Angela speaks passionately about the value of coproduction, particularly around public inpatient involvement in research, how the involvement of the deaf community really enabled researchers to do their best but the research to be of value to the community as a result of the collaboration!
we trust. Thank you for agreeing to take part in this. Would you like to introduce yourself? Yeah, I'm Angela. Quickly Um, I'm part of a co production called Hearing Birdsong. Uh, we're a multidisciplinary team of practitioners. People with hearing those, uh, administrators, artists, designs, you name it We're probably one of those people. It's very, very mixed. Um, but I'm also a teacher and a parent, and I think these are all things we bring to co production It's not just what we are. It's what we bring to it and all these other things we bring to it. Um, and certainly in my case, I've also got hearing us Which is what? Hearing birds songs about Thank you for that introduction and a slight glimpse into the work and project you're involved in. So you talked about your projects. I was wondering if you could share with me an example of co production or an experience of coproduction you've been involved in Well, this is the first and only one opinion, but it's a very exciting thing. We started off with not knowing anybody in the group at all. We were complete strangers We were in a what we call a sound innovation, which is a bit like a hackathon where a whole group of people get together and you're given a task and you have to solve it or find a way of dealing with that. That task and a task was to find a a way of helping people with hearing us because there's at least 12 million. I think of unresolved hearing Those people in this country don't getting treated and it's really serious because they miss out on so much. So we met for two days. We, as I say, there were people at the meeting from all areas of life and I mean all areas It wasn't selective when we were all on an equal basis and equal footing. We were provided with some professional information. So we were given sessions on what is meant by hearing loss on innovations that were going on so we weren't doing completely cold, and then you gradually as you do with any hackers on anything like that, get into groups But it doesn't happen straight away. It's a gradual way of doing it. It's the way I gather that they did in the Second World war to get a cruise together? Um, they would a point All the, uh this is flight crews. They point on people put them all in a room together and say Right, pick your cue so you'd have the pilots and navigators an exact and they'd all come together, eventually get a group. And that's virtually what happened to us We we were all put together. But in our case, we talked in different groups and eventually to cut a long story short. Um, I spoke to a guy called Tom Woods, and he said to him, You know one of the things and went to other people as well I said, one of the things I found that needed me to get something sorted about. My hearing loss was two that I noticed. I couldn't hear birds sing anymore I gradually I live near the woods, and I would walk through there and gradually different sounds disappeared. And then I realised that I had, um, the sound. Similar sounding voices disappeared So I have to listen to a lot of Children's voices, obviously and and and my grandson and I found some levels of that were being lost and in the end, some completely some birds. I completely lost. So again we got together I think that on that day there were probably about four or five of us. A researcher, two of us who had hearing loss. Tom, who's a designer I think that's all we were at that time. We presented our idea, which was to find a way of using birdsong to help people access hearing care. Because what we have said is that it's really difficult for people There's a lot of prejudice about getting your hearing, testing a lot of prejudice about, um, wearing hearing aids. Um, you know it's associated with age or or noise induced and I don't know, it's not seen the same as if you wear glasses. So we wanted a nice, friendly, relaxing way So that's how we got together. And we were awarded with some money at that time from University College and from Imperial, and with that money we started and we then because this meeting that we were at for two days had so many different people there. It was such a multidisciplinary group there we all had all the addresses and contacts There really was there. So what I said to Tom and I want to do I said, Well, it's pretty obvious we need to contact um, Dyson here for the engineering for the hearing. So he contacted them Uh, we started having meetings, put the design together as a group. It was never one person. Um, so it's kind of how we started Sounds really powerful. And so do you think that you would have been able to get to where you got without taking that approach? No. No, because I'm a patient and it's a patient, um, into a patient, led or not really lead because I don't actually think co production is about leading It's about sharing and getting together as a group. So although we have people who've got different skills and do different things, we all sort of contribution. There's no, um, it's quite nebulous in that sense It's It's a rather unusual way of looking at things, but you don't have hire a hierarchical system, were not hierarchical, were all seen as equal. We should all contribute, but we all in the end. What we found with