MELBOURNE: A health ombudsman warns of ‘postcode lottery’ as patients face inconsistent access to treatment.

Complaints about the standard of NHS care for people with ADHD or autism have more than trebled in five years, an official report shows.

England’s health ombudsman said patients were being forced to deal with confusing systems, long waits and inconsistent rules over access to diagnosis and treatment.

In one case, a man spent almost £4,000 on private care after the NHS wrongly refused his request for treatment from his chosen provider.

The Parliamentary and Health Service Ombudsman (PHSO) recorded a three-fold rise in complaints for the two conditions from 410 to 1,257 in five years. It warned of a “postcode lottery” in access to services, with experts describing “wild” differences.

One patient, named as Rich, 48, asked to be referred to Psychiatry UK for ADHD treatment under rules allowing people to choose an NHS-funded provider.

However, South East London Integrated Care Board rejected his request and instead referred him to a local ADHD service that had not yet opened.

Rich, a student from South London, felt he had no option but to pay almost £4,000 for private care. He said navigating the system had been “completely overwhelming”. He said: “I had to do a lot of work and research into the system to get the care I was entitled to.”

He said he repeatedly explained his rights to his GP, but was told he could not access ADHD care through patient choice.

“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.”

Rich said the experience left him anxious, suffering insomnia and worried his symptoms could lead to a mental health misdiagnosis.
‘People should not have to fight’

The report found repeated problems with long waits, patient choice and differing approaches to diagnoses made by NHS and independent providers.

Paula Sussex, the ombudsman, called for national guidance to end regional variations and make patients’ rights clearer.

She said: “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 ombudsman said demand was outstripping capacity, but warned that the way services were commissioned and organised could make pressures worse.

The report calls for greater support for Integrated Care Boards to help them make consistent decisions while meeting the needs of local communities.

It also highlights a “regulatory gap” involving NHS-funded providers which offer ADHD or autism assessments but do not provide continuing care.

Such providers should be registered with the Care Quality Commission so they can be inspected and monitored, the ombudsman said.

In another case, South London and Maudsley NHS Foundation Trust removed a woman from an ADHD medication titration waiting list without warning or valid reason.

She was left without specialist monitoring for around six months, potentially affecting her symptoms and ability to carry out everyday activities.

Ms Sussex said too many patients faced “long waits, unclear decisions about their right to choose, and inconsistent access depending on where they live”. She said: “Too many are left feeling they have no option but to pay privately. That is not what good public services should look like.”

Henry Shelford, chief executive of ADHD UK, said there was a “wild difference in care across the country”. He said: “Whether you are seen in months or left waiting for years depends almost entirely on where you live.”

He explained that the variations were not simply caused by rising demand, but reflected “wide variance” in how local NHS bodies commissioned ADHD services.

Mr Shelford added: “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.”

The ombudsman welcomed an ongoing independent government review of support for people with ADHD and autism, and said ministers needed to introduce national guidance to ensure care was fairer and more consistent across England.