Adult ADHD assessments and diagnosis: data and service provision

Overview

• Attention deficit hyperactivity disorder (ADHD) is suspected to affect 3–4% of adults in the UK.

• In recent years, various sources have highlighted significant waits for adult ADHD assessments. However, there is 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.

• To understand more about how local services collect and use data to plan and manage adult NHS ADHD assessment services, we interviewed commissioners and providers of adult ADHD services, spoke to senior clinicians, and reviewed board papers and existing literature.

• We found significant variation in terms of data collection and use, from waiting-list data to demographic data. In the absence of national guidelines, services were attempting to use their data to improve, but this risked further fragmentation.

• 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.

Why we did the research

Attention deficit hyperactivity disorder (ADHD) is suspected to affect 3–4% of adults in the UK, although there is no definitive national data on prevalence. The vast majority are undiagnosed and in recent years various sources have highlighted significant waits for adult ADHD assessments that in many places extend over multiple years. There are also concerns that the length of wait for an ADHD assessment is growing as more people present with symptoms.

We set out to find out what data is available, collected and used to plan and manage adult NHS ADHD assessment services locally. While this is a narrow scope, having an accurate understanding of the data is a vital first step to understanding where improvements might be made.

What we did

We reviewed existing literature, research and a sample of NHS mental health trust board papers, and talked to key stakeholders – senior clinicians recommended to us by the Royal College of Psychiatrists. We gathered insights from these sources to inform the selection of sites that appeared notable in terms of their use of adult ADHD data. We interviewed a mix of providers and commissioners across six sites, and also completed a full review of board papers in trusts (mental health and community) where we could identify a specialist adult ADHD service.

What we found

We explored collection and use of a wide range of data relating to adult ADHD assessment and diagnosis. We found a variety of clinical information systems in use, all of which had different limitations and different workarounds.

Waiting-list data reporting varied extensively across trusts, but we were told about waits of up to 10 years. Sites also struggled to collect reliable diagnosis data and conversion rates (from assessment to diagnosis) because of issues such as a lack of consistent recording or a lack of available coding options in their clinical information systems. There were also concerns about the quality of diagnosis data from assessments outside of their own services.

Referral and triage data also varied, with different trusts adopting different screening processes and clinical tools. However, this is a key intervention for managing demand for adult ADHD assessments. Current variation risks confusion for patients and quality concerns for staff.

Inconsistent collection of demographic data made it very difficult 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.

We heard about several concerns with the data, or limitations to it, relating to different factors, including the clinical information systems in use, lack of capacity to input referrals, and inconsistencies in how data is recorded by different staff and services.

Services in many areas are attempting to address some of the issues they are facing, whether by making better use of their own data or trying to ensure better consistency of data across different areas. However, levels of demand for adult ADHD services (and therefore on staff capacity) is a key limitation on this work.

Providers and commissioners acknowledged they had a lot of data but could still identify data needed – patient outcome and experience data being the most common. Consistency on a national level regarding definitions and ways of reporting was a key ask.

The wider context of adult ADHD services came up frequently – demand was a key issue highlighted by all services, including backlogs at different points: entering referrals onto the system, triage, as well as for assessment. It appears that the growth in awareness and demand for services has also led to questions about the value and purpose of diagnostic categorisation, and its relationship to access to services for assessment and treatment.

Recommendations

Data on ADHD should be improved so that it can support a wider programme of improvement in services and in access to them. Accurate, consistent and sufficiently comprehensive data will be fundamental to understanding the challenges that need to be addressed, adapting to variation and changes within them, and monitoring progress. This is a vital first step to understanding where improvements might be made for people waiting for ADHD assessments.

There is a need for national guidance or requirements on data collection and reporting for ADHD triage, assessment, diagnosis and treatment, and waiting lists associated with them, risk assessment for screening and triage decisions, and for the development of national model referral templates and standards for ADHD records and coding that are compatible with this guidance.

There is also a need to include requirements in standard contracts for both NHS and independent providers to adopt the above guidance, templates and standards, and to support commissioners to take a whole-system approach that takes account of capacity and waiting lists across both NHS and independent providers, as well as dissemination of examples of good practice in defining, collecting and using ADHD data, including outcomes.

Crucially, engagement with providers and clinical staff is vital to ensure a clear understanding of what data is needed, why it’s important and more consistent data collection.