Right to Choose: The little known NHS service helping people bypass long autism assessment waiting times
By Esmé Kenney
May 3, 2024

More people are turning to an NHS system which allows them to choose a health provider and reduce their waiting time for an autism assessment.

This comes as figures show 147,042 patients in England are waiting longer than 13 weeks.

Right to Choose is a system that can allow people seeking an autism assessment to bypass long waiting lists within the NHS.

Lexy Webster, who was diagnosed with ADHD last year and is currently seeking an autism diagnosis, said: “Right to Choose is pretty much the only way you can get diagnosed now, unless you pay privately.

“You have to go online and see which provider has the best wait list, which one has the best reviews of their system, and pick the one that you want to be put through.”

If someone is referred for an autism assessment by their GP, and the waiting list in their local NHS practice is longer than the promised NHS waiting time of 13 weeks, they can send a letter to their GP asking to invoke right to choose. 

This means people can choose to go through a private supplier with a lower waiting list, as long as it is approved by the NHS. 

Right to Choose is not just for those seeking an autism assessment, but for anyone who gets a GP referral for any medical issue.

The private suppliers offer the NHS tariff services, so it costs the same amount for the NHS to use the private suppliers as it would to use their own services.

Chris Stocks, former Practice Manager at Grenoside Surgery in Sheffield, explained: “It’s still seen as an NHS service. It’s not as though you’re jumping in the queue because you’re going private.”

He added that more people have brought up Right to Choose to their GPs, having done their own research before being referred for an assessment. 

“It’s very new – It only came onto my desk in the last six to eight months.” 

At the same time, the use of private suppliers has opened up a “grey area” in post-diagnosis support, because not all private suppliers offer NHS services after the patient is diagnosed.

When someone is diagnosed through the NHS, the GP receives a report informing them of the diagnosis and any possible medications, and there would be annual reviews of their condition. 

Despite the number of people seeking an autism diagnosis looking to use Right to Choose, some have reported that their GPs did not know it existed. 

Lois Delaney, a mental health nurse who was diagnosed with ADHD and is seeking an autism diagnosis, said her GP did not know about Right to Choose, and had to go away to do some research into it before he allowed her to go through with it.

“I fear if I wouldn’t have brought it up, I would have still been on the waiting list now for the ADHD diagnosis.” she said.

Under the Health and Social Care Act 2022, NHS service providers must ensure that their staff have completed the Oliver McGowan Mandatory Training, which is the standardised training on how to treat people with autism and learning disabilities. 

Private services for autism and ADHD diagnoses have come under fire, particularly after the BBC’s Panorama undercover investigation on ADHD came out last May

The documentary, where a journalist went undercover to seek an ADHD diagnosis from a private clinic, criticised private services for “rushing” the process and giving out “unreliable” diagnoses.

Lexy commented that the stigma attached to using private services through right to choose intensified after the documentary was released. 

“It meant that people like me, who had used Right to Choose, had people in their life questioning their diagnosis. 

“Nobody will question someone’s health like they question someone’s mental health, and I’ve had people I don’t even know openly question my health.”

Lexy works at the Burton Street Foundation, a disability support charity in Sheffield, which has set up a neurodiversity peer-support group to help with both day-to-day issues and advocating for people to get further support. 

“Because of the peer-support group, I have now supported others in going to a doctor and they are now in the Right to Choose pathway. They never would have been able to do that on their own.”

“But it shouldn’t be on people like me to do that, there should be support within the NHS.”