Andrea talks about her lived experience, doing coproduction in different contexts, and the opportunities and challenges it brings

So my name's Andrea Kelly and I became involved with the coproduction group, Um, because of my lived experience. Essentially. So I have Noonan syndrome. I was diagnosed with as a a young lady, a young, And I have a brother who has Down syndrome, who my parents had started fostering when when we were very, very young

And so we've always had social services involvement. So that was a big thing. And also, professionally, I'm a special needs teacher

So I became involved with it because of those lived experiences. And, um and it was a really fantastic experience to see how the whole process works and actually to see how the the group itself really wanted to involve everybody within it. People with lived experience, um, in all sorts of ways

So there were people that had disabilities, people from social services, people who were used to facilitating exercise and activity levels with people who had learning difficulties or physical disabilities. Um, it was really fascinating. Um, and what was a real pleasure and privilege for me, because I do like to talk is to be able to, um, support the facilitation of knowledge cafes so that the researchers could, um, really get an idea of of people's lived experiences and thoughts about the things that they were producing

Um, in order to support social services to develop training programmes and supporting people with, you know, physical and learning needs, um, to become more active. And it was really, really fascinating and really enjoyable. Yeah

What difference do you think it made for the people who were involved in that process? It was actually really, um, really lovely to see, because through So there are different ways we we actually spoke to each other, so there were in person webinars, Um, because of covid, we weren't We weren't able to meet in person. I think there were one or two knowledge cafes in person, but, um, so Webinars people were able to contribute to. But there were also lots of, um, emails and messaging systems in place, and the messages that came back after knowledge cafes happened, um, were were really lovely because they were talking about how empowered and people felt of being able to be part of the process

Um, that they felt was going to make a real difference to the lives of others with similar experiences. Um, and even to the extent of 11 member of the co production group, um has since decided to register with the open University to do a degree as a result of the direct result of the experience they had of being part of the co production group. And it was just yeah, just really, really powerful in so many ways

And, uh, it was a pleasure to be part of it. And to be able to see those things happening and and was this was this something was this programme. This was something that was co-produced right from the start

Was it with people? Yeah. I mean, I wasn't involved straight away, but in conversation with people about how things happened, Um, I know that there was There were there were people involved in the right from the beginning that weren't in academia, but, um, had lived experience because they they Either they got Children, um, that have got a special needs, or they actually had special needs themselves. Um, and you know that

So they were involved in the in the process of setting everything up. Um, and then they and then everybody within that that core group then started looking at their networks and seeing who they thought would be, you know, would be able to contribute, um, and reaching out to them and then vetting. Um And then at every point, once you became involved in the project, you were asked for your opinion

They would definitely listen to you could see some real key changes, some of them really simple and small, but were pivotal That would never have been there if if those people hadn't been involved, hadn't been asked about their lived experience. Um, I mean, one example I can remember that's quite far down the line. Um, there was a lady on the call who said, um, we've got some images that have been created for a different sorts of of disability and she said, There's nothing there about, um, hidden disabilities and and we and we Obviously, we put that to to the researchers, and, um, they were like, OK, great

How can we do this? And the lady herself actually went away and thought about how it could, how it could be done. And then we there were messages backwards and forwards, and the next thing we had this image that essentially she had visualised within the within the, um the the, uh, training programme. And it was It was absolutely brilliant

And that was just a really simple one word, you know, like one sentence comment that was made within within just a conversation that was really listened to. And and that was just a small example of the sorts of things that happened. Yeah, that that there's something There's something in that isn't there about, um because often I think people make those comments, but nothing then happens

So the fact that people felt listened to when something happened as as a result of it is is is a different experience for people. What? What do you think? Um, what do you think led to that happening? What's what was different? I guess. Yeah

So all the way through it was really evident. Um, how How skilled? I don't know whether the skills would be the word, but how much the the research has actually practised active listening. They would allow time for conversation

Then somebody sort of made made a pertinent comment. Everything was listened to question. They would then come back with a question around it, um, and and and not just think

Oh, wait. Now we understand this. We'll go away and we'll do something about it

And that was it. They would then consult, and there'd be a consultation process around the change that was made and it might be two or three emails. It might be

What about this image? And then the person might come back and say, Could it be tweet like this? And it would be done. Um, and we we've actually spoken about it with a couple of people on the coproduction group. People with lived experience rather than the researchers

And we've all said things along the lines of, um the lack of ego that the researchers have brought to it that they they were very, very, you know, the really practised. I don't know whether you practise it or it comes naturally, but some humility with it. So you felt equal

You felt valued. Um, and that doesn't always happen in any walk of life where you know that you know, if somebody feels are in charge and not always that great at, um making everybody feel equal to them. Do you think they felt as if, um do you think they felt as if they didn't? They actually didn't have to come up with the solutions themselves

And and sometimes like people, people you can think you can. It feels like people have got an ego or whatever, but they so desperately want to get it right for people that they feel like they have to come up with the answers. But when you can let that go, it's a very different

Yeah, it it didn't feel like they felt they had to be in total charge in total control. That it was, um it was definitely a very, um, I think I've used this phrase before in this context when talking about it was very egalitarian. Um, so, yeah, for sure it it it It it was about, um, not feeling like they have to come up with all the answers

