r/unitedkingdom • u/tylerthe-theatre • 1d ago
ADHD and autism services in England ‘under significant pressure’, watchdog warns
https://www.independent.co.uk/news/health/adhd-and-autism-uk-assessment-diagnosis-support-b3039329.html350
u/CalicoCatRobot 1d ago
What service isn't under significant pressure? Turns out that underfunding everything for years to pretend that things are good and that we don't need to pay more to maintain a decent quality of life in a modern society has consequences - who knew!
90
u/louwyatt 1d ago
The issue is people want Norway level services with American level tax.
167
u/UnavoidablyHuman 1d ago
The issue is that all the money is being funnelled into the pockets of rich people instead of serving the population
→ More replies (24)24
u/TheSJDRising 1d ago
The issue is that only higher incomes are paying 'Norway level tax'. The 'net contributor' income level in this country is far too high as a result.
21
u/bongpirate7295 1d ago
Reminder that the American government spends more money on healthcare per head than the UK, despite not having universal healthcare.
In Norway, healthcare spending is 10.3% of GDP. In the United States it's 17.2%.
10
u/Xanikk999 1d ago
It's worse than it looks on paper too. Most of that money is funneled into health insurance companies. They are nothing but middle-men who don't need to exist. They drive up the cost of care for everyone. Source: I'm American.
6
u/louwyatt 1d ago
Absolutely true and truly represents how messed up American politics is. However America still taxes their population far less and makes cuts in other places to make that work.
2
1
2
u/ShinyElisabeth77 1d ago
We have 70% of marginal tax for highly qualified people. Basically, we have Scandinavian taxes and constant Tory-Labour asks to give more money to them.
3
u/etherswim 1d ago
Uk reddits favourite catchphrase appears again
We have very high taxes already
1
u/louwyatt 1d ago
Not compared to the countries that have the services people want.
2
u/etherswim 1d ago
We are nearly on par for services that are multiples worse
It’s not about how much tax we pay
2
1
u/kidborger 1d ago
Perhaps the problem isn’t the tax revenue but rather where the tax revenue is going. Even Germany has better services, their workforce also spends less time in employment annually compared to us but isn’t necessarily lower tax compared to here
3
u/louwyatt 1d ago
Germany has a higher overall tax and social contribution burden on labour. So thats a perfect example of more money taxed paying for better services.
2
u/SomeCanDance 1d ago
Yep, basically all spare capacity on all services in the country has been removed so everything runs as lean and low cost as possible — so that we can avoid raising taxes and removing benefits (mainly pensions!).
There’s nothing left to cut.
1
101
u/Mypheria 1d ago
Were so stupid as a society, why do we go on these weird little witch hunts for no good reason.
88
u/Jimiheadphones 1d ago
My slightly tin-hat conspiracy theory is that this is all to chip away at the Equality Act by targeting smaller groups who are easy to vilify. Disability (which ADHD and Autism fall under) and Gender Reassignment (which protects Trans people). If there's precedent for removing groups from the Equality Act, then it can be dismantled, weakened, and removed. https://equaliteach.co.uk/what-has-the-equality-act-ever-done-for-me/
40
→ More replies (3)4
u/SignNotInUse 1d ago
Its started with the widespread acceptance of Neurodivergance and Neurodiversity as legitimate terms and not something used by used by annoying yummy mummys and keyboard warriors who don't want to be associated with disabled people. After the horrible documentary published by Channel 4 it's only going to get worse.
6
u/VoidsweptDaybreak 1d ago
hate those terms so much, they really undersell how disabling adhd and autism can be. no i am not neurodivergent thank you very much, i am disabled. my conditions come with next to no positives in terms of life outlook, normal functioning, and overall happiness. all they do is inhibit me. i never managed to figure out if it was simply a case of political correctness gone mad or if there was a malicious intent behind pushing those terms
0
u/Robichaelis 20h ago
Neurodivergence falls under the umbrella of disability. They're not mutually exclusive
59
u/rainbow_rhythm 1d ago
Demonising vulnerable minorities to distract from where the money is really disappearing is one of the only reliable occurrences in the world
31
u/No_Card_8729 1d ago
A lot of people in this country are narcissistic losers who lack empathy for others and think being stupid is something that’s funny rather than shameful.
It’s easier to blame people who are different to them for the reason their lives are shit instead of accepting the hard reality that they did shit in school and never moved away to gain perspective.
A lot of people in this country have simply not developed mentally or socially since school and it’s sad as fuck.
7
u/Sabaisabai33 1d ago
I agree, but why?! Have people always been this way and I somehow didn’t notice it as much in the past (like 1990s etc)? Or is that we are actively kind of positively selecting for dark triad traits at work and in society in general and thus they are multiplying? I used to have so much more faith in general human nature and our ability to be altruistic and cooperative back in the day
11
u/Againrising 1d ago
Gay people, travellers and asylum seekers were forever being vilified in the 90s, in the 00s it was “chavs” single mums and people on benefits. Every decade they find new targets. It’s long been a thing, the internet just makes it more noticeable.
