More accurate, consistent and comprehensive data on ADHD is needed to improve services, a new report by the King’s Fund has found.
Commissioned by the Department of Health and Social Care (DHSC), the Adult ADHD assessments and diagnosis report found that there was ‘significant variation’ in data collection and use across the country, including both waiting list data and demographic data.
The researchers said they were told of waits of up to 10 years in some areas, but that sites struggled to collect reliable diagnosis data and conversion rates because of a lack of consistent recording or lack of coding options in clinical systems.
It said there was ‘no official list of ADHD services, no agreed measure for calculating waiting times for assessments and no duty to report this data, so the full picture of ADHD assessment and diagnosis is unclear’.
Inconsistent collection of demographic data also made it difficult to monitor inequalities in access, they added.
It said that in the absence of national guidelines, services were attempting to use their data to improve, but this had risked ‘further fragmentation’.
The report said: ‘Addressing variation in adult ADHD data collection and use will be fundamental to developing high-quality, comparable data that can be used nationally to understand, plan and improve services. Having an accurate understanding of the data is a vital first step to understanding where improvements might be made for people waiting for ADHD assessments.’
It follows the publication of the first ADHD management information by NHS England at the end of May, which aimed to provide an estimate of the prevalence of ADHD and the number of people waiting for an assessment.
The figures suggested that 549,000 people ‘may’ be waiting for an assessment as of March 2025, and that an estimated 2.5 million people have ADHD across England, including those without a diagnosis.
NHS England said: ‘Historically there has been no specific data publicly available about people with ADHD. The ADHD data improvement plan highlighted the need to make use of and publish existing data held by NHS England in this area whilst also working to improve data quality.’
Greater awareness of ADHD
A separate study in the Journal of Affective Disorders found that greater awareness of ADHD could be behind a surge in diagnosis, not that the disorder was becoming more common.
This research, which reviewed 40 studies across 17 countries, also noted the ‘significant limitations’ of the quality of data globally on ADHD.
‘The lack of high-quality studies, and an absence of data related to ADHD referrals, waitlists, and support in education settings make it difficult to draw firm conclusions about the increased attention surrounding ADHD globally,’ the authors said.
However, it concluded that the available evidence suggested that the prevalence of ADHD in adults and children has ‘remained largely stable’ since 2020, and that the rise in referrals may be due to a ‘societal change’ and ‘greater awareness’ about neurodiversity.
‘Whilst is likely that referrals have for ADHD assessments have continued to increase, as described in the media, the lack of data on ADHD assessments means that the extent and origins of backlogs for ADHD assessment and capacity for healthcare and educational systems to be able to manage are unclear,’ the authors said.
‘Our findings surrounding true prevalence cannot explain any increase in diagnostic referrals. Instead, it has been suggested that the increased assessment for ADHD may be reflective of a societal change in the way the condition is conceptualised, with greater awareness and discourse about neurodiversity.’
In September 2024, research suggested that ADHD service failures were increasing health inequalities.
In January, it was suggested that adults with ADHD were ‘living shorter lives than they should’.
