As of December 2023, 16,812 children and young people in Wales were waiting for an ADHD or autism spectrum disorder (ASD) neurodevelopmental assessment. By June 2023, over two-thirds (67.4%) had been waiting more than 26 weeks.
In recent years there has been an exponential rise in demand for neurodevelopmental assessments, which is projected to continue to increase in coming years.
In February, the Welsh Government announced £13.7 million to transform services and cut ADHD and autism waiting times.
We’ve been working with the Welsh Government’s Neurodivergence and Learning Disabilities team to explore how digital tools could ease pressure on the professionals involved in assessments, making it easier for them to do their jobs effectively, while also improving the experience for families and individuals on the waiting list.
Through our discovery work, we spoke with families, individuals, and professionals across Wales to understand the real-life experiences behind the numbers. The message was clear: the system is overwhelmed, inefficient, and it just takes too long. There is limited access to timely information for people who are waiting on an assessment, there’s duplication of effort across services with a heavy administrative burden on clinicians and a fragmented digital landscape that doesn’t reflect the needs of those using or delivering services.
“We’re not short on commitment — we’re short on time, capacity, and working tech. It’s exhausting.”
“Questionnaires are on paper which isn’t ideal because they get lost or have issues with handwriting. And I've got to keep a record of the fact that I've given this questionnaire. So, they hand it back in, we scan it onto the patient notes and then it gets attached to the referral letter that goes off by email to the department. Then the paper copy gets shredded.”
What we have done
In our discovery phase, we established a strong justification for digital solutions to improve efficiency. We identified several issues with the current paper-based systems, including lost documents and problems with handwriting. Our research revealed that administrative teams were overwhelmed with phone queries from parents and referrers, while schools were providing valuable information that could significantly speed up the assessment process if properly captured.
We developed a comprehensive ‘current-state’ service map of referral and assessment pathways, by speaking to health boards across Wales. We tested technology systems against what both professionals and those waiting on a referral actually need. This helped us develop a way to evaluate digital tools and establish a shared understanding for stakeholders of what a system needs to be able to do.
We conducted a desktop evaluation of five existing digital products. Based on our identified needs, we recommended further exploration of one of these products. We have since reviewed additional newer tools that have become available.
We are working with health boards to plan a real-world pilot of one or more tools. This phase focuses not just on testing the technology itself, but on evaluating its integration with existing systems and workflows, with particular emphasis on supporting practitioners in their daily work.
Let’s hear about the work from our SRO within Welsh Government Sian Delyth Lewis
What next?
As part of the work, we have identified the opportunity to use AI to reduce administrative burden on staff and clinicians. We will update on this, and the findings from our pilot in future blog posts.
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