Al shares his experience of inclusion in research particularly bringing lived experience of learning disability, how it's important to have direct input from those that are essential to the research, also talks about the value of coproduction diversity in coproduction and the importance of having equality!
this computer. Thank you for agreeing to take part, um, and show you a story about co production. Um, do you want to introduce yourself so high? Um, my name is Al and I'm a co producer. How would you share with me an experience of coproduction you've been involved in? Um, I've been involved in various types of co production Um, and I think the one that for me that has actually made more of a difference, um is actually one where I'm part doing some form of patient and public involvement. Um, and that's involved in a project for people with learning disabilities, which I've got a slight learning disability myself. Um, and they've literally started it from the ground up And I've been on the project for over a year and a half now, and we have monthly meetings where everything is discussed, but all my views are taken on board is the only person unfortunately with with a learning disability, who's able to contribute. Um, but because of the work that we've done, we've been mentioned in journals and there's articles about our group and how we've worked successfully together. Um, and I'm just ploughing on with the work, um, in a co productive way where all of our voices are equal Um, there is no power structure. The only the only thing that I would say, um is the only hint of power is actually that they have titles. Um, and I don't But I think that's fine. And they're the ones who send out the meeting invites, because I can't. But I know that if I could and I had the technological kind of stuff behind me to be able to do so, I'd probably do it myself as well So, um, it's really interesting to see that these people it's a strange story because these people have never, um, done coproduction themselves before and they didn't fully know about it. They just thought that because they were doing a project around people with learning disabilities and their voices being heard that they wanted people right from the outset. Um, to be able to discuss that and make sure that the these voices, we're going to be supported and they were going to be talked more about, but also something that would make a difference And here here I am, really, I'm really proud of the work that we've done so far still in existence were still working towards it. But I can see something that right at the end will be fantastic. Because of the mutual learning we've given, Um, there are things that they've taught me and things that I've taught them Um and it just feels like a really healthy spaces, actually. One of the meetings that I love attending, um, even though we only meet once a month. But I think we've all grown as people, and with each new skill that we kind of bring to the table, we're evolving as people And I originally the project was supposed to be only for a year in December I was really, quite, um, affected emotionally because I just thought, Oh, my God, these people have become my friends. They've not just become people that I work with, Um, and they said, no, we need extra time. So I was going Oh, thank you So I was really glad that actually, we've still carried on with the project. Um, I think this year will be the final year for it, but it's all about just getting people's voices out. During Covid we noticed that people with learning disabilities were ignored Another word for it is Shaft. It is what I normally say. Um, nobody wanted to hear what what they had to say And obviously they had lovely D n r notices, you know, do not resuscitate notices come through their post box because during covid they weren't seen or viewed as as people that others wanted to save able to. People wanted to say so. I felt as though it was really important, um, to actually talk about that and get their voices heard about what their experiences we're like during covid lockdown and how it affected them psychologically as well as physically Um, And at the moment we're going through the interview stage and we're meeting some really fantastic, resilient people. Um, that I don't think we have had a chance to or thought about before. And the project in itself is so unique because there's only there's literally only five of us in the main steering group team Um, and we're literally just doing it from the ground up, and I'm I'm very humbled and privileged to actually listen to other people's stories and be able to say that actually, their voice is going to be heard. Um, and to actually give a voice to people whose voices were forgotten during the pandemic that is so powerful. And I've heard time and time again how co production creates that space for people to have that voice So I was wondering about the kind of impact having people with lived experience had What is having on the project? I think it's gone to places that they never thought it would go to. Um, it was really interesting to note that when we first started, it was more I think I was working with people who are more abled. And although they work within the learning disability kind of sphere, um, obviously having no personal experience of of it, um, they In some ways we're quite naive about what it is that they wanted to do And I really had to kind of unfortunately set them straight and say, actually, you know, this won't work or, um, you know, if we're being told something, so say, for example, were being interviewed, sometimes it takes us time to process the question, and it can be that we have to come back a little bit later on or after a few minutes just so that we're done processing. And I thought it was really important to note that although we've got a timeframe for the interviews, that actually people needed to work at their own pace being able to respond, and if they couldn't at that time that we would offer them a chance to either be able to email or actually even call, um and speak with one of the researchers just tell them their experience because