Report transcript in: Value of Coproduction

Please Report the Errrors?

put you on the call.

so shall I. Um,

do you Do you want me just to answer the questions directly, or do you want to give me?

So do you want me to give you some context of what I'm talking about?

Yeah, A little bit of context is good. Thank you so much. Yeah, that's all right.

So are you gonna ask me questions throughout?

Um, I'll prompt you if you need prompting.

OK,

OK, so

the, um,

the project that I am talking about is called a diagnosis support pack,

and it's a project from a beer

and Luton.

Um, community health services

and as a community, Children's health service. One of our, um,

big parts of our service is diagnosing, uh, neurodiversity.

So a DH d or autism in Children

and as part of my role, um, I work as a co-production lead.

I work together with, um, lots of families and young people and parents.

I look after all of our service feedback,

uh, do lots of engagement out and about in the community.

And one of the stronger themes that was coming through was people, families.

They build up to having this um, diagnosis of a DH D or autism takes a long time.

It's a lot of process to have that assessment.

Um,

and then they'd have the diagnosis, and they think it would sort of change things.

Um, but it doesn't. It's It's just it's just words on a piece of paper.

Um, and their feedback was that you know what happens next.

And actually, when you have a diagnosis appointment with a doctor, you know,

our paediatrician Fantastic.

Um, but they don't They they can't change the everyday experience for that child.

Um, and I think that's what families sort of were a bit disillusioned about.

So they wanted to know what happens next when we have this received this diagnosis.

Um and so we pulled the little project group together,

which had parent representatives and clinicians.

So some of the paediatricians and some of the

other very talented sort of specialist nursing teams,

educational psychology.

We had a bit of input from some local, um, stakeholders.

So autism beds is a charity, for example, that, um,

support Children in the local area of neurodiversity.

Um, and we sort of, um

came together and we had a really, um fantastic. Um, discussion about what?

What we would need to achieve and what we could

produce and how we might go about doing that.

Um, and the outcome of that was, um, a sort of one big,

all encompassing diagnosis support pack.

Um,

it was going to be hosted online because parents felt strongly that people

wanted to tap in and out of it when they needed to.

Um,

they, um

it needed to be really accessible. So it wasn't just going to be all written text.

It was gonna be in videos in audio,

um, multimedia infographics pictures.

So for those that didn't want to read big piece of text,

um,

the we have the functionality whereby it can

be translated into lots of different languages.

It has easy read format. You can have it read aloud, um, using the recite me tool.

Um,

but that was going to be the outcome.

And so we set about having monthly meetings. This is all during the pandemic.

So all online

and every meeting, there would be, um, representation.

Um, from a number of as I said, those stakeholders, the clinicians,

always the parent representatives, and it was really, um,

a truly collaborative sort of co-produced piece in

the sense that right from the very beginning,

um, everybody was involved.

And everybody, um,

debated and discussed and decided on the sort of direction of the project, uh,

together,

just for clarity were the, um,

people who had the diagnosis involved in those meetings.

So the the parents and carers were involved in those meetings.

Some of those parents and carers are neuro diverse themselves.

Now, these meetings were in, um, you know, office hours.

But what we did do is, uh, at various parts of the project,

we went out and did some of the, um,

collaborative work with the young people with the diagnosis.

Uh, so for for example, um, the pack was split into 14 different topics.

14 different chapters, 14 different sections, and a couple of those sections, um,

were co-produced with the young people because they're more young.

People focused.

Um,

but the the general sort of direction and strategic sort

of overview of the project was was with those families,

the parents and carers.

OK, so so has that,

um, diagnostic support pack. Has that actually been produced yet?

Yes. So the

yeah, the pack was launched last September.

Um,

it took about a year worth of production.

So what would happen is at the beginning, we all agreed. Um, you know what?

The sections would be? What we wanted to include. As I said, 14 different chapters

from then. We then split off into subgroups, and there was a subgroup working on it.

Each different chapter.

Um, in every chapter, there was a representative from each of the, um,

sort of stakeholders.

There was always a clinical representative.

There was always a parent care representative, Um,

and then that the output of those sub groups,

they come back to the main oversight of the group, and we'd all sort of peer review.

Um, the pack was launched last September.

Um, it was it's, you know, launched with a big coms plan.

It's been shared with all the schools in the local area.

Um, we've had, um, an article on it published by the British Medical Journal.