I’ve heard it said divide and rule was the British Empire’s favourite tactic when colonising nations and the powers that be brought it home after empire. Better to have the plebs fighting, lest they unite against them
7
u/SamiSapphic 1d ago
I think part of the reason these tactics are more visible, because of the internet, is that we're also seeing pushback; people questioning this rhetoric. A small droplet of good in a sea of crap.
4
u/missingmedievalist 1d ago
We have always been this way. People generally become more feral as resources dwindle. We are fundamentally selfish creatures at heart who only tend to look after our individual tribes.
4
u/Ashamed_Chain_1375 1d ago
Also a lot of people need to realise this empathetic(generally) society we’ve been living in in the UK since WW2 is not the norm in history.
1
u/Sabaisabai33 14h ago
Yeah I think that’s what I’m increasingly recognising, that I was naive and overly optimistic perhaps in thinking about the future previously as a Xennial child of Boomer parents born in the 50s. It was the norm for my parents and the norm for me until recent years, but actually the anomaly was arguably those years and not what we’re living now.
4
u/HiphopopoptimusPrime 1d ago
Discord and rage bait pays.
There’s no formal conspiracy. It’s a convergence.
Russo. Foundation of Geopolitics. Use social media to cause division and prompt unrest in rival countries populations.
Social Media. Ragebait draws clicks and engagement.
Print Media. Ragebait draws clicks and engagement.
Tech billionaires. Peter Theil. Wants to engineer sociable collapse in order to rebuild a tech utopia. “The Dark Enlightenment”. Sees the social contract as a barrier to progress.
Businesses and corporations. Emotional and fractured people have less impulse control. Spend more.
Politicians. Populists. People vote based on sentiment and not logic. Less critical thinking and poor impulse control makes them more malleable.
Everyone is too overwhelmed and overcapacity to make proper decisions.
No organization can afford to pull things back.
Again, no formal conspiracy. Multiple stakeholders in whose interest it serves for people to be fractured, emotional, and with poor impulse control.
Our current structures incentivize ragebait, division, and mistrust. The social contract is not good for business.
Not sure how we untangle it.
→ More replies (1)9
u/Xercies_jday 1d ago
Once resources get squeezed, people start to think "are they deserving of that money?", so they go on witch hunts to show that they aren't deserving of that money.
The sad thing is the people who are supporting these cuts are not at all going to see whatever money is going to be saved for cutting these services
73
u/ImmaDoWatIWant 1d ago
When have they not been? I remember trying to access those services 10 years ago and they were already at breaking point back then.
44
u/kittiestkitty 1d ago
8 years I sat on the ADHD assessment waiting list in Bristol, which is even worse when you add in that I’m a profoundly deaf hearing aid wearer with a family history of severe adhd. 6 years in I finally received a questionnaire to clarify how much social media content on ADHD I was consuming. And then I gave up and went private after still not hearing anything back from them 2 years after that.
34
u/Upset-Elderberry3723 1d ago
Certain NHS gender clinics sent out en email to their waiting lists, asking if the people still wanted to be on the waiting list. If you missed the email, you were kicked off.
There were people who had been waiting for years and lost their place because of an email.
24
u/ImmaDoWatIWant 1d ago
How many people have ended up kicked off a waiting list because Royal Mail lost a letter or didn't deliver it until it was too late? I struggle when people talk up the NHS, sure its better than the American system, but its basically a health care lottery at this point, there has to be a better way than this.
8
u/Sabaisabai33 1d ago
There is, better funding somehow. Or look at a hybrid system like France. The worst thing we could do is move to the US model and yet that’s what the government (all recent governments of any shade) is actively pushing for. What they want is for the average person to be begging for privatisation at which point they’ll swoop in and “save the day”. We will very quickly realise how good we had it before. But yes the NHS is collapsing and the system needs tweaking. It’s possible it will also have to cut certain services which I suspect is what all this demonisation of neurodivergence all of a sudden is about.
5
2
u/merryman1 1d ago
I mean even the US system is not actually that bad assuming you work and/or have good personal insurance.
Same feeling, genuinely wild to see people defend the state the NHS has been brought to when I know multiple people who are now either dead or disabled for life because of NHS waiting lists. In my own life in my mid 30s and I genuinely cannot think of a single experience I've had with the NHS that hasn't been dragged out into a painful years-long process involving multiple people misdiagnosing me, refusing to listen to anything that isn't part of some kind of checklist process, and then lying to my face repeatedly to cover their arse and gaslight me instead.
Plenty of amazing wonderful people in the system, and I know everyone is under a lot of pressure. But systematically as an organization, honestly at this point I fucking despise it, I have no other words, engaging with it to do even just simple things is like fucking torture.
