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UK adult ADHD services in crisis

Published online by Cambridge University Press:  07 December 2023

Michael C. F. Smith*
Affiliation:
Leeds and York Partnership NHS Foundation Trust, Leeds, UK
Raja A. S. Mukherjee
Affiliation:
Surrey and Borders Partnership NHS Foundation Trust, Redhill, UK
Ulrich Müller-Sedgwick
Affiliation:
Le Bas Centre, St Helier, Jersey University of Cambridge, Cambridge, UK
Dietmar Hank
Affiliation:
Avon & Wiltshire Mental Health Partnership NHS Trust, Bath, UK
Peter Carpenter
Affiliation:
University of Bristol, Bristol, UK Royal College of Psychiatrists, London, UK
Marios Adamou
Affiliation:
South West Yorkshire Partnership NHS Foundation Trust, Wakefield, UK University of Huddersfield, Huddersfield, UK
*
Correspondence to Dr Michael Smith ([email protected])
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Summary

The UK's services for adult attention-deficit hyperactivity disorder (ADHD) are in crisis, with demand outstripping capacity and waiting times reaching unprecedented lengths. Recognition of and treatments for ADHD have expanded over the past two decades, increasing clinical demand. This issue has been exacerbated by the COVID-19 pandemic. Despite an increase in specialist services, resource allocation has not kept pace, leading to extended waiting times. Underfunding has encouraged growth in independent providers, leading to fragmentation of service provision. Treatment delays carry a human and financial cost, imposing a burden on health, social care and the criminal justice system. A rethink of service procurement and delivery is needed, with multiple solutions on the table, including increasing funding, improving system efficiency, altering the service provision model and clinical prioritisation. However, the success of these solutions hinges on fiscal capacity and workforce issues.

Type
Editorial
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
Copyright © The Author(s), 2023. Published by Cambridge University Press on behalf of the Royal College of Psychiatrists

Adult attention-deficit hyperactivity disorder (ADHD) waiting lists pose a significant national problem,1,Reference Young, Asherson, Lloyd, Absoud, Arif and Colley2 an issue unlikely to resolve without substantial intervention. Over the past two decades, recognitionReference Davidovitch, Koren, Fund, Shrem and Porath3 and effective medical treatmentsReference Childress, Komolova and Sallee4 for ADHD have markedly expanded, contributing to a consistent increase in clinical demand across the UK.Reference Renoux, Shin, Dell'Aniello, Fergusson and Suissa5 Notably, the consensus among authors is that the COVID-19 pandemic has further exacerbated the issue of waiting times.

During the mid-1990s, only a handful specialist adult ADHD services existed in the UK, often composed of small, resource-limited teams. These teams were tasked with addressing extensive regional clinical demands for assessments and treatments. Following the publication of the 2008 National Institute for Health and Care Excellence (NICE) guidelines, specialist services throughout England significantly increased.Reference Asherson, Leaver, Adamou, Arif, Askey and Butler6 Despite this growth, many regions of the UK still experience limited access to adult ADHD services.Reference Price, Janssens, Newlove-Delgado, Eke, Paul and Sayal7

In addition to this, the resources allocated to these services have failed to keep pace with the ever-growing demand, resulting in lengthy waiting lists for specialist services. A 2018 Freedom of Information request to clinical commissioning groups highlighted a substantial variation in waiting times for assessment following referral, ranging from 4 weeks to nearly 4 years.1

Statistics concerning waiting lists can be misleading. Headline figures usually consider the individual at the front of the queue. However, for an individual awaiting assessment, the estimated waiting time from their addition to the list, or the ‘back of the queue’, is more relevant. For a service that currently quotes a 2–4 year wait from referral to assessment, a more realistic estimate for a newly added individual is likely to be 5–10 years if no additional funding is provided. This figure is based on calculations done by specialist services where demand is assumed to be static and clinical teams are operating at full capacity.

