communities for people with learning disabilities from the wider communities. So to what extent we need to look at if surveys are not the right methodology or right approach, it's how we complement that with another type of approach.
DW: I think that's a really good point which is that's absolutely true and they don’t represent so cancer patient experience survey, BME communities are underrepresented and then it's about looking, well, what do we do? So it's not thinking that one method … and this is where the frustration comes I think particularly with qualitative data which is often … in the past I've presented qualitative data and the first question that gets asked is, ‘Well how many people did you go to?’ And if it's 20 or 30, it's, ‘Well that's not representative, that's not the right’ … but actually sometimes one or two patient stories tell you everything you need to know about something and that's one of my frustrations in this area is that we're too quick to say, ‘Well what's wrong with the data collections?’ So one of the people we spoke to for the work we've done recently said that the NHS reacts in two ways. One is it says, ‘We knew that already,’ and the other one is it's wrong and that for me is the biggest frustration, which is there are all these different sources, there's work to do, there's particularly work to do around what colleagues here have said around people we're not hearing from, but we do collect a huge amount of information and I think we're too quick to dismiss that, that's the wrong method, that doesn't give us this, that doesn't … actually, no other organisation would think we just do one method and that will tell us everything. Particularly on things like we haven't talked about public engagement where it can get a bad name, is that it's often only done as set piece events. So we're going to change something, there will be a reconfiguration of services potentially and then there's a challenge. Now, the problem for that we haven't talked about staff and how they receive that, is that if patient engagement is often seen as reconfiguration, that becomes quite a challenging conversation sometimes and both sides become quite binary or quite fixed in positions and that's where I think some of this has got a bad name, that's it often been around change. And certainly, I've heard from quite senior NHS people that it can feel that they're almost afraid to go out to speak to people.
I: Yes, and on that point, so a few of you have touched there on methods, and I really take the point that maybe we shouldn't get too bound up in methods, but we have had a question and I think perhaps Mark you might share your thoughts from … on a question from Rosa Parker from The Community Southwark Partnership, who says, can you explore some of the methods and paths to engagement that are different from the PPG environment? Do you have any thoughts on that?
MD: Say that again.
I: Thinking about some methods and paths to engagement that are different from the PPG environment. If we do want to have a broader range of approaches what might they be?
MD: I think I'm very struck by some work I've been doing recently with a patient experience manager called Kate Hammond down in the Velindre Cancer Centre down in South Wales, where she … for me she models exactly how we can bring these different methods into being. The very … what she does is the question she asks herself continually is in everything I do as a patient experience manager, how I am ensuring that patients, service users, their carers are at the centre of everything I'm doing? What can I do in order to have conversations and build relationships that enable them to partner and support me in delivering a service that absolutely makes a difference? So she continually tries to find ways every day in every way, she tries to find ways in which she can involve patients and service users in her work. The thing that really helps is because she has been able to get with the chair of her patient group and the leader of the volunteers onto the board where they can have conversations at board level about how engagement works and how they should develop engagement within their organisation. So it's about … it's not just about methods, it's not just about focus groups or … although as Dan says, these methods are all really important. Where it starts is - what is the purpose? What are we trying to do with our patient involvement? Where are we trying to get to? What's our clear picture of the difference we want to make? And that clear picture of the difference we want to make absolutely needs to have an emotional as well as a heart component and then, once you start developing those relationships and conversations and you ask patients and service users continuously about how can we build and develop services that work for you, how can you be involved, methods will develop, will emerge from that conversation.
