• New report highlights fragmented care and regional variation in access to services alongside a more than 200% rise in complaints about ADHD and autism.   
• Government must introduce national guidance and stronger regulation to tackle delays in diagnosis and treatment, improve access to care, and clarify patients’ right to choose a provider.  
• One Ombudsman investigation found a man was referred to a local ADHD service that had not yet opened. He paid almost £4,000 for private treatment.    

ADHD and autism services are failing too many people because of the way they are designed, commissioned, and delivered, England’s Health Ombudsman has said, as complaints about care continue to rise.  

To address these growing issues, Paula Sussex CBE, the Parliamentary and Health Service Ombudsman is calling on the Government to publish clear national guidance to improve access to care and clarify patients’ right to choose a provider.  

The Ombudsman is also calling for more support for Integrated Care Boards (ICB) 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.    

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 investigation, Rich, who has asked to only be referred to by his first name, was wrongly refused access to ADHD care with his chosen provider, despite this being a legal right. He was instead referred to a local service that had not yet opened.   

The Ombudsman has seen an almost 206% rise in complaints about ADHD and autism over the past five years, from 410 to 1,257.   

Ombudsman Paula Sussex CBE said:  

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.   

 

"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."  

The report shares several stories of the impact these failings have on people.   

In one case, Rich, 48, 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 Rich’s 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. Rich felt he had no choice but to pay for private care amounting to almost £4,000.  

Rich, a student from South London, said, 

Trying to navigate such a complicated system was completely overwhelming. It is particularly challenging for an ADHD patient who, by definition, may find it difficult to manage and navigate needless complexity.  

 

“I had to do a lot of work and research into the system to get the care I was entitled to. I even provided my GP with the contact details of the person responsible for overseeing patient choice, but it made no difference. I was repeatedly told, without any reason being given, that I could not possibly access ADHD care via patient choice. I knew this was not true, which was extremely frustrating.   

 

“It felt like gaslighting. My ADHD diagnosis was a positive thing, as I’d found a framework for understanding myself better and accessing support. But my GP and the commissioners turned it into a punishing and abusive assault course as I tried to get the care I needed. It made me very anxious and I had terrible insomnia. I also worried that these symptoms, combined with my ADHD, would lead to a mental health misdiagnosis.”  

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.  

Ombudsman Paula Sussex CBE added:    

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.  

 

“The way services are organised has real consequences for people. Patients are navigating confusing pathways, facing long waits, unclear decisions about their right to choose, and inconsistent access depending on where they live. Too many are left feeling they have no option but to pay privately. That is not what good public services should look like.  

 

“I welcome the Government’s commitment to improving support for people with ADHD and autism via an ongoing independent review. Local NHS bodies cannot solve these challenges on their own. The current approach has led to a postcode lottery in care. ICBs need clear national guidance, backed by practical support, to help them balance patient choice, local services and limited resources. Only then can we build ADHD and autism services that are fair, consistent and easier to navigate.”  

Henry Shelford, CEO of ADHD UK, said, "

We welcome the Ombudsman's intervention wholeheartedly. Every day we see a wild difference in care across the country: whether you are seen in months or left waiting for years depends almost entirely on where you live. That is not an accident of demand — it is the direct product of wide variance in how ADHD services are commissioned. Some ICBs commission well; others have failed for years - creating enormous local backlogs.  

 

"Behind every one of these 3,000 complaints is a person whose life is on hold. ADHD is not a trivial condition. Unsupported - it often costs people their education, their jobs, their health and sometimes their lives. When someone finally asks for help, the answer should not be a multi-year wait, a refusal of their legal right to choose, or a referral to a service that has not even opened.  

 

"The Ombudsman has diagnosed the system correctly, and we urge government to follow the Ombudsman's recommendations."  

Our latest Case Digest shares learning from a selection of complaints brought to NIPSO about the experience in the health and social care sector of patients with a learning disability.