Report transcript in: Amy and Yvette from Parkinsons UK Share their Value of Copro stories

Please Report the Errrors?

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.

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,

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?

Yeah, I think absolutely. And I think this, um,

can give you, like, practical examples of of

things that,

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,

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,

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,

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,

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,

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,

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

this.

Yeah,

I think like with what am just said as well, um,

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.

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.

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,

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

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Post date

08/06/2022