they couldn't give their response when it was that the interview was taking place and I think they never thought about things like that. It was very much they were thinking, We're going to have an interview and you will respond, Um, but in real life it wasn't going to happen that way, and I think it took myself to actually let them know that sometimes it does take time, depending on the level of, um, you know, the severity of the learning disability that you do have Some, like myself, have got a very slight learning disability. So it's a lot easier for us to process the information, whereas for others it takes a lot a lot of time, and I've met people where they end up giving me a response the day later because they're so busy processing things so that in itself is a is a fantastic example. Because you have people that although want to do things, um, in the best way possible And they have a lovely vision of of what it is that they would like to do, which is to get people's voices heard. They really didn't understand the best way to do it and how it was that they were going to do that. And I think myself And there's another person who's a carer for somebody with a learning disability. We really had to kind of advise. And I think this is why Although the time frame was originally a year for the project, it's a year and a half now. It would probably take two years to do simply because everything has to be taken into account. Um, and I don't think that they foresaw it They I thought a year was going to be quite a long time, Um, and they'd be able to do things in between, but actually what ended up happening was is that they put out a question and then we responded to it in such a way that actually they needed another meeting to actually discuss the reasons for our responses. And for me, I think her production in itself although I understand that, you know, this example is of something that has now taken a little bit longer than it was supposed to. Actually, the quality of what we have here is so much better than anything that they could have actually done themselves And I think we're really giving a voice. We're actually getting people to be involved, and people are understanding that they're being treated well. Um, and actually they're not looked at as as victim or somebody who is unwell They looked at as as a human being, which is what we all are. And when we actually go through things like that, actually, we've noticed that the answers that we also get our are a lot more full of quality, full of a lot more detail, because we've got the right questions which we co produced together. But we've also got the right kind of prompts We've got things where we work through everything to make sure that the language wasn't stigmatising. It wasn't triggering in any way, shape or form. It actually takes a lot of time to be able to do that and in such a robust way that actually, um, where we're really enjoying the interviews and the responses that we are getting And I think what's interesting is actually we're getting more responses than we would from the original questions. So people are giving us longer and longer answers to the questions. And when you think about people with learning disabilities, you don't actually picture that you actually inside your head Normally, a lot of people picture people with learning disabilities, taking a lot more time and not being able to respond in a coherent way. But actually because of the way that the questions are set because of the way that they're being asked people, people are very free and easy. They don't feel as though they have to take ages to process the question, and they were able to give a response straight away They were able to tap into those hidden feelings that they've never been asked about during Covid. You know, how did it feel for them to be isolating themselves from every other person, including their carer, including their loved ones. Um, you know, I I know that we've all had that experience, but unfortunately, some of us had it a lot worse than others And people were learning disabilities were literally ignored. And I think just doing the project in itself. As I said before, though, it's taken a lot longer We are getting the answers that we really need. And people are actually feeling happier after the interviews. They're not left in a state of pain They're not left thinking about all the bad things. Um, they're just thinking about, you know, the best way of actually being heard. And I don't think that could have actually been done without people like myself on this project Thank you for that. You took me on a journey of kind of how really to make coproduction accessible and what impact it has involving people with particular experiences. So I'm wondering for you, What would you say? The value of co production is to tell the truth The value of co production for me is is true equity within the room? Um, the value is is that we're all being heard. We're all being valued for what we bring to the table. And, yes, we're all you know, we can all agree to disagree, Um, because of our backgrounds and because where we come from and our lived experience But that richness that constant, making sure that all bases are covered Um, looking after people, um, bringing them on the journey with you. And actually, rather than actually, you know, a straight line that actually people are holding hands and going together at the same pace, nobody is left behind. I think that is that is a really important part of co production and actually making sure that people are all understanding they're all on the same page Um, but that they also are recognised for their differences, whether it be engender insects in height, weight and all the other things that set us apart as unique individuals. Um, within that co productive space, we're valuing and humanising every person that is there. And even for people that don't feel able to speak that much, um, or have various disabilities so that they converse in a different way Um, you know, for people like myself, English is not actually my first language. Um, and I don't speak it very much myself. And