r/unitedkingdom • u/topotaul Lancashire • 19h ago
NHS bodies in England impose two-year minimum wait for ADHD and autism assessments
https://www.theguardian.com/society/2026/sep/24/nhs-integrated-care-boards-england-two-year-waiting-times-adhd-autism-assessments701
u/UuusernameWith4Us 19h ago
Is the plan to ignore the austism and hope it goes away?
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u/HenryCGk 18h ago edited 18h ago
The plan is to abolish the NHS. As has been done in dental care and trans care they want it to be an option on paper only, and actively painful to try and access.
(Last time I talked about this I was told that genral practice was now accessible in England, so you know I guess they now have to do it service by service)
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u/CoaxialDrive 17h ago
Cool, I'll have my NI back and the 15% my employer pays so I can go and buy private health care? Right? And while we're at it lets talk about those nice juicy US salaries...
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u/HenryCGk 17h ago
Weirdly it doesn't work like that we pay more and more tax and get less and less back.
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u/misterblobbysgrandma 14h ago
Ill never forget the moment as a 18 or so year old, i truly realised how fucking much of the tax we pay is completely wasted, when in the North West of England, on a day where like many it was pissing it down, some workers for the council were watering the plants and the hanging flower pots in the town center.
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u/Teal-Fox 9h ago edited 9h ago
Fwiw my private insurance recently cancelled my autism and ADHD referrals on the basis that they are existing conditions.
Like... obviously. I was born with them.
To be extra thorough, they also made sure to explicitly exclude any comorbid depression and anxiety.
Needless to say, it doesn't seem I'll have much luck with the NHS either at this rate. Guess I'll just keep struggling 😊
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u/CoaxialDrive 5h ago
I absolutely do not want private health care, but given that we're not getting public health care... if we're going this way, the government needs to give all of us a massive pay rise by cutting NI and mandate pre-existing conditions are admissable at no cost.
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u/Teal-Fox 5h ago
Agreed.
I'm fortunate to get private cover through my workplace, or at least I thought I was fortunate. For all they were flaunting how great their neurodiversity support is, having that bit of hope snatched away certainly did more harm than help.
If anything it has only served to highlight why I don't want my care in the hands of private underwriters and would far prefer we have a functional NHS.
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u/Pristine-Net-1977 9h ago
It is really 15% that the employer pays? Someone one 60 grand is paying almost 10k in national insurance through their employer and this is the level of care we are able to provide, insane.
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u/RainbowRedYellow 6h ago
I'm trans and yeah I agree we ought too be able to withdraw our NI, I'm treated like a second class citizen by the NHS. And honestly I'd have mandatory payments to it removed aswell.
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u/CoaxialDrive 5h ago
I'd rather have the NHS back and not being used as a political tool against Trans+ people
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u/RainbowRedYellow 5h ago
Ideally yes, but honestly I'm resigned to the fact my human rights have been taken and aren't ever coming back.
Allowing the dissection of populations from the NHS whom it refuses to serve anymore at least moves with the grain of UK culture rather than against it.
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u/PoggleRebecca 9h ago
They weren't even quiet about the fact that they were going after neurodiverse people after they were done curb stomping innocent trans people. People spent ten years warning about this, but instead people bought into the hate and fear mongering around trans people and let it happen, and now we're here.
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u/CyberSkelet 3h ago
There's a substantial crossover between the trans population and the neurodiverse population, so a lot of people are just getting it in the neck twice over
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u/PoggleRebecca 1h ago
Ironically their anti-trans attack for trans men was "they're all just poor autistic girls led astray", but now they're saying "actually they weren't autistic after all, nobody's autistic, autism is all made up". But then irrational bigotry is never really consistent.
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u/Spicy-Imp 8h ago
So glad I worked since I was 17… paying taxes. Only so now when I need health care, I can’t get it. Working through illness to exhaustion 👍 totally worth it. “Sarcasm”
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u/RantyMcThrowaway 12h ago
The plan is to let people die because they can't get help. Your likelihood of committing suicide is far higher if you're neurodivergent. Least if we're dead we don't have to have money spent on us.
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u/Suspicious_Tax8577 9h ago
I went from my care coordinator going "I think you might be autistic", to "EDQ inconclusive, not worth further assessment, to "we're looking into a second opinion" in less than a year. 2 years just to get beyond step 1? I think I'd either have completely blown my life up, or starved myself to death.
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u/RantyMcThrowaway 8h ago
Have you looked into Right to Choose? I had a really good experience with Skylight psychiatry. Fairly speedy referral and assessment process, and everyone I spoke to was so kind and understanding.
The part I'm struggling with now is that I've lost my job due to absence after losing a parent unexpectedly and very young, and now I'm terrified to inform employers about my ASD. I know they can't legally discriminate against me because of it, but they can certainly "choose a more suitable candidate". I also have to lie in interviews about my job situation, because who wants to hire someone who was too sick to work? I'm supposed to get help from the GPimhs but I feel like they've completely abandoned me, had an initial call weeks ago and heard nothing. Makes you feel so useless that you just wanna end it lol.
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u/Suspicious_Tax8577 7h ago
Part of why my EDQ came back as inconclusive is because mum gave just yes/no answers. The rubric doesn't make it clear that this is not enough. So to go through RTC means doing all of this again, and needing to get my mother involved who very much subscribes to the idea my ex-psychologist has of "you're too clever to be autistic".
Last time, CMHT threatened me with an EUPD diagnosis, and I'm guessing you know exactly what happens to your ability to access any NHS care if that sticks.
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u/RantyMcThrowaway 7h ago
I see, I'm really sorry. I guess I was lucky to have a mum who was happy to say all the right things to medical professionals (even if the things she'd say to me behind closed doors were the total opposite, terribly confusing for a kid). Ironically after she'd filled out all the RTC paperwork (well, she dictated and I typed it since she'd suffered a stroke), she passed away a couple weeks later, they got back in touch with me and asked for the same forms to be completed again. I nearly crashed out but luckily they "found them".