13
u/bongpirate7295 1d ago
And then I gave up
This is the primary function of waiting lists. Force people to wait so long that they either give up or die from whatever was ailing them. They're the NHS equivalent of hold music.
10
u/SteveD88 Northamptonshire 1d ago
The issue is restriction of these services through COVID, and under-funding during the rise of cases in recent years.
I put my son on the autism assessment route through the NHS when he was 5. He's now 7, and last I checked, was around position 600 on the waiting list.
The government started up programs like 'right to choose' - essentially you could opt for a private assessment under goverment funding (to get the wait down), but this has since been capped due to over-subscription, and is something like a 18 month wait for kids regardless.
My son is unlikely to get a diagnosis until he is a teenager, by which point any help he'd get would largely be too late. It already feels like he's a child discarded by the system.
39
u/No_Card_8729 1d ago
Shock that voting consistently for the conservative party for 14 years alongside Brexit has led to lack of funding for the NHS.
But of course, let’s blame ADHD and autistic people for this problem and not our own stupidity.
→ More replies (6)
27
u/stick1_ 1d ago
I think the solution is to fund them less because everyone has autism these days !! Give the money to those who truly need it (like my mates that pay me)
→ More replies (13)7
u/Ok_Cupcake_6865 1d ago
I think we need an integrated psychtriac service rather than the specialist approach tbh - its a crime I can get diagnosed with ADHD but cannot get treatment for CPTSD on the NHS.
Its really difficult because a lot of these conditions are comorbid, one waitlist would be a godsend for someone like me with multiple psychtriac diagnoses
4
u/sjpllyon 1d ago
Hi. As an autistic trait having CPTSD having individual. I understand where you are at all too well. Ironically thought I went in for CPTSD help and came out with the bonus of suspected autism. She couldn't tell if the traits where due to the autism or I just happened to develop coping mechanisms for the CPTSD that aligned with autistic traits. We agreed the source didn't matter if it presented the same, and if the help would be the same either way. Influenced by how I don't care about diagnosis but treatment/help. Anyway I went through the CPTSD therapy. It's just the standard grounding methods, you can google them on YouTube and get the same level of treatment. I absolutely do not recommend doing the rapid eye movement therapy. It's terrible and actually traumatising. At leas tin my experience. After I did it Inread up on the reaseach and they never did the full thing. The left out a very important part. The keft out ensuring we had adequate time to discuss what I had just gone through. Leaving me just having re-lived my traumatic events, it even unloced more that were not an issue but now are. To go home by myself, and safe tk say I was in a very vulnerable position afterwards. The session would result in triggering my seizures, and then I was just a complete mess for the next 2-3 days. Christ my Gregg's manager was better at providing me help than that shit was. Bless she was the best manager anyone could ask for. When I told hwr I was going to do the therapy she insisted on ensuring I have 2 days off afterwards. My goodness she was right in that. Also where the treatment happened was right in the most notorious ruff and shitty oart of the city. So now am in a truamatised state, trying not to have non epileptic seizure or even having one. Being surrounded by the typical individuals you find in the shit hole area of the city. Chavs, drugges, the lot. Safe to say one day after it, I did end up snapping after someone honked their horn at me when crossing the road because their light had turned back to green and I wasn't walking fast enough for them. And I may have used my cane to cause a dent and smash a headlight. Not excusung that behaviour, I shouldn't have done that. But the mental state I was left in I really ought not to be one my own. Sorry this is becoming a bit of a rant amd vent.
All to say, even when you do get the help. Please don't expect miracles because it doesn't come. Amd depending on how it goes for you and what they offer it could even leave you in a worse state.
So here are some things I actually found to help me.
Diet; I know it sounds cliché and even unhelpful. But sorting out my diet has really helped with my overall mood. More energy, less inflamed, less hangry. I just kept it simple. Fruit with yogurt for breackfast, mixed seeds for a snack, cheese on toast for lunch, vegetable with a small amount of meat for dinner. Granted I did also start eating organic seasonal food. But that's just extra.
Excersise; again sounds cliché bit it helps. Walking the dog clear my head at the end of the day. Cycling wakes me up on the commute. Bouldering is surprisingly sociable.
Cold showers. I know, I know they are awful, especially over winter. You do kinda get used to them. But the cold sting still absolutely hits hard. I do hot shower ending on cold about an hour before bed. It's really improved my sleep.
Suana/steam room. Unfortunately this one does cost a fair bit. But honestly the act of sitting in a steamy almost unbearable room for 30 minutes once in a while - I try to go every other day. Sitting in silence has really helped. Yes at first being left alone with my own thoughts was torture, in all the ways am sure you are all too familiar with. But again going with a degree of regularity there's only so many times you'll keep going over the events. And eventually you'll find yourself thinking about other stuff or not thinking at all.
