Lydia is co-production lead for NHS children's community health services in Bedfordshire and Luton. They support health services to embed co-production, lead the co-production projects and are responsible for supporting families to get involved in service developments and improvements in co-production. Co-production changed the course of this project. a 'Diagnosis Support Pack' resource, where clinicians and parents/carers were brought together to create a meaningful resource about Neurodiversity launched September 2021


'Diagnosis Support Pack' here:

put you on the call. So 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, Um 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 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


This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.