Talking about co-production and evidence with Social Care Future

[Introduction]  

This is a Research in Practice podcast, supporting evidence informed practice with children and families, young people, and adults. 

Jeanette Sutton talks to Anna Severwright about co-production and the recent Research in Practice Evidence Review that was co-produced with Social Care Future. The Evidence Review is based on the five key changes outlined by Social Care Future’s 'Whose social care is it anyway' inquiry group. The Evidence Review outlines the changes that are needed to make life better and equal for those who draw on social care.  

Jeanette: Let's start by introducing ourselves. Anna, would you like to introduce yourself please?  

Anna: Hi, I'm Anna Severwright. I'm one of the conveners of a movement called Social Care Future. There are four of us conveners. I'm a person who draws on social care, so I've had direct payment now for over ten years and employ personal assistants in my home and that's, kind of, how I got into the world of social care, I guess.  

[How the project started] 

Jeanette: I'm Jeanette Sutton and I am with Research in Practice, and it was my role in this project, which we're going to talk about today, to coordinate the groups that we had in our evidence review to facilitate discussion and I also brought the material together at the end. What we're here today to talk about is how the project started, some of the important things that came out of it, and I thought we could do that by really starting with the five key changes, which is where it all came from. So, Anna, could you explain a little bit about those please?  

Anna: So, Social Care Future is a, sort of… we call ourselves a social movement and we started about five years ago and one of the reasons that we, sort of, held our first event was that people with lived experience were not present at large conferences or meetings where the future of social care was being discussed, and we felt that was wrong. So we held an event, we called it a gathering, where anyone was welcome. People themselves who draw on social care, or their family members, but also allies working in the sector. From that, we realised that there needed to be a space for people to come together to talk about what social care could be and to try and make that happen. That's, kind of, where we started from. So, right from the beginning, that voice of lived experience was really important and I think a couple of years into Social Care Future we thought, 'Well, actually, we're fed up of having these enquiries and committees and commissions happening, kind of, over the air,' and there might be a token person with lived experience on the group or… I mean, I've done it myself, I've been that person sometimes or, you know, we get asked to say what we think. We're not really involved and certainly we don't have any of the power in that situation. So, we decided that we would hold our own enquiry, which in the end became called, 'Who's Care is it Anyway?' We would lead it ourselves, so there was a group of twelve of us.  

People who are all ourselves or our family members drew on social care. Quite a varied range of experiences, people with dementia, people with learning disabilities, people like myself with physical disability so all, kind of, coming together to use our expertise to lead that enquiry and to hear from other people with lived experience. We heard from over 500 people and from what we heard from everybody, kind of, came out with these five key changes, and a relatively short report, which is available on the Social Care Future website, because we didn't want it to be a select committee enquiry report that's 120 odd pages. We wanted it to be something that anybody could pick up, understand and get something from. We also wanted it to be something practical so we had some first asks at the back of that for individuals, the governments, local councils. You know, we wanted there to be some sort of action from it. So, the five key changes that we came up with were communities where everyone belongs, living in the place we call home, leading the lives we want to live, more resources better used and sharing power as equals. We felt that if those five things, kind of, were improved on and everybody experienced those in their lives, that would be allowing us to lead an equal life to people that didn't need to draw on social care. We talked about, yes, five key changes to unlock an equal life. That was where those five key changes from it.  

[Co-production] 

Jeanette: I think from Research in Practice's point of view, because I think we came into the picture at the publication of this report, and what was really interesting and our Assistant Director, Lisa, took this up really, is every eighteen months, Research in Practice have what's called an evidence review where one of the bigger issues in adult social care is looked at in some depth. Often in that 120-page format that you were describing, they're often quite big books or PDFs because there's such depth in it and so ones that we'd done before were working with complexity and ageing well. For this one, the inspiration was very different because the messages, like you said, with those key changes came directly from people who draw on social care. When we came across it, it wasn't only, like, what does the research say about this? It was also about, well, how is that research interpreted and, of course, research is usually interpreted by people either with a background in research or people who specialise in that subject. Very rarely does that analysis go out to people who draw on social care themselves which, you know, we can talk about a little bit more as well. So, we set it up to be, well, I would be the only, quote unquote, professional on this project. The rest would be made up of people with lived experience of social care and people who support them through a caring role, or have done in the past. 