DW: Yes, just to build on what Mark said there, that exactly heart and how you have that emotion, but there's also … let's be pragmatic, there's an efficiency question as well. So recently there's a patient that we spoke to, so been in receipt of eleven different services over the course of a week. So was in receipt of all of those services at home, was having to wait for visits, didn't really understand what each of those different services was doing and in fact they weren't necessarily talking to each other. So that's a method where you're just trying to really learn through someone what the course of their week is like and then what that means. The reality was this person wasn't going out, so their mental health was becoming impaired as a result of this. So that's the point where you start with the story and say, ‘Well that just isn't working,’ and actually a different way of approaching that. I think one of the interesting things about this area is that it's not … it can feel risky to some people I think in the NHS and that's really important to acknowledge. So we again, in our work in Wigan, they talked about the fact that depending on what you hear … there's a question about what you hear, can you act upon it as a member of staff? And I think in north-west London there was a really interesting story recently which was about a staff member that actually felt they had to listen to what was coming from up rather than from what the patient said. So the story was that this patient had a pain in their side and they went for an MRI scan I think it was –
DW: - and the form said that the pain … they had to do the scan down here and the patient said, ‘Well the pain isn't there it's here,’ and the person doing the scan said, ‘Well yes, but the form says I've got to do it here.’ And that for me … and they did the scan in the wrong place which meant they had to go and redo it, and that for me is a really interesting question which is does the NHS allow staff agency to act upon what they hear from a patient? I think that's a difficult question.
SB: Yes, so it's interesting this sense of agency and those who actually act on what they feel they need to do rather than actually kind of what they're told to do and I just wanted to tell the story of Chad. So Chad is a GP in White City, in Hammersmith and Fulham, so an area of high health inequality and so he went on a home visit and there was this elderly gentleman who was homebound, multiple long-term conditions, he was … he had lots of health and care needs and he was quite depressed. So when Chad went in to do his home visit he had two options, he went in he could have done the … I'm not a clinician so I don't know how to describe it, he would have done his vitals, blood pressure, all sorts of things and for him that would been … as a GP he would have done his job. He went in and then he said that he asked, he said to him, ‘What do you want? What do you want?’ and he was asking, ‘What do you want?’ The elderly gentleman just looked at him and said, ‘I just want to have my beard trimmed.’ That was his response. So Chad in Chad's fashion, because he does have that sense of actually around social justice and wanting to do something different, he had to phone a friend who phoned a friend who phoned a friend who came and actually trimmed his beard. He went to see him three days later and he was a completely different person and he said it was almost … it's the sense. So he was a lot happier, so he was less depressed, his blood pressure was a lot better. So did his … having his beard trimmed actually improve his outcomes, clinical outcome? As far as Chad is concerned yes, absolutely. It did that.
DW: So what's the lesson from that story for engagement and involvement across the wider … ?
SB: So I think we have to give our front line staff permission and sense of agency to act when they see the need to act. I mean we have … the way we're trying to articulate this in north-west London is through a range of stories, different narratives. I mean I can go on, we've got Justin who was a drugs and alcohol user for 30 years from the age of fourteen to the age of 44 and then now he's giving back and he said in his film, he said, ‘I can tell somebody I'm volunteering in a drugs and alcohol service but I know the next hostel that will take that person in, what's the harm in me doing that?’ and that's … the sense is to what extent we enable for that to happen at front line and then we sort out the challenges backwards rather than the other way round.
DW: So that person you mentioned methods, one of the things around methods, I think what Samira is saying is we can use narratives and stories in really effective ways to really highlight ways we can do things differently and I think that's … that's what I'm hearing and that's really important and it brings it alive, it makes people committed, it motivates people, it connects people and if they are followed through and they don't just become stories that can be utilised to say, ‘Well, let's slap ourselves on the back we're doing a really good job there,’ if they're actually used and lessons and insights can be taken from those stories they're hugely powerful for bringing about changes and insights about how we can do things differently.
SB: But it's also … sorry, just quickly I just want to say it also creates a shift in thinking. It's those are the ones when you capture those stories and you use them as a prompt for discussions they shift the thinking because then I move from my position as a commissioner to somebody who has an interest in making … beyond my organisation in making things happen on the ground. So for us what we're doing with those stories is using them to have wider conversations. They're an invitation for a much wider and much bigger conversation.
NT: I think the real power of those stories is when … as Dan was staying earlier, when it shows people everything that's happening all the way through someone's journey through and around the system not just one episode, because it's much harder for somebody to shift the system when they're looking at someone's experience around one episode. When you get the right people round a table … I saw this at national level when Healthwatch did its first big project on people's experience of discharge from hospital, we had people who had spent 30 years at very senior levels in the national system saying, ‘Of course I knew that, but I've never thought of that being connected with that before.’ So it's making it systematic that people look at those stories right the way across where the power comes from.
