NHS boards impose two-year waits for ADHD and autism assessments

At least 15 integrated care boards are restricting access to assessments as demand and financial pressures leave almost 1.3 million people waiting.

NHS organisations across England are increasingly rationing access to ADHD and autism assessments as soaring demand and budget pressure collide, with some areas now telling patients to expect to wait at least two years before they can be seen by an independent provider.

The Guardian reported that four integrated care boards covering large parts of England have adopted minimum waits of two years or more, while 15 boards, serving about 19 million people in total, have introduced some form of restriction on assessments. Those limits include caps on the number of appointments funded each year and “clinical prioritisation” systems that reserve assessments for people judged to have the most severe needs.

The changes come as the NHS struggles to keep up with a sharp rise in referrals and diagnoses. A government-commissioned review led by Professor Peter Fonagy, which had been due for publication this week before being delayed until early next month, is understood to warn about uneven assessment quality, financial incentives tied to assessment activity and the growing strain placed on families, schools and employers. The review also highlights rapid increases in recorded neurodiversity among boys since 2000, including a rise in autism prevalence among seven- to 18-year-old boys from 0.2% to 4.7% and an increase in ADHD from 0.4% to 5.1%.

The effect of the restrictions is not limited to NHS waiting lists. Because patients in England can usually exercise a legal right to choose an alternative provider, many ADHD and autism assessments are carried out by private clinics paid for by the NHS. But “minimum waits” imposed after referral block access to those providers for long periods, effectively forcing families who can afford it to pay privately. The Guardian said there were about 960,000 people waiting for an ADHD assessment in England and another 295,000 waiting for an autism assessment.

West Yorkshire Integrated Care Board has introduced one of the toughest measures, requiring patients to wait two years after referral before they can be assessed through an independent provider. The board said its spending on such assessments had risen from £7m in 2023-24 to £21m last year. In the North East and North Cumbria, the board says independent providers are working to an initial minimum wait of about 78 weeks, while Somerset has set a 52-week minimum and Devon’s is 14 weeks. Kent and Medway has also imposed a minimum wait, and in Hampshire and the Isle of Wight, ADHD and autism assessments are now limited to people who meet priority criteria.

Campaigners and charities say the policy amounts to rationing by stealth. Henry Shelford, chief executive of ADHD UK, told The Guardian that a two-year minimum wait was “heartless and dangerous”. The National Autistic Society said long delays can leave children waiting years for the school support they need, while Finally Seen, a group that tracks restrictions on the right to choose, said a two-year minimum wait was “not a waiting list” but “a locked door with a date on it”. The Independent Healthcare Providers Network has urged the NHS to use more of the independent sector’s capacity, arguing that delays can damage mental health, education, work and family life. NHS Alliance’s mental health network acknowledged the frustration but said soaring demand and the need to balance budgets had pushed some local systems towards minimum waits or even closed waiting lists.