ADHD UK Fights NHS Service Cut

NHS Halts Adult ADHD Care in Midlands, Sparking Legal Crisis and Fears of a National Precedent

A choice made by National Health Service officials in Coventry and Warwickshire, suspending evaluations for attention deficit hyperactivity disorder, has sparked intense opposition. Campaigners are now getting ready to pursue a lawsuit, asserting the move unlawfully denies patients their rights and might establish a dangerous example for other financially strained health trusts across the country. The indefinite pause, which affects anyone over the age of 25, leaves thousands of vulnerable adults with no path to diagnosis or treatment other than paying for private care, an option many cannot afford.

On 21 May, the Integrated Care Board for Coventry and Warwickshire (ICB) implemented the suspension, framing it as a necessary, temporary measure. Officials state the action will allow them to concentrate resources on clearing a colossal backlog of more than 7,500 children who are currently waiting for an ADHD assessment. This move has left adult residents in an unprecedented and distressing position, unable to access essential diagnostic services that are the gateway to medication and support.

A Controversial Decision with Immediate Consequences

Officials from the Coventry and Warwickshire integrated care board announced the pause, calling it an "emergency policy" to manage what it calls "unacceptable" waiting times for young people. Some children in the region have been waiting for up to a decade to be assessed, a delay that can have profound consequences on their development. An official representative for the board argued that prioritising children is critical because a diagnosis can help them succeed in school, develop social skills, and learn to thrive in society.

However, this policy has drawn sharp criticism. While individuals already on the waiting list will remain, fresh evaluation requests for individuals older than 25 will not be processed. This effectively closes the door to thousands who may be struggling with the debilitating effects of undiagnosed ADHD. The charity ADHD UK highlights this marks the premier instance of a trust halting referrals without accrediting alternative providers, leaving private assessment as the only route.

The Financial Barrier to Diagnosis

For many adults in the region, the board's decision creates an insurmountable financial hurdle. Private ADHD assessments in the UK are expensive, with average costs in 2024 hovering around £1,200 for adults. A previous service user from Coventry reported spending £1,500 for a private diagnosis after being informed the NHS wait could be as long as three years. With the new suspension in place, this is no longer a choice to bypass a long wait but the only option available, effectively creating a two-tier system where care is dependent on the ability to pay.

This high cost, which can range from £700 to over £2,000, places diagnosis far beyond the reach of many. Follow-up consultations and private prescriptions can add hundreds or even thousands of pounds to the initial bill. This financial strain forces individuals to choose between their health and their financial stability, a choice that campaigners argue no one should have to make for essential healthcare services.

ADHD UK Mounts Legal Challenge

In response to the suspension, the charity ADHD UK is starting a lawsuit aimed at the ICB for Coventry and Warwickshire. The case will argue based on the principles of "Right to Choose," a key patient right in England. This legal framework allows patients, following a referral from their doctor for specific conditions, to select their service provider from any organisation that has an NHS contract, including independent ones. By not accrediting alternative providers, the charity argues the board is unlawfully removing this right.

The chief executive for ADHD UK, Henry Shelford, described the board’s action as "ridiculous" and discriminatory. He pointed to the severe risks associated with untreated ADHD, including a significantly higher likelihood of suicide attempts among both men and women. Shelford stressed that medication, which can yield a profoundly positive impact, is only accessible following a formal diagnosis, making the suspension of assessments a matter of patient safety.

Understanding the 'Right to Choose'

The NHS "Right to Choose" has been a vital pathway for many seeking an ADHD diagnosis, especially considering the extensive queues for local services. Established in 2018 for mental health, it empowers patients in England to select a provider from anywhere in the country, as long as that provider holds an NHS contract for the required service. This right is crucial for conditions like ADHD where local waiting times can stretch into years, while other accredited providers may offer assessments within months.

The ICB’s decision in Coventry and Warwickshire to pause referrals without providing an alternative path via the "Right to Choose" framework is what makes this situation unique and legally questionable. Other trusts that have temporarily halted referrals have typically commissioned services from independent providers to manage demand. The current situation in the Midlands, however, leaves a significant portion of the adult population with no NHS-funded pathway to care.