We convened five groups to represent the five key changes and people could choose which group that they wanted to be on, which spoke to their interests, and we had five meetings on each topic over I think it was probably about, sort of, six or seven months really. I was so enthused by the stuff that was coming out. I'd never worked on anything like it and, you know, I hope I get to work on something similar in the future because it just proved to me how skewed the usual dynamic is through professionals and people who draw on social care. I think what we produced in the end and what we've now published is a really amazing look at those five key changes and the stuff that comes from it is what people think they mean, so within each of those, like, key changes, there are sub-themes that really go into a bit more depth. We bring out the research and then just, like, again, reflecting your original ethos, it's a call to action, as well. You know, people were saying, 'Well, this is what needs to happen of it,' and one of the things that people said, 'Well, we do not want this to be just another thing that sits on a shelf somewhere. It is way too important for that.' Like I said it, kind of, struck me when I was doing this how unusual it was really. So I wondered what you thought about why that might be, why using both lived experience and academic research is important, and why it doesn't seem to happen more often.

Anna: I think there's often a lot of lip service paid to, like, the word co-production or lived experience or sometimes people might have a separate co-production group over there that they go to for a bit of advice and to check things, sound things out. I think real co-production where actually, like, power is shared is… I think it's often quite hard to do but I also think people are often quite scared of it because it involves them letting go of some of that control that they've had for a long time.  

Jeanette: Yes, for sure. 

Anna: Yes, and not knowing where that piece of work is going to go because the whole idea is that actually you, as a professional, or that organisation, or whatever it is, don't have all the answers. It's a bringing together of minds and ideas and that actually, at the end, I think you get something better and more interesting and more real and grounded in reality and practical but you, sort of, have to have that leap of faith, I think. People are often so used to the ways that things have always happened and we do see some progress. So one of the things we did at one point was ask speakers to take a pledge that they wouldn't speak at events if there was nobody with lived experience on the panel speaking. You know, just today I've had a couple of e-mails through about events that are happening in the next few weeks where there's a panel of four or five experts on social care, not one of them with lived experience. Even when I am on the panel, or someone like me is on the panel, we're, like, still outnumbered and we can be just seen as like… well, we're a nice to have but we're not an expert. I think it's trying to squash that idea of what is expertise, what is knowledge, what is skills. There are a lot of assumptions and, dare I say it, sort of, ableism and ageism and you know it was a lot of work went into this. It takes time. It's not necessarily an easier process but that actually it's the right way to do stuff and I think, you know, you get a much richer result at the end. 

Jeanette: Yes. I think that point about power and control is actually a really, really key one and a lot of organisations, whatever they are, whether they're third sector, whether they're local authorities, there is like, 'Well, we need to have these outputs, we need to have these outcomes, we need to know where this is going, how much it's going to cost, what kind of time it's going to take up,' and, yes, you can do that to a certain extent with co-production but if you're sticking too rigidly to them, it's likely that you're not going to be co-producing something. You won't be co-producing those outcomes, they weren't emerge as you go on and there won't be the scope to change things, as new things come up. It, kind of, for me, would inhibit the open-mindedness that's really necessary for it. That leap of faith, especially at the beginning, is where you might not see things for a while. It's relationships, trust, which was something that I found to be really, really important in this project. 

Anna: Yes, definitely and I think, actually, some of the people involved in this project have been involved in other pieces of work in the past but others it might have been their first, sort of, time really doing co-production in this way. I think a lot of us have had experiences where, you know, we get told, 'Oh, we're going to co-produce this piece of work,' and then it becomes very tick-boxy or you actually don't get to have any real influence and you think, 'I'm wasting my time here.' It's co-production in name but not in method. So I think actually building that trust, you almost have to actually give people the belief that, 'Oh no, actually this really is going to be co-produced,' because it's unusual and it's a shame that it's unusual but I think that's one of the great things about this project that actually it was properly co-produced. Yes, there are not many out there that I can think of that I would go, 'Oh yes, that's really, really genuine co-production, starting from a really, sort of, blank place, of, okay, you've got the five key changes but then now what?' Where you go from there was led by the groups. 

Jeanette: That's one of the nicest things that you could say about the project, Anna, that it does represent… because I know how experienced you are in co-production. I think that also what you were saying earlier about tokenism was really, really important too and this idea that people are put on projects to only talk about their own lived experience. Like, as if they don't have opinions or thoughts about other things as well. I think that's where the breadth of the key changes was really important. So, we had a lot of different people on this project with a lot of different experiences but, for instance, someone who was living with dementia wouldn't only just want to talk about dementia. You know, there are lots of other opinions and thoughts that people have and you've just got to be open-minded to that. Just, like, the idea that people will stay with the label that has been given to them is just something you've got to get out of your mind with co-production.  

