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Report transcript in: Andria shares her experiences of being involved in coproduction
Please Report the Errrors?
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.
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.
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,
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.
What difference do you think it made for the people who were involved in that
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,
were were really lovely because they were
talking about how empowered and people felt
of being able to be part of the process.
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
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?
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.
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.
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,
That would never have been there if if those people hadn't been involved,
hadn't been asked
about their lived experience.
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?
what do you think led to that happening? What's what was different?
all the way through it was really evident. Um,
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.
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.
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.
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,
I think I've used this phrase before in this
context when talking about it was very egalitarian.
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?
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,
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
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?
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,
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.
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.
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?
and there were conversations about showing
it with occupational That's producing,
saying similar things for occupational therapists.
Anybody else that could be
Um, medics of a very, very different varieties.
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,
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.
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.
What at what point do you get to go back and ask people, How is this working?
What are you doing with it?
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, always the funding,
but they're going to spend it on something else. That's maybe not quite as
yeah. I might call that bit out. Might not.
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
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.