A Dundee support worker has expressed his anger and frustration at NHS Tayside for the lengthy time he is having to wait to get an autism diagnosis.
Alan Hinnrichs was placed on the waiting list for an autistic diagnostic assessment with the Tayside Adult Autism Consultancy Team in May last year.
And 12 months on, he is still waiting to be seen.
The 46-year-old has also been told the team is only just starting to see referrals from 2019.
While he appreciates there may be staffing issues and a high demand for services, the drugs and alcohol support worker says he shouldn’t have to wait five years for a diagnosis.
“The possibility of having to wait five years to get a diagnosis is ludicrous,” he says.
“If I do have autism, I can’t begin to come to terms with it until I have an official diagnosis so I know exactly that is what it is.
“There might be support or medication I might need and at the moment I can’t get access to it.
“This is why the waiting is so angering and frustrating and I know it’s not just me who is affected.
“It’s just not good enough.”
When did Alan suspect he might have autism?
In late 2022, Alan had been hill-walking with a friend who suspected he might have a neurodivergent condition.
He said his friend works with some neurodivergent people.
“He thought with all the signs I was exhibiting, that I might have some autism spectrum disorder.
“I hadn’t thought of it at all until that point.
“But I have always had problems with missing social cues or maybe saying the wrong thing.
“So I might not judge the mood properly.
“I sometimes have bursts of anger over trivial things and I like things to be done in a certain way.
“I very much like routine so if things get disrupted, then I can’t cope with that.”
He continued: “It took me a while to process that I might have autism.
“I was reluctant to embrace it at first because there is a social stigma around mental health issues.
“So it was a process. Then after a while I decided I was going to own it rather than running away from it.”
Assessment with a GP
Alan made an appointment with his doctor, at the now-closed Wallacetown Health Centre, in early 2023.
His GP gave him a questionnaire to fill out – asking questions about his background history including his school days.
This was then sent on to the Tayside Adult Autism Consultancy Team (TAACT) based at the Alloway Centre in Dundee.
“I got a letter from the team a couple of months later to say I was being added to the waiting list.
“That was in May last year.”
Alan didn’t hear anything for the next few months so he contacted Dundee City West MSP Joe FitzPatrick.
He then received a phone call from the TAACT and a follow-up letter apologising for the delay.
“They said I hadn’t been forgotten about but that they were short-staffed,” he says.
“The letter said the wait was due to a combination of things including higher than expected demand, staffing issues and the impact of the Covid pandemic.
“They said there is a waiting-time for a diagnosis, but they couldn’t say what it was.
“Subsequently they sent me a letter which said they have only just started seeing referrals from 2019.
“That suggests there is a five-year wait.”
What an autism diagnosis would mean for Alan
Alan said it is really important to him to have a diagnosis.
He explained: “As I see it I think it would help me to understand what my place is in the world.
“Just now it feels like there is a piece missing in my life that I need to find.
“If this does take five years for a diagnosis I will then be over 50.
“I have looked at getting a private diagnosis but you are looking at paying hundreds just for a consultation.
“It’s just too expensive.”
He added: “If we are being told mental health is a priority then they should make it a priority by having proper staff and funding.”
Longest waiting time is five years
A spokesperson for the Dundee Health and Social Care Partnership said while he can’t comment on individual cases due to patient confidentiality, he recognises that waiting times for Tayside Adult Autism Consultancy Team (TAACT) are longer than the partnership would like and he apologised for this.
He said: “There has been a 40% increase in referrals made to TAACT since 2019 and all referrals are considered on a case by case basis.
“The current longest waiting time for assessment is five years.
“The team is actively working on options to increase capacity and reduce waiting times, including working with specialist third sector providers.
“Those on the waiting list are advised to contact their GP if their mental health deteriorates to be referred to the most appropriate service depending on their mental health needs.”
Government response to diagnosis delay
Mr FitzPatrick contacted the Scottish Government minister for mental wellbeing Maree Todd MSP, about Alan’s case.
In a letter to Mr FitzPatrick she gave an assurance that improving mental health remains a priority for the Scottish Government.
She added that the government remains committed to supporting boards to meet the standard that 90% of patients begin treatment for psychological therapies within 18 weeks of referral.
Mr FitzPatrick said: “Whilst there have been improvements in mental health provision in Tayside, it is clear that further work is required.
“I am encouraged that support is being offered to ensure improvement plans are in place.”
Conversation