MD: I think if we looked at those stories, here's something to just throw out, we would actually question the language we use. So discharge is … it's really interesting how language is not neutral. I know a lot of people including myself who are quite interested about the term we use in terms of the discharge of patients through the system.
NT: Sounds like an end of a process.
MD: Yeah, very mechanical.
I: So I think we're coming towards the end of our time, so I wonder … and we've covered a lot of different issues, I wonder if I could ask each of you just to give me your final thoughts and suggestions and what might need to happen next around patient and public engagement, starting with you, Neil.
NT: Well I think that there is a huge opportunity now with the long- term plan to really model to the whole system that NHS England, NHS Improvement are really going through the plan and through their new regional structures to provide a steer to Trust, to other organisations right across health and care, that it is not only okay to do this it's imperative to do this, because unless this agenda gets the same focus from boards as the control totals do and the other financial issues and all of the other things that the regulators are concerned about, then it will continue to drop down the agenda. I think part of making that meaningful for people and helping people to come forward and share their experiences in the way that the system is trying to ask us to now, is to tackle that issue of the feedback loop and make sure that people can see in concrete terms the difference it's making to services but also the difference it's making to the relationship and how people see themselves becoming more and more powerful within the system. So that should be very easy to do in ten years.
DW: So I mean I think the discussion has been really good in terms of covering lots and there are some thorny issues there and we could talk for longer, but I think there's the … it still feels like an appendix this area, it still feels like something which is a bolt on or a ‘we'd better go and do some patient engagement’ that leaders … so for me it's back to the Wigan example which is it's everyone's business throughout an organisation and moving the issue from an appendix to the heart of an organisation seems key to me. For that one just as a really practical suggestion, that as these integrated care systems set up the first thing is everyone that worked on patient engagement experience, anyone that's working in this area in any of those 44 areas, just to sit down in a room together and say, ‘What do we already know? What are you doing? How are you collecting this? How are you?’ … because then you would start to have the conversation about what do we know together and bring these stories into play that Mark and Samira have been talking about.
SB: So in north-west London we've developed a local definition of integrated care systems in collaboration with our patients and our communities and our front-line staff and it really … it took a lot of time to actually come up with the definition, but what it came down is that integrated care system is a different way of behaving based on people not buildings, based on outcomes not on activities and procedures. So the idea is if we are to connect with our communities and actually kind of develop the … if you like a more collaborative agenda to address our population health challenges, we really need to think about how we develop a longer term relationship with our communities that's not based on how many events we did, how many meetings we went to, but what's the outcome? What is the outcome that's really actually we need to deliver? And if it's about addressing health inequalities we really have to stop and think to what extent the different transformation with a national or local, the different transformation programmes that have existed over the last ten/fifteen years have addressed our health inequalities agenda. So I think for me that's really critical. If you start with the community and if you work with communities, honestly the solutions lie there. You just have to create the space and the environment for people to come together and you just nurture that space. Don't try to control it, don’t try to manage it, because if you do that you destroy the intent within which it started.
I: Thank you and Mark a few final thoughts from you.
MD: I think I would go back to the NHS constitution and its values, which says patients are at the centre of everything we do. We should be partnering with patients and their communities. So my question to people engaged in the NHS and the wider health care system is to reflect on what is your vision for ensuring that you're collaborating and partnering with patients and their communities in everything you do? That they're at the heart of everything you do and it could be a challenge, it could get you thinking differently, but … and then what is it you can do now? What one small thing can you do now? In the next three to four hours when you leave this conversation, what one thing can you do to put in place something that's different about engaging and collaborating and having maybe a different conversation because it's about a relationship? Fundamentally however we define engagement and involvement for me it's about the quality of the relationship we have with each other in the system in order to deliver the care we want.
I: Thank you. Well Mark has left us all with a challenge. Thank you very much to the panel and thank you to all of you for joining us. If you're interested in finding out more about some of the things that we've been talking about today then you should be able to see some links and some resources on the page that you're looking at now. We're also planning to continue thinking about some of these themes on the second day of our annual conference in November, so again please check out the link and our website for further details. I'm afraid we've run out of time, so thank you again for joining us and we look forward to seeing you at the next of our online events. Goodbye.