our group is that you all begin to learn where you are in there and what your contribution can be And that's kind of how we do it. Um, and you then at the same time can contact other people and invite them in and see if they can help. And so it's gone on like that That's really powerful. So it's through coproduction. What impact or changes do you think happens? And they are there any positives or negatives? But the positive is, I think you go to places you never thought you could go to because it's not the conventional way of managing things are looking at things and trying to solve a problem Um, therefore, you don't kind of think along those lines. You're not because we aren't a group in the formal sense, like at work situation where you know there's a hierarchy, a hierarchy, you know, you've got boss, you know, you've got people, you're in charge of all that sort of thing. So all those politics aren't there? I'm not saying they're not there at all in co production, because whenever a group of people get together, they are there Um and, um, of course I'm not going to kill anybody that it goes smoothly and everything goes right. But I don't think it goes particularly wrong. I think what happens? You have to find ways of managing these situations in a way you wouldn't in a workplace So, you know if, for instance, we had somebody in our group he to begin with, he was the one with people that we met on at the original meeting. And he's a lovely guy. And although he decided to join our meeting was a free free choice of whose group you went to this hack hacker song Sandpit meeting And he came into our group, he decided to join us. But at that point, at that point in time, he didn't really have any. And I don't mean some negative sense Far from it. Um, he didn't have any action ideas. Did that matter? No, it didn't Um, he was a hearing loss. He used. He was quite has quite considerable hearing loss He wears hearing aids. He comes from a group of of a community that we don't always meet. And so when we came to present our our thing to win the prize because it was a prize with one, um, he just said Oh, no, no, no, Angela, No, I can't be in it because I haven't done anything And I remember saying to him, You have, You're in our group, you've got hearing knots. You're part of it you can't hear and you present with us So reluctantly came and presented with us. Now what's interesting with him is that he's kind of ended up being the group photographer And every time we have a meeting, he takes photos and he's very much part of the group. And so it doesn't have to be somebody in a co production that brings what is seen as the conventional contributions that you expect on the team in saying the work situation, you know, because you would say of something like that. Oh, well, yeah, now He didn't have an idea at that point in time, but now he does. But if he hadn't brought him in, you'd have lost him. And he's been able to contribute an awful lot And, you know, we we stayed in contact. He's still part of the group. He's come to our various sets emissions and contributes If we hadn't asked him then because he said, Oh, I've done anything what he had. He decided he wanted to tag onto our group because he liked the idea. That's how he came to us He liked the idea That sounds really powerful about everyone finding a place in co production. So I wanted to just go back to that. So would you like? So in your view, what is the value of coproduction? What impact does it really have? I think it enables you absolutely, to think outside the box There's absolutely no question about that because there are no constraints. There isn't a rule in the normal sense. I mean, you've got to be polite, respectful Um, you will have times when you don't agree with everybody. You will have times when, But then that's part of it. Uh, because, um, that's really how you're going to manage It really sets one values of co production is that it's absolutely completely out of this box, which is fine for people who can think out of the box. I think people who are coming to it new and I must admit, when I first came to it, I began to wonder, How on earth will this work? It can be quite intimidating. In fact, the opposite of if you go If you go to a full meeting at work, that's intimidating to me. Um, well, it can be equally intimidating to be part of a co production because you've got no idea what it is about. You know who's going to share it, who's going to take minutes? Who's going to record it, Um, eventually work away We've been lucky with the people we've had in our group. To be fair, I don't know where that happens. Every group we've got, people who've been able to help with the design We've got people who've been able to, uh, do the website. You have people who've been able to do the engineering bit. But then at the same time, we've always been able to find ways of getting some money So far, I don't know whether that's going to ever stop. We've managed to get finance from the World Health Organisation very small amounts, but enough to keep going, and we've now got one from the Design Institute, so we sort of got along like that. So it's a funny situation, but not one you'd expect It's taking into places you'd never expect you go to that sounds amazing and great. And what a good illustration of co production. So you started off saying that this is your first experience of co production, and there will be many people like yourself And then you just talked about, um, sort of the