ADHD MI: Supporting Information

This is a management information (MI) publication. MI provide transparency about business or operations when they are published. Data are collated from MI or administrative systems to present important indicators of interest to the organisation. 

Users should be aware of the status and constraints of this data. The limitations of each measure are explained in the data quality section below.

NHS England regularly ask for feedback from users of its publications to help further development. Please provide any comments or feedback here.

Attention deficit hyperactivity disorder (ADHD) is defined by the World Health Organization as being characterised by a persistent pattern of inattention and/or hyperactivity-impulsivity that has a direct negative impact on academic, occupational, or social functioning, the level of which is outside the limits of normal variation expected for age and level of intellectual functioning. 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.

In this initial publication data is available on the following areas:

• Estimated prevalence of ADHD
• The number of open referrals that may be for ADHD assessments, including how long they have been open
• The number of new referrals
• The number of closed referrals

Additional measures will be added incrementally following publication of technical guidance for providers that aims to improve data quality in this area. It is hoped this publication will move to official statistics standards in 2026/27.

A full list of measures currently contained in the publication is published in a data dictionary alongside each release 
 

Data contained within this publication can provide:

• An estimate of the number of people in England who may have ADHD
• The number of open referrals that may be for an assessment for ADHD in mental health services and:
  • how long this referral has been open
  • the number of referrals waiting for a first contact
  • time between the referral being made and a first contact occurring
• The number of referrals discharged from mental health services each month that may have been for an ADHD assessment and the time from referral to discharge
• The number of new referrals to mental health services each month that may be for an ADHD assessment
• The number of people on the community paediatrics waiting list who may be waiting for an ADHD assessment.

• The total number of people diagnosed with ADHD in England
• The number of people who are waiting specifically for an ADHD assessment
• Information about people who are waiting for an ADHD assessment via right to choose or private providers who do not report to the Mental Health Services Data Set (MHSDS)
• The number of people diagnosed with ADHD following an assessment
• Any treatment received by people with an ADHD diagnosis

Data presented in this publication is sourced from a number of existing NHS England datasets:

• Mental Health Services Data Set (MHSDS) – ADHD services are often delivered within mental health services and therefore a proportion of those referrals and activity should be captured in this dataset.
• Community Services SitRep Data Set (CHS Sit Rep) – children and young people’s ADHD services are often delivered by community paediatrics providers and therefore a proportion of those referrals and activity should be captured in this dataset.
• Patients registered at a GP practice – sourced from the Primary Care Registration database within the PDS (Personal Demographics Service) system. This data is combined with NICE ADHD prevalence information to calculate an estimate of the number of people with ADHD in England.

NICE suggests that around 3-4% of adults and 5% of children and young people have ADHD. These figures have been used to create an estimate of the number of people who may have ADHD in England by calculating 3.5% of the total number of patients aged 25 and over in England and 5% of the number of patients aged 0 to 24 to create a total estimated population.

NICE prevalence estimates are largely accepted however there is still debate within scientific and clinical literature on ADHD prevalence due to the limited amount of data in this area.

ADHD is not usually diagnosed in children aged under 5 due to some traits associated with the condition being part of the typical development of children in these ages. However estimates of ADHD prevalence in 0-4s have still been calculated to provide an insight into the number of children who may go on to receive a diagnosis in the future.

Information contained within this publication is known to contain a number of data quality issues. The main known issues are summarised below:

Within MHSDS, the primary referral reason of ‘neurodevelopmental conditions, excluding autism’ has been used to identify referrals that may have been for an ADHD assessment. This category also includes referrals for other conditions such as dyslexia, dyspraxia and Tourette syndrome therefore counts using this measure are likely to overestimate ADHD referrals. However anecdotal evidence suggests that most referrals in this category are likely to be for ADHD assessments.

Not all referrals relating to ADHD will be for a diagnostic assessment. Some patients may have received an ADHD diagnosis in an independent / private setting and have an open referral for accessing ADHD medication via the NHS. 

There are known data quality limitations with respect to the completeness of care contacts and specific information related to these, such as the specific team that referred the patient or the presence of a formal diagnosis. For these reasons, these statistics do not yet represent a complete picture of ADHD diagnostic pathways.

The submission of data to MHSDS can be complex as the process of diagnosing an individual person may involve multiple multi-disciplinary teams and can take time to agree a diagnosis. As a result of this, the patient journey can be difficult to accurately represent in the data. Further complexity can arise when some patients have more than one health condition and can be assessed for different conditions under the same referral. This is then also difficult to record and measure over time and may result in data submission issues.

Waiting time information relies on submitters providing referral and care contact information in a timely manner; ideally this would be by the time the submission window closes for each reporting period. If a provider submits any activity data related to the reporting period outside of the submission window, then these are accepted into the dataset if the referral is still open but may not feature in subsequent publications.

It is not possible to identify the number of referrals that result in a confirmed diagnosis of ADHD due to poor completeness of the diagnosis field. The recording of diagnosis data is an area being addressed in new technical guidance that hopes to improve the quality of data in this area and then be included in future versions of this publication.

There are currently high numbers of patients who are not being discharged from their referral following a diagnosis of ADHD. This is due their ongoing care, including medication reviews, still being managed by the provider who provided the diagnosis as there are issues with patients not being accepted back to their primary care setting. As a result there will be patients still appearing on the waiting list despite having received their assessment and diagnosis. 

