Right to Choose Inflates ADHD Bills While Patients Still Wait

Local NHS boards in England are paying £300 to £3,000 for similar ADHD and autism assessments, the NHS Alliance said on Friday. The group, which speaks for health managers, says Right to Choose has let new private and charity clinics multiply while bills run “out of control.”

The same legal route has shortened some waits. It has not emptied the lists. Hundreds of thousands of people are still in the queue, and several boards have started capping the right they cannot refuse.

Right to Choose Was Never an ADHD Policy

Right to Choose sits in the NHS Constitution for England. It is a funding rule for a first outpatient appointment after a GP referral, not a specialist neurodiversity programme. It became the main escape hatch for ADHD and autism because local NHS lists stretched into years and some independent clinics already held an NHS contract somewhere in the country.

South West London’s integrated care board tells patients they can choose an independent provider from anywhere in England, with the NHS picking up the bill. Only a GP can make that referral. Self-referrals do not count, and some clinics assess only, with no medicine and no annual review.

What the legal right covers, and what it does not

• Who pays: The patient is not charged; the local integrated care board funds the appointment as NHS work.
• Who qualifies: The clinic must hold an NHS contract with an English board, or with NHS England, for that service.
• First visit only: The right applies to the first outpatient appointment, not to an open-ended private relationship.
• Shared care: A GP can still refuse to take on prescribing if the report is thin or the clinic will not work with local rules.

GP surgeries have been circulating provider grids that split clinics by adult or child work, digital or face-to-face, and whether they will enter shared care. Several well-known names offer digital-only Right to Choose lists. That is how a national market grew out of a local waiting list.

One Board Pays £300 and Another Pays £3,000

Unlike a hip replacement, ADHD and autism work has no mandatory national tariff. NHS England published guide prices for ADHD assessments in the 2026/27 Payment Scheme and raised several of them after consultation. The document still calls those figures a non-mandated benchmark. Boards may agree a different local price.

The NHS Alliance told the BBC that one board was still being invoiced anywhere from £300 to £3,000 for similar work. That spread sits both below and far above the new guides. One board saw costs rise tenfold in a year, to £1.5 million a month. Another went from £4 million a year to £30 million across two years. Cheshire and Merseyside’s adult ADHD spend is projected at £51 million this year, up from £11 million in 2023-24.

A March scrutiny paper for Gateshead Council put North East and North Cumbria’s Right to Choose bill at about £3.5 million in 2023/24 and about £28 million in 2025/26, with 19,650 Right to Choose assessments in the later year. Centre for Health and the Public Interest research circulated in January estimated that 32 of 42 boards would spend £314 million on ADHD services in 2025/26 against a £150 million budget, a £164 million overrun. Extra demand is real. So is a market in which the buyer cannot name a single price.

A spokeswoman for the Independent Healthcare Providers Network said private clinics had brought extra capacity, and she backed a national tariff so the NHS pays consistent rates. On that narrow point the private lobby and the managers’ group agree. The 2026/27 guides still do not bind anyone.

How Long Are ADHD and Autism Waiting Lists in England?

At the end of March 2026 there were 505,815 open referrals for a possible ADHD diagnosis in England, according to a House of Commons Library note built on NHS Digital figures, including 338,695 adults and 167,120 children. Add 177,244 people aged five to 24 referred through community health services, and the possible total reaches 683,059. About six in ten adults (63.1%) and two thirds of children (65%) had already waited more than a year. NHS Digital has estimated that around 2.5 million people in England have ADHD.

The March 2026 lists

• ADHD open referrals: 505,815, with 24,480 new referrals that month alone.
• Autism open referrals: 270,701 people with an open referral for suspected autism, of whom 242,708 (89.7%) had already waited at least 13 weeks.
• First autism appointment: Only 3.7% of those long-wait autism patients had been seen within the recommended 13 weeks.
• Devon’s adult ADHD list: 5,051 people, with a wait the trust put at over five years, and 2,991 waiting for autism, many first referred in April 2019.

NHS England’s independent ADHD Taskforce, set up in 2024, had already reported that ADHD is under-recognised and under-treated in parts of the population. Local trusts still quote multi-year waits for people who stay on the NHS list. Right to Choose clinics advertise gaps of a few weeks until a board hits its activity cap and the fast lane closes.

Diagnosis Alone Does Not Trigger a CQC Inspection

The Alliance’s sharpest operational complaint is volume. One board said it was dealing with 48 providers, four times as many as two years earlier. Managers say they cannot check quality and safety across that many contracts. The regulator’s own rules explain part of why the field is so crowded.

The Care Quality Commission says clinics that only diagnose ADHD or autism, with no treatment, do not need to register. Diagnosis is not treated as “treatment of disease, disorder or injury,” and it does not use equipment that would bring it under diagnostic and screening rules. Stephen Kinnock, then a health minister, confirmed the same split in a written Commons answer in April 2025: independent providers that only diagnose, without treatment, sit outside CQC registration as the regulations stand. A clinic that also titrates medicine does have to register. A clinic that stops at the letter does not.

They understand the anguish and frustration caused by long delays in the system as people wait for assessments, treatment and support. But in working to meeting demand they face soaring costs that are running out of control.