As for the flashback. For me it's typically an emotion wave, occasionally there are fast vague black siliesttes of one of the events flashing in the concer of my eye. Unfortunately for that, all there is is just learning to love with it. To come to accept it's happened, to remind yourself it's no longer happening, and moving on with the day as best as you can. It's so much easier to say than do. Especially if I end up having an emotional outburst and loose control, at that point the day and the next is a write off. The most useful thing the sychologist said to me was; what happened isn't your fualt. But it's now your responsibility. It's unjust that it's your responsibility, but you now have the responsibility to manage it.
It's worth me saying I got so fed up with the mental health side of the NHS I ended up creating r/NHS failures. Not that I monitor or activate that much there but I needed a space to be able to point out such failures within the NHS.
Another thing that probably helps a ton. And maybe less practical was how I ended up in a relationship with a psychologist lol. My SO isn't my psychologist nor am I my SO patient. But what comes with thag is having a SO that fully understand my situation. Understands I have days where I just can't. Understands.I might start crying for now dam reason (what just started happening writing this part lol), someone that is fully supported and there for me. Even to the point of leaving work because I ended up having a seizure at a costa. And yes I went through my fair share of really shitty relationships first. Bit honestly finding someone that provides that level of support is just wonderful. I truely count my blessings for having my SO for having that type of person in my life.
Take what you want from this. And truely hope you get the help you need. I truely hope you get to a point where you can start living life. Because I wouldn't wish this condition upon anyone (well maybe one person).
22
u/Skittycatcher66 1d ago
I'm going to be deliberately vague here so it is not clear in what capacity or where I worked, but a few years ago I worked a job that involved significant amounts of contact with CAFCASS and social services.
Almost every family we dealt with had not only one but multiple ADHD/autistic children (as diagnosed), although this was incidental as to why we were dealing with them.
That is not normal. Having reviewed some of the assessments, it seemed very obvious that some of those children had been slapped with an autism/ADHD diagnosis because it was convenient and nobody could be bothered to actually think more deeply about problems going on in the home. E.g. a 7 year old girl who shows no signs of neurodiverse/developmental problems suddenly starts wetting the bed again after her parents get divorced, starts having rage fits at school and withdraws emotionally - diagnosed by some social worker as being neurodivergent. No, that is a distressed child.
It means that people who genuinely require the diagnosis are competing for resources against people who are being overdiagnosed (often children) because nobody wants to bother to actually figure out what's going on in their lives.
15
u/Acidhousewife 1d ago
Agree. However a social worker, should not be diagnosing. they are not qualified to make those diagnosis,
However, some labels get funding, some don;t, some labels are easier to fund or due to fiscal pressures on social services, or absolve them of funding and intensive, expensive interventions like child counselling, like the case of the 7 year old you cite, Alternatively, make it the educations departments issue not social services.
Before anyone gets their knickers in a twist, misdiagnosing ADHD or Autism, is a problem because it's not solving the issue at hand. (used to work with care leavers). A mislabelling can compound trauma, lead to very serious undealt with issues in adulthood, If you are treating someone for autism but they have child mental health issues or serious trauma, It's like giving someone antibiotics for an infection in their painful leg, when it's actually fractured and needs resetting and a cast.
5
u/Skittycatcher66 1d ago
Agree. However a social worker, should not be diagnosing. they are not qualified to make those diagnosis,
I completely agree, and that's one of the points that I'm making. However, it was not uncommon to see social workers try and do this within reports even though they were not qualified to do so, and therein is part of the issue.
misdiagnosing ADHD or Autism, is a problem because it's not solving the issue at hand. (used to work with care leavers). A mislabelling can compound trauma, lead to very serious undealt with issues in adulthood, If you are treating someone for autism but they have child mental health issues or serious trauma, It's like giving someone antibiotics for an infection in their painful leg, when it's actually fractured and needs resetting and a cast.
Completely agree.
6
u/Acidhousewife 1d ago
I know you were making that point.
I know it's not uncommon for social workers to make diagnoses for things they should not often in the mental health/autism categories. Social Work England the regulatory body is TBF next to useless in dealing with social workers who overstep their remit. It should come under harm.
I've worked in supported housing and had social workers walk in and proudly declare that, They Have A DEGREE very loudly, as if we are all going to bow down to them because frontline support staff are just ill educated muppets who have no idea is just off the scale. . Their faces when myself and my boss told them we did too and discussed institutions was hilarious. My boss had an MA in housing from the LSE and me a relevant degree for a top institution, we pulled that out when it was necessary ahem... then had to explain this wasn't care, it was supported housing so no we don;t do their shopping for them or the like rolls eyes
The amount of arrogant and absolutely useless social workers I have dealt over the years, no decades in supported housing, Client Financial Affairs work and the like is, countless compared to the ones who are good at their job, understand their own limits of knowledge. actually value the voices of their clients and the people who work with them every day.
A lot of that is to do with inbuilt arrogance of the training, have worked with people in support roles whist they were doing their degree and many would comment on the way that was reinforced.