Although specialist services, the medical literature,Reference Young, Asherson, Lloyd, Absoud, Arif and Colley2 the mediaReference Bish8 and government9 increasingly recognise the widening gap between resource demand and capacity, a lack of both national strategy and political focus exacerbates this problem. The escalating problem of ADHD waiting times has continued largely unchecked owing to a lack of specific targets for these waiting times10 and the absence of routinely collected national data. This stems primarily from a lack of set targets for ADHD, as exist for other conditions, such as autism spectrum disorder.11 This issue was highlighted in the government's response to a parliamentary debate held in February 2023 on ADHD waiting times.12 The response concluded that, in the absence of a specified NICE target, local commissioning organisations, rather than central government, should resolve the problem of waiting lists.

According to the National Health Service (NHS) constitution,13 patients have a right to start consultant-led treatment within a maximum of 18 weeks of referral. However, the government does not consider this time frame applicable to ADHD.12 In response to the unmet standard following the COVID-19 pandemic, NHS England outlined its strategy for increasing capacity in its Elective Recovery Plan.14 This ambitious plan aimed to eliminate waits longer than 2 years by July 2022 and waits longer than 1 year by March 2025. However, this plan mainly addresses non-urgent hospital treatment, primarily surgical, and makes no reference to mental health services.

Underfunding of NHS adult ADHD services has resulted in a significant growth of independent providers, whose numbers have increased in response to the unmet demand. The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012,15 embedded in the NHS Constitution, grant individuals living in England the right to choose the location of their first out-patient appointment with any provider that holds an NHS-commissioned contract. In view of this, many patients have accessed ADHD services through public funding via alternative routes.

Although this increased capacity has been welcomed by many patients facing long waits, it has also introduced additional challenges into the system. The large number of providers in both the NHS and the independent sector presents a challenge to patients, clinicians and commissioners tasked with navigating a complex and fragmented system and determining the quality and reliability of these services. Although NICE provides guidance on the assessment and treatment of ADHD10 it is not specific enough on what constitutes quality assessment and treatment to ensure the required consistency between providers. Financial and human resources have been diverted from NHS services,Reference Ulrich16 and duplication and wastage have resulted from NHS services needing to reassess people diagnosed elsewhere when there is a lack of confidence in assessments. Furthermore, many patients have been left without medication when their general practitioner (GP) has felt unable to continue ADHD medication under shared care arrangements because of a lack of confidence in the diagnosis. The General Medical Council17 places a clear responsibility on prescribers to prescribe medicine only where ‘you have adequate knowledge of the patient's health and are satisfied that the medicine or treatment serve the patient's needs’. These issues have recently been the focus of significant media attention following a BBC Panorama documentary.18

The extraordinarily long waiting times for ADHD services are particularly alarming given the effectiveness of treatments for this condition. Stimulant medications used for ADHD, which have one of the largest effect sizes in psychiatry,Reference Surman, Hammerness, Pion and Faraone19 improve both symptom control and functional impairment,Reference Coghill, Banaschewski, Soutullo, Cottingham and Zuddas20 and are generally safe and well tolerated.Reference Cortese, Adamo, Del Giovane, Mohr-Jensen, Hayes and Carucci21 Moreover, the need for timely treatment is underscored by the range of negative outcomes for individuals with the condition, including accidents/unintentional injuries,Reference Libutzki, Neukirch, Kittel-Schneider, Reif and Hartman22 comorbidity,Reference Choi, Woo, Wang, Lim and Bahk23 increased mortalityReference Dalsgaard, Østergaard, Leckman, Mortensen and Pedersen24 and suicide.Reference Balazs and Kereszteny25 In addition, there is a financial cost to the individual,Reference Daley, Jacobsen, Lange, Sørensen and Walldorf26 their family and the wider public Reference Vibert27 resulting from delayed access to treatment.