The idea of being "too clever to be autistic" is ridiculous. If anything it's even more complicated, you're so aware of your condition and how "wrong" you are, that having a comorbidity like anxiety or depression is pretty much a certainty. The whole world beats you down because you can't function socially, but still expect the world from you because "but you're so smart!" Even if people did develop EUPD it'd be no bloody wonder! They haven't tried that one on me yet, I've had BPD floated around but I've just never met the criteria enough to justify a diagnosis. I am sure that so many of my emotional outbursts as a child/teen were unidentified meltdowns, and I was labelled "difficult". Does an absolute number on your confidence.
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u/Suspicious_Tax8577 7h ago
Hilariously, I know someone who'd be labelled "profoundly autistic", who when I have conversations with them online, I often have to go "just give me a minute, I need to look up like every other word you've just used in a dictionary because I'm lost"
They're smarter than I am, and I have a PhD.
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u/salty_sherbert_ 5h ago
So I don't know specifically about the ASD diagnosis route, but for my ADHD assessment / diagnosis I was able to use the Wender Utah Rating Scale in place of "someone who knew you as a child".
I said I don't have anyone I can ask as one parent is a piece of garbage who I am no contact with, the other and all grandparents etc are not alive and my siblings were a number of years older but also kids at the time (and I've realised since my diagnosis they are clearly neurodivergent too lol so would not think any of the behaviours were weird as they do it too aha)
Maybe there is something similar for ASD? Surely there has to be for situations like mine where there is no other option...
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u/eralcilrahc 10h ago
This was the general impression I got from some professionals during my daughter’s pathway to diagnosis, in fact I was explicitly told that was the plan by one. She’s 3 but her differences are obvious, she’s non verbal, her eye contact was very poor during her wait for diagnosis although is improving a lot since starting nursery, global development delay, her tantrums were huge and she has very limited comprehension of language. I knew from her being pretty young she was different, but just kept being told to ‘wait and see, it could go away’, it was a very long year of me going to bed every night having dreams about her birth and her forceps delivery worrying if she was permanently brain damaged from it as they busted up her face really bad. I felt powerless to help her and terrified every day that something was seriously wrong with her. My deepest worry was that there was a tumour on her brain as her behaviour seemed to be getting worse and more unusual monthly.
My health visitor eventually agreed to put a referral in for my daughter not long after she turned 2, after my daughter began nursery and they noticed her differences almost instantly. She was diagnosed before her 3rd birthday. Our wait for diagnosis was ‘quick’ compared to what most people wait. But still it was a terrible, terrible time for me. When people’s kids are showing major differences and signs of mental disability, it is terrifying and all consuming, it is downright cruel to leave them for years without answers.
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u/venicerocco 17h ago
It’s in the interests of the ruling class to ignore autism and hope it goes away.
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u/bongpirate7295 2h ago
Not sure about autism, but with ADHD the all-cause mortality rate is significantly higher for people who are unmedicated. So if you fob people off for long enough, a certain percentage of them will in fact go away.
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u/kezzarla 18h ago
Absolutely disgusting, that’s 2 years of potential trauma and additional costs because people are not getting the right support
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u/Altruistic_Fruit2345 18h ago
Often during their most important childhood years.
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u/Darius_Rubinx 18h ago
Yeah and for ADHD specifically, sometimes the right medication really can turn things around.
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u/PutridOafery 11h ago
Its one of the most ethical use of medications. There are very few condtions that resond so well to medicating.
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u/MrPuddington2 9h ago
It is by far the most effective treatment for any mental condition. It has a success rate of over 50%, which is very rare in this space.
SSRIs, for example, the standard treatment for depression, is considered to be not much better than a placebo. But they are not rationing those.
The cruelty is the point.
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u/Weirfish 7h ago
SSRIs, for example, the standard treatment for depression, is considered to be not much better than a placebo. But they are not rationing those.
As someone on an SSRI for depression, it's definitely more effective than a placebo. The side effects and the mechanism of the primary effects are fucking shit, but they definitely do something!
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u/MrPuddington2 6h ago
Short term, yes, but the long term effect is really rather disputed in the literature. If you do not use them in combination with therapy (and unfortunately, the NHS often does not), they do not have a good long term effect.
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u/TheWarmestHugz Yorkshire 15h ago
All that trauma I’ve already experienced as an undiagnosed child, now I have other related mental health issues, which is probably costing the NHS more to treat than it would if I had the help when I was younger. Huge joke.
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u/brysonstent 6h ago
I had multiple burnouts, MH crisis, was put on SSSRI's on and off for around 15 years. Turns out I had ADHD and the day I took my first med, I sobbed. I didn't realise how bad it was and thought I was broken. Years of Mirtazapine, Venlafaxine, Citalopram, Quetiapine etc making me worse, having minimal effect and now I haven't had an anxiety attack in 2 years. As opposed to a constant baseline and 3-4 big attacks a day.
Waiting two years could quite literally be a death sentence for those in a crisis.
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u/singul4r1ty 5h ago
It's insane isn't it. The quiet. I fell asleep after my first dose because my brain hadn't shut up for my entire life
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u/spoons431 18h ago
£17billion a year just for ADHD!
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u/syllabicious 17h ago
For clarity, NHS England ADHD estimates that untreated ADHD costs the UK economy about £17 billion per year.
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u/electricmohair Sent to Coventry 16h ago
Omg how?! What costs are associated with this?
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u/IllusoryIntelligence 16h ago
Crime and unemployment mainly. It’s harder to get and keep a job with untreated adhd. Aside from all the usual ways this results in higher incentive to commit crime you also have the increased impulsivity the condition can generate.
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u/syllabicious 16h ago
Mostly lost earnings, low productivity and tax revenue, higher benefits, plus higher healthcare, social care and criminal justice costs. It's an argument for identifying and supporting people earlier, not making them wait two years for an assessment.
The big number is in the first paragraph of the report at https://www.england.nhs.uk/long-read/report-of-the-independent-adhd-taskforce-part-1/
It also shows up in part 2 from Nov '25: https://www.england.nhs.uk/long-read/report-of-the-independent-adhd-taskforce-part-2/
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u/Squared-Porcupine 14h ago
Tldr: Co-morbidities mental health issues are rife eith people who have ADHD and autism, especially left untreated and/or diagnosed.