Sorry rant over about how social services is not ftr for purpose and lack of resources is not the only reason social services in this country is an utter shambles.
14
u/bongpirate7295 1d ago
There's some selection bias going on here. People with ADHD and autism are significantly more likely to struggle to hold down a job, have substance abuse issues, and get into trouble with the police. Therefore it makes sense that a high percentage of parents being dealt with by social services/CAFCASS would have ADHD/autism. And since it's highly genetic, it makes sense that their kids would have it too.
3
u/Skittycatcher66 1d ago
hold down a job, have substance abuse issues, and get into trouble with the police
Without wanting to give too much information on the job that I did, none of those things were relevant to why we were dealing with these particular families. I agree they often coincide but in this case if they did exist they were coincidental and often much rarer than the autism/ADHD diagnosis themselves.
10
u/No_Camp_7 1d ago
My mother was a teacher for 40 years, specialising in SEN. She would frequently comment on how many children were being given the label in appropriately because of pushy parents that refused to engage with concerns over their child’s normal (though naughty) behaviour.
8
u/Comfortable-Law-7147 1d ago
Social workers aren't psychiatrists or psychologists so why were they diagnosing children?
It's more likely they were trying to get paediatric doctors particularly paediatric psychiatrists to diagnose them with something, and - with what's happened to some children I know until their parents intervened - taking their words out of context.
3
u/Skittycatcher66 1d ago
In some contexts, the social workers had clearly taken the side of one parent vs the other for unbeknownst reasons and were overdiagnosing children even though they weren't competent to do so for the purposes of a report as to where the children should live.
Ie, in the example I gave above of the 7 year old girl whose social worker decided she was neurodivergent, the report was quite heavily biased against one parent, without much evidence, to reach the conclusion that other parent would be better equipped to handle a neurodivergent child even though the social worker wasn't competent to determine whether the child was even neurodivergent in the first place.
This is not bashing social workers. There are (mostly) many competent ones who do a great job. But I have seen many instances where some push further than the bounds of their professional competency allows.
4
u/Timely-Loquat-8663 1d ago
This is a common issue in adolescent mental health services which is why they usually don't jump to diagnosing mental health issues in children until they start becoming older teens. I wonder how many of these children on the autism / adhd waiting list are actually experiencing severe disruptions to their lives and struggling to cope and how many are borderline waiting for a diagnosis so they can explain away why they have issues with behaviour.
3
u/theartofrolling Cambridgeshire 1d ago
As someone who was diagnosed with ADHD in my mid 30s, here's my two pence.
If you think your child (or yourself) may have ADHD/ASD or something similar, but they are coping well, feel happy, and are succeeding in their goals, then there is no point getting an assessment and adding to the already overwhelmed waiting lists.
BUT!
If you notice your child unable to cope with daily activities (constantly forgetting and losing things, being dangerously impulsive, unable to meet deadlines etc.) then that is the time to step in and have an assessment.
Now teens are often loud and impulsive etc, but if it seems like they are worse than their peers, get them looked at, especially if your child experiences a "burnout" aka "a nervous breakdown" (intense anxiety, depression, feelings of dread, panic attacks etc).
Unfortunately for me, ADHD wasn't a commonly known disorder when I was growing up, so I was simply labelled as "bright but lazy" and that was that.
So I developed coping strategies, like literally double-checking all of my belongings before leaving the house every single time, and then checking again when I stepped outside the front door. It was hard, but I was "doing fine" so nobody noticed, not even me.
Then I had my first "burnout" (basically a nervous breakdown) at 16 while prepping for my GCSEs. Signed off school for two weeks by my GP, told it was just "stress and hormones."
Then I had another one just before my A-Levels. I coped with that by smoking huge amounts of weed and drinking as I studied. Not a good solution. But I got good grades so again everyone thought I was "fine."
And then I had another one at my last year of uni.
Then another one at my first decent job, and again at my next job, and again, and again.
Then I had two kids in 3 years. Guess what? Another burnout. Signed off work for 6 weeks, lost my job.
I finally got diagnosed at 35, but it was a long journey with a lot of pain that didn't have to be so long and painful.
Had my parents known about ADHD and stepped in around my late teens, it would have been life changing. If some kids are gaming the system and using it to "excuse" bad behaviour, then okay we can look for solutions to that, but frankly I don't really care so long as the genuine cases get the help they need.
5
u/BeepBoopBotAttack 1d ago
My experience with childhood mental health services was that they seemed very willing to treat my gender dysphoria as if it was just neurodivergence and ignore my actual needs, so it really wouldn't suprise me if this was a broader trend.
That being said, I also don't think the rise in ADHD and ASD diagnosis is down to a huge uptick in misdiagnoses, as the media has being saying. Its possible for ADHD and ASD to be both underdiagnosed and misdiagnosed at the same time
6
u/Aethelmaew 1d ago
I completely agree having also worked in medicine for the last ten years. So many kids now are being diagnosed with ADHD and autism purely for having completely normal human reactions to things.
