ADHD data improvement plan

The World Health Organization defines attention deficit hyperactivity disorder (ADHD) as a condition characterised by a persistent pattern of inattention and/or hyperactivity–impulsivity that has a direct negative impact on academic, occupational or social functioning, the scale of which goes beyond the limits of normal variation expected for age and level of intellectual functioning.

We know our ADHD service provision has not kept pace with demand and there is a need to improve access, experience and outcomes. In an initial phase of work to better understand the issues facing ADHD service provision within the NHS, one of the challenges we identified was the lack of reliable data.

The NHS needs comprehensive, accurate ADHD data and insights: 

• to understand patient experience and outcomes
• to enable service improvement and/or transformation
• to support its work to tackle health inequalities (including by developing cohort-specific approaches)
• for effective workforce planning

In response, we have developed a national ADHD data improvement plan, working with stakeholders across the NHS and wider system, including clinicians, provider and commissioner data leads and experts by experience.

The long-term vision is to have accurate national data on all aspects of ADHD pathways, from people being referred for ADHD assessments through to patient outcomes. We want this data to be linkable, consistently defined and of low burden for providers to collect. 

To achieve this vision, we have considered options and will need to prioritise our efforts on meaningful solutions.

NHS England’s ADHD Programme Board agreed 2 approaches:

Making the best use of existing data: NHS England to publish the data we currently hold (but know is likely currently incomplete) at provider level. This will encourage providers to improve the data they submit to NHS England. 

Targeted data quality improvement: NHS England to issue technical guidance on what data should be recorded and how data completeness and quality should be improved. Commissioners will ensure providers implement this as early as possible in 2025/26, and by no later than Autumn 2025. While this approach will use existing data sets, it does require effort from providers to submit complete data and from commissioners to monitor compliance. This approach will be bottom-up, led by feedback from data providers, to ensure a thorough understanding of the data collection opportunities within existing systems, with any changes to the technical guidance based on advice from systems.

Short to medium term

During 2025, our analytical work will have 2 main strands:

Making best use of existing data, including linking data sets where possible and using existing research to create estimates where insufficient data exists 

Creating clear, detailed technical guidance for providers and commissioners to realise improvements in data quality 

Making best use of existing data 

Analysis will focus on the areas below to monitor patient journeys, and it will be used to evaluate how effectively any taskforce recommendations are being implemented. Data will be published incrementally on the Neurodevelopmental data hub in the most suitable format (for example, Excel files, open data files and dashboards).

Targeted data quality improvement

The technical guidance for ADHD data recording will target existing national data sets, with the following prioritised:

Community Services Data Set (CSDS) – children and young people ADHD services are often delivered by providers of community paediatric services and therefore a proportion of those referrals and activity should be captured in this data set.

Mental Health Services Data Set (MHSDS) – adult ADHD services are often delivered within mental health services and therefore a proportion of those referrals and activity should be captured in this data set.

e-Referral Service (eRS) Data Set – a digital tool that can be used to create and manage referrals to a variety of services, including for ADHD. 

ADHD-related activity is currently not easy to identify in MHSDS or CSDS as the reported data is not granular enough. The technical guidance will identify the SNOMED codes (there is already a mechanism to flow SNOMED codes and providers have not yet adopted ICD-11 as an alternative). It will also identify the underused data items to use in the data submission. For example, referral reason, within existing data flows, to improve the granularity of the data and enable better analysis and insight.

The technical guidance will be published in June 2025 on the Neurodevelopmental data hub. It will include detailed information on what data should be recorded in which data set / data item and will be aimed at providers and others who submit data to MHSDS and CSDS. Commissioners will should also refer to this guidance when monitoring data improvement. 

While the initial focus of the technical guidance will be greater accuracy in recording ADHD-related activity, its future development will include how to better capture and code other physical and mental health conditions that occur in people diagnosed with ADHD.  

ADHD-related activity is mostly unidentifiable within eRS, due to variation in how providers name their services and clinics and the fact that neurodiversity/neurodivergence is not a listed 'specialty', leading to ADHD services and clinics being distributed across other specialties within eRS. NHS England will encourage all providers to use eRS for ADHD referrals and work with them to agree a list of ADHD services within eRS, improving data completeness and reducing complexity. We are also exploring options to onboard independent sector providers that provide ADHD services via Right to Choose onto eRS, giving visibility to these referrals.

Data from the above data sets will be monitored and reported on for improvements across a range of metrics. We will expect to see:

• coverage – reported cases increase across the pathway, until they reach the numbers research suggests providers should be managing
• completeness – more details recorded for people on ADHD pathways, including SNOMED codes and demographic data; this will help to highlight any health inequalities
• validity and integrity – complete data items, with the correct values that correspond to information within and across data sets
• accuracy and reliability – improvement in coding from all providers implementing a set list of SNOMED to ensure consistency
• coherence and comparability – all providers following the technical guidance to record activity and outcomes, with this consistency improving comparability

We will also begin regular reporting of some ADHD data on our Neurodevelopmental data hub from May 2025. Initially this will be data for the analytical priorities identified above and from autumn 2025 will include that for the targeted data quality improvement areas.

Long term

It takes time to implement changes to existing data sets (such as the addition of new data items) or set up new data collections to a good standard, and doing so can increase burden on providers and may have cost implications. However, if providers do not effectively action the data quality improvements set out above or if reliable, actionable statistics cannot be produced following these improvements, then NHS England will explore these options in collaboration with colleagues from the data collections and curation service. 

We will collaborate with other relevant workstreams in NHS England and across wider government. We will work together to improve data and ultimately the experiences of and outcomes for people with ADHD or awaiting an assessment. 

Key related work and teams include:

Mental health waiting time targets, including ‘Reducing waits over 104 weeks in mental health services’.

Future community waiting time targets and the NHS benchmarking community paediatrics data collection.

Getting it Right First Time (GIRFT).

Centrally collated finance data, including the total value of invoices received by integrated care boards (ICBs), by supplier (independent sector providers).

Other workstreams within the ADHD Programme, including to understand the provider and commissioning landscape and share good practice.

Learning Disability and Autism Programme teams; identifying opportunities to create a cohesive approach to neurodevelopmental disorder services and reporting. 

Office of National Statistics (ONS) and linked data across government departments including Department for Work and Pensions, HMRC and Department for Education. 

National NHS England Health and Justice team who are responsible for collating data on:

• people detained in prison, immigration removal centres and children and young people secure estates who have a confirmed ADHD diagnosis
• additional coding for suspected ADHD may soon be added to the prison estate to capture those who cannot receive a diagnosis assessment but screen positive

HM Prison and Probation Service (HMPPS), which collates national data on self-reported levels of ADHD and related need for those in the adult prison estate.

Actions for NHS England

Update this plan every 6 months until our vision is realised.  

Publish technical guidance in relation to ADHD and ADHD-related data, in line with this plan.

Actions for commissioners and providers of ADHD services 

Commissioners should ensure that their contracted providers (both NHS and independent sector) report all NHS-funded activity into the appropriate mandated data set, as outlined in the NHS Standard Contract. Further information for NHS staff is available on the FutureNHS platform (login required). 

Commissioners may wish to define and implement locally agreed KPIs in line with their contracts. 

Providers must implement the technical guidance described above in 2025/26.