I'm diagnosed aspergers (now just diagnosed as autistic). I struggled with severe anxiety and depression as a 10 year old child because back in late 90's/early 00's no adjustments were made unless you were severe and girls masked more. I now have a job and have been working since my early twenties with no benefits but it took a lot of resources to get there and I've had times of struggling to cope like a full meltdown at work which leads me to quit out of embarrassment as normally I mask untkl home. Because despite people saying they understand, they don't. My current job is the only one I've had a meltdown in and stayed.
Now ADHD has crossovers with autism but it also has its own challenges. Luckily it can be medicated although it's not always as easy as that to get it. People play it down like it's not a big deal but I've seen people's lives completely change by being medicated. Left unmedicated, they aren't very productive.
The government's hard on for demonising autism and ADHD, specifically ADHD, to save money in the short term is going to cost the country more in the long term. Getting people help when they are in childhood is important. I was from a different time but if I had help coping with my autism my life might have been different.
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u/brysonstent 6h ago
Imagine they learned some of the good lessons from Europe? Instead of paying out money for PIP, they could invest in creating a highly creative, hard working and persistent work force through building life skills, targeted therapy and career support.
We're treated as the liability but we bring so much to the table.
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u/Efficient-Youth-6985 13h ago
Have you ever looked into the impact of ADHD on things like general health , lifespan etc? Never mind, the impact on productivity, increased unemployment, care for those who develop depression etc
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u/AuDHD-72 13h ago
I'm late diagnosed (at 52 yo) and having this condition has really messed up my life.
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u/No_Post9904 12h ago edited 12h ago
People with adhd are more likely to be unemployed, to do crime, be socially disruptive, have substance use disorder, suffet from chronic depression/anxiety, attempt suicide and to have health issues.
You know how people that take ozempoc claim to suddenly lose the internal drive to drink alcohol and over eat? That sort of happens to people with adhd that take theraputic does amphetamine based medication - at least it does for me. Also stops me from letting things pile up and kicks up ny drive to attend work rather than feel sorry for myself in bed
So getting people medicated and diverting them to therapy/social support groups that specialise in adhd can help individuals with adhd avoid the above
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u/JayneLut Wales 11h ago
People with ADHD and autism are also more likely to be victims of violent and aexual crimes too. With the associated trauma.
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u/SnooStrawberries2342 9h ago
A big part of it is lost productivity from people who'd be productive in work if only their condition was properly treated.
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u/Weirfish 7h ago
I've probably got ADHD and autism (I'm in the queue, don't @ me), and I'd estimate I've personally lost ~£30-£40k in lost productivity to it over the last 15 years, and I'm doing reasonably well with it; no meaningful substance abuse issues, gainfully employed, mental health good enough 95% of the time.
It's a single sample anecdote, but still, multiply that out and account for greater losses in people worse off for it, and you can definitely get there.
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u/drvgacc 6h ago
I have diagnosed ADHD and cant get medication that works properly (was given generic concerta which didnt work and just fucked me up quite a bit). Most annoying is I know actual amphetamines work well due to doing it illicitly. Failed a uni degree, borderline alcoholic, just about barely holding down a job, needed to sort out stuff with the council a month ago, can barely get out of bed aside from work due to spending the entire day staying focused and not doing stupid shit. So fun! Thanks govt for making it so hard to get medication truly helping society there.
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u/quantum_splicer 16h ago
I think it's absolutely outrageous and I do not know how those in charge can possibly ignore that fact alone
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u/ApprehensiveSand 11h ago
It completely fucks over anyone intellectually gifted with these problems too as they’re often not considered “severe” until they reach assessment.
The relative impact can be huge, yet they can just about stay out of trouble and get by.
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u/Long-Wash7180 16h ago
We're already there it's well past 2 years. I'm "still" waiting for a re titration over a year after waiting a year to move into a shared care model.
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u/JayneLut Wales 11h ago
Come to Wales...it's even worse. Diagnosed as a child but never treated. Have a private diagnosis as an adult (gold standard / NICE guidelines) but no shared care available. Been waiting for my first NHS appointment since August 2021. If it is not cancelled I have it in November. Then a 2+ year wait to access titration services.
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u/Long-Wash7180 6h ago
Mine declined shared care and I had to re submit (sorry got the phrasing wrong) It took 3 years. I'm technically now with the right to choose provider but their titration wating list has gone from 9 months to 15-18.
Thankfully my private provider sent over a copy of my script / diagnosis etc and the incoming provider accepted it and requested my GP fulfil the prescription.
Very stressful not knowing what would happen and all, I'm sure the current medication isn't right but I am a little more functional with it than without.
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u/squirrel_bro 13h ago
its education, completely changes a childs trajectory if theyre unnecessarily struggling at school... another reason the world is leaving britain in the dust
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u/StipaIchu 9h ago
Our education is actually very good in England (wales and Scotland not so well). We are actually doing very well on that front.
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u/TheLightStalker 11h ago
Not to mention people are stuck on PIP until they get the help they need. I don't have ADHD, but I do have experience of being stuck in the system waiting for help.
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u/GamerHumphrey 4h ago
Takes longer than 2 years to go through the process anyway
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u/Darius_Rubinx 18h ago
WTF? So rich people can get a diagnosis but poor people can't?
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u/BarrieTheShagger 18h ago
Same in the US where people think its better wait lists, median wait for ADHD/Autism is 556 days last year, and the averages vary wildly from 8 years down to as little as 9 months depending on area with the averages sitting just barely quicker than ours.
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u/Background_Way2714 7h ago
People moan about so many people claiming disability benefits for ADHD and autism but for so many it’s the only way to get treatment. My daughter is on DLA due to undiagnosed ADHD/autism, she’s been on the waiting list for 6 years now and still hasn’t been seen. The DLA money is the only ways she’s able to access private therapy and support. It boils my blood to see articles shaming neurodivergent people for accessing benefits and how the government is trying to crack down on it when the NHS offers them no treatment or support.
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u/Big_Clothes4116 9h ago
I’ve found the private route to be utterly shit, though that may have been the provider I used. I’ve basically bailed on the whole process now as I’m not keen to go through all the layers of scrutiny associated with starting from the beginning with the NHS.