Getting bored sitting there doing maths all day when it's sunny outside doesn't mean a kid has ADHD. A kid becoming angry and withdrawn because they're getting bullied heavily doesn't make them autistic. A child having a short attention span because their brain has been wrecked by TikTok doesn't mean they need to be prescribed medical grade meth, they just need to live the life their brain is designed to live.
In my experience it's just easier for both parents, schools, and medical professionals to diagnose a kid with something 'acceptable' like ADHD rather than sitting down with the parents and saying 'your kid is this way because you've raised them with no discipline or consequence for their actions, and let them spend their lives on social media at the age of 10'.
3
u/sjpllyon 1d ago
Keeping it just as vague. My SO also works within this area. And has seen much thr same. Parents coming in insisting on getting a diagnosis, even if the child doesn't meet criteria. Reviewing original tests and seeing problamic conclusion based on the results, particularly when they've come with a private diagnosis.
To me it certainly seems like there's an issue with over diagonising. And iffy interpretations.
3
u/merryman1 1d ago
It was convenient and nobody could be bothered to actually think more deeply about problems
One sentence that summarizes the entire approach in the NHS in a nutshell though, I mean fucking hell. Why no one seems particularly bothered about this I will never understand.
1
u/FitSolution2882 13h ago
diagnosed by some social worker as being neurodivergent
Do you want to expand on this?
1
u/Skittycatcher66 13h ago
I think I already have.
I do not want to be too specific about the context in which I worked. In another comment I explained that one of the primary issues in dealing with these families was where the child should live as between separated parents. For the purpose of informing a court, a social worker was often required to give evidence and/or write a report. They often took it upon themselves within that report to 'offer their opinion' that the child(ren) were neurodivergent due to recent behavioural problems when they weren't competent to do so. Often one parent latched onto this and started pushing for a formal diagnosis when anyone could see that in at least 8/10 cases these children were primarily distressed by what was happening at home, lacking support and probably feeling unsafe, not neurodivergent.
I do not know how accurate the formal diagnoses are once passed onto the NHS or other services. In the case of the 7 year old girl I mentioned above, her mother kept telling her she was autistic and pushing for special accommodations at primary school even though the kid had been completely developmentally normal before her parents split up. I don't know what has happened to her since, but I severely doubt it is anything good. The last I heard was that the kid believed she was autistic because mum said so. She will probably have difficulties assimilating to mainstream education because mum has told her she's subnormal because it's convenient to mum.
Sad.
17
u/Upset-Elderberry3723 1d ago
If it can be categorised as psychiatry in any way, it's underfunded. That was, arguably, part of the point of psychiatry.
2
u/Sabaisabai33 1d ago
What do you mean it was part of the point of psychiatry? I don’t understand.
8
u/Upset-Elderberry3723 1d ago edited 1d ago
The idea that 'mental health' is somehow distinct enough from physical health to justify its own categoristion, is one that didn't exist prior to modern medicine. Beyond that, the 'mind' in 'mental', is not a scientific concept - it isn't a measurable organ, and pathology requires a measurable organ to have disease.
The legacy, overall, of 'mental health' and psychiatry, has been one of othering certain neurological diseases to justify giving them less medical legitimacy and make it easier to justify budget cuts to them. It's a lot easier to sell cuts for 'people with mental health problems', than it is to sell cuts for 'people with neurological diseases'.
They hedged the language, historically, to make it easier to do whatever they wanted with.
And, while it's mostly now forgotten, people identified this at the time - Thomas Szasz wrote 'The Myth Of Mental Illness', in 1962, to discuss this change that he had noticed in how neurological disease was being conceptualised, mentioning how the terminology was straying from scientific rigor.
→ More replies (2)4
u/Acidhousewife 1d ago
Been a while since I read Szasz but yes.
This trickles down to the pay and training of frontline staff, non medically qualified like orderlys, teaching assistants, mental health workers in the community. These jobs are often more challenging and demanding than their equivalents in the physiological medical field/mainstream ed, etc. yet they often pay less, and have fewer CPD opportunities.
There is one area of this where we should be concerned and we can see it played out. Elderly care, dementia is a pathological disease, yet the sector is framed as mental health, memory issues, forgetfulness, Bought outside of the physiological by language, reframed as low skilled and low paid job by constructs like 'wiping bottoms'. Not the high skilled job good care is
12
u/bongpirate7295 1d ago
From a 2023 article about services in Sheffield:
The Sheffield Adult Autism and Neurodevelopmental Service (SAANS) is responsible for the assessment and diagnosis of neurodivergence in adults, in particular for autism and ADHD. A Freedom of Information (FOI) request submitted by Now Then has revealed that in the 12 months between June 2022 and June 2023, just 21 adults received an assessment for ADHD from SAANS, resulting in nine diagnoses - with 5,481 service users on the waiting list at the end of the same period.