Um, on the journey that we took, um,

and we've also had a meeting with NHS England because

they're quite interested in in how it all came about.

Um but I guess

one of the things that I I could talk about

was how coproduction really changed the direction of the project.

Um, in the sense that, um,

when you're working with, uh, health professionals and clinical staff, um,

they have quite a clear view of what information might need to be included.

So let's take, for example, the topic of medication.

Um, we have a doc doctor that specialised in a DH D medication.

He was very clear about you know what? What's it involves? You know what?

What are the options? Um,

you know how many times a day you take them, whether it's liquid tablet format, Um,

but the the parents, carers and people that will be using the pack. Um,

they had quite different ideas about

what was necessary to include,

um So, for example, um,

they wanted to know, for example,

how the medications would work in in simple formats.

And they worked really closely with the doctor on creating an, uh, an animation.

So in really, um,

easy and accessible language. How the how the process of, uh, a DH d medication.

Um, works. But I think, more importantly

than that,

they had a real, um

the

what it's like to receive a diagnosis.

Um, and from their explanations, that could be, um, stressful. And, um,

someone described it as almost like a bereavement in the

sense that there's a certain amount of grief that,

um, you know, what does this mean?

Does this mean there's there's something wrong?

Does this mean, you know, is life gonna look differently?

Um,

and coupled with that, sometimes Children and families with neurodiversity,

as the families explained to to us through the process,

is that that journey is quite challenging.

So,

um, from whether it's, you know,

not not doing well at school or whether it's challenging behaviour,

whether it's sort of Children, you know,

getting put on the naughty step at school or something for, you know, acting out.

Um, you know, you read a lot of medical text, for example,

leaflets you might pick up on autism that says lack

of this or lack of inability to do this.

And they said, right, if we're gonna do this and we're going to be involved,

we want this to be positive, uplifting, inspiring.

We want the language to be progressive.

We want it to be inclusive,

and we want to make these parents feel like they've got something to celebrate

Because having Children is, um

is something to celebrate, and and no one with Children of neurodiversity,

you know, thinks differently.

Um and so that was a real theme.

A golden thread throughout the entirety of the project.

It, um it changed the language that was used.

Um, we had some real intense discussions, actually,

between the clinicians and the parents, obviously, all working together,

all mutual mutually respect.

But,

um, there was one moment where

one of the doctors said, Well, you know, according to the DS m five,

which is the clinical manual, um,

we need to use the terminology neurodevelopmental disorders.

Um, and the parents said, Well,

we're not comfortable with that language because

we don't see our Children as disordered.

And he said, Yeah, I understand that, but, you know, it's clinical terminology.

That's what the books say. It's not gonna be recognised if we don't use it.

Um, we kind of took a step back and said, Well, hang on. Who is this?

Who is this project for? Who are you expecting to use it,

Um,

and and yeah, that that I think that's just a little, uh, identifies.

How it really, um, changed the day changed the course of things.

Um,

one of the other areas they felt really strongly

about was of the 14 topics I explained.

Um, they wanted a whole section on the positives of neurodiversity.

Um, so we utilise a lot of lived experience in the section,

and we set about creating a series of

video interviews and interviewing parents and young people.

You'll see lots of young people on this

film talking about what they're really good at,

what their strengths are

and what they're really proud of. Um, there's one, um,

gorgeous little girl that says, You know, um,

my autism is a superpower because everybody says I'm really smart.

Um, and it's a very uplifting video.

Um, and that's one of the things we've used to really promote the project. Um,

and I think all of that identifies how the course of that has changed from just

simply a a health or medical resource into

something that's actually really powerful and supportive.

And that's what these families that they needed.

That's that's really great. Um, I'm just wondering about the impact on

that had on

those medical people there,

and perhaps the other people that are service sort of providers.

You know, the clinician.

Did they?

Yeah, I think it it. Really,

Um I mean, first of all, they

we we ensured from the beginning when we set out

that everybody had a really clear understanding of how we were gonna work together.

Um,

you know it It's about equal partnership from the beginning.

It's about mutual respect.

Um, we stopped introducing ourselves with titles because very quickly,

we found Oh, I'm this doctor.

And I'm just a parent. And no, we can't be having any of that.

Um,

we set a bit of a guideline that no one was going to apologise

for what they had to say because we found a lot of people.