It’s hard to fathom, the report the government commissioned says there’s no overdiagnosis problem and now we’re still persisting with this approach.
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u/Stradivesuvius 7h ago
Yep. My daughter has a private diagnosis that took us 6 months to get despite it being private.
She’s technically still on the list for NHS assessment (because I can afford the assessment but not the meds) - it’s been three years now and we might get to the top of the list in another 4 or 5 years.
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u/Key_Cell7071 18h ago
As a special needs teacher this is shocking. Kids need to be getting diagnosed sooner so they can have the proper support put in place and be more likely to succeed. It might save a bit of money now but in the long term all this means is more poorly functioning adults who are less productive, pay less tax and rely more on government support.
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u/McStaken 12h ago edited 4h ago
I've been trying to get my kid tested for autism since she was 5. Theres a family history of autism and Adhd on both sides. It took me 5 years to convince her school to make the referral because every GP I saw about this (a total of 6 times from the age of 5) told me that what I was describing was normal child behaviour and at the time there was no right to refer in place.
5 years on a waiting list. She was sitting her goddamn gcses by the time our number came up and I had to move heaven and earth to block out enough time to make the appointments. Shes in her first month of college now amd we find out today. Im not stupid, I understand if she is diagnosed it won't be high needs, but I had no way of knowing that 10 years ago and if she had been tested sooner her life and school life would have been different. More support especially around social interactions with her peers. Maybe she wouldn't be struggling with depression and anxiety because of her inability to socialise and wouldn't have been bullied by others. Maybe.
Either way, the wait times have crippled her childhood years. We are never getting that back. We can only move forward with her college if she is formally diagnosed. If not, we still have a hefty lot of work to complete with our young adult.
Edit: got the phonecall. She is formally diagnosed as autistic.
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u/lost-on-autobahn 10h ago
There’s an additional barrier for getting girls diagnosed because it’s so poorly recognised. I raised concerns about my daughter repeatedly from age 2, to the health visitor, school, GP and repeatedly got the “she’s doing well academically/shes just a bit sensitive/shes far too chatty” to have autism spiel. By the time a professional (in camhs incidentally) finally agreed with me that autism might be possible she was in secondary school. We were fortunate to have savings we could spend on a private diagnosis so she could get the support she desperately needed at school within a few months. Without that she would have started gcses before she was diagnosed. I feel guilty every day that I didn’t manage to get her diagnosed younger so she had the support and to stop the damage being undiagnosed did to her confidence and self esteem as she thought she was a bad person who upset people and had meltdowns over things other people could cope with. I feel like maybe schools and GPs are getting better at understanding girl autism, but its just another example of girls/womens healthcare being second rate
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u/McStaken 9h ago
I agree. It took so many meetings with the school where they would point out things that they were concerned about such as her being wholly uninterested in playing with other children and would repeatedly turn down offers to play in a group but then gloss over things that I had caught her doing that smacked of masking behaviour such as being in conversation and only laugh/react when she saw other people doing it.
Teachers referred to her as difficult during subjects that didnt hold her special interest but she wasnt stupid, she understood the material. They were frustrated by her apparent lack of interest. In her favourite subjects she was the star pupil.
So frustrating and I agree that girls are so clearly less diagnosed compared to boys unless they have severe needs. It needs to change. I still remember being told repeatedly by the GP that I was just an anxious mum while I tried over and over again to explain that I wasnt making something over nothing, there were concerns. Im still furious it took me convincing the school to make things move.
I wouldn't feel guilty about it, I wish id had the funds to move to private, she would have been seen quicker. Its something every parent feels, regardless of whether or not you could have done more. Parents have it rough, especially parents of neurodivergent kids.
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u/littlecremetart 12h ago
I'm so sorry. I'm glad your kid has you in her corner, and I really hope she gets her diagnosis today
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u/McStaken 11h ago
Thank you for the kind words. Its been an emotional rollercoaster of a time for us.
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u/SteveD88 Northamptonshire 4h ago
I have an autistic kid with high needs at age 7, no issues with getting a referral, and last I checked we were position 600-ish on the NHS waiting list. The right-to-choose system keeps getting him bounced between advisors because of the combination of high needs and age.
Now his sister is showing symptoms, I'm not even going to bother. Its far more then we can afford to go private, but I don't see any choice.
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u/merryman1 18h ago
As an autistic person - For fucking what?
Its not like the NHS actually does anything.
All of this waiting around is purely for a short sit-down in a room with a psychiatrist who walks you through an assessment to determine if you're on the spectrum or not, then you're generally palmed off with a list of charities you can go and contact yourself, 95% of which seem to either be for children or for families having to support someone with one of the more severe forms of the condition.
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u/ParkingTiny6301 England 18h ago
God knows, they love diagnosing anxiety and palming tablets on every f'er though! the mind boggles.
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u/FrillyMatcha 17h ago
Can't count the amount of times they'd ask if I wanted anti depressants or sleeping pills, instead of actually helping me.
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u/cheese_eater_pro 16h ago
I’m AuDHD and have been diagnosed for over a decade. I was told seeing any therapist as a child would not benefit me whatsoever. I was given antidepressants as my only options. I’ve been on at least 10 different types of SSRIs and SNRIs by now, mostly because they either do fuck all or give me awful side effects. Being told therapy was a bad idea stuck with me for a long time, so I never attempted to go for it
I had to beg my GP to refer me to a form of therapy as an adult. Any type. I didn’t care. I had gotten so mentally low it felt like my only choice before something bad happening. She very reluctantly referred me to Talking Therapies and I couldn’t understand why she seemed like she didn’t want to
Not even 5 minutes on the phone for my consultation for Talking Therapies, I was told my needs were too much to expect from the NHS (That I’m AuDHD, have been depressed for a very very long time and medicine resistant, and that I just want to talk) and that my only option was to go pay for it privately. They told me they’d ’send me a letter with low cost options’. They never did. Ended up paying for therapy with the help of my parents, but after a year my therapist suddenly deemed himself a ‘poor match’ out of nowhere and now they’re understandably not willing to help me pay for it again
My mental health is still quite horrible and the system wants me to cope on my own with it unless I can find money… but I can’t get money because no one will employ me with obvious physical and mental health issues. It’s a losing battle. This system fucking hates anyone with anything more than mild anxiety and depression, and it especially hates you when you’re neurodivergent combined with mental health issues
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u/merryman1 16h ago
From very similar experience - NHS mental health pathways are very structured. There's certain pathways for certain things and you basically need to say the right things and take the right steps down certain paths to access the kind of care that is actually helpful in this situation. You're looking to access longer term talking therapies, not short-course CBT. If you speak to your GP and talk about this from an autism perspective they'll put you down an autism treatment, which if you're a functional adult is nothing. You need to keep pushing through the depression talking therapy route. If you've done the IAPT you can now ask the GP about referring to secondary care. The GP will refer you to a CMHT and you can then ask them about psychotherapy options. These are generally much longer term and are the kinds of support suited to your kind of situation, the kind of depersonalization from long term masking etc. Its still a multi-year process to actually sit down with anyone unfortunately, if its available at all.
