Amy and Yvette share their living and professional experiences of coproduction at Parkinsons UK

Bye. Mhm. Yeah, right. So, um hi

Amy and Yvette. I just gonna invite you to introduce yourselves and then talk to me about your experience of coproduction. Hi

Um, I'm Amy. I am the user researcher of Parkinson's Connect, Um, and have worked across, uh, cosign and, um, user research and co-production as well. So and I'm Yvette and I am the service user involvement coordinator of Parkinson's connect and work very closely with with Amy on co-production involvement

Um, and I'll hand back to Amy just to give a brief introduction to what we've been doing. Uh, thanks for that. So Parkinson's Connect is the name for our information support services at Parkinson's

UK. Um, over the last three years, we've been undertaking a service transformation project. Um, because our current services can't meet, uh, the growing demands of people with Parkinson's as more and more people are going to get diagnosed, and so it's just building on our existing information and support services, but allowing people to access information in more, um, and different ways

Um, so it will include our advisor service, uh, our website, uh, the forum and lots of different things that we've designed and, um, are going to be delivering based on our research. Um, and designing with people with Parkinson's and their families. Um, so we've yeah, taken a quite, uh, broad approach to this

We went, um, and did lots of, uh, in depth interviews and ethnography to spending time with people in their their own surroundings to kind of understand how things might actually work in reality. Um, yeah, loads and loads of different research with people. So today we've probably spoken to over 300 people with Parkinson's and their family members, 1 to 1, and then we've had lots of other ways of involvement

So we've looked at, um, lots of website analytics, et cetera, and the forum and social listening. So, yeah, lots more people have been involved, but probably about 301 to 1. And then most recently, our kind of significant thing has been, uh, forming a cosign group

So this is made up of people with Parkinson's and their family and friends. Um, so that when we were working on different elements of Parkinson's connect, we weren't doing this, that in our well on zoom now, um, but we were doing this with with the people that were going to be using our services is making sure that we were really kind of getting this right. Um, and I think one of the things that's worked so well about that is, uh, we were really lucky to have support from an agency, uh, to form this group

So they did, uh, lots of targeted, but lots of social media, um, promotion and reached audiences that we might not normally reach. Um, so we had fresh perspective, perspective and voices in there as well as people that were really connected to Parkinson's UK already. So we kind of got both sides, the staff, the people that knew our traditional information and support services and people that came not really knowing what we did at all, um, and could kind of challenge in in different ways

Um, so I think that was kind of yeah. Really, really useful. Um, is there nothing to add on that it, um no, I think you covered that

That really well, I think the other point was that, um this is the first time that we've actually involved family and friends in what we're doing as well. So that was a big change. Really

Um, and a big part of the new service. Yeah, definitely. It's been quite a shift in culture as well

Hasn't it across the organisation to kind of really recognise that we are there for people's families and friends as much as we are for the person with Parkinson's? And I think the other thing is, is what I was gonna say was that the way we work is is quite different. We work in, like, an agile way, Um, with the so a lot of the work that we did we've done has been, you know, quite intense bursts of activity. So that's another thing that's different about what? You know, the way we work

Really? So from your perspective, you've, you know, involving people with, um, Parkinson family and friends. What difference? Um, do you think that's made well, I think you know you can't plan an information support service without involving people. The people are going to use it, Um, and, you know, actually understanding the journey that they go through from being diagnosed and and onwards

Really? And what kind of you know, support? They need what kind of information they need, um, so I think it's made a massive difference because as Amy Amy said at the start, we've evolved people throughout the whole of the process, so it's not just being could we have feedback on this leaflet? It's It's actually we've actually, you know, been involved them in, you know, idea creation. Um, we've involved them in developing prototypes and use of research, um, in usability testing. So throughout every stage of the development of Parkinson's connect that, you know, users are at the heart

Um, does that make a difference? Then has that changed the the kind of information and advice that Parkinson's maybe was giving out before to how it is now? Has it changed much? I Yeah, I think absolutely. And I think this, um, can give you, like, practical examples of of things that, um developed during the pro project. Um, and what we've tried to do is all the suggestions that come through our code design sessions

We've incorporated into the profile what we call the Parkinson's connect profile. Um, and and I think one of the biggest things was actually identifying the journey that people go through and that it's not a linear journey that it's a process of struggle, cope, manage. Um, And within that, you know, we want to be able to give people, you know, the right the ability to access information in the way in the way that they want to Whether that's online, um, through, you know, through a telephone call offline so it covers, covers everything, Really