fear around kind of how it will. You know how you'll do it. So do you have any advice or kind of top tips or suggestions to people have never heard of it or on the same journey that you've been on So I have never done coproduction. What would you say? That people are apprehensive, I think throw any thoughts of what it might be? A way you don't have any preconceptions at all? Um, I view it very much or did. And when I look back on it, really, I love travelling, and I really align it to travelling You, you go to places you've never seen before You visit places you haven't seen for, and then we go down that direction. But we go around that way or we'll try that and you learn more and more as you go along. Um, so I think I think That's what I would say Um, it doesn't stop. You don't stop learning. I haven't stopped learning Um, and there are all sorts of things. You get lost on the way, as you do when you're travelling, you come to dead ends as with your travelling, but then you find beautiful moves when you're travelling. So it's a bit like that is going on this kind of journey that you never expected But it is a good journey to go on if you've got if you if you throw all the conventional ways of thinking about getting together as a group, you have to throw that away. You can't try and cling onto that, although we to a certain extent in order to keep it. Cases do have somebody who's ostensibly a leader, but he's not the leader, but he just That's his skill, and I think that's where you're coming into it People skills match and they sort of come into it. You've really helped me understand, like your project and the value of co production. And I loved the metaphors like, and the experiences I've got in my head, the stuff about what the pilots coming together and I have this stuff around collectively sharing So you have touched on this. But in terms of the impact on people, groups, organisations, services and wider society, what impact do you think your project will have on people, groups, organisations? Services are wider society. Um, that's a difficult one to answer because one of the things that happened to us is that we were just getting going We were about to, um, go to the Natural History Museum and run a session there. We were going to go to the Imperial. They have a whole, um, not an open system, but they have, like, two days where they do a festival We're going to do stuff there. And then what happened, covered it as it did with everybody. And so all the things we were planning to do, we couldn't do, um and we're still still, to a certain extent, haven't been able to do those things, and I we haven't thrown them out the window Um, so we had to adjust. And so what we did was make her a video. We've got a video of what we did, which we did in lockdown in our individual homes That is on YouTube so people can see what we're doing. Um, I think we've got a graphic that I can remember. I don't do the financial stuff This is the other thing I remember. I, uh I can't put myself as kind of more my my profession as a teacher. I mean, you're an enabler You don't do. In a sense, you're trying to be part of a group, but you're not the one who's you're encouraged. You want other people to be, to shine, to do well And so is it kind of a different kind of situation. So we, um sorry, can you repeat the question again? Completely. Nelson's rich You're recording this? It's absolutely fine. So you talked about the impact and so I wanted to kind of just explore the impact on people, groups, organisations, service society. But from your your work that you've done through coproduction Okay? Yes. Sorry. So, as I said, I was trying to spend covid good kibosh on it all before we went into covid Because we have we have pre covid covid. And now we're getting into post coverage. We have three different iterations of what we're doing before we got into that in order to decide how we contact people and find out what people needed to access hearing help in order to do the designs in order to do the exhibitions and in order to get it out there, we actually And if you have a look at the video, um, on YouTube, we actually went and spoke to a lot of people So one group of people went to, for example, was the Hackney brothers, their group of, um men who are who are really mostly over 50 probably over 60 very hard to reach when it comes to getting help for the hearing, you know, a bit reluctant to engage. And so we had a workshop with them. We went to them, not not on them, to us And we had They were lovely, actually, and they were saying, Well, yeah, we'd like this. We'd like that and they tell us what they were interested in. One thing they said was that we could meet if we went to take the exhibition of what we were doing to the areas where they were So, in fact, we went to I think it's dust and shopping centre so I might have got it wrong because we're talking about pre covid and it's a long time ago. But it was the east end of London. We went to a shopping centre We had an empty shop that the manager gave us and we set up there. So we had all the birds song in there and people would come in and we had a system where they could have a hair check and they were open. So it's anybody off the street Basically, we had also done it previously the year before at the Healing Centre at ST Mary's Hospital in Paddington and it was in. It wasn't in the hospital by the hospital and then we'd also done it in another community centre, also in east end of London. So it's as