The human and financial costs of untreated ADHD represent a compelling case for investment in this area, considering that effective long-term management benefits both the individual and the wider economy. The impact of unaddressed ADHD reverberates across the broader system, affecting areas such as social care,Reference Biederman and Faraone28 health and the criminal justice system.Reference Gudjonsson, Fridrik, Susan and Kristin29

ADHD in adults is a chronic condition with a substantial cost to society, requiring sustained and targeted investment to support those affected. Existing approaches to funding and delivery of services in the UK have been largely insufficient, as evidenced by the current state of the NHS services.

In conclusion, the crisis in adult ADHD services is an opportunity to rethink how these services are procured and delivered. The shortcomings of the current system highlight the need for investment, but more than that, they underscore the need for a different approach to service delivery.

The road ahead

A range of solutions exists to address the crisis in adult ADHD services. However, the challenge lies in the fiscal and workforce problems. A multi-pronged approach is likely to yield the most substantial improvements.

Option 1: status quo

Maintaining the current system is the first option. However, without changes, waiting lists will likely grow year after year, exacerbating the existing problems. This option is not only directly detrimental to patients but also imposes a significant burden on specialist services.

Lengthy waits for diagnosis create significant inefficiency in the system. Specialist services are expending considerable time in triaging requests for patients to be prioritised owing to worsening personal situations and liaising with patients who are complaining about the wait. The proportion of time devoted to this increases in tandem with the waiting list, which challenges the ability to engage in the core work of assessment and treatment. GPs are also expending valuable time supporting those waiting for care and corresponding with specialist services. The unmet need is also placing pressure on other services, such as secondary mental healthcare, owing to the burden of comorbid difficulties, such as anxiety, depression and the need for crisis support, that occur when the condition remains untreated. Partner agencies such as housing, social support and the criminal justice system will also continue to feel the effect of unmet need as the condition manifests in these areas.

The pressure of extended waiting times is also damaging morale within specialist services, bringing additional challenges of workforce retention and capacity, further exacerbating the problem.

Quality of care is also being threatened, with many services struggling to provide safe treatment and failing to meet the NICE standards of care where annual medical reviews are concerned.

Consequently, this approach is unlikely to be sustainable in the long run.

Option 2: enhanced funding

The most direct solution is to maintain the current ADHD services model while substantially increasing funding. However, given the fiscal environment, this option seems unlikely. Furthermore, substantial funding would be required to bridge the gap between demand and capacity and to tackle the backlog.

Option 3: improve system efficiency

Improving system efficiency could help tackle the crisis. This could be achieved by refining every aspect of the diagnostic and treatment pathway, including leveraging technology.

Quantified behavioural tests, which aim to provide a computerised objective assessment of ADHD symptoms, offer promise but require further investigation before they can be considered as a strategic solution.Reference Brunkhorst-Kanaan, Verdenhalven, Kittel-Schneider, Vainieri, Reif and Grimm30,Reference Adamou, Jones, Marks and Lowe31 Artificial intelligence/machine learning approachesReference Loh, Ooi, Barua, Palmer, Molinari and Acharya32 might help considerably in reducing the time taken to establish a diagnosis but again such developments are unlikely to affect the system quickly enough. As things stand, ADHD continues to require a clinical diagnosis, which can be aided but not made by a stand-alone technology.

Efficiency savings are possible using more sophisticated administrative systems for assessment and treatment. Such systems can streamline the process and have the potential to significantly reduce the administrative burden on specialist teams. The use of electronic prescribing also offers promise but is not available to secondary care and specialist teams in most areas.

Significant inefficiencies are introduced when patients move between different providers. In cases where the quality of the diagnostic report is insufficient to enable a provider to confirm and continue care a patient may be required to undergo a repeat assessment. This problem could be addressed by agreed standards for diagnostic reports.

Although promising, efficiency savings are unlikely to significantly alleviate the burden without accompanying efforts.

Option 4: alter the service provision model

Another potential strategy is changing the ADHD service provision model. Instead of relying on specialist services for assessment and management, primary or secondary care could take up a larger portion of the workload.Reference Asherson, Leaver, Adamou, Arif, Askey and Butler6 More ‘complex’ and risky patients could be assessed and treated by ‘case-holding’ teams, if they are already on the case-load (e.g. community mental health, perinatal and forensic teams). This approach would make better use of specialist resources but would require significant funding, training and implementation time. Given that ADHD is such a common condition, sole responsibility cannot rest with specialist services alone.