Anna: Too often, yes, we put labels on people and we, sort of, minimise and we forget that actually we all are complicated humans with all these different aspects to our lives. Even the five key changes, it's really hard to, sort of, separate them because they all overlap so massively. You know, no one's life is split into five areas. I like the, kind of, chaos of co-production in the sense of you don't know what you're going to get but you put all these different bits in and then you see something come out that's totally more than you could've expected but in a different way. I guess for some people that are probably used to really tight project plans and things, that probably fills them with fear. I guess I don't want people to call things co-produced if they're not. You know, I think too often now it's a word that's getting used wrongly and sometimes it might not be appropriate to co-produce everything. I think people need to be honest about what is and isn't co-production. 

Jeanette: You should always be open to challenge about that and, again, another thing with co-production, there was a really good moment when one of the group members challenged the fact that we were just looking at adult social care and that we weren't looking at transitions from children's services into adult social care. That made me think. I was like, 'Well, yes, there were certain outcomes that were set before this project,' as well. You get into all sorts of amazing, philosophical debates with other people and yourself about what it's all about. 

Anna: Yes, and there do still have to be some parameters, don't there, because co-production doesn't just mean it goes on forever and, kind of, is this open-ended thing that can become so big or so broad or not achieve the goals that it was set up to achieve. You know, there are still structures and there are still things that are important that we reach and things, so it's not just an anything goes kind of a situation. I think it's about telling people upfront, sort of, what are the parameters and what we are trying to achieve, and even questioning those and then agreeing together what those will be and working towards them. 

Jeanette: That's a really good point, as well, that it's not open-ended. There's a product in co-production, that's inherent in the language of it. We're looking to achieve something, it's not just talk [talking over each other] as well, which is [talking over each other]. In the evidence review, as people will see when they go onto it, the whole thing has loads of quotes and video material from all of the group members, so there are some amazing quotes there as well. One of the quotes that I really like was that we need to share and celebrate the outcomes of co-production. I think we can get caught up talking about the mechanics of it and how we do it but actually showing this is what can be achieved with it is, like, super important as well to say, 'This was the process and there are certain things we can learn from the process but this is what you can achieve when you do it. It will be different and it will be more special than something [talking over each other] without it.' 

Anna: It will be just as useful an evidence review, if not more so, than the other evidence reviews. Like, this isn't a lesser, 'Oh, this is the nice one that the lived experience people did and a special project,' kind of thing. You know, this is just as valuable and I think that in itself sends a really important message and I hope people do use it and do look at some of the things that were raised in it and, kind of, question maybe how they're working in their organisations or think, 'Ooh, could we do that here? Could we actually even be prepared to, kind of, try something like that?' So many organisations are sort of… power is so entrenched and hierarchy and all of these things in the way we work and sometimes you need to pause and reflect on that. Like you say, with challenge but challenge not in a, kind of, argumentative way but in a much more-, in a, kind of, reflective and questioning and working through it together kind of a way, I think.

Jeanette: Absolutely because I think one of the things that can hamper co-production is when people get defensive about things which, again, is a little bit of an expression of not being able to let go of power perhaps. You don't want people to be afraid to say things because they worry that, like, their support is going to be affected if it's with a local authority, or that they're going to be badged as a troublemaker or all of these kind of things. I think it's delicate power situations with co-production which thankfully, with an organisation like Research in Practice, we don't have those considerations being, like, a separate organisation. I think perhaps when local authorities are involved in co-production, there's a different set of dynamics that may be harder to overcome in some ways.

Anna: Yes, definitely, and I even think amongst, you know, people with lived experience there are even power dynamics. You know, it's not a case of, 'Ooh, professionals all have all the power and they have to give it all over to… you know, I think in any situation there are dynamics and it's about being aware of those and thinking about them. Even the language that you use, or the ways you hold meetings, the times of day that the meetings are held. You know, the amount of times I have to say to people, 'I can't be in Central London at 09:00am. That is just not going to happen as a disabled person.' Like, and then have to often repeat that over and over again because they just forget because the world is set up that we're all working 09:00-05:00 and fit and healthy. You know, there are so many different aspects of, I suppose, adjusting to make it work for different people, and that will look different with whatever group you have and I think that's about learning together and being open and honest and flexible and trying to do what you can.  

