People seeking ADHD and autism assessments and treatment are facing long waits, inconsistent access and fragmented care because the NHS commissioning system is struggling to keep pace with rising demand, a new report has warned.
The Parliamentary and Health Service Ombudsman, Paula Sussex CBE, is urging the Government to publish national guidance to improve access to care and clarify patients’ right to choose their provider, while also calling for more support for Integrated Care Boards to make consistent decisions on ADHD and autism services.
She additionally recommends that all NHS-funded providers of ADHD and autism assessments be registered with the Care Quality Commission to close a regulatory gap and ensure patients receive safe, high-quality care.
The Ombudsman analysed 3,000 complaints relating to ADHD and autism over the past six years, including a detailed review of 95 recent cases. It found recurring problems with access to assessments, communication, diagnosis and ongoing treatment.
Complaints about ADHD and autism services have also risen sharply over the last five years, from 410 to 1,257.
The Ombudsman said the increase has occurred alongside rising referrals and growing numbers of people waiting for assessments, treatment and support.
Sussex 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.’
One of the main concerns identified is that patients are not always given clear information about their right to choose an NHS-funded provider. The report says this can leave people unaware of alternative assessment and treatment options and make it harder to navigate the system.
The report also highlights long waits for adult ADHD and autism assessments, difficulties accessing medication after diagnosis and poor communication between different providers.
In one case, Rich, a student from South London, was wrongly prevented by their GP practice from choosing an alternative NHS-funded ADHD provider. The Ombudsman found that the local integrated care board (ICB) had failed to ensure the practice understood the patient’s rights, resulting in delayed treatment and the patient paying privately for an assessment.
Rich 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.’
Concerns were also raised about the quality of some assessments, with patients having very different experiences depending on which provider they use, with inconsistent approaches and interpretations of national guidance.
Sussex added: ‘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.’
The full report can be read here.
Image: chenspec
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