far as we got and then Covid struck in Covid We didn't stop doing it. That's when we got the World Health Organisation small grant which enabled us to make the video and to begin to think about doing that. Um so the video is out there on YouTube I mean, you know, it's YouTube's like how many people watch is another matter. But at least if people ask me about it, I tell I give them the link and they can look at it and it tells you exactly what we've done. We've also got a website So the website will also And we've also had, um articles in newspapers, particularly East end of London. And then more recently, uh, I with Tom did a radio interview on World Hearing Day. That's post covid coming out of covid So we could actually start doing more sort of active things, just kind of so currently we're looking at developing an app because what we realised is that covid just put a kibosh on having a real people visiting exhibition where you talk to people about it, where they could actually walk around the room and hear birdsong find out if they could hear all the songs if they couldn't find out how to seek help for their hearing. Because it's not a diagnostic test. It's more like people indicating, you know Oh, well, I'm missing some of those sounds, which is what happened to me and therefore we replicated that so therefore you can go and seek help But a lot of people stop at that stage. I don't go to seek help, so that's what we were trying to do. So that's what they did Percentage Lee. The people who came to our exhibitions, uh, I have not the figures, but it's on our video. Quite a high proportion did seek help, or we're going to seek help and knew the route of how to get help with the NHS Um, so that's that's kind of how we've done it. Um, we're still feeling our way now because what we're trying to do the app is kind of match it to the real life, Um, hearing birdsong iteration with the APP. Certainly so somebody can go seamlessly or or go maybe go to an execution and maybe then use the apple vice versa And see it's the same thing and that we're only really beginning to that one. Um, that's how we're getting out there. So I don't know now whether we're going to the Natural History Museum, which seems to be it's obvious because it's got the birds They were going to have us and we were going to go and to talk to the association GPS. I think whatever it is, all about various other things were going to do, but they all got stopped. Uh, like everything else enjoyed a times That's it. You have to adjust in some sort of way. Thank you, Angela That really did give me some, um, a snapshot into kind of how your project and what you've done to support people, ultimately getting the kind of right support and actually making it easier for people. So that was brilliant. So I have one final question is so in one word or a sentence or an image, or in any way that you wish to express What? How would you sum up the value of co production? That's that's a really hard question. Interesting. Um, and for the moment, it's got me stumped I'm absolutely convinced Coproduction works. Um, I think it just is a way of escaping from the conventional ways of doing things. And if you can find some sort escape from those and you're not being tied down, you can in this case, find out much more about what you can do to help patients or potential patients than you would do in a conventional way Because none of us were so multidisciplinary. that even though we've got people from all sources in the group, there isn't you can't say, for instance, we have and a consultant who cares with hearing now. Normally, he would obviously go along the medical lines, which is important, by the way But because we're so mixed as part of a group, we don't just go along one track, and I think that's what it is. It's not going along one track, whereas if he went from the medical side or for the patient's side or from the technical side, you kind of get a trying to get one Size fits all. This is not one size fits all That's a bit more than just sentence. A sentence phrase were just a final force. Was was great So do you have any final comments? So you wanted to share with me about co production? I've come into my questions. Um, I think it's good. I would like to be involved in other co productions, Um, but when I found I'm involved in another one, it's not co production where the guy reckoned he was co production and I did try and explain wasn't and in fact, somehow, although we Although I took the group to training, they want to training in coproduction Um, they still didn't get it. And in fact, what's happening now? I think I'm going to not continue with a group, because it it's just going along a very straight line. And I don't think he's getting anywhere in the convict in the way that it should do It can do a lot more. Just I think it's being stuck. Um, so, uh, yeah, I think I think that's it I'm sorry. I'm not very clear on that one either. I said what I take from that is that once you do co production, it's really difficult to do anything else Yes, yes, yeah, yeah. And in fact, if somebody invited me to another real co co production, I'd be delighted to join them, but have yet to find that so And that's really it. I mean, really matters I can't seem to find the other ways of working justice stimulating. This is interesting. Just as progressive as co production Thank you, Frank. Rancher. That's a really lovely place, friend I feel happy. I'm gonna stop the recording there. Is that Okay, Um