The Health, Social Care and Sport Committee published its report today into Attention Deficit and Hyperactivity Disorder (ADHD) and autism pathways and support.
The Committee calls for urgent action to deliver a national plan that ensures autistic people and people with ADHD can access clear, consistent pathways to support across every health board in Scotland.
The Committee welcomes the Scottish Government’s commitment to accept the recommendations in the National Autism Implementation Team (NAIT) Adult Neurodevelopmental Pathways report.
It also notes the Scottish Government’s intention to review implementation of the National Neurodevelopmental Specification for Children and Young People through its new task force.
The Committee expresses concern that many people wait years for neurodevelopmental assessments and that some health board areas have closed waiting lists. It emphasises that long waits harm individuals and may prevent people from making a full contribution to society.
The unprecedented demand for neurodevelopmental assessment is recognised by the Committee and the need to put certain thresholds in place before a referral is made. But the Committee warns that this approach can be seen as gatekeeping and can cause delays to accessing assessments and support.
The report further highlights evidence that long waiting times can push people into crisis, which can increase complexity of the support needed and put additional pressure on services. It calls on the Scottish Government to work with health boards to deliver a shift towards early, progressive support, in line with the principles of the Population Health Framework.
The Committee also heard evidence that long NHS waiting times can push people towards private diagnosis at significant cost, risking a two-tier system.
The Committee calls for a comprehensive review of assessment processes across all areas, leading to a National Standard that guarantees consistency, responsiveness and support across Scotland.
Given current waiting times, the Committee calls for consistent high-quality communication with people on waiting lists, including accurate, supportive, up-to-date and neuro-affirming information that meets the needs of each individual.
Countering claims that neurodevelopmental conditions are subject to over-diagnosis, the report instead notes evidence that rising demand for assessments reflects historic under-diagnosis and improved understanding of these conditions. The report recognises that diagnosis can validate lived experience and help people access adjustments, support and medication if needed.
While the Committee welcomes the Scottish Government’s commitment that diagnosis should not be a prerequisite for support, it remains concerned that, for many individuals, the lack of a formal diagnosis can create a barrier to accessing support. The Committee calls on the Scottish Government to set out actions to prevent diagnosis status becoming an artificial barrier to receiving support.
To improve fairness and consistency, the Committee calls for a plan to deliver mandatory training for everyone involved in making referrals to neurodevelopmental pathways and all health and social care staff in patient-facing roles.
The Committee supports a whole systems approach across health, social care, education and other sectors to improve awareness, reduce stigma and strengthen support for those with neurodevelopmental conditions.
It calls on the Scottish Government to set out what it is doing to advance whole society action, including workforce planning, funding distribution that supports integration, inclusive education, support for families with multiple neurodivergent members, and stronger collaboration across public services.
On publication of the report, Clare Haughey MSP, Convener of the Health, Social Care and Sport Committee said: “Our inquiry has shone a light on the myriad issues those with neurodevelopmental conditions face in accessing and receiving support from Scotland’s NHS.
“We acknowledge the huge rise in demand for assessment and diagnosis and the huge pressure this places on services. But we are concerned that inconsistent care pathways and a lack of support can leave some feeling isolated and unable to access the support they need.
“We are concerned to have heard evidence of long waits for assessments or closed waiting lists, meaning some individuals are unable to access support due to where they live or because they haven’t been diagnosed with a neurodevelopmental condition. It’s clear things need to improve.
“We’re calling for urgent delivery of a national plan so that autistic people and/or people with ADHD are able to access clear, consistent pathways to support regardless of where they live in Scotland.
“We’re also calling on the Scottish Government and health boards to work together to undertake a comprehensive review of the assessment process in order to introduce a National Standard for assessments that guarantees consistency and quality of access throughout Scotland.
“Our Committee wants to see a whole systems and whole society approach to ensure autistic people and/or people with ADHD can access equitable and timely pathways to assessment, treatment and support across Scotland.
“Thank you to all of the individuals who shared their personal experiences of ADHD and autism with us and helped inform our inquiry.”
Other findings in the report:
- The report also stresses the need for consistent national data on referrals and waiting times. The Committee calls for steps to enable routine quarterly reporting of data on referrals and waiting times for autism and ADHD, underpinned by national guidance, and for longer-term work to culminate in a comprehensive dashboard.
- The Committee pays tribute to third sector organisations that support people who have not received, or are waiting for, diagnosis. It welcomes ongoing commitments such as the Autistic Adult Support Fund and calls for clearer plans to place third sector funding on a sustainable long-term footing.
Both ADHD and autism are neurodevelopmental conditions.
ADHD is characterised by a group of symptoms that includes difficulty in concentrating, hyperactivity and impulsive behaviour. It affects around 5% of school-aged children, and between 2.5% and 4% of adults.
Autism Spectrum Disorder (ASD) is a lifelong developmental condition that affects the way a person communicates, interacts and processes information.
It is often characterised by social and communication difficulties and by repetitive behaviours. Current estimates indicate about 1 in 34 people are autistic, just under 3% of the population.
