Hi.

Hi there. Hi. How are you?

Just enjoying enjoying the conference if I'm honest. It's Yes. Absolutely brilliant Henry. Thoroughly enjoying it. I've got to get right into it like well it's you would when I first first introduced you and you told me all you've achieved, was just gobsmacked. I thought it's so impressive and the lessons we have to learn. It's a question we get asked a lot and we get ambassadors, ADHD UK ambassadors, one of the things we want to help them do is get involved. How did you get involved? What is Parent's Voice, CIC? What's the neurodivergent ministerial advisory group? It's sort of the how and the what? How do you get there? What do you do?

Well, thank you for that. And I'm absolutely delighted to be here. So, in true Welsh style, Bora Dauphaub. Good morning, everybody. Just to say we were established in 2018 through my own lived experience of the frustrations, I guess, of the medical model for neurodivergent my own neurodivergent children and how we couldn't get access to support because they weren't failing enough. And of course, like many neurodivergent families, we found that emotional based school avoidance, mental health crisis had to be kind of reached before you could access any support. And I was hugely frustrated by that because again, like many other parents.

I had to give up my career. There was a loss of income because I had to stay at home and look after my child. So lots of frustration there which I decided to to make a change, not knowing, you know, what I could do. I didn't even know where to start. But I decided that I was isolated as a family in terms of people understanding our needs. And so I wanted other parents to have that support and to have a kind of community where we could help each other accessing additional learning needs. We call it ALN in Wales now. ALN support. That led to the setting of parents' voices in Wales. But I was also it's an online community. We've got over 1,500.

Much more than that actually, families across Wales, the whole of Wales that are online, and we also sponsor other parent groups for that face to face peer mentoring groups in Wales. So we want to empower other groups across Wales, not just kind of, keep that seat for ourselves. When in about 2018, when we first, were established, I wanted to understand how many children were on the CAMS waiting list in Wales because I couldn't understand why my son had to hit a mental health crisis to get help from the primary school. And we that that showed that about over fifty percent of children on the on the CAMS waiting list in Wales were neurodivergent, either seeking assessment or just identifying as ND. Now doctor Tony Lloyd of the ADHD Foundation.

Said to me, look. Let's do that again, and let's do it on a much more kind of glossy, bigger scale. So we did it again. The the percentages that we had, I think it was at 1,200 families participated, 900 were viable, and which showed that sixty five percent of children in Wales were on the ND waiting list. So I took that to the Lynn Legal, who's our education minister now. But I took that to the Senate Committee of Children and Young People in Wales and said, look at this data, why we don't have an early help model. And Lynn Eagle, who was the chair of that committee, then said, well, have you heard of the mind of a matter report? This is about children, the missing middle children.

And she said it's about children who don't meet the threshold for either ND assessment or for children that don't meet the threshold who aren't severe enough, if you like, in that medical model to access CAMS. And that mind over matter report was the start of the whole school approach in Wales. Simultaneously, I went to the children's commissioner for Wales and who was then professor Sally Holland, and I said, look at this data. Why are we not don't have an early help needs led approach in Wales? Why are we we have thresholds and people have to hit crisis?

And she said, well, funnily enough, I'm in I'm I'm writing a report called the no wrong door approach, and that no wrong door approach is about families not hunting down services where services come around the families and provide holistic needs for those children. That report was, fundamental to the whole system approach in Wales, is the nest framework. And Parents Voices in Wales was invited because of our understanding of that need of early help, was invited to coproduce that framework. So that put us on that stage of collaboration, of understanding the direction of travel in Wales for that early help needs led approach. And it allowed us to build our network across sectors. So not only from communities, but also to specialist services.

And into the school communities. And that's become fundamental to success of us really in in our ability to bring everybody together so that we can have that whole system direction of travel. And it's been fundamental for the neurodivergence improvement programme, which is the nest framework whole system approach, but focusing on ND families and how we can meet the needs of children and young people early in our schools.