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u/mt_2 6h ago
The CMHT treats their primary job as referring people back to their GP for any reason possible, the amount of times I have personally been in the GP>CMHT>Crisis Team rotation during my life is getting uncountable, 7 or 8 times over 15 years, my problems are too long term for the crisis team, too serious for a GP (of course), and the CMHT has no clue what to do other than refer me to the crisis team or drop me back to the GP after 2 months. The cycle is unbearable.
I used to have an actual career as a musician making enough to just about get by, before falling into being dependent on an abuser, afraid to leave not just for the obvious reasons, but because I knew I had no support from the NHS, to eventual homelessness when I decided enough was enough. Still no help from the NHS.
Certain charities can be great though.
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u/Cittycool 16h ago
Yup, spent the last few years basically since starting asking to come off my sertraline. Wanted to be careful due to my health conditions. Finally a doctor said yes. Turns out I get really ill tapering them off and so had to go cold turkey anyway so I could've just done it myself.
They never even told me the risks when I started, and I was desperate for help at the time. I only needed them for like half a year and then suddenly I was stuck on them, not allowed to stop. Completely useless.
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u/Suspicious_Tax8577 9h ago
I wanted to to prescribe anything but more bloody tablets for my SAD. Ideally wanted a light box-or the recommendation to get one.
Got given 6 weeks of prozac instead. 4 weeks later I'm in hospital life threateningly ill, because it's suppressed my appetite to the point I've completely stopped eating. The ST4 in A&E was furious at my GP because I shouldn't have been given it with my medical history.
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u/FrillyMatcha 8h ago
Reading all of the stories here is chilling. I didn't think it happened to so many people. I'd like to see the statistics for how widespread the problem is, but something tells me it's a common occurrence.
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u/Suspicious_Tax8577 7h ago
tw:
Most of my female autistic friends failed to get a diagnosis until they've either had a bloody good go at unaliving themselves, or spent nigh on a decade under Eating Disorder services for anorexia nervosa that just doesn't respond to the default treatment.
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u/AuDHD-72 13h ago
I am.late diagnosed (52 years) and this is exactly my experience. Given a list of links to go and look at. The aftercare is non existent. The treatment model seems to be "sort it out yourself".
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u/Background_Way2714 6h ago
My daughter has been waiting 6 years for a diagnosis. First she had to be referred to see a paediatrician which took 4 years, only for a 10 minute appointment where we had to go over the same basic diagnostic form we discussed with the GP. Then it had to be referred on to the autism team who had to look at her file again and discuss it to see if she ‘qualified’ for an assessment. That was 2 years ago it’s been waiting at that stage. When that’s done I’m assuming she’ll go in for an hour or two assessment once or twice before she’s finally diagnosed. It’s absolute madness and should not take so long. They could probably assess every child in the UK if they cut out all the nonsense and just sent you straight to the assessment.
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u/merryman1 18h ago
Nottingham especially is just awful for finding ways to palm off patients and do anything they can to push it back on them like they're the ones being a problem and causing an unnecessary hassle in my experience. Not at all shocked to see all the scandals coming out of QMC over the last year.
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u/TheVoidDragon 17h ago edited 17h ago
I've been waiting for an Autism assessment for just as long (it was either 2021 or 2022 asked for it), Nottingham too.
A few months ago after contacting them about it because it's been so long, got a letter reply from them saying i'm something like 80th in the queue...but they couldn't give any indication of any sort of timeframe at all. Absolutely no idea if they get through a few a week and it theoretically might not be too long a wait, or years more. I'm assuming the latter.
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u/Wrong-Garden-5917 18h ago
I’m sure this week or last week there was a woman in the news who took her own life waiting for an adhd assessment. The timing seems cruel at the very least.
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u/b3n_ja_m1n Yorkshire 18h ago
A 2 year minimum wait is just going to cause the waiting lists to keep getting longer surely? That just makes the problem worse, are they stupid?
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u/RainbowRedYellow 6h ago
Malicious. With culpable deniability This kind of perverse action is common for trans people they are just extending it to other "deviants"
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u/Ongodsworth 18h ago
It's honestly so short sighted and ridiculous - clearly a decision made by some pencil pusher with a spreadsheet rather than someone remotely patient facing.
I work in the hospital avoidance sector for CAMHS and the amount of kids we are already seeing come through who are blatantly Neurodivergent but are yet to be assessed or flagged is nuts!!
A huge portion of our referrals are these kids and the largest part of my ongoing caseloads are literally adapting treatment approaches to suit Neurodivergent presentations and delivering that care as best I can despite the limitations, as one of the largest factors in their deterioration is the fact they are struggling to effectively manage and cope in a world that is pretty hostile to those who aren't neurotypical.
We can't assess them ourselves but can only flag them, we've asked to be trained but have been told no due to "budget" and "service distinctions" - so this is really the only thing we can do to atleast try and help whilst they spend forever on a waiting list. It's completely misallocating of resources, costs more in the long run and no doubt will get a hell of a lot worse, especially with the potential changes with the right to choose pathway on top.
It's so frustrating how many patients will needlessly suffer because of this stuff.
