New report from the Parliamentary and Health Service Ombudsman highlights fragmented care and regional variation in access to services. 

Paula Sussex, the Parliamentary and Health Service Ombudsman, is calling on the government to publish clear national guidance to improve ADHD and autism services and to clarify patients’ right to choose a provider as complaints about care continue to rise. 

She is also calling for more support for Integrated Care Boards (ICBs) to make consistent decisions about ADHD and autism services that meet the needs of their local communities. 

The Ombudsman also recommends that NHS-funded providers delivering ADHD and/or autism assessments, but not ongoing care, should be registered with the Care Quality Commission. Currently, these providers are neither inspected nor monitored, creating a regulatory gap that must be urgently addressed to make sure patients receive consistent, safe, high-quality care. 

“ADHD and autism services are under significant pressure, with demand outstripping capacity. While commissioning cannot solve these supply constraints, the way services are designed, commissioned and delivered can compound the pressure people experience and make it harder to make the best use of available resources,” she said. 

“When these decisions work well, people can access high-quality care wherever they live. Right now, the system is too complex and inconsistent, leaving too many patients falling through the gaps,” she added. 

Too many cases

In its new report, Improving ADHD and autism services: commissioning with confidence, the Ombudsman shared its findings based on 3,000 complaints. It found recurring issues including uncertainty about patients’ right to choose a provider, inconsistent recognition of diagnoses across NHS and independent providers, and lengthy waits for assessment and treatment. 

In one case, a patient asked to be referred to Psychiatry UK for his ADHD treatment. Under Right to Choose legislation, patients in England can choose any NHS-funded provider offering a specialist service for their care. South East London ICB denied his request and wrongly insisted he be referred to a local ADHD service which was still being developed and had no opening date. The Ombudsman found his NHS treatment was delayed by five months and the patient felt he had no choice but to pay for private care amounting to almost £4,000. 

In another investigation, South London and Maudsley NHS Foundation Trust removed a woman from the ADHD medication titration (the process of adjusting medication to find the right balance) waiting list without warning or valid reason, leaving her without specialist monitoring support for around six months. This delay may have affected her symptoms and her ability to carry out everyday activities, causing frustration and distress. 

“People should not have to fight their way through a confusing system to get ADHD and autism care. We have seen clear evidence that this has created a postcode lottery, with too many people’s access to care depending on where they live,” said Sussex.