Thank you. And that sort of core point of we have data to prove the point, so it's not just anecdotal stories. I think one of the challenges we can sometimes find is people know it. We see it as charity or as an individual. It's very clear to us. But when you're going to talk to a politician, they're hearing stories all the time and actually they can't quite work out what's a story and something that's important to an individual and what's a systemic issue that they want to that they need to grasp in a different way. And And that gets conflated with effective campaigns. We've got a good campaign going to parliamentarians, the senators, they've seen these things but they still don't know, like is it a campaign or is it a.

Truth of numbers? And so you're going with that idea of data and collaboration. So here's the data, here's proves the point, then working to collaborate with is an incredibly effective and important.

Thank Thank you, Henry. And I think it is a fresh approach because historically we've always looked retrospectively and complained about what's wrong and what doesn't work. We all know everybody who's attended this conference knows what doesn't work. What we need to be doing is flipping that narrative and saying, this is the evidence now. This is what works well. We've got evidence for what works well. This is the benchmark that we want you to reach. And that is why the NEST framework and the ND improvement program in Wales is so important because it's about health boards mentoring each other. It's about instead of working, you know, competitively. It's about that shared culture across that whole system.

And that comes from forward thinking, innovation and development and being community led. So the the voices of these parents and families with lived experience of what doesn't work, but also what does work, to come and have a seat at the table so that we can together collaboratively support that culture measures of success.

Like, something I'm worried about right now, we've got big discussion around SEND in England, is that the interventions going on actually do work. But what's going to get replaced? We don't know. But there's a good chance it doesn't have an evidence base.

I think the key is that everybody in the room, first of all, is willing to build relationships across that system and doesn't want to work in a silo. Because if you're going to work in a silo, you're not going to meet the holistic needs of a child, social, emotional, and educational needs. So that requires a whole system approach. Because when a child is failing and a family is struggling, it's a whole system crisis. Right? So we it needs everybody to build those and be willing to build those relationships and to offer seats to that whole system in their communities. It starts in the community. It starts with an understanding about neurodiversity. We must not make assumptions that we know.

We don't know what we don't know, And that goes for everybody working in every discipline. We don't know what we don't know. And, in the training that I do, the response is always, everybody needs to hear this. Everybody needs to hear this. And so it's about sharing that knowledge base coming from a lived experience as a woman with ADHD as well. My story is very similar to a lot of children and families that I that I deal with. So it is about educating the educators.

But also It is a testament to you that you're having those conversations and making them Thank you. Happen. I'm mindful of time. Like, we like, The what are your when you look to the future, what are your fears? What are your aspirations?

My aspirations? I'm not going to go with fears because I think that that's a barrier and it can hold us back. My aspirations are that we are able to work, but address the power imbalance as parents and carers as experts in our children. That we are able to have a seat at the table and work more cohesively with schools and services, which we are. We've got a great model happening across Wales, and I'm I'm gonna give a shout out to an own health board right now and Paris teaching health board where we're doing some coproduction and some fantastic models of community led approaches and designing services to meet the needs of local families. And that comes from a shared language, shared understanding, and a shared vision.

And it means that everyone has to be brave and to have conversations and self reflection. But, ultimately, it comes down to relationships because without relationships, you can't have a dialogue. And without a dialogue, we can't meet the needs of children and young people.

I'm bowled over by you, Ceri. I think you're amazing. I think what you've achieved is extraordinary. If you look at what's happening in Wales around neurodiversity, it's in many cases, it's ahead of England and the other default nations and is leading that way. I think that's one of the reasons Anita Tarpal was appointed head of the NHS Task Force for NHS England actually on the back of success that changes she pushed through in Wales. Obviously England very different, significant differences, But it does show what has been done in Wales. I have to say goodbye to you. I'm very sorry. No. Thank you so much. I look forward to our ongoing conversations.

I think you're an extraordinary person. I think what you've achieved and put together, which you you make it sound very simple. And I know how hard you've worked at it and how many people you've you've got involved, it's very special. So thank you very much.