Syeda shares her experience of coproduction in mental health services and importance of including people with mental health challenges in not only coproduction but assessing the quality of those services, also talks about creating a voice in a platform for others to share their lived experience!
and then they put you on. You want to introduce yourself? Hello, everybody. My name is CIDA, and I am a lived experience person who has been working on research for a very long time. Um, yes So a lot of experience behind the service is seeing it firsthand, and then obviously seeing it from the other side of doing audits and things like that, getting involved with interviewing to see, we have the right people in the right place, Um, and pushing really the co production forward as much as we can. So, yeah, that's me. Thank you What is the value of, uh, co production to you? It's everything. I mean, for me, it's the fundamental in when people start to do any type of research into the services or how it impacts the service user or the person using it without the voice of the people that are actually using the services. I mean, there is no point in doing the research You're kind of going in there blindly not knowing what the problems are, what the gatekeeping processes are, what the barriers are for these people that are facing the service is being used at the moment and I mean, a lot of a lot of research projects have come a long way. They are introducing coproduction quite early on, but still, it's not from the start. You know, people come in with the idea already in their mind and what they want to do research on they come and pitch it to you Then they ask you if you think it's a good idea and you know, at those meetings just sitting there thinking will actually know the starting point should have been this, um so, yeah, I mean, it is to me, is fundamental to all types of research, and we are really trying to change mindset of everyone around that. What are some of the blockages to changing that mindset? I think for me it's personally having the same level of respect as people involved in the project. So, you know, you've got the professor's, you've got the researchers, etcetera, but it seems to be very token mystic at the moment Um, with all the will in the world, some of the researchers really trying, you know, they really do treat you as an equal, but fundamentally when it comes to sort of pay, for example, It's not para Tiv compared to everybody else. Um, it's not thought about. I mean, I was in a recent project and you can vouch for this where coproduction wasn't even feeding into it It was just an afterthought in the project. And, you know, we had to kind of stand our ground and say, Well, no, you asked us to get involved. We should be paid in that respect But it doesn't seem to feature in the plan for research. People do the plan. And I think, Oh, suddenly they realise to get the funding they need to have co production, they need to have services, a voice in there, and suddenly they will make up an activity to kind of get the funding, and then it's dropped off again So you know, it's it's going to take a long time, but it is going in the right direction. I know a lot of people are trying, but it's still not right. If there are, what do you think needs to change to, to make it um, kind of equitable? I think researchers need to be told from the onset that we need to have service users and patients involved in the research So we're talking even before they start planning the research. So if you think for for somebody who's just coming out starting to do a PhD, for example, they have research projects, it should be drilled into them. Well, I'm going to start the research project, but I should from the start, have somebody could produce this with me So even the idea of research needs to be co produced. Only then can you value the person, because alongside that, then you'll have them involved in the whole process of research, whether it's doing the actual research, doing the research itself, looking at the results, quantitative, easing it, etcetera and writing the papers itself. But again, it's value based, isn't it? So how much value do you put on that person to be involved? What, are you going to pay that person to be involved? Are you going to treat them as equal as an academic doing that research? There's a lot of lot of sort of rules and regs people have put in place that I don't think need to be there, um, is easily done, but for some reason it's not and funding is a big issue I mean, we talk about it all the time. When a research project is sent for funding, there are certain criteria they need to hit. And sometimes there isn't a big budget for service users being involved So why can't they be named as co applicants or co researchers, et cetera? To get around that, I just I don't understand it, but working towards it. Okay, thank you for that. I'm wondering about Has your own behaviours or perceptions changed as a result of you co producing? I have become very sort of, uh, come away from it a lot, to be honest, because in the beginning, I guess when I was on my journey to recovery, every everyone said this to me They said, Oh, sorry to this will really, really help you In your process of recovery, you'll get to being, you know, normal again in terms of, you know, getting out and about doing a 9 to 5 and all of that. And I thought OK, yes, I do want to get those skills sets back that I've lost during my breakdown. So I got involved and I got involved I think over enthusiastically. So I didn't value my contribution. I just valued what other people said about my contribution So I just let it be. I just continued working without sometimes getting paid voluntarily. And I did that for a number of years until it got to a point where I suddenly realise, actually, the value I bring to the research and the project is as much as the academics carrying it out So I should really fight for better pay, better conditions. Um, but obviously it became a very sort of back and forth, back and forth with the people trying to get the reasonable pay, and it just became sort of a priority to me. What do I prioritise? Do I prioritise my head? What do I prioritise fighting for something and a certain way down the line? I just lost the fight I just thought, you know, Well, I'm just at the onset when people are asking me to get involved, I'll just wait up at that point. Is it worth me doing this project, this new medication? If it isn't, then I'll just not put my hand in for it. Um, but I think there is a lot of people out there that do get involved, they don't realise they're getting involved without being paid appropriately And there is a culture of that because, you