Rebecca Gray, NHS Alliance, speaking to the BBC

Gray called the arrangement a “bad deal” for patients and taxpayers and said the system risked “chaos.” Mel Merritt of the National Autistic Society said spending was going on short-term fixes after years of thin investment, and that people still faced “unacceptable” delays. The public argument that followed the BBC report jumped quickly to welfare claims and adult overdiagnosis. That fight does not set the invoice. A legal right with no ceiling, sold by firms the CQC does not have to inspect, does.

Commissioners Are Capping the Same Right They Cannot Refuse

No English board has closed Right to Choose outright, according to an independent 1 August 2026 snapshot of all 42 commissioner footprints by the site Finally Seen, checked against board papers. Adult ADHD was capped or paused in 17 areas and adult autism in 15. Referrals still go on a list. Bookings stop once a yearly volume is used up. Greater Manchester and Hampshire and Isle of Wight tightened those limits rather than lifting them in April. Coventry and Warwickshire was the exception, ending an over-25 age bar in May.

NHS England’s own payment guidance tells boards that non-contract activity should be occasional, not a substitute for a signed contract, and that independent diagnostic reports should be accepted by NHS titration services unless there is a clear clinical reason not to. In other words, the centre is asking local systems to honour the very assessments they say they cannot quality-check, because repeating them wastes more money.

How the market was built

1. April 2019: About 21,000 children and young people were waiting for an ADHD assessment, the figure later used by the Fonagy review.
2. April 2023: NHS England publishes a national framework for autism assessment services, still without a binding price.
3. 2024: NHS England commissions an independent ADHD Taskforce on access and support.
4. December 2025: Health Secretary Wes Streeting asks Professor Peter Fonagy to lead a review of prevalence and support, with Professor Sir Simon Wessely and Professor Gillian Baird as vice chairs.
5. March 2026: NHS England adds non-mandatory ADHD and autism guide prices to the Payment Scheme, then lifts several of them after consultation.
6. June 2026: The review’s interim report is published, with no final recommendations.
7. August 2026: The Parliamentary and Health Service Ombudsman reports complaints about ADHD and autism care up from 410 in 2021/22 to 1,257 in 2025/26. The NHS Alliance then warns that costs are out of control.

Ombudsman Paula Sussex said people should not have to fight a confusing system and that access had become a postcode lottery. Henry Shelford, chief executive of ADHD UK, said whether someone is seen in months or years “depends almost entirely on where you live.” The Alliance was describing the bill for trying to buy a way around that lottery.

What the Fonagy Review Has Already Found

The government’s promised “new national approach” is waiting on Fonagy’s final report, which ministers have said would land later this summer. As of 28 August it had not appeared. The children and young people waiting for an ADHD assessment rose from around 21,000 in April 2019 to around 270,000 by December 2025, the interim report said. Primary care diagnoses accelerated after 2020, and incidence among women aged 20 to 24 more than doubled against pre-pandemic trends.

Population surveys that do not depend on a clinic visit look flatter. NICE still cites prevalence of about 5% in children and young people and 2% to 3% in adults, with no dramatic rise in underlying symptoms over recent decades. Fonagy’s team wrote that stable survey prevalence can sit beside fast-rising diagnosis and demand, and that underdiagnosis, misdiagnosis and overdiagnosis are not mutually exclusive. Among children and young people, the share of diagnoses followed by medication has roughly halved since the pandemic, a shift the review flagged for more work rather than a verdict.

In March, 32 clinicians and researchers writing in the British Journal of Psychiatry said NHS diagnosis rates still sit below expected population prevalence and that scare talk of overdiagnosis could deny care. Streeting had ordered the review amid concern about sickness benefits as well as clinic queues. Those two arguments now share a waiting room. They do not share a fix for an invoice that a board cannot cap without rationing the right itself.

After the Diagnosis, Many Patients Hit a Second Queue

A faster letter is not a pathway. South West London’s board warns that some Right to Choose clinics cannot start medicine, and that a new assessment may be needed if a private report is not accepted. Devon Partnership NHS Trust listed 1,211 adults waiting for treatment after a diagnosis made elsewhere, on top of the 5,051 still waiting to be assessed. NHS England’s payment guidance tells commissioners to resource pre-diagnostic adjustments and to avoid paying twice for DNA appointments, which should already sit inside the assessment price. Shared care still depends on a GP who may never have chosen the clinic.

NHS Alliance managers say they are stuck between those waits and a bill they cannot forecast. Private providers say they are the spare capacity the NHS failed to build. Both can be true at once. The policy that let patients skip a five-year Devon list also let 48 suppliers invoice one board at unfixed prices, some of them for a diagnosis the CQC does not regulate. Until Fonagy reports and a tariff actually binds, Cheshire and Merseyside is still pointing at £51 million for adult ADHD this year, and the chairs in Devon are still not moving.

Disclaimer: This article is news reporting on NHS commissioning, waiting times and regulation for ADHD and autism assessments in England. It is for information only and is not medical, diagnostic, prescribing or legal advice. It does not tell anyone whether to seek an assessment, accept a diagnosis, start or stop medication, claim benefits, or use Right to Choose. Readers with health questions should speak to their GP or another qualified clinician, and anyone with a commissioning or legal dispute should take advice from the relevant NHS body or a solicitor. Figures, waiting lists and policy positions are those given by the cited sources as of 28 August 2026 and may change when the independent review is published or when local boards reset contracts.