[Learning from the evidence review] 

Jeanette: One of the first things we did in the groups that we had was we just spent, sort of, fifteen minutes thinking about how we would want to run these groups and they were all different, Anna, they were all different, the kind of things that we came out with. My favourite one was, I think it was in the leading the lives we want to live group, which was, 'We are allowed to swear because these are, like, issues that we feel passionate about,' and, yes, I did minute those swears, as well because they were… 

Anna: Excellent, and I think they should all look different. I often say that about care and support plans. Like, no two people's care and support plan should ever look the same because obviously, like, what we want out of our lives should always be individual and in each situation of work, how you want to work is going to look different because that individual group are all going to bring parts of themselves to that. If you had a different group of six people, it could look very different, and I think that's really nice and amazing but perhaps for people that are very used to a very corporate, 'All our meetings look like this and we always sit here and we take minutes in this way and, you know, this is the agenda and this is how we do things…' it's not about trying to, I suppose, make us fit into that corporate mould. It's about starting from a bit more of a space of, 'Let's work out what works for everyone.' 

Jeanette: Like, offering options and thinking through things in a different way. You know, sometimes online meetings work for some people. Sometimes, like, in-person meetings, sometimes separate phone calls work for people. You know, just trying to make sure that people have the options for being involved.

Anna: Are there things from this that you learned that you think you'll take on, like, through the rest of your work? 

Jeanette: Pretty much everything, Anna. I think the greatest one is the sense of my own reflections and we all like to think of ourselves as open-minded. You know, that's one of the qualities that pretty much probably everyone thinks that they have. No one likes to think that they're, kind of, biased or not open to new things but I genuinely realised with this, the assumptions that I've made about what a project would look like when I was into it, I found it more and more ridiculous that more projects weren't like this. You know, I'm in my 40s now and it's the first time I've been involved in a project like this, so you start to realise how skewed that dynamic is. I also realised that I hadn't heard such distilled amount of lived experience of the social care system in such a short period of time and what that did for me is moved me completely out of the abstract with everything and into the concrete. So as I, sort of, heard and was able to build up a picture through this project of people's thoughts on what needed to happen and what needed to change, which was different in angle from what I'd heard before. I think the other thing that I learned as well was not to underestimate the emotional aspect that that takes on as well. I think one of the things I had underestimated was how both upsetting and inspiring at points I would find this project. You know, moving into thinking about maybe pieces of advice we can give people, that would be one of mine, really. Don't underestimate the emotional impact it can have on everybody involved and make sure you look after yourselves with it.

Anna: Really good advice. I think I like that this is an evidence review because I think that, in itself, sounds very, sort of, serious and academic and quite important and proper and yet it's being done in this way and perhaps it smashes some stereotypes of like… you know, people might have thought, 'Oh, you could have a co-produced, I don't know, video about social care, or you could have a co-produced vision of social care, but you couldn't have an evidence review because that's a proper academic thing that is very different.' I'm really pleased that actually it's shown that, no, of course you can and people have a lot more capability, I guess, than often we're given credit for, and different capability. Yes, we're not all PhD students but we don't have to be PhD students to be able to do this stuff.

Jeanette: The seriousness of it is a really, really good point, I think, that it's something that sits alongside those other evidence reviews and when we had the group discussions we weren't just, sort of, talking in the abstract about things. We had the research and it was like, 'Well, what does this mean?' People were not afraid to say, 'Well, this is outdated, this feels like it doesn't speak to me.' Like, people are used to, in the professional world, thinking, 'Oh, research says that. You know, we must take-, and, like, the being able to look at it through that analysis without reducing the basis of the research that's used in this was amazing. 

Anna: Fantastic. That raises another point that actually the people who are deciding what gets researched and how the research is done and what questions get asked are probably not usually, you know, very rarely people with lived experience. You know, these sort of conversations and this sort of power-sharing needs to be happening at all different places. You know, at universities, at academic institutions, research grant boards, all these different places, because actually I would probably say that I wanted to research something completely different to what people that might have worked in social care policy for 40 years think is the key question. Both questions might be equally valid to look into, it's not that mine's more right than theirs necessarily, it's just that they're different and if the whole voice is just left out of those discussions, the evidence that we get at the other end is going to be all with all angle and lens. You know, it's a bit like how now we wouldn't do research into multiculturalism and racism without having people from different ethnic groups doing research and being part of those conversations, we wouldn't just have an all-white university doing that research, and that's great. Somehow social care seems to still be quite stuck in that sort of professional model of academics and I think we need that at all levels, so that the evidence we can review, maybe in twenty years' time, if we did this again, actually people might be saying, 'Oh yes, there's evidence. This research really speaks to me because this seems to be, like-, you know, yes, might be a bit different.