A Damaging Precedent for the NHS

Henry Shelford from ADHD UK voiced grave concerns that this move by a financially pressed trust could create a blueprint for others to follow. The fear is that other NHS boards facing similar budgetary constraints might see cutting adult ADHD services as a viable, if controversial, cost-saving measure. Such a trend would be catastrophic for adult neurodiversity services nationwide, further marginalising a group that already faces significant barriers to getting a diagnosis and receiving support.

This potential domino effect could dismantle progress made in adult ADHD care over the past decade. It risks normalising the idea that essential mental health services are expendable when budgets are tight. Campaigners argue that this approach is not only discriminatory but also economically short-sighted, ignoring the long-term societal costs of untreated ADHD.

Image Credit - BBC

Official Justification: A Children's Crisis

The chief medical officer for the NHS ICB in Coventry and Warwickshire, Dr Imogen Staveley, defended the suspension as an "emergency policy." She stated it was introduced to confront the "unacceptable" waiting times for ADHD assessments that are currently affecting more than 7,500 children within the locality. The board’s ambition is that this temporary pause will help establish a lasting, "all-age" ADHD service route for coming years by first addressing the most urgent backlog.

The focus on children is based on the argument that early diagnosis has a more profound impact, helping young people with educational attainment and social development. An official representative for the board emphasised these key developmental factors as the primary motivation for redirecting resources to neurodivergent children for the time being. The board confirmed the choice would not impact existing evaluation requests from adults.

The Scale of the Children's Backlog

The 7,500 children awaiting an assessment within the region of Coventry and Warwickshire highlight a system at breaking point. Across the country, the situation is similarly dire. A report from ADHD UK revealed that waiting times for children can range from five weeks in one London trust to a devastating five years in Belfast. Some children in the Coventry area have reportedly been waiting for a decade.

These extreme delays occur during crucial developmental windows, leading to poor academic outcomes, social exclusion, and significant strain on families. The immense pressure on child and adolescent mental health services (CAMHS) is a national crisis, and the decision affecting Coventry and Warwickshire is a stark illustration of the desperate measures being taken to manage it.

What is ADHD?

The World Health Organization characterizes attention deficit hyperactivity disorder as a continuing pattern of inattentiveness or hyperactive and impulsive behavior that has a detrimental effect on functioning and development. It is a neurodevelopmental condition, meaning the brain develops differently. While often associated with children, it persists into adulthood for a majority of those diagnosed. Its impact is felt across all aspects of life, including academic, professional, and social functioning.

Symptoms can include difficulty maintaining focus, disorganisation, poor time management, impulsivity, and emotional dysregulation. In adults, these challenges can lead to unstable employment, relationship difficulties, financial problems, and low self-esteem. Receiving a diagnosis marks the initial step towards getting treatments, such as medication and therapy, which often proves to be transformative.

A System Struggling to Adapt

Professor Anita Thapar, who leads the NHS England ADHD taskforce as a psychiatrist, stated that services face immense pressure because they are "playing catch-up" with the modern understanding of the condition. Over the last two decades, research has completely transformed knowledge about ADHD, revealing it to be a common and lifelong condition. However, the services within the NHS have failed to develop at the same speed to meet this new reality.

This mismatch between scientific understanding and service provision is at the heart of the current crisis. Services were frequently designed decades ago, at a time the condition was thought to be a rare childhood disorder affecting mainly boys. This outdated model is entirely inadequate to handle the current demand from a much broader population, including millions of adults.

Under-Recognition, Not Over-Diagnosis

Professor Thapar's taskforce has found compelling evidence that ADHD in England is significantly under-acknowledged, diagnosed too infrequently, and receives insufficient treatment. This directly counters a common misconception that the condition is over-diagnosed. The reality is that a large part of the population affected by ADHD, particularly adults and females, never receives a formal diagnosis or the support they need. This lack of recognition has severe consequences for individuals and society.

The taskforce's interim report highlighted that recognised rates of ADHD in England are lower than the expected prevalence of 3-4% in adults and 3-5% in children. This gap represents hundreds of thousands of people struggling without support. The report stresses the need for timely, needs-based support, even before a formal diagnosis is made.

The Gender Gap in Diagnosis

A significant factor in under-diagnosis is the historical gender bias in how ADHD presents and is recognised. Services and diagnostic criteria were traditionally based on the presentation of hyperactive young boys. As a result, girls and women, who often exhibit more inattentive symptoms, have been systematically overlooked or misdiagnosed with other conditions like anxiety or depression.