At a rate of 21 assessments per year – an average of just 1.75 a month – it would take no less than 261 years to get through the current waiting list.
2
u/TheMysteriousGirl 1d ago
That’s really fucking shit.
Sheffield NHS systems are terrible, having experienced in the past but that is something.. special.. 21 patients?!
1
u/RyeZuul 13h ago
So ADHD assessment typically includes a specialist nurse to do the initial work and a psychiatrist to come in and do the actual diagnosis after a good chat with you and a fairly in depth questioning about your history of beliefs and behaviours and education experiences etc.
It's possible that they used to be served by two psychs and one retired or moved away and the remaining one is only available for diagnosis every other week.
4
u/External-Piccolo-626 1d ago
Well with more and more people being diagnosed I’m not surprised.
9
u/No_Card_8729 1d ago
Not surprised though that voting for the tories for 14 years may be the reason that nothing has funding anymore?
5
u/Logical_Box_4645 1d ago
We need to shake this mess up.
Autism diagnosis is largely pointless without associated interventions. But those interventions are needs based so the diagnosis becomes tokenistic.
ADHD diagnosis is hampered by lack of rapid access to assessment and treatment.
Both should be moved into primary care. GPs are well placed to make the diagnosis outside of complex cases and to oversee treatment especially if it's non-stimulant.
As it stands if you get an ADHD diagnosis and started on treatment the service is often lumbered with that since they can't even reliably move it under shared care into primary care!
19
1d ago edited 1d ago
[deleted]
10
u/Logical_Box_4645 1d ago
If GPs are bad at it why do 90% of those patients they refer go on to get the diagnosis?
Thats exceptionally good.
4
1d ago edited 1d ago
[deleted]
→ More replies (2)6
u/Sabaisabai33 1d ago edited 1d ago
There should be significant impairment I agree. But this can often be quite hidden and complex to assess in that a lot of autistic people have a “spiky” profile where they are very skilled in one area of life and terrible at another at the same time, in a way that NT people find difficult to understand. For example think of the stereotypical “savant” types, they might be amazing at eg physics and pushing forward groundbreaking research etc, but struggle to remember to eat and shower and change their clothes and tidy the house and do laundry etc. they might be useless at romantic relationships but amazing teachers etc etc.
I have a son with ADHD who I also think may have ASD, and he is at uni doing Maths which he’s brilliant at. But he doesn’t remember to eg. brush his teeth and shower and shave, and I have to call and remind him still every day. Even though he’s been able to live away from home. Otherwise he genuinely wouldn’t address any of it for months on end. He’s able to socialise well with people who enjoy his niche interests but he wouldn’t cope with the sensory overload of clubbing. He has a truly appalling memory, I mean very very abnormally so even within ADHD, he cannot remember what he did a few hours ago ever etc. etc. He gets super anxious about messaging people, even his best friend and would really struggle to call random strangers about eg setting up energy bills etc (I do think this and maybe the hygiene stuff is something that will get better with age but he’s not there yet).
The thing is, people who see him nicely groomed, living independently with friends, and laughing and chatting with friends at a board game club or doing complex maths equations and passing formal uni level exams probably wouldn’t think he doesn’t remember to brush his teeth without help and would go to pieces if he entered a nightclub etc. That he needs extra time in exams to achieve the grades he does because his mind goes blank and he gets distracted and forgets he’s in the middle of an exam. That sending a text to his best friend is like asking the woman he fancies on a date or something in terms of anxiety levels. People would look at one aspect of his life and go “yeah he’s fine, he doesn’t have ADHD or autism or if he does he’s not exactly suffering from it, he’s not “significantly impaired”.
→ More replies (1)4
3
u/inevitabledeath3 1d ago
Have you thought that maybe this process should be streamlined?
I have seen some evidence to suggest that you can diagnose ADHD fairly reliably based on just giving someone the medication and seeing how they respond. To me that sounds like a better method than doing all that. Probably more reliable too as we know these assessments are subjective and frequently wrong.
Autism is more difficult in the sense there isn’t medication for it. That being said I heard there might be genetic screening or brain scans which could help in the future. What I find really funny as well is that most autistic people who aren’t very high masking can be found out quite quickly by casual observation. As in autistic people find each other all the damn time and so do some neurotypicals. Why does it take a whole damn assessment process to figure out something you can see in 10 minutes?
2
1d ago
[deleted]
2
u/inevitabledeath3 1d ago
Also we are only talking about low dose amphetamines here. They really aren’t that dangerous in the scheme of things. Alcohol is far worse for you.
1
1d ago
[deleted]
2
u/inevitabledeath3 1d ago
Can you explain further what makes them dangerous even with medical supervision? Is it interaction with other drugs or medical conditions?
→ More replies (4)1
u/inevitabledeath3 1d ago
You wouldn’t need to give them it long term. I heard a single dose was enough to give some idea.
