With growing awareness of ADHD in adulthood, the NHS faces increasing pressure to deliver timely, consistent assessments. A new report by The King’s Fund sheds light on how current systems are struggling to keep pace
Adult ADHD remains underdiagnosed and undertreated in the UK, with significant variation in access to assessment and care. The report examines current data on diagnosis rates and service provision, highlighting systemic gaps and the urgent need for more consistent and equitable pathways for adult patients.
Most adults remain undiagnosed or have a lengthy wait for ADHD assessments
Attention deficit hyperactivity disorder (ADHD) is suspected to affect 3–4% of adults in the UK. However, there is no definitive national data on prevalence.
Many adults are undiagnosed, and recent research highlights significant waits for adult ADHD assessments that can often extend to multiple years. As more people present ADHD symptoms, the waiting time for assessments continues to grow.
The report by The King’s Fund analysed available data to understand adult NHS ADHD assessment services locally. The researchers reviewed existing literature, research, and a sample of NHS mental health trust board papers and spoke with key stakeholders – senior clinicians recommended by the Royal College of Psychiatrists.
In addition, the researchers conducted interviews with a diverse range of providers and commissioners across six sites. They performed a comprehensive review of board papers from mental health and community trusts, identifying specialist adult ADHD services.
The critical data gaps and lengthy waits not only leave adults with ADHD underserved but also struggling
The impact of this situation on the patients cannot be overstated, and it is crucial that we address these issues urgently.
The researchers at The King’s Fund found a variety of clinical information systems in use, each with different limitations and workarounds. These systems, while serving their intended purpose, often lack the flexibility to adapt to changing data collection needs, leading to inconsistencies and gaps in the data. Understanding these limitations is crucial for improving the data collection process.
Waiting list data reporting varied across trusts, with clinicians suggesting waits of up to 10 years. NHS trusts struggled to collect reliable data and conversion rates (from assessment to diagnosis) due to issues such as inconsistent recording and limited coding options in their clinical information systems. There were also concerns about the quality of diagnosis data from assessments outside of their services.
The researchers found that referral and triage data also varied, with different trusts adopting different processes and tools. However, this is a key intervention for managing the demand for adult ADHD assessments. Current variation risks confusion for patients and quality concerns for staff.
Furthermore, the lack of consistent demographic data collection made it difficult for the researchers to measure and monitor potential inequalities in access to and experience of adult ADHD services. Similarly, a lack of patient outcome data means services cannot assure themselves meaningfully of the impact of their services.
The levels of demand for adult ADHD services are a key limitation for staff and NHS Trusts addressing issues within their systems and data. However, providers and commissioners acknowledged that they had a wealth of data but could still identify the data needed; patient outcomes and experience data were the most commonly reported. Consistency on a national level regarding definitions and reporting methods was a key request from the researchers.
The King’s Fund emphasises the importance of data collection
The researchers emphasise that improving data on ADHD is essential for enhancing services and access. Accurate, consistent, and comprehensive data is key to identifying challenges, tracking progress, and supporting service improvement.
National guidance is urgently needed on data collection and reporting across the ADHD care pathway—including triage, diagnosis, treatment, and waiting lists. Standardised templates and coding practices are essential to ensure consistency and accuracy in data collection. These requirements should be embedded in NHS and independent provider contracts to ensure their implementation.
A whole-system approach, including the sharing of best practices and active engagement with providers and clinicians, is crucial for achieving meaningful and consistent data collection.