it's interesting to know that I'm in a safe space that if I need to say something, um and I can't express it in English that if I do go into my mother tongue, that even though other people may not understand they can they can hear my actions They can hear the tone in my voice. They can be able to at least guess at what it is that I'm trying to say. But actually there is no denigration There's no no, you must all. We must all speak the same language because all of our language is very different. Um, so for me is pure equality in its purest form as, uh, as equity Thank you. I'm wondering about out of any challenges because I think you've really spoke on passionately about sort of the value, and I wondered if there are any challenges to getting this right. I think there's always challenges, I think the first example of a project only taking one year and taking a little bit longer, um, is something that I think obviously, when you're looking into funding streams and things like that You're you're projecting for a certain amount of time. Um, I personally think, um, and it may be a very unpopular opinion. Is that actually, I think it's the way that processes are pretty much set Um, the way that if people are given funding for a certain amount of time, there's no extension way of being able to get more time or actually be able to budget for an unforeseen circumstance. That in itself hinders coproduction quite a bit because it rushes it. And instead of actually making those relationships one person at a time, you're forced to get bums on seats Um, ignore opinions and thoughts, not be able to go off on different tangents, which actually, um, I always say that every conversation, um, is worth its weight in gold. And actually, what happens is is that when you're stuck behind a clock, you've got no time to explore those conversations. And although people say, Oh, but we went off somewhere else Actually, you went off somewhere else because it is actually part of what it is that you want to say. You haven't gone somewhere else. It's just the way that the direction of the conversation is is that you have to think about all those bits where you know things that could happen, things that you know you're going to have to try and calculate beforehand You know, even looking at things like triggering language, you know, people really need to take time being able to do things like that. So for me, I think time, unfortunately, is the biggest enemy. But also, I think people's expectations are also a hindrance to co production because they're wanting it to happen really quick They're wanting to happen now, but they don't understand all the back, the back kind of backed scenes work that needs to take place, which is cultivating those relationships, making sure that people are psychologically safe so that they can actually speak rather than being judged as soon as they say one word, Um, or they're they're spoken to in a way that constitutes as a form of abuse. I think people, certain people, are very aware and very switched on and help treat people very well. But another hindrance of co production that I've noticed is actually people's level of competency in being able to help manage people Um, sometimes things can come out in a way that are offensive. Um, they can actually be racist. They can actually be really horrible to the people that are going through specific issues And a perfect example is that actually, I've been fat shamed in a co production meeting before, and when I think about how that happened and how it was that we're all taking medication for certain issues, but because my medication causes my weight to gain, I've gone into a room full of people who felt as though, well, we're a lot skinnier than you are. We're going to We're going to say something to you And the person in charge of the meeting didn't see that anything was wrong with it. And when you when you hear things like that, that really stops coproduction Because actually people are not looking after one another, but also the person that's supposed to be leading this group doesn't recognise. The behaviour is offensive in any way, shape or form, and they just carry on like nothing's happened. These things really stopped coproduction simply because you just don't feel able or safe psychologically to be able to actually give your opinion knowing that you're not going to be judged on your opinion, knowing that your opinion is going to take the way that you have given it, which is with love and with respect Because you're giving us your lived experience and you're not actually just giving us any old tat. What can we do to ensure that more people involved in co production? You have to say that question again? Sorry. What can we do to ensure more people involved in co production? I think it should become the norm It should actually became the preferred way of working. Um, I know that a lot of people have said to me that we can't always have co production. It's not appropriate, but they've never given me a reason for why it's not appropriate Um, and I've noticed that when when? When they do say that it's usually because they're working against the clock, so obviously they can't make it happen. But people don't usually say things like that. Um, one thing that I've mainly had when I've gone into the NHS is they've said we're not we can't do co production, um, or they're thinking that they are doing co production, but actually they're really not And I've always defined it by saying that, actually, um, if you already have a service that you're delivering to people and you're wanting me just to come in and tweak it, that's actually not co production because co production was at the beginning of the service. Unless you're deciding to overhaul the entire thing and start from scratch again, that's not co production. And that's why it won't be, um, appropriate But I think to get more people round around the table, um, and to well, to make the table longer is what I would say in bigger Um, I think it needs to be open to anyone and everyone. I don't think anything should be excluded. Um, people should be getting together, Um, and