know, a lot of people will just say, Oh, if you do this, you get more involvement in this and so forth And it is it is sad because I think it's very token mystic, you know, from some recent some people's point of view, and that needs to change. You know, we are, We are humans, We all have value and we need to be equally valued. And a lot of it is around making sure everyone's involved You know, we're talking all ethnic backgrounds. We're talking L G B T Q plus. All of that, and I find there's a lot of hurdles sometimes even with people trying to get involved from those backgrounds And I really think it's unfair because that we are the people using the services. We are diverse, so we should have a diverse makeup when it comes to research and our opinions being heard. But a lot of it isn't like that moment, and, you know, we've been doing research for what, 10 years plus now how much has changed? Really? You know, and it is disheartening We plod along, we still plug at it. We still say no. Even if we make change to one particular type of service, we've done good, so yeah, not giving up yet, but it is disheartening So you've talked about sort of lack of respect about the knowledge you bring. Um, I know you're very passionate about diversity and and talking about co production, often being a very white space. And you've also talked about sort of like still doing this So why, despite all of that challenge, do you still do co production? I think for me it's thinking about the people that are coming after me, you know, that are just starting their recovery process. And there are passionate to see the services be in the same way that we are. And I think to myself Well, it's taken us 10 years to get to this stage I want to leave like a stepping boundary for the people behind me. So when they do get involved, they're not starting from scratch. They hopefully are starting from the place we have left off And that's why I continually do it because I do think a lot of people don't like. They come in with the intention to speak up and say things, but they become so paranoid and so sort of disillusioned with what's going on in the meetings that they forget. They have a voice Sometimes I've been to so many meetings where people are just quiet throughout the duration. They won't say a word, and I think I know this person personally. They have a lot to contribute They have a lot to say. Why aren't they speaking up? And it's that culture I want to change. So if I kept, I am sitting in a meeting and I'm the loud one that's fine as long as it's encouraging other people to be as loud as me because I think that's what's needed, not a revolt But you know, not a revolution, but just a point of of notion to speak up, you know, because I think we've we've silently let things get away, people get away with things and I think it's time to change all that. I haven't I mean, the one thing I have protected myself from is going on the boards. I haven't got the heart to to go visit or go see or do any audience and things like that anymore, because I just it just really upsets me that I don't see the changes, so I I don't do that anymore, But the background stuff, the research and all of that, at least I'm doing it but at arms and I am keeping myself from harm But I am still trying to change a bit of it as much as I can. So yeah, that's why although the other reason could be totally mad. But we are totally mad, so, so powerful, having to manage the harm in coproduction Just that just took me to a place of yeah, we're all trying to manage that harm that is, continued their someone to help, um, sort of like, What impact do you think co production has? And unlike individuals, organisations or society generally, I think when when they realise that the research is coming from the heart of the people and I think that's what co production does is kind of giving that tagline is coming from us. It's not coming from an academic is not coming from somebody who's looked at research, and so we haven't done this research for a while. It's really coming from people that realise that certain aspects of services need changing And those are the areas we need to focus the research on because a lot of best practises and things like that don't get changed unless this research behind it, which I never understand till this day because some of it's just common sense to me. You know, Um, but things won't change unless there's a There's a research paper behind it. There's, you know, there's evidence that it works, and sometimes I have to sit there and remind myself this is required for the science world But the human inside me is thinking This is not a genius work. This isn't rocket science, you know, these are steps that could be put in place without having to go through the tramadol of, you know, doing five years of research. You know, it just doesn't have to be, but unfortunately, it's the way the processes and we are having to kind of go through those barriers Um, but I would like to wake up one day and realise people have got together on award on a mental health unit and said, We don't like this. Can you please change it? And it's just done. It's not, you know, wait five years for somebody to research this, come back with us and then we'll do it Um, I don't know What to say is, if is there is a lot of harm, but I suppose there is a lot of good as well coming out of it in terms of people realising that patients or service users or people with lived experience actually have a knowledge, a lot of knowledge to share, and that knowledge can be turned into best practise and future research projects. But if we're gonna get to an equal base with that, at some point, I don't know, you know, that could be another 10 years. There could be another 20 years, but slowly the waves are happening Um and yeah, we're just kind of plodding along to it, but it is hard work. I have to say, because sometimes you're sitting there and you're thinking God, you know, we're making sense. You know, we're saying the right thing, but for some reason you won't just won't do it so we were kind of clinching Are yours And But, you know, as long as even one person or one service looks at it and says, You know what? Co production is really valued. We want people to do co production because it's giving us the outcomes we need. That's all we need And you think people can get to the outcomes needed without co production? No. And that's not because academics I'm not saying academics don't have an idea of what's going on with the service. Absolutely, do they have all the knowledge in the world? But I think personal experience of services speaks differently to a doctor's experience of a service or a consultant's experience of a service