Due to submissions from an independent provider from February 2025, counts for some indicators are higher than in previous and subsequent months.

ADHD activity is captured in the CHS SitRep data under the ‘Community Paediatrics’ service line, this includes other activity but no further disaggregation of the data is possible. Community paediatrics has been used as a proxy for ADHD referrals and though actual figures may be lower anecdotal evidence suggests the majority of people waiting for these services are awaiting an ADHD assessment. This does not include any adult ADHD assessments carried out in community services.

The sum of individual breakdowns by time waiting may not equal the total waiting list due to providers collecting data using different methodologies.

CHS SitRep data is a snapshot of information at a specific point in time and relies on providers providing accurate and timely information. There are known discrepancies when comparing counts between the Sit Rep data and wider Community Services statistics.

From December 2024 additional breakdowns were added to the CHS SitRep data identifying waiting times between 52 and 104 weeks and waits greater than 104 weeks. For months prior to this it is only possible to identify people who have been waiting 52 weeks or more for an assessment.

January 2025 saw an increase in community paediatrics waiting lists due to the inclusion of an additional provider who had not previously been submitting data.

Further data quality notes published as part of the CHS Sit Rep publication are available here.

Not all ADHD referrals will be captured in the MHSDS and CHS Sitep datasets e.g. right to choose and private / independent assessments who do not report to MHSDS. Therefore measures relating to open referrals / waiting lists will be an undercount of the total number of people with a referral for NHS funded services. Should these providers submit data to MHSDS in the future these counts will increase. 

There is the potential for a patient to be counted in both MHSDS and CHS SitRep data if they have been referred via both routes. It is not possible to quantify this as the SitRep data is an aggregate collection that contains no personal identifiable information that would allow deduplication.

Due to a submission from an independent provider in February 2025, counts for some indicators are higher than in previous and subsequent months.

Data is published at national (England) level, with some measures also available at region and ICB level from the May 2026 publication.

Coverage varies between the datasets that contribute to this publication:

• MHSDS coverage is published in the monthly submission report which contains a list of organisations who currently submit data to the MHSDS. All providers of NHS-funded specialist mental health, learning disability and autism services should submit to the MHSDS. At present only a small number of independent sector providers are making submissions, and this has an impact on coverage. Completeness of specific data items varies considerably within the dataset. Further information can be found here.
• CHS SitRep coverage is around 85% and is reported on monthly in table 1 of the community health services waiting lists publication.
• There are no known coverage issues with data from the patients registered at a GP practice publication

From the May 2026 release, measures ADHD003 to ADHD007 are available at region and ICB level, broken down by age group. These sub national breakdowns are available as separate csv files.

Data is released quarterly (May, August, November, February) and contains a rolling 13 month time series. As measures within the publication are sourced from different datasets, timeliness varies between indicators. It is important to note the reporting period start and end dates assigned to each indicator to understand what period the measure covers.

The estimated number of people with ADHD (ADHD001) is calculated each quarter using list size data taken as a snapshot at the start of the publication month e.g. data published in May 2025 will contain an estimate of the number of people with ADHD as at 1st May 2025.

Measures using data from MHSDS (ADHD003 to ADHD007) include data up to the end of the month two months prior to the publication date e.g. data published at the end of May 2025 will contain data up to the end of March 2025. Providers are able to resubmit data throughout the financial year. This will be reflected in the publication if the resubmission is within the 13 month time series. Further information on submission deadlines is available here.

Data sourced from CHS Sit Rep (ADHD008) is a taken as a snapshot each month and includes data up to the end of the month two months prior to the publication date e.g. data published at the end of May 2025 will contain data up to the end of March 2025. No retrospective updates are made to this data.

The presence of small numbers, combined with reasonably granular age breakdowns has required suppression to be applied to some indicators:

ADHD001 – estimates of ADHD prevalence are rounded to the nearest 1,000 to highlight that these are estimates and not counts.

ADHD003, ADHD004, ADHD005, ADHD006, ADHD007 - all figures are rounded to the nearest five. All figures between 0 and 4 are suppressed (*).

ADHD008 – this data is unsuppressed as it is published with no disclosure control rules applied in the CHS Sit Rep publication.

In each quarterly release of this publication, data will be released in a summary excel file and an accompanying .csv file containing a 13 month time series at national (England) level. Data is available broken down by age bands with additional breakdowns by gender and ethnicity available for measures sourced from MHSDS. From May 2026 publications onwards data is also available for measures ADHD003 to ADHD007 at region and ICB level by age in two .csv files. Metadata for the csv file is released as part of the publication which outlines definitions for each of the measures contained in the data file.

ADHD data improvement plan
NHS England’s plan to improve the data it holds relating to ADHD.

Neurodevelopmental data hub
A central repository for neurodevelopmental data produced by NHS England including publications, dashboards, supporting information for underlying datasets and technical guidance, alongside signposting to other useful sources of information.

Mental Health Services Data Set
A series of web pages providing information and guidance on submitting and using data in MHSDS.

Autism waiting time statistics
A series of publications documenting the experience of waiting times within autistic spectrum disorder (ASD) diagnostic pathways. 

Community health services waiting lists
Monthly information on waiting lists and times for community health services in England.