I think the other thing that, um, it's highlighted is you know what? What topics are important to people? Um, for example, one of the sessions looked at symp Parkinson's symptoms. And what we did was, uh, quite a creative session where we asked people to draw their symptoms. And obviously some people weren't able to do that because, um of symptoms like dyskinesia, which, um is like an involuntary movement that people have with Parkinson's

Um, so we learned a lot about different ways that people want to be want to be their preferences for communication. And, um, we I could go on. I mean, there's there's so many examples that came out

I mean, 11 of the the bigger things was initially we we called the Parkinson's connect, um, account, if you like an account and It's something we didn't think of. But a lot of people came back saying they didn't like the word account because it kind of people thought you might have to pay for it. Um, it was a bit scary to sign up to something, so we called it a profile

So that was 11 example of of, um, How things changed. And I think that or involving people, it's also helping them to address things like another example would be, um, at a guidance document about talking about life, life ahead. And one of our cosign members hadn't spoken to her husband about life ahead at all, ever

Um, and she found it very useful because it made her stop and think and start thinking about you know what's next. And, you know, to kind of help relationships because, you know, when you get diagnosed with Parkinson's, it's a very stressful and confusing time. And it's not just for people with Parkinson's

It's also their loved ones. Um, so I I could I could go on, but, um, I'm gonna stop there, Um, because I think it's made a huge difference, you know, and not just within our our team, I think within Parkinson UK as a whole. It's kind kind of highlighted the profile of US involvement co-production code design

Um, and you know, the way the whole whole of Parkinson's u UK involves people in what they do. So it's It's quite, you know, it's very exciting that, you know, that that's been developed. And, you know, we're really passionate about that, aren't we, Amy? Yeah

Playing the old flag? Yeah. So, yeah, when we were chatting earlier, um, you you kind of, um, said you've been given some thought to the things that had worked well or not work so well, so do you want to, um, tell me a little bit about some of those things Amy, do you want? Yeah. Um, yeah

So we have used, uh, something called base camp. You heard of it? Um, and kind of put everyone on there, and it's created quite a sense of community. Almost, Um, and people have I've been able to kind of share things just like what they're up to and like, things that they found out about Parkinson's or things that are totally irrelevant to the Parkinson's and are just interesting in life

Um, and it's created. Yeah, a bit of a kind of community, and it's made it. And when we kind of come into sessions, then everybody kind of feels quite comfortable

Um, it's created quite a nice environment. So that, um, yeah, we've really tried to create the space where people feel able to have different opinions and challenge each other. Um, but obviously, respect kind of the differences

Um, so that's worked really well. We found that really, really useful. I think the other thing that we've found that's worked, um, quite well and useful is that we've when we've run a kind of a workshop or a session, we've opened the room up 15 minutes before it starts so that people can come along and just have a chat and a catch up

Um, partly because that's a nice kind of yeah, opening. And you feel warmed up and comfortable also, partly because otherwise we'd just do it when it started. And we wouldn't fact at the time in, um so yeah, it just makes people kind of feel settled and comfortable

Um, I think another thing that's worked really well is kind of flexibility, so sometimes we've done a session where we, uh yeah, prototype together or, uh, kind of bounce ideas off together. Um, and we've brought in kind of the right people from across the team to be in that. So we're kind of making those those decisions and doing that there

And then sometimes it's been, um, or we just really need to kind of understand this messaging, um, around something. And people have kind of Yeah. Got involved in different ways

Um, so we haven't kind of, you know, really stuck strictly to we must, like copro produce and coign everything we've kind of worked work to kind of what's gonna fit, Uh, the situation best and allowing ourselves to feel OK with that. I think, um, a vet and I, like, strive to make sure that people's voices are at the forefront of everything. Um, but we kind of understand the limitations of the real world, and sometimes that's not possible, So yeah, Feeling OK? Feeling OK with that? Um, I would say it worked

Well, I feel like sometimes we don't feel ok with it, but, um, yeah, trying to make ourselves feel ok with it. Um And then as I touched on earlier. The kind of recruitment process I think worked really well

And we got really kind of good mix of, um yeah, experience and connection to Parkinson's UK, which I think is kind of really driven us forward. Um, and got those kind of different voices in one place. Um, so, yeah, I think, and obviously all the kind of things that that just mentioned around the impact that it's had, um, on our work