actually finding their peers making relationships with people Um, I think it's it's a fantastic way of working, and I've met some really fantastic individuals. Um, that I would never have met anywhere else doing this type of work and actually a friendship network, you know, people that I could actually message and would totally understand what I'm talking about because others don't, um co production is the way forward. Um, and it is a growing movement, but we need more people around the table And for me, I think we need especially more people of colour. Um, more people that are from the l G B T plus community. We just don't have enough of those voices Some. Sometimes we've got none of those voices, and I've noticed that when I have been in coproduction circles, sometimes I'm the only person there that is of colour. Um, the only person there that can speak another language, You know, somebody that is totally not the norm of what you would expect from a heteronormative um, society, that is, there is a white So I think there needs to be a lot of work, um, to make co production more accessible to people. And it is all about accessibility. And it's It's also on some part about psychological safety How do you mitigate the people that have been hurt, the people that have been damaged and traumatised to come forward and take on the challenge of a patriarchal system? It's very difficult to get people involved in that, but if you have a very open and loving space, and people feel that there's no rush to get there, but that is the destination that they're heading towards. Then I think naturally people will come and say, This is how we want to work This is how we want to be treated, and this is what we would do to make things better for other people really powerful. And thank you for sharing and bringing this to this, um, session So I'm wondering if you would share with me like, How does coproduction make you feel? Personally, I'd have any feelings that come along with co producing the feelings. There's just so many, um, the feeling of meeting new people, the feeling of building networks, the feeling of relationships, the feeling of making a difference, knowing that we've made a difference. Um, smile across people's faces when you know that you've got it right Um, the feedback that you get from patients, carers services is on a place or something that you've done that has made a tremendous difference to their life. And although some some of the changes you might make might be small, um, they're really impactful. Um, I think there's just so much to co production and the kind of elation knowing that I'm free to say what it is that I need to say, no matter how unpopular, because it's not a popularity contest but still knowing that I'm respected, not judged for my views Um, and that lived experience has given the rightful place it deserves within people's thoughts were all together in this, Um, you know how they have that saying of it takes a village to raise a child. We have the coproduction village, and we're moving to it, becoming a town and then a city, Um and then hopefully the world. And I do think that the feelings that you get from that are just immense I know that after meeting people where I don't have to mask my emotions where I can be the true and authentic out, um, it's just so refreshing. And it makes me feel so much better that I know that when I turned the screen off or I leave a meeting, I feel as I've done something good, my heart feels just warm. And it feels like I'm radiating, um, a light that are actually others Others are then drawn to and what's funny. And I suppose it's just something that I I've gone through. I don't know about other people, but I've noted that when I've met people and I've I've been able to kind of talk about co production or we've worked together in a co productive way when I when I'm going home, I was noticed that people seem to want to smile at me People that weren't part of the meeting, Um, and I think that's because I radiate something. I think you know, you radiate this feeling of approach fullness. People feel happy to be around you, Um, including the mood Hoovers, that sometimes you have to speak with, um But I get people in genuine distress who actually come up to me, and they look at me as as though they've seen almost like the Messiah, because they feel they feel that comfortable, itty But they also I think they feel what I'm feeling inside, which is a sense of freedom, a sense of release, a sense of just being able to be me, and maybe those people can't be themselves at this moment in time due to the pain and the suffering and the drama that they're going through. But when they come up to me, I just feel as though I'm able to pass on a small bit of that light to actually alleviate their suffering. And to think that actually, I'm I'm doing what my religion actually also tells me to do, of being able to actually, if you if you save one person, you have saved all of mankind Um, I felt as I've felt saved mankind so many times, and that feeling is just I I can't even describe that in words. It just feels as the one I'm doing my God's work. You know, the work that he sent me to do, I'm I'm doing it with others and you don't have to be a messiah You don't have to be somebody have that is revered. You can just be you. Um and I think those are the feelings that really make me feel as the co production values and once once from me and those are the feelings that I think resonate to me and to all the others that I end up touching through those feelings after a meeting, which is very interesting because I don't think you hear many people have those feelings after a meeting, and they were able to pass them on to others that are in distress and actually show them hope, be able to move the clouds that they suffer from with a small bit of air And actually, they could see the light brighter than you can feel it. Yeah, I just There are no words. There are no words so eloquent and beautiful, and I so needed to hear that today So thank you for for sharing that. So my final question is, um So what different do you think coproduction