Long Wait Times and Gaps in Provisions are Leaving Thousands of Undiagnosed ADHDers in Limbo
By Kirsten Koss
CW: Mentions of suicidal ideation
It’s Sunday evening, and I can’t sleep. After another week of doing precisely no revision, I thought this weekend would be different. But as my exams loom, I’m crippled with shame and anxiety.
You see, my whole life I’ve been labelled as “capable but a bit lazy”. I was always the loud one whose school reports said I chatted too much and made careless errors. And like many young women growing up with undiagnosed ADHD, I had internalised these ideas about myself.
That was until I met my friend Michalina in 2023.
“Sorry I’m late, I have ADHD,” she said one day as she arrived late to meet me for a coffee. As we got to know each other, she shared stories about her struggles with organisation and forgetfulness. Insert realisation here. After meeting Michalina, I spent weeks trawling the internet, consuming every piece of information I could find about the condition. On the one hand, I felt understood for the first time in my life, and yet in typical ADHD fashion, I experienced ‘rejection sensitivity dysphoria’ – in short, I started to believe that I had made the whole thing up.
You see, I am not a little boy who can't sit still - I'm just a woman who accidentally wear slippers to work, always finishing everything at the last minute. Can I really be diagnosed with ADHD?
As I learned what a ‘hyperfocus’ was, I realised just how I had made it to university; many a late night spent cramming during my time at college. When I read about ‘hyperfixation’, suddenly intense obsessions over the years began to make sense. From dedicating my teenage years to One Direction, to my lockdown Line of Duty obsession, so deep that I could re-enact all six series without the help of Arnott, Fleming and Hastings.
When I discovered the “ADHD AF” podcast, recorded by two self-professed “late diagnosed ADHDers” from Fittie, the words of the former co-host Dawn Farmer really resonated with me:
“My whole life I felt that I was useless and incapable of finishing or becoming anything. I just felt like a useless adult that couldn’t do life.”
When she moved on to talk about how she needed “external motivation to do anything in life”, even things that she objectively wanted to do, I felt a mix of emotions. Relief, happiness, joy – and grief.
I grieved the little girl who was misunderstood. I cried for the teenager whose inability to cope in a neurotypical world led to suicidal thoughts.
But most of all, I felt empowered – and finally I asked my GP for help.
Look, I knew things wouldn’t be plain sailing – the NHS in crisis is not news – but I hoped to have a diagnosis before my final year arrives with the dreaded dissertation in tow. But will it happen any time soon? Probably not. You see, I’m one of 1038 people on the waiting list in Aberdeen City.
When NHS Grampian responded to my recent FOI Request, I realised that my story was one of many.
Sure, I had heard rumours about the state of local adult ADHD services, but the detail of the response was stark – and frankly I was shocked.
So, what's going on?
When I asked about the number of adult ADHD assessments carried out in Grampian between 2018 and 2023, I wasn’t expecting them to say none – and yet that’s the response I was given for Aberdeen City. Despite this, chiefs in Aberdeen City have “developed a dedicated service within existing resources” with 15 assessments carried out in the city between February and March 2024.
A much bleaker picture emerges in the Shire and Moray.
In Moray, we're told there is "no resource" to provide an ADHD assessment service.
In Aberdeenshire, I’m told that while assessments are yet to take place, patients are following various stages of a diagnosis “pathway”.
"Life is an insane struggle at times."
Those are the words of John MacInnes, a 41 year-old martial arts instructor from Moray. After struggling with depression for many years, John was given a working diagnosis of ADHD by his GP, but he was told he would have to wait 12-18 months to see a psychiatrist. The news from our FOI came as a shock to John, who is one of 317 people on the waiting list in Moray:
“I’m not surprised [that there is no ADHD assessment service in Moray]. Moray seems to be having a lot of services removed and we get told to go to Aberdeen instead.”
He tells me candidly about the impact of his ADHD:
“I always had a belief I could get better at life. Buy a notebook, diary and wall planner and I will be better prepared but now I know it’s a condition."
"This is just how I am. Struggling through a neurotypical world."
John tells me something I’ve read on ADHD Facebook support groups:
“I’d consider going private, but the cost is too much. A friend, who also had a late diagnosis, went private and said that the meds have changed his life. It’s not a cure but makes life way more bearable.”
As I listen, John’s story resonates with my own: “To not be physically able to do things you want to do most of the time and just sit with constant racing thoughts is horrible.”
"I get told i'm lazy."
Back in Aberdeen, 23-year-old theology student Nadine Leona, has been waiting more than two-and-a-half years to be assessed. Like John, she has a working diagnosis of the condition.
I feel again like I am talking to myself as we chat:
“Not having a diagnosis has proven to be really difficult. People don’t believe me and tell me I’m just looking for excuses. I get told I’m lazy and mistakes I make in my work are down to not enough effort.”
Amelia Boag McGlynn, a 19-year-old psychology student tells me how having untreated ADHD impacts her life:
“I have to leave my assignments to the night before for any semblance of motivation, and I get very overwhelmed at university during the day. My social life is badly impacted, I don’t go out much and need time to recover after I do.”
For international student Avika Bajaj, whose working diagnosis was given by a university educational psychologist, stories like ours have put her off diagnosis:
“One of my closest friends is in a similar position to me with an informal diagnosis and has been stuck on the waitlist for over a year. She has disillusioned me from even attempting to be referred. Why put in my time or effort for a goal I am unlikely to achieve before I leave the country?”
So, what is the issue?
These were four independent conversations, and yet we could all have been in the same room. Figures for Aberdeenshire show that we are not alone, with referrals for diagnosis soaring 570% from 65 in 2021 to 436 in 2022. We are five individuals, and yet we share the same hopes and fears.
Amelia, Avika and Nadine all individually suggest increases are due to greater awareness of the condition. Nadine said: “I think the world is becoming more open to the concept of disabilities, and the pandemic certainly helped with this”.
When I asked her about how important she feels ADHD diagnosis is for the NHS, Amelia had this to say: “I don’t believe it’s a priority at the moment, but not through fault of the NHS. It is not funded in any way that would allow them to keep up with the demand. Wait times will only be brought down by more funding, and more trained staff.”
With only ‘one dedicated consultant psychiatrist actively assessing’ for ADHD across the whole NHS Grampian area, perhaps Amelia has hit the nail on the head.
What did NHS Grampian have to say?
An NHS Grampian spokesperson said: "Anyone who is struggling with their mental health is encouraged to seek support. You can get advice and help regardless of whether you have a diagnosis for ADHD."
"Since waiting lists for adults specifically seeking an ADHD assessment were introduced, there has been huge additional demand on small, specialist teams."
"All referrals are assessed so that those who are most at risk - who have more than one medical condition, for example - can be given support as soon as possible."
"Teams are doing everything they can to address waiting lists for ADHD assessments. In the meantime, we can offer support and signposting and would encourage anyone whose condition worsens and has concerns about their mental health to contact their GP."