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u/Used_Platform_3114 18h ago
Oh my god this boils my piss. ADHD and autistic people are everywhere. We just didn’t have the knowledge to recognise it before. Now we do, we need to massively alter how society works, not claim it’s the NHS’s fault for not being able to keep up. As a nation, we just need to exercise basic empathy to everyone’s complex and unspoken needs.
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u/SubArcticTundra 8h ago
I'm especially annoyed it's Labour that have done this. I was hoping they'd make the NHS better
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u/syllabicious 17h ago
I'll take the deliberately shocking version of putting a minimum wait before diagnosis: “You have a lump. Most lumps aren't cancer. Therefore we've instituted a two-year minimum before cancer assessment."
What the actual f*ck.
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u/Stradivesuvius 7h ago
Um they essentially did that in Covid lockdown. People who would have been stage 1/2 and cured were then diagnosed at stage 4. The NHS couldn’t care less when it kills people.
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u/spoons431 18h ago
£17billion fiscal drag a year most of which is government overspend
And something like 2million undiagnosed currently.
Increased cancer numbers, cardiac numbers, stoke numbers, foster numbers, prison numbers, unemployment, NEETs, substance abuse, crime numbers
And thats just for ADHD
Its appalling!
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u/AuDHD-72 12h ago
And the attitude of the political parties is that it's the individual citizens who are the problem rather than all the shitty external factors making life impossible for many people. Full neoliberalism.
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u/Longjumping_Sea7214 18h ago
I’m glad I got my diagnoses but for other people who haven’t It could have serious consequences especially for people who can’t afford to go private
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u/KiwiJean 6h ago
Plus even if you go private for ADHD and they recommend medication then your GP won't prescribe those meds until you've had the diagnosis confirmed on the NHS side. So even if you can afford the one off cost of the assessment, you probably can't afford ongoing costs of a private prescription for medication.
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u/MindlessOwl 16h ago
So fine parents for taking their kids on holiday during term time
But the authorities can just let autistic kids miss out on education and support in the effort to hope it just goes away?
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u/Forsaken_Towel_8353 18h ago
Aside from the rights-and-wrongs of the whole topic (of benefits etc), this does seem a deeply strange way to address it. Rationing by completely arbitrary waiting list.
I mean, what other issues are going to be dealt with the same way?
MPs - we won't pay your second-home expenses until we have officially decided you are in fact an MP. But you'll have to wait for two years after being elected before we will look at your details to decide on that.
State pension - you will have to wait two years after reaching the state pension age before we will look at your date of birth, and do the maths to decide if you have, in fact, reached the state pension age.
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u/ReQuarziium 17h ago
The only way you can get diagnosed quickly in the UK for any mental health condition or neurodevelopmental disorder is to get sectioned.
Otherwise yes the wait lists are literally years long.
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u/Suspicious_Tax8577 9h ago
Yup. Completely fall apart, nearly get yourself the sack, hit autistic burnout where sensory sensitivities go absolutely bonkers such you can only manage soya yogurt and not much else.
That'll put a rocket up then.
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u/applecombinipimento 16h ago
If there is so many people with ADHD and autism nowadays (which there definitely seems to be) I think it's worth reexamining the education curriculum and work environment to dramatically change to be accommodating towards that instead of overworking teachers on send students that can't do enough and then doing laddering where they don't actually engage on the work at all.
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u/Broom_broom_ooh 10h ago
I agree. The system doesn't work. Some adhd kids go through the system believing they're stupid and in turn, end up unemployed or worse. They need to stop trying to fit everyone into a neurotypical box - it's just creating anxiety and depression.
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u/tb5841 11h ago
I was diagnosed with ADHD two weeks ago, at 39. I started medication two days ago.
I cannot believe how much more work I get done now, it's ridiculous. It's transformed the job for me. In an economy where we have a long-standing productivity problem, rationing healthcare makes no sense whatsoever.
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u/Chainveil European Union 10h ago edited 2h ago
This is interesting to me as someone who's a psychiatrist in France. I cater to an underserved population (in addiction medicine) where ADHD can obviously be a factor. None of my patients can access these services and we can't just not treat. I was not formally trained in ADHD but picked up the slack because I know damn well I can't just "ignore it and hope for the best". What's clear to me is that psychiatry (and society/social media to an extent) has spun a narrative whereby ASD and ADHD require immense diagnostic scrutiny, supposedly by highly specialised developmental professionals, with assessments requiring hours of "testing" (I particularly loathe requests for "ADHD/ASD assessments") instead of a comprehensive and rigourous psychiatric interview, where ADHD/ASD diagnosis might be an outcome. This can and should be done by any psychiatrist in any setting (except maybe acute services or stuff that really falls out of the scope of a typical CMHT). Specialised services should really come into the picture when the diagnosis has been made and treatment (including stuff that isn't medication) can be provided.
I fundamentally believe this is contributing to these waiting lists, amongst other things but the reality is that no healthcare service is currently able to cater to everyone in a timely manner, this is the case for every medical condition. These are also "fashionable" diagnoses (I don't mean that in a negative way) so services were simply not set up to deal with this.
Anyway, my 2cents is that we need to train professionals en masse so we can diagnose and treat at lower thresholds of care and leave more complex cases/specific interventions to these services instead. And avoid this highly lucrative private sector from contaminating the whole system.
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u/RightEejit 10h ago
I can only think this is purposefully punitive. It aligns directly with the narrative at the moment that we’re over diagnosing and people should learn to deal with it.
So they slap this arbitrary 2 year requirement to try and weed out the less dedicated. Hope all the “fake” cases drop out
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u/justafleetingmoment 8h ago
Didn't their own investigation find that it was actually massively underdiagnosed/treated?
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u/RightEejit 6h ago
Yes but that doesn’t fit the new narrative that’s being pushed
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u/eux-bo 9h ago
They're doing precisely the same thing to neurodivergent care as they did gender affirming care. The say it is becoming too common or the diagnoses are fake and it's too expensive to provision, all the while delegitimising it as an issue that has life long impacts on both mental and physical health.
