r/Scotland • u/doyouevenlisten • 15h ago
We FOI'd all 14 Scottish health boards on ADHD & autism waits, now gathering lived experiences (anonymous 5-min survey, Scotland)
I run ADHD Scot, an independent, non-commercial information project. Scotland doesn't publish how long people wait for ADHD or autism assessments, and the Government's own FOI responses to our requests admit it doesn't hold the data. So I asked all 14 health boards directly. The picture is stark and very inconsistent: waits of 3+ years, some boards giving only one city's figures, at least one with no adult service at all.
Official numbers only tell half the story, so I've made a short anonymous survey to capture what it's actually like, by health board. No name, no email. About 5 minutes. Results will be grouped by board and shared with MSPs, the Scottish Parliament if possible, and in a report we intend to publish later this year, to push for proper data and better services.
If you're in Scotland and have waited (or are waiting), or you're a parent/carer, I'd really value your response and a share: https://forms.gle/mR5cjvovfy54ifte7
More about the project: https://adhdscot.co.uk.
Mods, if this isn't allowed, apologies, please remove. Thank you! :)
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u/Neo-Cubism 13h ago
Hello,
I applaud you for championing this cause.
Separately,
When referred, were you given an estimated wait time, and did it match?
As you saw on your other post, people within NHS Lothian are advised of a 10+ year wait time for Adult ADHD assessment, most people who responded mentioned 14-15 years.
Not sure this particular question makes it easy to reflect that in your survey. Because, whilst yes we were given a wait time but none of us have had an assessment and can’t answer you with whether it took longer or exact amount of time.
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u/doyouevenlisten 13h ago
Thank you, and thank you even more for this, because you've spotted an issue I didn't consider... You're right and that question assumed people had already been assessed and could compare the estimate to the actual wait. But as you mention from yesterdays post, people being told 10, 14, 15 years and still sitting on the list with no assessment, is precisely what needs capturing!!
I've just fixed it. It's now three separate questions:
Were you given an estimate at all?
If so, how long were you told to expect? (bands go up to 10-15 years, and more than 15 years)
Only if you've since been assessed: how did the real wait compare? (with an explicit "I'm still waiting, so I can't say yet" option)
So now someone in Lothian like yourself/other commenters who's been told 15 years and is still waiting can record that in full, and that estimate becomes a finding in its own right in many ways.
If you haven't filled it in yet, it should reflect your experience properly now. Cheers again for the useful feedback :)
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u/Iammuddy 8h ago
The final kick in the nuts is knowing that if I could afford a private assessment the GP practice has been instructed to not take on a shared care agreement. Our wait times just increase for every year they don't have provision in place for assessment.
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u/Interesting-Chest520 11h ago
My nephew is 11 and we’ve been trying to get him checked for autism since he was 4. Doctor said we need a referral from the school or social worker. The social worker said he’s just jealous about the new baby getting attention. The school claimed he had no signs of autism for 6 years. This year his teacher called his mum in for a meeting to “inform” her that her son may have autism - as if we haven’t been chasing them up all this time!
So now he’s finally on the waiting list after 6 years of fighting for him. Going to secondary school next year and his mother is so worried that he won’t get the support he needs
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u/thesamesillycucumber 8h ago
Thank you for doing this. We waited for an assessment only to be told things weren’t bad enough for a diagnosis and that he didn’t need one for help in high school. I countered that he would in uni and also, what if he did end up needing medication. How ‘bad’ do they let things get before they acknowledge he has adhd? We were told to let go of the need for a diagnosis. They also asked us questions about his behaviour in front of him and he left that appt feeling awful. She told us she might see us before he starts high school depending on the waiting list. It was such a bad experience for him and for us. Trying to figure out how we can go private but it is just all so unfair and messed up.
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u/Iklepink 13h ago
Done. Thank you for doing more than anyone else has so far! I was speaking to my receptive MSP, but then a resignation changed it all and I've had no follow up. If this can help holyrood understand the state of it, great.
I know I'm not the only one slipping below the waves as the treading water becomes overwhelming.
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u/doyouevenlisten 13h ago edited 13h ago
Thank you so much, and I do feel like I am singlehandedly doing a fair bit of work on the issue, which is great but its timely and not paid, however it is worthwhile and helping people, so I will continue! But thank you for your support and you are not wrong at all, there are MANY people feeling the same...
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u/morriere 12h ago
is there any help you need that someone could do for/with you? i'd be interested in helping and able to commit some time
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u/Pure-Vast-7858 13h ago
Filled in a response. I’ve been waiting since June 2022 and don’t think I’ll ever be assessed.
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u/doyouevenlisten 13h ago
Thank you! Please feel free to share also - we want as many responses as we can get... in the thousands would be incredible. You are not alone in this feeling whatsoever, but I am sure your time will come - despite the arduous wait. Hang in there. We hope change will come sooner rather than later for everyone.
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u/BeansOnBean 13h ago
I’m in a niche situation but perhaps add an option for - diagnosed previously via private / English RTC but told had to go private or onto NHS waitlist when moved up here. I was on RTC path in England and had all my meds abruptly stopped with no continuation of care when moving to Scotland.
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u/Leather-Fault-8130 10h ago
Filled in, thanks for doing this.
It was hard to give much on my NHS experience because im in a 'no pathway' area.
The private lot were nice enough though.
