Autism and ADHD diagnosis delays in Wales could triple by 2027

The number of children waiting for an autism or ADHD assessment in Wales could nearly triple to 61,000 over the next two years, a committee heard.

Sarah Murphy, Wales’ mental health minister, told the Senedd’s children’s committee that 20,770 children were waiting for a neurodevelopmental assessment in September 2024.

She said: “The assessment we’ve got from the NHS Executive is that we’re going to see, by March 2027, between 41,000 to 61,000 people waiting for these assessments.”

By comparison, according to freedom of information (FoI) requests, around 4,100 children were awaiting an ADHD or autism assessment in September 2021.

Giving evidence on January 9, Ms Murphy, who is responsible for neurodevelopmental conditions, learning disability, and dementia, pointed to an extra £3m for health boards.

‘This cannot continue’

Ms Murphy said: “It will benefit the children and young people who have been waiting the longest and the money then is dependent on the delivery.”

Quizzed by Vaughan Gething, the former first minister who first brought her into government in May, she suggested the surge in demand was down to increasing awareness.

She added: “That assessment means a lot to children, young people and their families. I was speaking to the National Autistic Society yesterday and they said ‘we’ve raised so much awareness but now we need to ride that wave towards understanding and acceptance’.”

The Conservatives’ Joel James was alarmed to hear waiting lists could almost triple in two years, asking how ministers will intervene to ensure sustainable services.

Ms Murphy replied: “We’ve done a national accelerated design event which was really good. It was over a couple of days: it brought together … everybody who has a part to play in this.

“Because we all recognise that this cannot continue – we have to change.”

‘Unsustainable’

Asked whether health boards could expect more funding to drive down waiting lists in future, she said: “No. To be very clear, the £3m is one-off funding.”

Ms Murphy explained health boards are bringing in additional capacity from the private sector in an effort to meet demand but cautioned that this is unsustainable.

The Welsh Government has a target of 80% of children and young people receiving an assessment in 26 weeks, twice as long as the 13 weeks recommended by NICE guidelines.

Yet, while data on waiting times is not routinely published unlike in England, it is thought the 80% target has not been met Wales-wide since it was introduced nearly a decade ago.

Welsh ministers have no corresponding target for adult assessments.

‘Real energy’

Sixty-seven per cent of children waited at least 26 weeks and 45% waited for more than a year in June 2023, according to the response to another FoI request.

Cwm Taf Morgannwg and Betsi Cadwaladr university health boards currently warn of waiting lists of two and three years, respectively.

Albert Heaney, the chief social care officer for Wales, said health boards are confident an extra 2,000 assessments will be delivered by the end of March.

He said: “Importantly, the money is on condition that they are delivered. It’s coming the other way around on this occasion … it’s not money that’s given out, the money is on delivery.”

Mr Heaney added: “I’m really pleased that there’s a lot of co-production, there’s lived experience, there’s a real energy around this because I think there’s recognition … that it can’t just be about focusing on assessment.”

By Chris Haines, ICNN Senedd reporter