The answers are out there and within everybody because, you know, like within the whole process. Although I've got lots of lived experience, I kind of never live my life as if I've got a disability. I just live my life, and you just get on with it and you don't think? Oh, you know

Yeah, OK, I can't reach a top shelf in a supermarket. That is a disability to some extent. Um, because I have to wait until someone tall enough comes along for me to ask them

Can you get that? Um, so, you know, I like the silly thing in comparison to some things, but I don't live my life as if I have barriers, even though they are there. So I never felt like I had the answers to this, but I'm sure neither did anybody else because everybody's experience is so different. So, you know, like, uh, you know, one of the people that was on the Co-production group was recovering from a stroke as AAA relatively young man and stroke recovery is different to the sorts of barriers that I would experience

It's very different to my life, so I would have no answers for the barriers that would be there in in in his life. But by the same token, he wouldn't have those answers for barriers in my life. So that's why it's so important

You can't know one person would ever have the answer, would they? It would be impossible and It's not just a thing. It's very evident that the researchers had that not just as an academic knowledge as a real genuinely understood. Yeah, this whole research could not have been done by one person, a small group

And and am I right in thinking the end of this was some kind of training programme or package? Yeah. Yeah. So it was, um the whole idea was a training package for social work

Students to understand how to support can't facilitate people with disabilities to become more active because the more active you are, the better health outcomes and mental health and physical health outcomes there are. So, um, and the research has shown that, um, different groups of people can have an influence on that one of those being social workers. And so it was the development we were all involved in supporting the development of a training package for social workers

Were there social workers involved in that as well, then? Yeah. Yeah, And that was what was great within the knowledge cafes when each so we'd split off into a little conversation groups. And within each thing, there'd be people that had variety of lived experience including social work experience or, um, mental health disabilities, physical disabilities, learning difficulties

There were people with that as sensory difficulties. Yeah, there was a variety of of people, um, involved in that, including social workers and social work researchers. Not just social workers

So and And in terms of the end, um, the end product, then the end training programme, the end package. Do you think that was different? Has that gone on to have a make it? I mean, was it different in itself? And what impact has it had? Um, it was different. So there were different iterations of the the training programme

So each time there was a knowledge cafe, the training programme was, um as it stood at the point, that point was shared with everybody within the Knowledge cafe. And then everybody would have a chance to look through it before the Knowledge Cafe and then we would discuss different aspects of it within the the the Knowledge Cafe. Um and each time, there were changes made to the programme as a result of the conversations that happened in the Knowledge Cafe, and not just those conversations, because not everybody could join the knowledge cafes

So everything was put back out, um, through a communication system and anybody was allowed and able to comment, make comments, request changes, comment on changes that were being suggested, Um, uh, and then review. And then the next time another knowledge cafe would come out, we'd look at the reviewed, um, new version, and it was like that went on until the end of the process, and then it was delivered. And I understand that it's been very well received and that they're actually looking

Now, we we had sort of meetings about where do we see this going? Is this the end of the project? So we see that it could go on further. Where would it go if we would want it to, um And so there was There were conversations with people lived experience about where would you like to see this Go? Um, and there were conversations about showing it with occupational That's producing, saying similar things for occupational therapists. Anybody else that could be physiotherapists, Um, medics of a very, very different varieties

Um uh, yes. So there were all sorts of conversations about that because one of the big problems is that people work in silos. So, um and this wasn't this wasn't that experience

This wasn't silos. This was people really coming together. How long? How long did it take? Um, do you know what I I couldn't tell you

It was months. It was months. Um, so I don't even know when it began

Began in lockdown, I think. Like, yeah, before I was involved. But I became involved during lockdown

It's a quite quite a long time. Um, because often you hear people say, Oh, we haven't got time to do coproduction. Um, but what you've described is is, you know, the investment of time is is worth it

Yeah, it it really was. I mean, obviously, the only thing that will tell whether it's worth it is whether in the long term, And I mean long term that the training programme has an impact on real lives. Um, whether it has an impact on social workers practise

Um, that's the only thing that will tell, um, but from my feeling of being a participant in the project, um is that it was incredibly positive, and everybody that was involved in it came away feeling This is really great and we can make a really huge difference. And we really invested in seeing where it goes. We've been given the opportunity to remain involved and and keep in contact

And the majority of us have said yes, please, because we want to know where it's gone. We want to know what's happening with it. There's something about the accountability in there, then isn't there

It's like you've developed something you've invested, you know your heart and soul into it. Quite literally. What at what point do you get to go back and ask people, How is this working? What are you doing with it? Yeah, so and And we you know, we get emails from them

Still, even though the project is like that, that portion of the project is over. We're not involved with, um, with sort of, you know, the, you know, they'll probably email us and ask us if we'd be, like, like to be involved with with further projects should they come up, um, from the same thing. But that will I'm sure that will depend on funding whether they get the funding to move other things forward

Yeah, Yeah, always the funding, but they're going to spend it on something else. That's maybe not quite as Yeah. Yeah

Um, yeah. Um, yeah. I might call that bit out

Might not. Um, So is there Is there anything else that you would like to, you know, share in terms of that experience? Um, I'm not sure. It's just that I really enjoyed it, and I and I and I know that it even, right it will have an I'm I'm absolutely convinced it will have an impact long term, but even if it didn't have an impact long term there, it certainly had an impact on the people taking part


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