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u/Kindly_Bodybuilder43 8h ago
Have completed, thank you for doing this. I wanted to add something that there wasn't a box for. I was sent a text after maybe the first year that looked like a phishing text asking me to click a link to stay on the waiting list. I think it was genuine after some googling but I can't be 100% certain. There was only ever that one text sent, I could easily have missed it or ignored it thinking it was dodgy. I've not heard anything since then, now 3.5y since referral
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u/Gunbladelad 8h ago
I've been getting told that I should see about getting tested for ADHD - but I know in my local health board it will be a nightmare for anything.
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u/MrsScaletal 15h ago
I never ended up on an NHS waiting list. When my family heard about the length of time we would likely have to wait to get refferal, they decided to pay for a private assessment. I am not sure if I can answer some of these questions correctly (e.g. wait time for referal, updates from the waitlist)
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u/doyouevenlisten 15h ago
No problem at all! We are primarily looking for people who are on NHS board waiting lists :)
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u/rhivolution17 9h ago
I've done this for myself already but should I fill it in again if I have caring responsibilities for someone on a waitlist?
Thanks for your work, I've recced your site a couple of times to folk already.
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u/doyouevenlisten 9h ago
Thank you and yes please feel free to complete for the person you have caring responsibilities for ! :)
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u/lynkhart 10h ago edited 10h ago
Thanks for this!
I spoke to my GP about getting a diagnosis back in 2021 but didn’t get any medication until 2024 and even then I really had to push them to acknowledge that I needed it and that it wasn’t something I could just push past.
It took me writing a 14k essay to get my GP to take me seriously, as he obviously didn’t know anything about ADHD and put my concerns down to anxiety, and that I probably just needed to organise myself more. He’d sent off a referral to the mental health team, but basically just summarised everything as me struggling with timekeeping and organisation and didn’t go into much detail, so of course they wrote back saying that I probably didn’t need to be assessed. I was livid, and write out this huge document, listing every issue I’d had since childhood, all the things that helped/didn’t help and how I was at my wit’s end having no other way forward. That luckily did the trick, only then I didn't hear back until March 2022 where I was told it would be at least 18 months until I could get an appointment just to talk to someone about getting a diagnosis.
Given this was in the immediate aftermath of Covid restrictions I could almost understand the wait, but in the end I still had a video call for the assessment so it’s not like that couldn’t have been done earlier to avoid in person meetings.
Apparently medication was only offered to those considered 'severely' affected, and as I was considered 'moderate', no meds for me. 😒 (despite struggling all through school, never having had a job and still unemployed and living at home in my 30s 😞😒)
I was told I could appeal it by going back to my GP, which is what I did, knowing I'd have another long wait. I was also told I could have joined a local talk therapy group but unfortunately it had been disbanded due to a lack of staff, but not to worry, in the meantime there was a self help app I could try...but it was Irish and none of the resources featured were available here.🙃
It felt like such a slap in the face after everything.
Luckily I did end up being given the okay to start meds and they’ve honestly been such a life changer.
Seeing all the nonsense about people - particularly kids - being ‘over diagnosed’ makes my blood boil. If I’d had a diagnosis and help when I was at school my life would have turned out so much better, and the fact the waiting list is even longer now is heartbreaking.
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u/missy6jay 9h ago
With NHS Lothian I don't think I'll ever get referred/assessed.
They say that I "don't fit the criteria" and refuse to add me to the waiting list.
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u/Neo-Cubism 8h ago
Ask to see a different GP and ask for pre-assessment appointment there. If that fails, complain to the practice manager in writing.
Unfortunately we live at a time where people are constantly fobbed off and most people give up there and then. Complaining is the only way to get access to your rights more often than not.
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u/missy6jay 7h ago
Thank you so much for your kind comment! I will try that, and hopefully, will have a better result with someone else.
I was just so upset last time, and the Dr made me feel like I was being a nuisance/feeble woman. It's really put me off trying again.
But I will give it another go!
Thank you again!!
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u/jellical-cats 8h ago
My partner waited 4 years for an assessment, was diagnosed by an NHS psychiatrist a year and half ago, and is still waiting to begin titration onto medication. Unbelievably, he's one of the lucky ones, as waiting times are now a decade+ in our area.
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u/Fluffy-Afternoon-396 6h ago
Ha I was told there was no point in putting me on the list as it was 10 years long so not to bother. Saving for private now
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u/ltcmdrjo Dùn Dè 1h ago
What your survey does not pick up is those who are told about the wait time which puts them off even going on the waiting list. Those who are told "not to bother", due to waiting list time of 5+ years. Two years ago, Tayside/Dundee was still dealing with pre-covid referrals.
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u/Witty_Entry9120 9h ago
I know this is going to sound pithy but, everyone I know has it to one degree or another and over half of the staff at my work (bank) are in the 'spicy brain' group chat .
I don't think the NHS is going to be able to keep up to be honest.
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u/layzee_aye 7h ago
Filled it in as best I could.
I’m in Forth Valley and they just stopped assessing adults for autism after I’d been on the waiting list for a number of years (I think 5 or 6).
So I couldn’t really answer some of the questions very well and probably other people from the area will have had the same issue!
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u/Slotbun 15h ago
Filled the form in. My kid’s six and been on the waiting list for about four years now. I call the ND number for my area every now and then, a recorded message told me they are working through referrals from Autumn of 2021. Have already contacted my local MSP about this, she was told the same we have been told; he’ll get an appointment when his name’s top of the list.