Option 5: clinical prioritisation

A more controversial option is to limit access to services to those most severely affected by ADHD. This approach would raise ethical concerns and would pose significant practical challenges. A recent pilot to explore the viability of such an approach33 has received criticism.Reference Haydn34

Rationing within the NHS is typically used when the threshold in question is relatively simple and easily measurable, for example weight for bariatric surgery or visual acuity for cataract surgery. Rationing within ADHD services via symptom severity, impairment level, risk or a combination of all three would be challenging owing to the subjective nature of the responses to the scales and a concern that some patients might exaggerate reporting to meet the threshold. Furthermore, specific patient groups, potentially those with the greatest needs, may struggle to comply with such processes and may be further disadvantaged.

Summary of recommendations

  • Agreed standards on diagnostic assessments and reports could improve consistency and allow for more efficient management across providers.

  • A national target for ADHD waiting times might help better define and focus the impact of waiting times and stimulate positive change.

  • A national strategy for ADHD would assist in raising the profile of the problem and supporting commissioning decisions.

  • Additional funding is urgently required to enable adult ADHD services to better meet demand.

Conclusions

Adult ADHD services in the UK are at a critical juncture. With increasing demand and insufficient resources, the current system is struggling to provide adequate care for patients. Alternatives that combine efficient administrative systems, alternative service models and routine data collection for political focus might offer some relief. However, significant strides will be made only with additional funding and a shift in how we approach ADHD treatment. The introduction of a national target for starting diagnostic assessments within 3 months of referral could stimulate positive change. Such a target could be integrated into the NICE guidelines, helping to keep ADHD treatment at the forefront of health policy.

About the authors

Michael Smith, MSc, is a consultant psychiatrist and clinical lead of the adult ADHD service, Leeds and York Partnership NHS Foundation Trust, Leeds, UK. Raja A. S. Mukherjee, PhD, is a consultant psychiatrist in adult learning disability in the Adult Neurodevelopmental Team, Surrey and Borders Partnership NHS Foundation Trust, Redhill, UK. Ulrich Müller-Sedgwick, PhD, is a consultant psychiatrist and the Government of Jersey's lead for adult neurodevelopmental pathways, working with Adult Mental Health, Health and Community Services at Le Bas Centre, St Helier, Jersey, and a visiting research fellow in the Department of Psychiatry at the University of Cambridge, UK. Dietmar Hank, MSc, is a consultant psychiatrist and clinical lead of the adult ADHD service, Avon & Wiltshire Mental Health Partnership NHS Trust, Bath, UK. Peter Carpenter, MBChB, is an honorary lecturer in the School of Social and Community Medicine, University of Bristol, and Chair of the Neurodevelopmental Psychiatry Special Interest Group at the Royal College of Psychiatrists, London, UK. Marios Adamou, PhD, is a consultant psychiatrist and clinical lead of the adult ADHD service, South West Yorkshire Partnership NHS Foundation Trust, based at the School of Human and Health Studies, University of Huddersfield, UK.

Data availability

Data availability is not applicable to this article as no new data were created or analysed in its preparation.

Author contributions

All authors contributed to the writing of this editorial and had the opportunity to revise the manuscript before submission; all agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Funding

This work received no specific grant from any funding agency, commercial or not-for-profit sectors.

Declaration of interest

M.S. has received honoraria from Takeda Pharmaceuticals. R.M. has received honoraria for talks on ADHD for Takeda, Flynn and Jansen, all money directed to the research team. U.M. has received honoraria for consultancy and presentations from Takeda Pharmaceuticals. D.H. has received honoraria for presentations and/or consultancy work from Takeda, Flynn Pharma, Janssen and AGB-Pharma. M.A. has received honoraria for presentations from Takeda.

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