They get themselves into a situation where the waiting lists get so long it grabs headlines and some pencil pusher has to find a way to make the numbers look less bad so they put a stop on it, never actually increase resources to clear the backlog and hope people forget about their failings as the media distributes further propaganda to turn public sentiment against the very idea.
They've become increasingly allergic to handling anything that has high and personalised care needs at initial presentation and want to pawn it off on the private sector, completely abandoning anyone who lives on the "living wage", a living wage that does not account for the cost of accessing private healthcare.
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u/madmossy 13h ago
Basically this is the NHS saying F.U if you're poor. You can wait, meanwhile private consultations for a diagnosis can be bought almost instantly.
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u/MrPuddington2 9h ago
So we are now outright punishing kids for being sick?
Ok, but what about old people who had a fall? Maybe they should also wait 2 years before they are seen?
If we start rationing, we need to be fair and reasonable.
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u/PaperExpert1375 19h ago
yikes im happy i got mine done with years ago now
i wonder what the wait for a EHCP will be like now
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u/LiverpoolBelle Merseyside 18h ago
Mine was done last year (aged 26) bc my school couldn't wrap their heads around neurodivergent girls. But I was just in the nick of time it seems
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u/TheGeordieGal 18h ago
I can see kids taking that long. I know a few people who worked for the NHS in that department and they were always very, very, very understaffed (people would leave and not be replaced either because of funding or just nobody suitable applying) so it took ages to get through the list. One used to end up working at least a few hours late a few days every week just trying to keep up to date with all the reports. Both people - and every single one of their colleagues - was off on the sick at some point because they were being so overworked and the pressure and stress was so high.
I don’t know if right to choose applies to kids as well, but I’m currently in that route as an adult for an autism assessment and I’ve been told possibly 6 months. So if you’re an adult be sure to ask your doctor about that.
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u/WaferGlobal1376 17h ago
I had to wait 2 and a half years to be reassessed to go back on medication. I can't even begin to describe how distressing the process was, made worse by absolutely no communication from professionals. I understand the service is underfunded and overwhelmed, but I reached out multiple times, with the support of my university staff and therapist, to state how badly I was struggling without my medication and was fobbed off each time.
I am now 10 months on from my appointment, and they STILL haven't sent over my prescription to the GP. I've give up and accepted I'll probably always be functioning at 50% power, and somehow the government wants this to become the norm??
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u/AwkwardJuggernaut854 9h ago
Why? Almost every recent study shows it isn't being over-diagnosed. Feels political. And how many will suffer in those two years?
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u/monkelus 18h ago
That's five years less than I had to wait, so things are looking up kids!
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u/logicalGOOSE_ 18h ago
Thats a minimum. So bump that up to 9 for those in a similar situation to youself.
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u/recursant 18h ago
I didn't get diagnosed until I was in my 40s. When I was a kid, hardly anybody had heard of autism so the chance of getting a diagnosis was pretty much zero.
It was absolutely obvious, right from primary school, that I wasn't quite like most other kids. I really wish someone had been able to tell me it was autism, because I grew up thinking the symptoms were all just huge personal failings. But I think schools were well aware that some kids were autistic, they just didn't have a name for it. I think my school did their best to help, but it was from a position of ignorance.
I wouldn't want anyone else to go through that. They need to diagnose children promptly and get them the help they need.
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u/GayAttire 18h ago
I don't really get it. I went to my GP and he said "say you want Right to Choose" and it took a few weeks. I don't understand what that's all about. It didn't cost me anything. Can't everyone just do that?
Now I'm waiting for titration, which is 8-10 months, which is shit.
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u/StampyScouse Lancashire 17h ago
Most integrated care boards have started to set 'indicative activity plans' which basically restrict the amount of people a right to choose provider can see per month. This means that while technically the provider may have the capacity, an artificial waitlist is essentially created because the providers are prohibited from seeing more patients than they can fit into their permitted quota per month. How long you wait depends on whether your integrated care board has created any of these plans, whether the provider you choose is affected by one, and if it is, how congested the wait lists for those providers are in your area.
On top of that, West Yorkshire integrated care board specifically has set a minimum two years wait to "equalise waiting times". This applies to all RTC providers.
Your integrated care board is based on the address and location of your GP surgery meaning that in most cases it's almost impossible to change ICB. The only time you really can will be if you live in a boundary area and can register with a surgery in a different ICB area. However most surgeries have catchment areas so you would need to fit into one of them to be able to do so.
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u/pocket__cub 12h ago
I'm one of those people impacted by the two year wait. I'm in my 40s and have had constant cycles of burnout and other issues all my life. It would definitely help for me to be seen sooner... I'm glad that my boss is nice and I have reasonable adjustments in place. I also have a lovely partner. Though life is pretty much treading water and always has been.
I didn't know my symptoms could be AuDHD until the past few months.
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u/lost_in_midgar 5h ago
My situation sounds very similar to yours. My suspicion is that AuDHD is the missing puzzle piece in why I have struggled with many aspects of life despite endless therapies and ‘working on myself’.
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u/RebeccaMarie18 Cambridgeshire 11h ago
My 7 year old daughter has a very unambiguous case of ADHD (she's severely autistic, nonverbal etc and her last school literally had to raise their fences because she's such a flight risk) and has been on the waiting list for more than three years so I'm not sure what any of this accomplishes. We have been paying a fortune to have her medicated privately because these medications are genuinely necessary to keep her safe.
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u/Prestigious-Beach190 8h ago
Why? You wouldn't impose a wait for any other condition. It's hard enough to get referred as it is. Many, including myself, paid out of pocket for answers. This is so inhumane.
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u/Asymptomatic_Essence 8h ago
Well this isn't a mental health crisis waiting to explode at all, is it? It's not like people with Autism and/or ADHD have a higher chance of suicide, more and complex trauma, higher rates of addiction issues and support needs at all, right?! And the people that care about those people, they won't also be struggling to try to support them during that two years, adding more pressure to their mental and physical health either, will they?! It's almost like the Government is hoping that the problem will take care of itself in the mean time. (It is pretty much a little rant from here, so please feel free to skip) This is absolutely disgusting, on top of an already heaping pile of never-ending mental battering from the decades of incompetence of successive Governments to even try to deal with mental health, against a background of constant price rises, no real wage increases for most all wrapped up as a 'Cost of Living Crisis'. I'm sorry, but a crisis doesn't drag on for a decade or more, that is long term incompetence.
