Sameer Modha knows the ADHD system all too well. He has been diagnosed himself, as have his two children, giving him a clear view of how the system works – and where it breaks down.
While his own diagnosis was relatively straightforward, the experience with his daughter was very different. The diagnosis he obtained for his eldest child, after an assessment carried out privately by a “very senior ex-Camhs [child and adolescent mental health service] director, someone who knows the system and has seen a huge amount of this”, was later rejected by the NHS. He was told it was not compliant with guidelines from the National Institute for Health and Care Excellence (Nice), which sets healthcare standards nationally.
It is a common experience. The NHS is increasingly referring patients to private providers, which the health service pays for, only for those assessments to be rejected. The result is an inefficient system that wastes public money and leaves patients without care and mental health trusts struggling to cope.
One NHS trust has said this churn is clogging its ability to treat patients as people cycle back into services after private assessments stall. The NHS is overspending an estimated £164m a year on ADHD services.
Modha had to have the diagnosis reconfirmed through the NHS – something that only happened after “constant hassling” – and even after that, he has struggled to get different parts of the system to work together. He describes being “caught between the private and state systems”, with GPs reluctant to engage in shared care.
The ADHD system in the UK has broken down. Speaking to BBC Radio Oxford this week, Wes Streeting, the health secretary, was asked whether referrals for autism and ADHD amounted to an epidemic that the government was failing to manage. “Well, in a nutshell, yes,” he replied.
Part of the problem is the way the private system and the NHS are working together, something Modha experienced first hand. Under “right to choose”, an NHS policy in England, patients with a GP referral can select a private provider for assessment and initial treatment funded by the NHS, rather than waiting for a local NHS service. In theory, care is then handed back to the NHS through shared-care arrangements, but often this does not happen.
Although Modha’s daughter was diagnosed not through right to choose but independently via a private provider, the same structural problems emerged when care needed to be integrated back into the NHS.
Trusts say patients assessed through private providers are being sent back into NHS services in growing numbers. In a letter shared with the Guardian, the Midlands partnership university NHS foundation trust acknowledged it was struggling to cope and the trend was contributing to long waiting lists and “reduced capacity for new and complex cases”.
The trust highlighted the structural weaknesses of right to choose itself. “There is limited regulation surrounding private ADHD providers,” it wrote, noting that providers could establish services and request to diagnose ADHD, but that “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 said 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 has underlined the risks of the 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 (ICB), allowing patients across England to use its services. The ICB said the suspension was a precaution triggered by concerns about “service management, safety oversight and continuity of care arrangements”.
In NHS Greater Manchester, adult ADHD services are under particularly severe strain. Referrals have risen by more than 400%, from about 2,700 in 2022 to more than 11,000 in 2024, with more than 25,000 adults now waiting for autism or ADHD assessments. Services were designed for far lower demand; without change, waiting times could exceed seven or in some cases 10 years.
Demand continues to outpace capacity, worsened by workforce shortages. NHS Greater Manchester estimates it would cost at least £30m a year to fund current levels of right to choose diagnostic requests alone, without enough clinicians to deliver them. Waits already range from 18 months to more than seven years.
A key problem identified is that diagnosis has become the gateway to support, even though many people need help that does not require a full specialist diagnostic assessment. In response, NHS Greater Manchester is introducing a central triage hub, with all adult ADHD referrals receiving an initial face-to-face assessment. Only those meeting agreed clinical thresholds will go on to full NHS-funded diagnosis.
The model aims to reduce full diagnostic assessments by 70-80%, standardise decisions and reduce pressure on specialist services. Alongside this, NHS Greater Manchester says it will expand community-based and non-clinical support so people can access help earlier while waiting.
Throughout all of this, it is patients who bear the cost. One father told the Guardian that after three years and without warning, his son’s GP practice announced 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.
Modha says: “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.”
A spokesperson for the Independent Healthcare Providers Network (IHPN), said: “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, and it’s important that the government, NHS commissioners, relevant GP representative bodies and independent providers work collaboratively to find solutions.”
“While any concerns about safety, quality or consistency of care should always be taken seriously and addressed through robust regulation and commissioning, the overriding challenge facing ADHD services is a longstanding lack of capacity and unacceptably long waiting times for diagnosis.”
