ADHD and autism costs running "out of control"

NHS leaders say the costs of meeting soaring demand for ADHD and autism services in England are running out of control and have become unsustainable.

They say the steep and relentless rise in demand since the pandemic is forcing some to close waiting lists and look at reining in other services they provide.
 
The NHS Alliance, which speaks for organisations across the health and care system, says local health leaders are keenly aware of the deep frustration felt by families of children and adults who face very long delays, and are doing all they can to address them.
 
However, they are caught between "a rock and a hard place".
 
Spending in some areas on ADHD and autism has risen by up to ten-fold over the course of a year. For example, one integrated care board (ICB) said its monthly spend had risen from £146,000 in 2024/25 to £1.5 million last year. Another reported an increased spend on adult ADHD services from £11 million in 2023/24 to a projected £51 million this financial year.
 
The NHS Alliance says increased demand and a lack of NHS capacity has led to a big influx of new providers. This has been fuelled by patients’ Right to Choose which allows people seeking diagnosis for themselves or a child to opt for any qualified provider. One ICB told the NHS Alliance it now has 80 providers on its patch. Another said that two years ago it had received invoices from 12 – 14 providers, a figure which has now risen to 48.
 
This increased capacity has helped to ease some delays for assessments, but – due to the lack of a national tariff - has resulted in huge variations in the prices paid for services, adding to already-severe cost pressures. One ICB told the NHS Alliance it was paying £300 to £3000 for similar services. 
 
The rapid expansion of new providers has also prompted concerns from ICBs about quality assurance and regulation, especially when large numbers of small, non-regulated providers enter the market that are able to deliver assessments but not ongoing care.  
 
Health teams from ICBs, mental health and community providers and primary care have been working to improve access to diagnosis and treatment of ADHD and autism. These include new approaches - some developed through collaboration between NHS organisations and independent sector providers - to test ways of assessing what people need and offering support while they wait. 
 
Many of these initiatives are making a real difference for patients, their families and communities, but local health leaders are clear that a national solution is needed.  
 
They are worried that overspends due to unplanned activity could affect other important services. For example, one ICB has said it had to delay the roll-out of a Learning Disability Intensive Support Team. Financial pressures have also forced some ICBs to close waiting lists in order to manage existing demands, exacerbating the postcode lottery in access. 
 
The NHS Alliance is calling for:
•      A national mandatory price (or tariff) for ADHD and autism services that reflects the cost of service provision, delivering good value for money. It would also improve consistency and quality of services for patients.
•      A national service specification applied consistently across all NHS-funded providers. This would safeguard quality and tackle unwarranted variation.
 
Rebecca Gray, director of the NHS Alliance’s mental health network said: 
"Local health leaders are caught between a rock and a hard place. 
"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 meet rising demand they face soaring costs that are running out of control.
"As commissioners they must balance their budgets. Unplanned overspends on ADHD and autism assessments and treatment can impact on other activities and disrupt long term planning.
"The current situation is unsustainable and delivers a bad deal for patients and taxpayers.
"We hope forthcoming national investigations including the Independent Review into mental health conditions, ADHD and autism will shine a light on what lies behind the recent surge in demand for assessments. 
"That so many people feel they will not get the support they or their child needs without an assessment reflects broader challenges across education, health and employment.
"In the short term we need to be able to better manage and target the limited resources we have.  
"Better controls and consistency now will help ensure that those seeking support in the future do not lose out.
"Taken together, a national tariff and service specification for ADHD and autism would remove the risk of chaos in the market, improve the quality and consistency of services for patients and ensure the NHS can use its resources more effectively.”