Jeanette: Let's do it again in twenty years' time.

Anna: See what's changed.

Jeanette: Yes.

Anna: There we go. There we go, yes, wow.  

[Upcoming work from Social Care Future] 

Jeanette: Before we stop, I really wanted to know what Social Care Future are doing at the moment and what pieces of work you've got going on.

Anna: As always, seem to be doing lots of different things but we've got, sort of, three main prongs, I guess, of our current plan. So, we've got what we're calling the power of stories, so we're looking at the change in the language still around how we talk about social care. Just launched an animation that's really short but in everyday language, voiced by the wonderful actress Liz Carr, that's trying to tell what social care should be in a much broader sense than just, you know, gets you out of bed and keeps you fed and watered, but actually it's about people's lives. So we're still doing all of that and trying to, sort of, see how we can start to talk to the wider public about what social care should be and change the media perception. Then we've got what we're calling people power, which this fits nicely into, in a sense, because that's all around this idea of how we can get people with lived experience voices' heard and part of those decision-making… it's not just about being heard, it's actually making decisions and having some of that, sharing that power, and supporting people to get into the right positions to be able to do that and to have the skills that will give them the confidence to do it. Then the other bit for us is, I guess, around still trying to influence the system and we've got a couple of communities of practice and a community of providers and lots of different things that we're trying to do, so busy as ever. 

I think it's about keeping going, really, with that vision that we have, which is that we all want to live in a place we call home with the people and things that we love, and communities where we look out for one another, doing the things that matter to us. We, sort of, all just keep going, trying to get more people's lives towards that and in whatever way we can, really, so yes, we're keeping going. We'll be speaking soon, won't we, about this evidence review, as well, at a conference, so that will be nice and, yes, I hope lots of people use this resource in lots of different ways.  

[Applying the learning from the report] 

Jeanette: We've tried to make it as easy for possible for people to use it as well, you know. There is a section in every single one of the sub-themes, in every single one of the key changes about what you can do, so whether you are in direct practice, whether you're a head of service, whether you're a manager, whether you're somebody who draws on social care and wants to know the kind of things that you can ask for, your rights, further information, all of that, it's useful across the board. One of my favourite things in the project, really, is its bigness. Bigness, is that a word? I remember, like, in the middle of the project, and it was in the sharing power as equals group, you know when you're in the middle of something and that's when it feels most overwhelming because you can't see the end of it, and I felt comfortable enough in my relationships with the group to say, 'This is starting to feel just really, really big.' One of the group members said, 'Well, number one, this is something that we're all feeling. You know, it's not just on you,' which, again, was a really good reminder. One of the things that he also said was it feels right that it should be big, because this is complex and we don't want to put it all in little boxes. So, again, from that point on, I was just like, 'Yes, that's absolutely right,' and that was another, like, key moment for me, that made me think how important this was and how people can get loads of stuff from it because it is all-encompassing. There will be something for you. If you are listening to this podcast, there will be something for you in it.

Anna: Yes, and it's not designed that you start from page one and you go through to-, well, it isn't a book so you can't start page one and go through to page 100, but it's actually something you can dip in and out of at different times. A different section might be relevant to what you're doing at that point so, you know, it's a living, breathing resource, rather than a static thing that [talking over each other].

Jeanette: Yes, the opposite of a dusty report, for sure. 

Anna: That's great, and thank you for your hard work writing it all and getting it to that place and bringing those groups together and working through that process to get it to where we are now. I think it's great.

Jeanette: Well, thank you, Anna and, like, I could not have done it without the support that we had in our monthly meetings and catch-ups as well and, yes, I just found the whole project… now it's done, I miss it. I miss it, which is so weird.

Anna: Aww.

Jeanette: So there's that as well. That's perhaps my final piece of advice for co-production, you know. When it's done, when a project is done, you will miss it.

Anna: Yes, but you still have those relationships and maybe in the future, like, can work with some of those people again in a different way or something.

Jeanette: Yes, for sure.  

[Outro]  

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