A new screening system for adults wanting an autism or ADHD diagnosis has rejected up to 85% of requests for a referral since it was launched, adding to concerns from campaigners who warn it could become a blueprint across the NHS.
In March, NHS bosses in York and North Yorkshire launched a pilot of a system for adults seeking an autism or ADHD diagnosis in response to rising demand and long waiting times.
The move was billed as a way of prioritising those most at risk. Under the new “pathway”, people wanting a referral for a diagnosis have to fill in an online questionnaire – the Do-IT Profiler – access to which can only be given by a GP or health professional. The profiler then makes referrals only for those who meet tight criteria.
Figures provided by Humber and North Yorkshire Integrated Care Board (ICB) in response to a freedom of information request show that, since the pilot launched on 27 March, there have been 3,254 registered users of the Do-IT Profiler but only 501 referrals.
That means just 15% of those who used the online questionnaire are being referred for an assessment. And in a sign of the impact of long waiting times – currently around 2.5 years – none of the 501 referrals has yet led to an assessment actually taking place.
Initially a three-month scheme, the pilot has been extended until next June.
“Even those who have met the incredibly limited crisis criteria have not been seen,” said Hilary Conroy of York Disability Rights Forum. “The rhetoric around ‘prioritising those most at risk’ sounds hollow when confronted with these facts.
“If this pilot is considered successful, it will be rolled out across the UK, and neurodivergent people will be deprived of lifesaving and lifechanging assessment, treatment and support. Other areas are approaching the increased demand for assessment with patient voice at the centre of decision-making, and planning for increased investment in contrast to this unlawful denial of patient rights.”
However, the Observer understands that even those who qualify are not immediately referred for an assessment – they are referred for clinical triaging, which has a waiting list of 12 to 15 months.
Only if accepted after triage would they join the 2.5-year waiting list for an assessment.
Anyone who doesn’t qualify through one of the three routes will only be triaged and referred for an assessment at “such time capacity allows”, which given current waiting times is likely to mean they are stuck in limbo indefinitely.
An independent assessment of the first three months of the pilot by Healthwatch York found significant problems with accessibility and a lack of support for those not referred for an assessment by the profiler.
Emily Douse, of Healthwatch York, said the findings highlighted some unanswered questions regarding how decisions have been made and how the pilot was implemented. “We’ve heard some distressing examples of how the pathway has impacted those seeking a diagnosis, and the wider community. ICBs need to meaningfully engage with those impacted, only then can informed decisions be made about how best to serve the neurodivergent community.”
Recent years have seen a huge rise in demand for autism and ADHD diagnoses amid increased awareness and publicity. Many adults are coming forward who were not diagnosed as children, when the conditions were less well understood.
Celebrities such as Christine McGuinness and Melanie Sykes have talked openly about being diagnosed. McGuinness and her husband featured in a 2021 documentary, Paddy and Christine McGuinness: Our Family and Autism, which covered their children’s diagnoses. This year, Christine McGuinness: Unmasking My Autism followed the 34-year-old as she learned what it means to be a late-diagnosed autistic woman.
Chris Packham is another well-known name to have received a later-in-life diagnosis, opening up about his Asperger’s in a film five years ago, as is Johnny Vegas, who was diagnosed with ADHD at 52.
The ADHD Foundation has indicated a 400% rise in the number of adults seeking a diagnosis since 2020, while NHS figures show the number of new suspected autism referrals for over-18s has trebled since 2019. Underfunded NHS mental health services have struggled to cope.
“The increase in getting people help should be celebrated rather than questioned,” said Henry Shelford, CEO of charity ADHD UK, who highlighted a Canadian study that found one in four females and one in 10 males with ADHD attempt suicide at some point. “There is no physical illness where an increase in the percentage diagnosed is seen as a problem. It appears to be almost exclusively an attack that ADHD suffers from.
“A diagnosis allows many people to understand themselves, and thrive, in a way they haven’t before. We talk about pre-diagnosis being like you’re in a maze and the lights are off. You’re bumping into things, hurting yourself and others. A diagnosis turns the lights up.”
Humber and North Yorkshire ICB said that without the pilot it was likely the waiting list would have closed, leaving no provision for applicants.
• This article was amended on 31 October 2023 to credit the pilot to Healthwatch York and to add a comment from the organisation.
