The ADHD Grey Zone: Why Patients Are Stuck Between Private Diagnosis and NHS Care
In England, a healthcare policy designed to reduce waiting times is instead creating a bureaucratic nightmare for patients with attention deficit hyperactivity disorder. Under the NHS "right to choose" scheme, patients with a GP referral can select a private provider for assessment and initial treatment funded by the health service. However, this system is breaking down, with private diagnoses frequently rejected by the NHS, leaving patients in limbo and wasting millions in public funds.
A Father's Experience Highlights Systemic Failure
Sameer Modha understands the ADHD system intimately, having navigated it for himself and his two children. While his own diagnosis proceeded relatively smoothly, his experience with his daughter revealed deep flaws in how private and NHS services interact.
"The diagnosis I obtained for my eldest child, after an assessment carried out privately by a very senior ex-Camhs director, someone who knows the system and has seen a huge amount of this, was later rejected by the NHS," Modha explains. He was informed the assessment did not comply with guidelines from the National Institute for Health and Care Excellence, which sets national healthcare standards.
This rejection forced Modha to have the diagnosis reconfirmed through the NHS, a process that only occurred after what he describes as "constant hassling." Even after achieving NHS confirmation, he struggled to coordinate care between different parts of the system, finding himself "caught between the private and state systems" with GPs reluctant to engage in shared care arrangements.
An Inefficient System Wasting Resources
Modha's experience reflects a broader pattern affecting thousands across England. The NHS increasingly refers patients to private providers that the health service pays for, only to subsequently reject those assessments. This creates an inefficient cycle that:
- Wastes an estimated £164 million annually on ADHD services
- Leaves patients without proper care
- Overwhelms mental health trusts already struggling with demand
One NHS trust has reported that this churn is clogging its ability to treat patients as people cycle back into services after private assessments stall. The Midlands Partnership University NHS Foundation Trust acknowledged in correspondence that it was struggling to cope, with the trend contributing to long waiting lists and reduced capacity for new and complex cases.
Structural Weaknesses in Right to Choose
The trust highlighted fundamental problems with the right to choose policy itself, noting that "there is limited regulation surrounding private ADHD providers." Providers can establish services and request to diagnose ADHD, but "at times their assessments do not comply with Nice guidelines."
Rather than relieving pressure on NHS services, the scheme appears to be recycling it. The trust observed that the current model "highlights the challenges and limitations" of a system that can diagnose quickly but cannot always find appropriately skilled staff to support prescribing.
Regulatory Action and Service Suspensions
Recent regulatory action has underscored the risks of this approach. ADHDNet, also known as Holistic ADHD Solutions, a private ADHD provider operating under right to choose, has been suspended from NHS work. The provider was registered with Norfolk and Waveney Integrated Care Board, allowing patients across England to use its services.
The ICB stated the suspension was a precaution triggered by concerns about "service management, safety oversight and continuity of care arrangements." This development highlights the quality control issues plaguing the current system.
Exploding Demand and Inadequate Capacity
In NHS Greater Manchester, adult ADHD services face particularly severe strain. Referrals have skyrocketed by more than 400%, from approximately 2,700 in 2022 to over 11,000 in 2024. More than 25,000 adults now wait for autism or ADHD assessments in the region alone.
Services were originally designed for far lower demand, and without significant changes, waiting times could exceed seven years—and in some cases reach ten years. NHS Greater Manchester estimates it would cost at least £30 million annually to fund current levels of right to choose diagnostic requests alone, without sufficient clinicians to deliver them.
Innovative Approaches to Manage Demand
Recognizing these challenges, NHS Greater Manchester is implementing a new approach to manage overwhelming demand. The system will introduce a central triage hub where all adult ADHD referrals receive an initial face-to-face assessment. Only those meeting agreed clinical thresholds will proceed to full NHS-funded diagnosis.
This model aims to:
- Reduce full diagnostic assessments by 70-80%
- Standardize clinical decisions across the region
- Reduce pressure on specialist services
Alongside this structural change, NHS Greater Manchester plans to expand community-based and non-clinical support so people can access help earlier while waiting for specialist assessment.
The Human Cost of Systemic Failure
Throughout this bureaucratic maze, patients bear the heaviest burden. One father described how, after three years of treatment, his son's GP practice announced without warning that it would stop working with a private provider. Although his son was referred back to NHS services, waiting times "exceed six months, guaranteeing a treatment gap." His consultant warned of predictable harms if treatment stopped abruptly.
Modha captures the impossible position facing families: "You're damned if you do and damned if you don't—try to get help privately and integrate later, or try to do it all through the NHS and wait two years, by which time your child may be dead."
Industry Response and Future Solutions
A spokesperson for the Independent Healthcare Providers Network acknowledged the challenges, stating: "Independent providers are playing an essential role in supporting the provision of NHS ADHD services. Shared care is a significant challenge and there are real risks to patients when care is not coordinated effectively between providers."
The spokesperson emphasized the need for collaborative solutions involving government, NHS commissioners, GP representative bodies, and independent providers. While concerns about safety and quality should be addressed through robust regulation, the "overriding challenge facing ADHD services is a longstanding lack of capacity and unacceptably long waiting times for diagnosis."
Health Secretary Wes Streeting acknowledged the scale of the problem when asked whether referrals for autism and ADHD amounted to an epidemic that the government was failing to manage. His response was tellingly brief: "Well, in a nutshell, yes."
As demand continues to outpace capacity, exacerbated by workforce shortages, the current system leaves thousands of patients navigating a confusing landscape between private and NHS care. The structural reforms being tested in Greater Manchester may offer a template for other regions, but for now, patients remain caught in what many describe as a broken system that fails to deliver timely, coordinated care for those with ADHD.
