SOME children have waited up to four years for a neurodiversity assessment, a North Wales council scrutiny committee heard.
The claim was raised during a meeting of Conwy Council’s social care and health scrutiny committee at Coed Pella, where senior representatives from Betsi Cadwaladr University Health Board faced pressure to explain long waiting lists for children with conditions such as autism.
It was revealed at the meeting that nearly 3,000 children in Conwy and Denbighshire are currently on the waiting list for a neurodiversity assessment.
Alison Cowell, Betsi Cadwaldr University Health Board’s assistant area director for child and adolescent health, acknowledged the delays and admitted the service is under strain.
The National Autistic Society expressed concern at the “unacceptably long waiting times” for a diagnosis.
Councillor Cathy Augustine, the cabinet member for children, families, and safeguarding, expressed concern about the numbers of children still waiting for an assessment.
She said there had been a commitment to getting neurodiverse assessments for children done in less than four years for each child.
“I wanted to understand where we were with that, and how many children we might have – even if we have ticked that box and nobody is waiting longer than four years – have we got hundreds of our young people waiting three years and eleven months, for example,” she asked.
“Because we know, even though an assessment isn’t necessarily the be-all and end-all, it does, under our current structure, unlock a lot of support. It unlocks finances in schools to those young people.”
She added: “It is also really important around mental health and well-being, the impact of the work we do in our youth justice service, and in our Mash (Multi-Agency Safeguarding Hub) teams. So that’s a number of strands but in the same area.”
Ms Cowell gave an example of one child waiting for a diagnosis to wear a hat in school that was “not OK”.
While she said she was optimistic going forward, she said there had been a huge increase in potential neurodiversity cases coming forward since the pandemic.
She also said it was important to focus on children’s clinical needs as well as the actual assessment while waiting, which could be met with the likes of health visitors carrying out developmental checks.
“It is really important we go with the model we want to implement, as well as getting some quick wins and get the transformation changes happening, as well as being focused on the long waiters,” she said.
“That is really challenging in terms of our workforce capacity issue for us, but it is something that we are actively trying to make happen as well. And some of that isn’t happening as quickly as we want, but I can assure you that in centre, that is what I’m trying to drive forward with.
“We are under some pressure at the moment to work regionally, and make sure that it is not post-codal, and actually that the child – wherever they are living – are getting the same wait.
“I’m trying to make sure that we actually use our capacity across North Wales as efficiently as we can. That’s challenging for us, and for children and young people who are neurodiverse, because, as you will know around the room, the support that they have from schools is fundamental to their ongoing profile, and what they need in terms of support, as well as the diagnosis.”
She added: “And the diagnosis isn’t a one-off appointment. The assessment and the diagnosis take time. So that is a significant piece of work that is a priority for me, as the executive director of children’s services. And as you’d rightly say, it is a priority for the Regional Project Board, and we are working really hard to improve that experience, and clearly the performance of that service as well.”
James Radcliffe, external affairs manager for Wales at the National Autistic Society said: “We are deeply concerned about the unacceptably long waiting times children and adults are facing for an autism diagnosis. An autism assessment can be the first step to really understanding people’s needs and, too often, people can’t get support without a diagnosis, although this shouldn’t be the case. An autism diagnosis can be life changing and in some cases lifesaving.”
He added: “Early identification and support is also crucial for autistic children to thrive in schools and their communities. It means better support can be given to the whole family, who themselves can have a greater understanding of what they and their children need. Four years is far too long for children and their families to wait in this limbo of waiting for a diagnosis, and the Welsh Government needs to address these long waiting times as a priority.”