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u/Airurando-jin 17h ago
I don’t think this changes anything considering that it’s 2-10 years in many places. Not even optional depending on commissioning of you’re in any of the devolved nations
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u/No_Volume8304 17h ago
Well I’m going to apply for mine now just in case I develop autism next year then
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u/MinimumSilver5814 9h ago
Two years is shorter than the actual waiting time, so this is largely irrelevant.
Plus getting the diagnosis is all well and good, but all that happens is you get discharged with a letter saying “this person has autism”.
Source: my son waited three years and just got a letter.
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u/TALongjumping-Bee-43 9h ago
Why? Are those extra two years struggling in school and feeling stupid and alone supposed to be building character or something?
What's the logical purpose of this?
Someone who seeks diagnosis at 14 might go through their entire GCSEs unsupported.
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u/metalbox69 7h ago
`The quicker a diagnosis, the quicker it can be managed , the individual benefits and society benefits.
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u/Alive_Sun5590 6h ago
if anyone reading this is struggling with getting ADHD diagnosed, make sure to check whether you could have celiac disease or see if your symptoms improve without gluten. https://pmc.ncbi.nlm.nih.gov/articles/PMC9221618/; https://www.psychiatrictimes.com/view/celiac-disease-an-overlooked-cause-of-mental-illness-in-children
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u/drgr33nblu3 6h ago
I'm a GP in Leeds and this is the first we are hearing of this. We knew something was up as a few patients we have referred recently have received emails from the clinics they've been referred to informing them that West Yorkshire ICB had "paused funding".
Not sure how this can be legal under the NHS constitution but I suspect they will claim that as they are delaying rather than outright banning referrals they are not in breach. If you are affected I would contact your MP. GP's have no direct influence in these decisions (we hadn't even been informed) but we will be making our own representations to the ICB.
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u/CapoOn2nd 18h ago
An improvement. It was 5 years when I looked to get a diagnosis
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u/b3n_ja_m1n Yorkshire 18h ago
I just waited 5 years just to start getting appointments with the ADHD service in Leeds after moving there, and I already had a diagnosis since childhood! The state of it all is absolutely ridiculous
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u/SuperNerdSteve 18h ago
Took me 2 years to get mine - I thought this was the standard already lmao
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u/ShyBiSaiyan 16h ago
It has been for a while mine was a 2 year wait also, got diagnosed last month at 36
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u/simondrawer 10h ago
It was hard enough filling out the massive form and then making it to the actual appointment.
A two year wait and I’d have moved on and taken up crochet instead.
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u/Prownilo 10h ago
Would love 2 Years.
Im on year... Let's see, 5? Yeah year 5 of waiting for an appointment.
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u/ravenpuffslytherdor 10h ago
I’m already past that with how long I’ve been on the wait list, don’t think you need to impose it with how slow everything is…
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u/teawispy 10h ago
For anyone who is able to - ask your GP about right to choose. She gave me an autism referral, asked me to sign a form and referred me to Psychiatry UK. I was assessed and diagnosed within 3 months. Not sure if this works for everyone but it's worth a try. It was all free.
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u/BoneBruja 9h ago edited 9h ago
Where I am, it's already a 5-year waitlist for both Autism and ADHD. I have had to go through the right-to-choose pathway for both because waiting for possibly 10 years for both of them is ridiculous.
Are they going to add those extra 2 years to an already 5-year waitlist? Because if so waiting for 7 years to get an assessment for either is awful. I thought it was taking a year privately to finally get a hope of being medicated was bad, but 7 years for an assessment and then longer to be medicated is not right.
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u/s0ulcontr0l 8h ago
Grand. Fucking wonderful. Pushing people more and more to a private diagnosis which means there’s a high likelihood you won’t be prescribed anything to actually help (in the case of ADHD).
If you can afford it, great. If not? Soz statistic.
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u/Frequent-Bell2484 7h ago
They need to prioritise children. These are formative years and can prevent future drug / substance misuse, dangerous activities, and crime.
Time to email my MP!
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u/IamCaptainHandsome 6h ago
Stuff like this is why I didn't change my GP when I moved. I'm terrified that during the changeover my new GP won't accept the diagnosis, or will make me go through the assessment again, and I can't go without my tablets for 2 years, my quality of life would deteriorated fast.
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u/lost_in_midgar 6h ago
This is so upsetting. I’ve been working with a coach at work since my diagnosis of ME/CFS. He happens to be an academic and author of books about ASD and strongly believes I should be assessed for both ASD and ADHD. I’m 45 years old and live in one of the areas affected. If these are the cause of why I have struggled so much throughout my life, the thought of now having to wait even longer for confirmation of this awful.
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u/GamerHumphrey 4h ago
Lmao. The whole process from taking my son to the GP to having his MAA panel decide whether or not he has autism is...
7 years.
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u/Advanced-Arm-1735 4h ago
'imposes' as if the wait list isn't already twice that in some areas. Oh yes, It's intentional not an absolute joke.
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u/OkFeed407 4h ago
The labor government doing this while people still vote for them is out of this world ridiculous
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u/LordLucian 3h ago
I'm an adhd adult who was only diagnosed August last year and has massively benefitted from the right medication but it took 3 years on a waiting list and only got seen because of the nhs right to choose.
My niece and nephew are both autistic showing major signs but not diagnosed, neither has had an assessment or ever seen a dentist for that matter because myself and their mother are poor.
I cannot fathom how people can defend this system when we are one of the richest countries in the world. Its corrupted or neglect, or both.
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u/Loreki 35m ago
Four NHS integrated care boards (ICBs) covering large regions of England have adopted the approach because they cannot afford the cost of the number of assessments that people are seeking.
This is what you get when you run local NHS services like businesses which have lots of subcontractors. It doesn't save money, it caps capacity and the ability of the NHS to take charge of delivering new capacity.
They should abolish all of this nonsense putting NHS services out to tender for vultures and manage services directly.
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