This diagnostic gap means many women reach adulthood without understanding the root of their difficulties. They may have struggled through school and in their careers, internalising their challenges as personal failures. Correctly identifying ADHD can provide profound relief and unlock access to appropriate support, but only if the assessment pathway is available.

The Lifelong Consequences of Neglect

Untreated ADHD has been linked to a range of severe negative outcomes. Research shows adults with the condition have a higher mortality rate and may have a significantly shorter life expectancy. A recent UK study found that adults with a diagnosis live, on average, 6.78 years fewer than the general population, largely due to preventable factors. These include increased risks of substance misuse, financial instability, interaction with the legal system, and co-occurring issues with mental and physical wellbeing, for example obesity and cardiovascular problems.

The societal costs are also substantial. Untreated ADHD is associated with educational underachievement, unemployment, and homelessness. Delivering timely evaluation and therapy is not just a matter of individual wellbeing but also a crucial public health intervention that can reduce long-term costs to the justice, health, and welfare systems.

The Financial Pressures on Health Boards

This decision, made for the Coventry and Warwickshire area, cannot be viewed in isolation. It reflects the immense financial strain faced by NHS Integrated Care Boards across England. For the 2023-24 financial year, NHS systems reported an aggregated deficit of £1.4 billion, more than double the previous year. ICBs are being asked to make unprecedented efficiency savings while dealing with rising costs, inflation, and the financial impact of industrial action.

Sarah Walter, representing the NHS Confederation, noted that boards are making difficult decisions regarding the provisions they arrange for, operating within a "very tight financial envelope". This environment forces them into pragmatic, and often painful, decisions about prioritisation. The suspension of adult ADHD referrals is a direct consequence of these system-wide financial pressures, pitting the needs of one vulnerable group against another.

An Untapped Independent Sector

In this climate of overwhelming demand and constrained resources, some argue the independent sector could offer a vital lifeline. David Hare, who leads the Independent Healthcare Providers Network (IHPN), stated that there is ample "capacity available locally within the independent sector". He believes this capacity could be leveraged to reduce backlogs and enhance pathways to evaluation and therapy for everyone, regardless of age.

Independent providers already play a significant role in delivering NHS care, particularly in mental health, where they provide approximately a quarter of NHS beds. Utilising these providers through the "Right to Choose" scheme has been a key strategy for managing waiting lists. The failure to leverage this capacity for the Coventry and Warwickshire region is a central point of contention for critics of the board's decision.

A Life Transformed by Diagnosis

The story of Andy Morrison, a resident of Coventry, powerfully illustrates what is at stake. Before receiving a diagnosis, he struggled with alcohol abuse and found it impossible to maintain employment for over half a year. Confronted with a possible NHS wait of three years, he spent £1,500 on a private evaluation. The diagnosis and subsequent medication were life-changing.

He reported having "no regrets" and that receiving the diagnosis brought clearness and perspective for a lifetime of struggles. His experience encapsulates the immense personal cost of delayed diagnosis. It also highlights the profound sense of grief many feel for the kind of life that might have been possible if their condition had been recognised and supported sooner.

The National ADHD Taskforce

In 2024, NHS England created a taskforce for ADHD to address the rising demand and unacceptable waiting times. Chaired by Professor Anita Thapar, the group brings together experts to identify ways to improve care. The taskforce is examining the entire system, from data collection to service models, to create a more joined-up and effective approach across health, education, and justice systems.

An interim report from the taskforce stressed the need to improve data, suggesting that many services remain paper-based and inefficient. It called for the digitisation of services to free up clinician time and better manage waiting lists. The taskforce also recommended a shift towards needs-led care, where individuals can receive practical support before they even get a formal diagnosis.

NHS England's Response

NHS England has acknowledged that services for ADHD are experiencing considerable strain due to a massive rise in individuals seeking assistance. A spokesperson admitted this is causing "unacceptably long queues for evaluation and therapy," especially for the younger population. While stating that local groups have the responsibility for tackling these delays, the national body points to the work of the taskforce focused on ADHD as the primary way to improve patient services countrywide.

The national body is also supporting local systems that are trialling innovative ways to deliver ADHD services more efficiently. However, for adults within the Coventry and Warwickshire area, these long-term strategies offer little immediate comfort as they face a complete shutdown of their route to an NHS diagnosis. The unfolding legal battle will be watched closely, as its outcome could determine the future of adult ADHD care not just in one region, but across all of England.