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REVEALED: Less than SIX PER CENT of adult autism diagnosis referrals assessed in north east Scotland

By Iona MacDonald and Lewis McBlane

OUR investigations team has unearthed the true state of the waiting list for adult autism diagnosis in the north east of Scotland.

Our investigation has shone a light on the true state of waiting lists for an adult autism diagnosis in the NHS Grampian area...Picture: Callum Mackay (generated by AI)
Our investigation has shone a light on the true state of waiting lists for an adult autism diagnosis in the NHS Grampian area...Picture: Callum Mackay (generated by AI)

Less than six per cent of referrals for an adult autism diagnosis have been assessed, we can reveal, with the equivalent of only a part-time assessor covering the entire NHS Grampian area.

Over the last two years, 1506 referrals for adult autism diagnosis were made to NHS Grampian, but only 5.7 per cent of these referrals actually made it to assessment for diagnosis.

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This means a huge number of people have been left not knowing whether they are autistic or not. In the meantime, some of those stuck on the waiting list are potentially missing out on benefits, workplace adjustments and access to support services.

An NHS Grampian spokesperson confirmed that the current wait for an assessment is “more than two years” – blaming the tail-end of the Covid-19 pandemic and a referrals list for the service which has “increased greatly”.

There have also been at least ten times more referrals than assessments recorded each year since the adult autism team was set up in June 2021.

For example in 2021, 450 referrals were made but only 19 assessments were completed. Whilst in 2022, only 35 north east adults were assessed for autism, but 630 joined the waiting list.

This year, 426 referrals have been received with only 33 assessments completed between January and July.

The snail’s pace of assessments may be down to NHS Grampian only dedicating the equivalent of one three-day-a-week job to delivering adult autism examinations for over 500,000 people in the health board’s area.

The new figures also suggest that 183 people – more than double the number assessed in the last two years – have dropped off the waiting list. There is no data available on reasons for dropping off, however those seeking quick assessment and diagnosis through a private clinic can expect to pay between £1000 and £3000.

Obtained via a Freedom of Information request, the figures also reveal that the longest waiting time recorded was just over two years, dating back to the beginning of the adult autism service.

Both the Covid-19 pandemic and a “steep rise in referrals” are to blame for current long waiting lists, the NHS Grampian spokesperson said.

Recruitment efforts to ease the backlog are underway, she said, claiming that more people have been seen by a larger team – now three full-time staff – over the last 20 months.

The NHS Grampian spokesperson said: “The Adult Autism Assessment Team came into existence and started seeing patients in July 2021. During its initial period, fewer cases were assessed due to the ongoing pandemic and its effects.

“As awareness of the service has grown, the number of referrals has increased greatly. During the last 20 months, the number of patients seen and the team capacity have both increased.

“The average waiting time for a diagnostic appointment for people with autism in the last two years has been 322.4 days.

“With the steep rise in referrals, the current wait is now more than two years, and we are continuing to take actions to improve this position. While waiting times are longer than we would like, we would reassure patients that we are currently recruiting additional staff to further increase our service's assessment capacity.

"We will continue to communicate directly with our patients about their individual wait."

Over the two years, 62 per cent of those referred for an assessment in the NHS Grampian area were women, and 36 per cent men.

Moray also appears to be under-represented in terms of autism referrals – representing 16.1 per cent of population but only 10.3 per cent of referrals.

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