They're seeing it as an overall picture for all the patients on the ward and what needs to change, but not on an individual base. And I think that's the value of co production because you're coming from an individual base. But you're also then kind of drawing on experiences of people that you have been on the wards with what they felt and what they're feeling and experiencing So I think it's completely different because they've got the academic hat on. They kind of missed the personal touch. And I think that's what coproduction brings It brings the personal touch So, you know, somebody could say, You know, best practise on the board is nine o'clock in the morning. We're gonna wake everyone up and get them to sit in the in the room and talk about how they're feeling. But that may not be best practise for the patients on the road Somebody may not be able to get up at nine o'clock in the morning because they've had a really bad night. They want to sleep in. But yet they won't be allowed to do that because it's become a practise on the board So they have to get up alongside everybody else. Or some people are not comfortable in the group environment to speak up. So they would rather have that talk 1 to 1 But again, best practise is to have a group environment, so that's the best way I can describe it. Um, for academics. I mean, I know from the ones we have worked with, a lot of them have said after being involved, that is completely changed their mindset, because they've never thought those things and that that's the kind of thing I want to hear I want them to kind of experience what we are going through rather than the table. They're coming from really, really powerful. Thank you So I'm wondering what you would tell to what messages or what? What would you tell people that don't really co produce? Or what would you tell those academics that you've spoken about? I was like, You're missing out, right? No. I think on a serious note, I think What what they realise. What they need to realise is that research can be so rich and it can be so useful and so powerful You know, if research is done right, which some of them have been in the past and they have come out with brilliant best practises. Um, and look at the outcomes that have come through them. You know, the violence change and all of those ones, you know? So I think it is really, really important for researchers or academics to understand if you do the research right and you get the right people involved to get the right background experiences, you, co producer with people who actually have used the services can tell you about how the services work, what the barriers are, what the expectations are from a person going through those services and what's not being delivered, and the harm that the services are causing the delays and all the barriers that we have And I think just I mean, there's so many things that can change a service, so many things and it has. It's just tiny, tiny things, but they make a massive difference with the overall performance of that service. Once researchers get their head around that that that kind of level of acknowledgement and background info can only come from someone who's actually been through it and actually is going through it and using the services, they won't be able to get what they need out of that research And I think so. Some some, most of them come in so passionately into doing the research. I mean, the passion is there, but they're missing that little thing of I need to get somebody to co produce So I can really understand what I'm researching because the end product is us. It's the people who are going to use it so whether you come up with a shiny new mechanism of services, it's useless unless the people that are going to use it actually think is a viable and good option to use. Or it's useful and will help them along the way And that can only happen if you have people with experience helping you along the way. Thank you. So I have two final questions One. How does coproduction make you feel personally and the final one would be Have you got any top tips? How does it make me feel? Actually makes me feel really proud that I'm actually doing something to help people and actually changing the way of how services think about the service users and patients, Um, and obviously for the future generations. Because, you know, when we had use of the service, it had changed and then we came along We made some changes to it. So now the future generations of the people using it currently are actually getting value from the changes we've input. So for me, that's the big fundamental thing Um, stop tips really is to only get involved if you want to get involved, because if you don't have the passion for that particular project that there's no point because you're going to feel undervalued. You're going to feel like you haven't spoken up in majority of those meetings, and you're really not gonna think you've shaped anything at the end. Pros and product Because remember, all these projects are not want some summer, like five years long summer, two years. Some are three years. So you're waiting a long time to see the end product, and sometimes you know you'll do the first six months of research, and then suddenly it stops You won't hear anything about that project until the end. So you know, is about longevity in these projects. But it's also about your passion If you're passionate about an area, then get involved. If you're not, then don't and make sure you valued like the monetary side of it. Make sure it is what you expect to be paid Um, I know there are difficulties because some people are on different benefits and all that, but there's no reason why you can't be paid in vouchers, for example. You know things like that. So take up those options, Um, and don't lose the passion to speak up because you know, no matter what you're thinking in your head, if you're thinking, Oh, I shouldn't say that just say it It's not about hurting people's feelings. It's not about anything. It's about making sure that you are there to help shape that service and shape that research So just speak up and fundamentally to treat everyone as a human like Just stop thinking that doctor is anything special or that consultant is there as a human as you are, so treat your peers or your people working with you as humans, and you will be fine and that project will be tremendous. But if there is a hierarchy of power, that's when it goes wrong, because you should all be on equal base when you're speaking. That's what I've learned It's taken me 10 years, but I've learned that thank you very much. I'm going to stop the recording. Their Let me Is that okay with you to stop? Of course. Um Then stop.