North Wales MS and Chair of the Senedd Cross-Party Autism, Mark Isherwood, has called for an overhaul of neurodevelopment services in Wales, highlighting the severe challenges families are experiencing in accessing adequate support for neurodevelopmental conditions including Tourette Syndrome, Attention Deficit Hyperactivity Disorder and Autism.
Questioning the First Minister in today’s meeting of the Welsh Parliament, Mr Isherwood said that a growing number of parents are reporting that senior public officials are failing to fully understand or address the barriers faced by families dealing with neurodevelopment conditions.
He said:
“Tourette syndrome, Attention Deficit Hyperactivity Disorder, and Autism are distinct neurodevelopmental ‘disorders’ that can co-occur, sharing some overlapping symptoms and characteristics.
“Despite the Welsh Government's veneer of support for this, I continue to be contacted almost daily by families pushed into crisis by Senior Public Officials who refuse to understand the barriers they are facing.
“Only this week, for example, I was contacted by a parent of two children presenting with clear neurodevelopmental issues over the past 10 years. Both have needed to reach crisis point before the Health Board has taken any significant action to help them. They were forced to obtain a private assessment for one, showing he has autism and inattentive ADHD, alongside already diagnosed Tourette syndrome. He was never going to learn by standard methods, and needed a lot of help much sooner.
“The other was sent home from school in June with fatigue and concerns about his eating. He was first seen by CAMHS about a suspected eating disorder in January 2020. Most recently, he was given an urgent appointment by CAMHS, which showed his weight to be close to dangerously low levels, with a risk of organ failure.
“When, if ever, will you finally redesign services with these families in order to tackle the culture of blame, bullying and labelling, which continues to push them into crisis?”
Responding, the First Minister said:
“We recognise that service provision in this area varies, and support is offered through neurodivergence or CAMHS services. There's a code for autism, and that acknowledges the need for services to support individuals. That new code will include Tourette syndrome. I think it's probably worth noting also that the neurodivergence improvement programme is working with Tourettes Action and third-sector partners to raise awareness and enhance professional understanding to improve services and awareness of Tourette syndrome. So, we know there’s more work to do in this area, and we're working with the experts in their field to help us to develop a better offer for the Welsh people.”
Speaking afterwards, Mr Isherwood said:
“I have repeatedly outlined the harm this is causing to families and called for action, yet it is still happening on a repeated basis.
“I am pleased the First Minister recognises that more needs to be done, but fast action is needed to end the daily suffering for these families.”