makes? I think it makes a world of difference. Um, in a lot of ways, I wish there was an evidence base and that everybody took a feedback from after after we did what we did Um, because I know that actually making a difference is is what ends up happening. People have a better way through services. They have a better way of being spoken to There's an inherent respect for people, um, which I think as a society due to kind of societal pressures and the way that we're all working and doing things, we don't respect that anymore from people. We don't respect people's time, and that is something so precious. And as somebody who does do co production, I value everything that I do and give it 100 and 10% knowing that, actually, I'm making a difference in those people's lives Um, and what's interesting is I have I have actually met somebody that, um, I did do something with And, um, this was a person that actually came up to me and said, You do And she actually said it in her own language, which is our shared language. And she called it Seva and Seva is basically serving people. You are somebody who serves people and to know that actually, she said to me, and it made me cry at the end Actually, it's actually drawing material from me now is that she said, I pray for you and I thought, Why? Why do you pray for me? And she said, because you do so much good in the world. But you never get to see it because I'm the only one that so far has given you any kind of feedback. And it's not your normal thank you It's something that you know, she she actively goes out and she I'm in her prayers. I'm somebody who has made a profound difference in her life. And she thanks me with every every time she prostrate every time she kneels to God, Every time she prays, I'm then her thoughts And for me, that is the highest form of thanks that I know I could personally ever receive. And to know that actually, that she has been affected in that way. How many others that I've never met before and probably will never be have thanked me for the service that I've given for co producing things Um, bringing people's voices that aren't allowed in those spaces, um, that are not wanted in those spaces. I'm helping support, try and always support them to bring their own voice in there. But I know that there are people that can't for varying reasons, and it's my job to actually bring their feelings and thoughts across to know that people are being represented Um, and I'm doing a good job and that their voice is not sanitised. It's not filtered. It said the exact way that they have said it that in itself, I know I'm making a difference, and I know those people are affected by the difference that I've helped create, and I like Like I said before, it's just a shame that we don't have any feedback surveys or anything that actually measures that, because if it did, I would feel I would feel just fantastic knowing that things have changed, that things that I've said and done have made the difference But I think for now I just have to accept that. Actually, I've done my best and it's up to them the powers that be the service, the people that helped facilitate to actually unfiltered and leave my message the way it is and actually pass it on to the next people who make those big decisions. That was amazing And thank you, that really made me start to like, well up. So I haven't got any more questions. Do you have anything you wanted to add to our interview? I suppose I just wanted to say that I really do want co production to be the way of the norm I think we can change hearts, minds, souls, um, people in general, through the work of co production I'm I'm never gonna say it's easy, and I know that there's a lot of talk about when I get told about co production. That is very messy. But I think if you for me, if you expect people genuinely you have curiosity You you want to learn. You want to meet new people, diverse people, people that, um, challenge your view of the world. Um, I swept My views are never fixed. They're fixed in certain things. And then I meet people and I talked to them re explore those feelings We explore my thoughts and then it automatically seems to change because I've met different people. I just think that I've become a man of the world, really, because I've met so many different people from different backgrounds. And although a lot of people now call me on the fence because I don't seem to have yes and no as my answers, I have been the grey with a lot of my thoughts I think it's really evolved me as as a better human being, and I don't think you could get that anywhere else, but through co production. So yes, it is messy, but it's messy for all the good reasons. It's messy, as in getting into a mud puddle and having a great big fun time just splashing in the mud It's not messy that you're going to get filthy and dirty, and it's going to take you, you know, a shower to clean yourself up. It's a fun messy, so I think words and language really do need to change around co production. Um, it needs to be what it is And I think we need to do a lot more, um, in the future to make things more accessible so that people like my partner who don't speak English at all. Um can actually join us, um, where my partner feels safe and wanted, um, and doesn't feel as though that they have to. They have to come back to me to actually earn that form of validation Co production in itself should be validating to people and should be helping people grow and develop. And I just think that we we can do that. But we need more of us to actually help make that difference And I'm hoping in the future that will happen. And if not for me, then for my Children or even for my future grandchildren, that knowing that, you know, we've been the pioneers in all of this doing this work that is never ending but always making a difference and always knowing that we've tried our best to make a difference in people's lives, whether whether we hear from those people or not. Thank you so much I'm gonna stop the recording there. If that's okay, that's a really lovely place to end. If that's the right review, Brooke, let me stop that, according