Organisation objective

• NHS Long Term Plan, NHS Long Term Workforce Plan

Executive summary

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.

ADHD can have a lifetime impact, with a range of interdependencies with the health, wellbeing, social integration, and quality of life of individuals and families. Evidence points to neurodevelopmental disorders being associated with an increased risk of loss of life and people with ADHD are overrepresented in the justice system as both victims and perpetrators.

Multiple challenges relating to ADHD pathways and treatment exacerbated by recent medication supply issues, have been identified by the NHS, patient groups and charities. The drivers of demand for ADHD services are multifaceted and complex, spanning wider societal and environmental factors. They apply to both children and adult services, and encompass access, choice, diagnosis, and treatment options. 

To better understand the issues, NHS England initiated a rapid piece of work to consider ADHD service provision within the NHS. The initial phase of work has identified challenges with:

• current service models and the ability to keep pace with demand
• lack of reliable data to fully understand the size of the challenge
• the rate of growth within the independent sector and the potential variation in the service models and thresholds being used
• the balance between use of medication and therapeutic treatment options
• variation in access, experience and outcomes for different populations
• the join-up across ADHD services and interrelated policies across health, care, education and the justice system.

Further detailed work, undertaken collaboratively with people with ADHD, the third sector and other public bodies, is now required to deepen our understanding of the issues and to identify potential solutions.

Action required

The Board is asked to note the work undertaken to date and endorse the proposed next phase of work.

Background

In December 2023, NHS England initiated a cross-cutting project to consider issues relating to ADHD service provision. The focus was understanding the size and nature of the issues, and the underlying causes. As part of this work NHS England:

a. undertook a review of the data NHS England holds on referrals, waits and diagnosis for ADHD in England

b. commissioned a piece of work on international comparisons of ADHD prevalence rates from King’s College London

c. reviewed how ADHD services are currently delivered in England and the drivers affecting behaviours and outcomes

d. established a clinical reference group (CRG) to undertake a series of deep dives.

The National Institute for Health and Care Excellence estimates the global prevalence of ADHD in children to be around 5%, and in adults in the UK at 3% – 4%. Data on ADHD available to NHS England is collected across multiple datasets and is varied in terms of completeness and coverage. It is therefore likely to significantly underrepresent the number of people seeking, waiting for and with a diagnosis of ADHD. The rapid review by Kings College of international comparators found that this data gap is not unique. The best data they found showed a rate of diagnosis of ADHD between 10.2% and 10.5% in children in the USA, and 3.4% in children and 1.4% of adults in Sweden.

The work of the CRG gives us the most detailed and up to date insights into ADHD service provision available from clinicians in England. It initially identified 5 areas of significant interest:

a. diagnosis

b. neurodiversity

c. prescribing

d. health inequalities, trauma, addiction and the justice system

e. secondary gain.

Members of the group met 7 times and spent almost 20 hours in workshops over 2 months. Three core themes from discussions emerged: 1) ‘Right person, right pathway, right support’; 2) ‘Converging spaces’; and 3) ‘Paradox of care’.

Initial findings

The key themes identified from the work to date are summarised below, with the intention that they will form the basis for wider discussion and further detailed work:

a. ADHD service provision and interrelated policies need a joined-up approach across health, care, education, and the justice system. Improving access, experience, and outcomes for people cannot be done by health focused work alone.

b. The lack of good ADHD data sources means it is difficult to fully understand the size of the problem. There is a lack of evidence explaining what is driving recent increases in demand for ADHD services. The drivers are complex, spanning wider societal issues and education policy. There is limited international data and evidence to draw on.

c. As our services have not kept pace with demand and need, there has been a rapid growth of independent sector provision in the market for ADHD services. There is a need to work with systems and providers (including non-NHS providers) to better understand the different service models being used and the challenges being experienced at different points of the pathway.

d. Service models need to do more to keep pace with the needs of the people seeking support. ADHD service models should consider a range of therapeutic and non-clinical interventions, in addition to prescribing options. Services should be set up in a way that is informed by need and better consider comorbidities and neurodevelopmental conditions. We need to make sure that a variety of care pathways exist, with people placed on the right care pathway, and that those providing care are appropriately trained and supported. For children, the service should be an integrated offer with education and children’s services.

e. Data suggests that some populations are at increased risk of experiencing inequalities in access, experience, and outcomes. At-risk cohorts include both victims and perpetrators of crime, those facing broader social and economic deprivation, and those from marginalised groups.

The key findings are an important step in helping to improve services for people with ADHD in England. However, the findings now need to be tested and solutions developed more widely and with greater cross-sector and patient collaboration. This is particularly important as improvement for people with ADHD and their families cannot be achieved by the NHS alone.

Considerations

The initial work undertaken has highlighted the significant challenges with reported increases in demand for ADHD services, and the impacts of these increases in demand do not impact the NHS alone. 

We have been working with systems and trusts who are considering alternative approaches to the management of ADHD. 3 trusts in Hertfordshire are working to provide a seamless service for all children needing access to autism and/or ADHD assessment and support. They have developed a segmentation and staffing model with a common entry point and rapid direction to see the right clinicians. The model incorporates support whilst waiting provided by the voluntary sector; and the whole model has been developed in partnership with families and local authorities.

To identify potential actions to address the challenges in the complex ADHD landscape, further detailed work, undertaken collaboratively with patients, the third sector and other public bodies is required.  

Next steps

NHS England is establishing a taskforce, with experts from within the NHS and wider system partners, supported by public and patient engagement. The taskforce will be expected to engage widely with service providers, integrated care boards (ICBs) and integrated care partnerships, primary care, local authorities, schools/educational providers and clinical teams. The taskforce will be expected to report on their findings later this year. 

In conjunction with the taskforce, NHS England will continue to work with stakeholders to:

a. develop a national ADHD data improvement plan
b. carry out more detailed work to understand the provider and commissioning landscape. This work will include detailed mapping of the provider landscape, provider engagement, and analysis of provider outcomes
c. capture examples from ICBs who are trialling innovative ways of delivering ADHD services and to ensure best practice is captured and shared across the system.

People with ADHD deserve a caring and effective service from the NHS and wider society. We know there is more to do, but we do not underestimate the complexity and challenges in realising this ambition. However, we are determined to take the agenda forward and improve the pathways for our patients, in partnership with those living with ADHD, and other public sector bodies, so the community sees real improvements to their services.