And I think, um, as a team. So we're part of a multidisciplinary team with product managers, service designers, content sign, um, all sorts of kind of Yeah, different skill sets. And we've really embraced

Embraced this as a team. Not just kind of a vet. And I pushing for it

People are like, OK, how do we How do we do this? How do we get people involved here? We need to think about this. Um, so, yeah, having kind of the whole team on board, I think has made a big difference as well. And And have those team members then been in the sessions been part of basically sort of been part of relational side of it as well

Yeah, totally. Um, so some of them are in base camp, but not everyone, because it would just become a bit unmanageable. Um, but say we were running a session around the online profile

Yeah, the product manager would be there. If it's related to content, the content person would be there. Um, sometimes we just have, like, team sessions where the whole service design team are there, and we just invite people in

So everyone kind of knows who those people are now. Um, which has been Yeah, which has been really good. Do you Do you think that's changed the perception that's had an impact of people working in the organisation then to see their job differently? Um, um potentially, I think, because we're quite we're probably quite I don't know if it's unusual

Um, but we are a service design team that's kind of seconded people in or created roles within the team. So we Yeah, we do work outside of our direct team. Um, but the people that are mainly involved in in this, uh, we're all just yeah, sat in one team, Um, seconded

So we don't kind of Yeah work too much outside, but people definitely are. Yeah, would be taking that back to their other teams. Um, I think I might be the only one who's permanent in in this, you know, this role, which is Yeah, good for me

Yeah. And and that's reassuring that you're the one that's permanent in all of this. Yeah, I think like with what am just said as well, um, I think it makes a difference having somebody in the group who has got Parkinson's because one of the key messages we got was that people wanted to speak to people like them and, you know, having that empathy

Um, you know, an understanding of what it's like to live day to day with an incurable neurological condition. The ups and downs, the good bits, the bad bits. You know, we we're actually the park's community is is quite a positive group

Um, really, Um, but it's also taking into account things like medications. Like I've just take taken my 11 30 med because I can feel myself going off, Um, because the medication only works for a certain amount of time. So a lot of people have, like, other issues like dyskinesia, dystonia, speech, um, issues um, people use technology, obviously typing

We we have to think about activities that are going to be accessible. Um, so yeah. So I think having somebody on the on the group, if you like who Who understands all that

Um And, you know, it also raises awareness for the whole team about not having two hour meetings, for example, Um, and yeah, you know, making I think it's called reasonable adjustments. It's the terminology. But for me, it's about making people feel comfortable

Part of the community, you know, um, all that, that kind of thing. Um, yeah, yeah, I think I think that's the key to it, Really. About building relationships and and having, you know, empathy with we've got what it's like

Mhm. Thank you. And And what have been some of the challenges then that you've faced? Do you want to see challenges of it? Um, yeah

I'll, um Let's just have a look. Um, yeah. I mean, one of the big things for me was having the right tools to to booking in schedule workshop dates, um, and sessions, because that can be really, really time consuming

And there's a lot of, um, coordination involved and, you know, people with Parkinson's aren't particularly known for their coordination skills. So, having like something like, um, you know, a booking tool, a calendar tool and something a way to to kind of have a workflow around that. But that's easy, Um, and resorting not, you know, not just using online tools a bit

Resorting to that, that old thing we used to call, you know that that kind of like Red Square thing. Oh, it's called a phone. Yeah, actually picking up a phone and calling people, you know which, um, that worked worked well alongside having the right tools to book and schedule things

Um, I think one of the issues we had as well was about engaging people who are working full time, especially with family and friends. Um, and we want to. Part of what we're doing now is looking at asking people's interests and preferences

So it might be, you know, having shorter sessions or, you know, actually asking them what what they want to be involved in and how much time they've got to do that. And and also capacity, you know, um, because, like I say with Parkinson's, your energy levels start the day, go up and down. You could have a bad day

You could have a good day and we're not in control of that. Really? So I think one of the other things that didn't work so well was kind of last minute recruitment, Um, for user testing. Um, I think that that's something that we're gonna be working on

Um, like I say to have, like, a pool of people that can draw on. So everything's not so Last minute split to to time in with the way that our developers developing things, um, I think that that I think I'm talking too much. But I think also training on zoom and service design and code design methods

I think that's something we could improve on. But it hasn't held us back because, like I say, we have used different ways of communicating with people. Um, you know, and I think also feeding back on the changes that the impact that people have had on how things have developed, I think that's something that we haven't been brilliant at