Oh. Oh, sorry. I'll stop talking now. No, we're not. We're not doing that.

Um,

and so I think they were.

I think it really, um

they loved it. They they absolutely loved it.

I think everybody at the end of the meetings would always say like, wow, like,

what a good discussion.

Um, equally, the parents and carers found it, you know, fascinating.

To hear it from a medical perspective and the the medical staff the clinicians.

Um,

I think it was really sort of eye opening for them.

Um, I believe that they've really sort of changed practise.

Um, because of those experiences, you know,

thinking about that language that's used thinking about, um,

about how a parent's experience through the process, um

is is really critical, um,

to sort of to to how they feel and and and what they remember.

Um,

we have had a doctor's report going forward since this project

that they will now always include sort of, um,

strength based discussions within their consultations.

Um,

that, you know,

when they're asking what a young person

struggles with or what their challenges are,

they'll always ask them as well, What are you really good at?

Um, and they'll point things out. They'll help the person to identify that.

One doctor telling me that,

um,

you know, the child was drawing in clinic, and she you know,

it was really important to her that they talked about

how good she was and the strength so that that,

uh, that experience of that medical care is is really positive. Um,

yeah.

I'm just thinking about the sort of power relationship there as Well,

I don't know if there was any.

You know,

um, it sounds like there wasn't quite a change, actually in

in in people's perceptions,

Um,

and where that Trans and that has by the sounds of it translated into their practise.

But I wondered if that was acknowledged that that

that power balance it sounds a bit. It sounds like it was in the sense that you said

that it, you know, mutual respect and so on.

But I wondered if you could say a little bit more about that and also think about

maybe the ripple effect, you know,

on wider society. I don't know if you if you can do that,

um,

and and whether you actually formally evaluated it

or have had a chance to it's quite recent, isn't it?

Yeah, it is quite recent. We've we have had feed.

We we have asked people to review it and provide feedback. I wouldn't

I wouldn't really say it was a form of evaluation at at this stage.

I wouldn't say it was as wide as that. We have had

a lot of feedback on it,

and we made quite a few changes and improve and

changes and improvements as we've gone on following that feedback,

Um, in terms of the ripple effect and wider society,

um,

I think that

as I mentioned working in coproduction,

it really changed the course of, um,

the direction of, uh, the overall project

in the sense that

I've never seen before. And I don't know if many other of these

people that were working together both doctors

and clinicians and parents and carers and families

a a

kind of medical clinical resource

that aims to be inspiring, uplifting and empowering at the same time.

And I think a result of that in the way that we've shared it.

So, for example, we've shared it, um, with schools in the local area

and we had some feedback from a school.

Um, that said, you know, wow, this is this is just really impressive. Um,

not only is it really helpful and useful, you know,

it's got some really sound sort of evidence based information,

but actually, it

it really changes the way that you think about things.

Um, you know,

that video that I shared about the positive of neurodiversity and

these Children talking about what they're good at and their strengths.

It kind of reinforces for everybody that having a diagnosis is not,

you know, it's not. It's not necessarily, but it's a part of who you are as a person

and not something that's,

you know, negative. And actually, it can be negative in so many situations.

Um,

so I think there was in terms of

building a better society with the messaging

throughout that as a medical resource,

it's, um

Yeah, it's It's really it's quite moving. I think

I think

go on.

So and is that is that toolkit? Could we use it? So I live in the North.

Could we use it up here? Is it

it's not,

um, region specific or area specific?

So, um, the way it I mean, anybody has access to it, It's It's online.

It's on the website

the way that it is set up.

We we our organisation is is Bedfordshire

and Luton Children's Community Health Services.

So it is on our Bedfordshire and

Luton Children's Community Health Services website.

Uh, anybody has access to it. We're very happy to share it.

We're very not precious about the information.

Um, and when you know, as I mentioned, we were contacted by NHS England,

because they wanted to look at whether they could use it,

and they were really impressed with it.

But we haven't heard anything back since.

We would be very, very happy to share it and have it spread, you know, far and wide.

Um,

so yeah, I mean, absolutely. It's anyone's welcome to use it.

I think it would need a bit more work to make it accessible and everybody aware of it.

But, um,

yeah, it's open to everybody.

OK, I I think that you've said a lot

and I'm I'm just gonna turn turn the recording off now

and thank you very much.

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Author

LauraA

Post date

06/06/2022