Um and it's some something that we could improve on this year, and, um, yeah, they're not. They're not really negative. They're just learnings, Really, you know that? And it's something that, you know, we we're building on this year to to make it a better experience for people

Mhm. It's a constantly changing thing, isn't it? That's what I'm picking up, and you you're learning as you go. Um, yeah, and I mean, involvement is a massive thing, isn't it? Really? Because, you know, and then within that you got coproduction

It's like code design. You know, all these different terminologies, and it's like at at the essence, it's it's, um, making sure that the people who use the services are involved in designing them. And whatever it's called, we don't care

You know, that's the the key principle. Really. What? What do you think are some of the things that make the biggest difference? I know you talked a little bit about base camp, um, and and how that's used, Um, and one of the things that kind of jumped out to me was was how people were relating to each other or the space that you built for people to connect as people within this

So it's not just about what you're doing, it's about the people and about the connections and relationships with each other as well. Is that something that you think has made a difference? I think so, because I think base camp, because it's like a forum, a mini forum, just with a small group of people. Um, it's a lot of chat and a lot of, you know, in in the threads and, you know, people wanting to connect with each other

And I think that's something that we're pulling into the whole of Parkinson's connect as well, you know, linking out to social networks and groups and the forum, um, you know, to replicate that community feel Really, Um What do you think, Amy? Yeah, completely. Yeah, I completely agree. I was also going to say that, um, we know that there's so much information out there, especially when people are newly diagnosed and kind of, um, I'm sure I hope that will agree

And the image of Parkinson's is like an older an older man. If you type it in, Um, and that's not, you know, particular case, like, obviously we're there to support older men. Um, but there's a lot of people that that kind of don't relate to it

I think, um, people wanting to change and like, make other people's experiences better, um, so that they don't feel the same as them when they google it and they think, Oh, my goodness, what's going to happen to me? Because it's just not like that, Um, but that's kind of the image that's that's out there and perceived. Um, and a lot of people want to kind of get involved and and help help change that and help help make things better for people. So I think building that community alongside people, really wanting to help, um, and make things better for others has kind of together made it work really well, yeah

And I think the fact that people, you know, whatever you can contribute your your voice is is welcomed. Really? Because we've had some people who are better at, um, getting back to us on in certain ways than others. Um, and I think that I mean, the other thing I wanted to say was, never underestimate a person with Parkinson's, because I think, you know, we we come both with lived experience, but also a background

You know, we're human. We're not just park. And I think that's represented in in the group because we've got people with young onset dementia

We've got, um, mix of different eth ethnicities, and we've got young onset Parkinson's, which is very different from, you know, later stage Parkinson's. So we've really worked really hard, haven't we, Amy, to make make that group as representative as as we can in terms of the Parkinson's community. I think that's one of our I wouldn't say learnings because it's something we've always wanted to do

But one of the things that we're really wanting to focus on as we kind of move forward now is that really going on like an asset based approach? We're not approach because everyone's welcome and everyone's voices is welcome. But if someone comes from a marketing background and they really want to support with marketing, 100% get involved in marketing, like if someone's really not, even if they've got experience in experience of it, If someone's really interested in, uh, advocacy, then yeah, get involved with that like we really want people to be able to be involved and and like designing and giving their their kind of, uh, skills onto the things that are of interest to them, not just of what we think is of interest to people. We want it to kind of, yeah, flip around a bit, to be driven by people with Parkinson's and their families, which is something we've always wanted to do

We just haven't quite got there. I think, Yeah, and I think that's that's like, I mean, Park Parkinson's Connect itself is personalised service, because when you meet, if you've met one person with Parkinson's, you've met one person with Parkinson's. Everyone is different

You know, all the different symptoms. Um, somebody said once that we like snowflakes, and, you know, we're all completely unique. So I think you know, that's that's part of it

You know as well. Now that's that's really encouraging that that sense of wanting to build the community based on what people bring rather than what you think you want from it. Um, so, working with the strengths and the skills of those who, um, who are part of that community sounds very exciting

Yeah. Is is there anything else you want to add? Um, before we formally close the recording part. Not for me

I don't think that anything else? No. No. I just think it's great that the coproduction collective are, you know, highlighting of this best practise that so we can learn from each other

And, um yeah, I hope you found you know what The work that we're doing. Interesting and useful. Yeah, certainly

Right. I shall stop this and then.

Comments
CAPTCHA
Diese Sicherheitsfrage überprüft, ob Sie ein menschlicher Besucher sind und verhindert automatisches Spamming.