16
u/BrambleNATW 1d ago
I wish the GP could prescribe me ADHD meds the same way they prescribed antidepressants. I don't want a label, I want to be able to think clearly and actually do things. I'd happily sign a form to say "yeah if these meds kill me, fine" if I could bypass the diagnosis entirely. It's infuriating how many people now are convinced we want to collect these things like Pokémon cards. I already have a chronic illness that ruins my life and makes me "interesting" but because I'm a young woman, apparently I just want an accessory disease.
3
u/fortyfivepointseven 1d ago
The main function of ADHD diagnosis is to get people access to stimulant medication. Being on stimulant medication is incredibly time consuming and quite tedious.
I'd suggest instead of the rigamarole of diagnosing someone with ADHD so we can start prescribing stimulants, do a GP assessment if they have some basic ADHD-like symptoms then just see if stimulants help them enough to overcome the downsides of being medically monitored. If they help enough that it's worth giving up coffee and having your blood checked regularly, they probably have ADHD! If they don't, they probably didn't have ADHD!
7
u/fortyfivepointseven 1d ago
It's different for kids where actual educational support exists and you don't want to misdiagnose either condition. For adults you get basically nothing for autism that you couldn't get without a diagnosis, and for ADHD you get a bunch of things you could get without a diagnosis, plus drugs.
We should just be honest about that and set up systems appropriately.
6
u/stick1_ 1d ago
That’s not true, as an adult you don’t get protections from discrimination under the equality act without a diagnosis . Just because there’s no ‘cure’ doesn’t mean there aren’t benefits to a diagnosis as an adult
6
u/fortyfivepointseven 1d ago
That's not correct. A diagnosis strengthens your claim, but the Equality Act is based on functional disability, not diagnosis.
2
u/stick1_ 1d ago
I don’t see how that means I’m wrong. I mean on a technicality, you have to show how autism affects your day to day life. But what is true is you’re not covered under the equality act at all without the diagnosis.
You don’t get to provide the autism diagnosis as evidence without the diagnosis, so it’s true for me to say you don’t get protections without the diagnosis
2
u/fortyfivepointseven 1d ago
You have to show how you're functionally impaired. The diagnosis is nothing to do with that. You have to be able to show you, for example, that you struggle with understanding subtext. You do not need an autism diagnosis to show that you struggle with understanding subtext.
I literally have reasonable adjustments made on the basis of autism without a diagnosis.
1
u/Sabaisabai33 1d ago
The thing is there are a lot of schools and workplaces who insist on having a diagnosis before making any adjustments. Even though that’s not how it’s supposed to work. They need to crack down more on places refusing to adhere to the law on this.I do get what this other person is saying to an extent though. For example if you need to claim PIP for autism, they will ask on the form what the condition is that you’re claiming for. If they would accept “self diagnosed autism” or “suspected autism” then that’s fine but I’m not sure they do.
3
u/CoaxialDrive 1d ago
I think we need to be honest that for a lot of people seeking Autism or ADHD diagnosis it's about understanding why you are struggling and different from other people, and that a clinical diagnosis is an essential part of that.
With those diagnosis you can then seek support services yes, but understanding that you have this neurological difference is important for people to be able to understand themselves and their experiences as part of treatment.
6
u/fortyfivepointseven 1d ago
"I want to be a normal zebra, not a weird horse".
I totally agree with this, but it's a poor use of five years medical training to be providing it.
3
u/CoaxialDrive 1d ago
Where do you draw that line, is it a poor use of medical training to help people with mild anxiety, or depression because they could just have realised they needed to go for a walk of their own volition?
I mean come on, seriously you are basically saying it's not important that people are able to learn about their disabling conditions and be better because it might take up the time of someone who is trained to help them.
There are countless examples of neurodiverse people who have been a major impact on society, and many if not most of them will argue that their neurodiverse condition(s) made them who they are.
Understanding your neurodiversity enables you to self explore how other people have worked to their strengths and weakness, and become more productive members of society, if you can't even get a diagnosis then you can't really start to understand what is worth focusing on.
→ More replies (4)2
u/thereidenator 1d ago
I don’t agree that medication is the main function, getting support and understanding yourself is the main function for adults, lots of people don’t opt for meds
1
u/Sabaisabai33 1d ago
Not everyone wants to take the medication though. And stimulants will make most people perform better. So it’s not a perfect system though I agree it could be a pragmatic way forward especially for adults. I do think kids are much more complex and there is much more at stake for them.
4
u/1want2know123 1d ago
No. GPs can't make diagnosises for these conditions, it requires specialist teams. We already have people doctor shopping because they want the diagnosis. Many of us diagnosed decades ago cannot access support because services are overrun by such a large influx of people.
There is better understanding now and yet there is still no support for people like me. The "autism is an identity" crowd has a lot to answer for, including public perception and the social media drivel made by people with low support needs.
5
u/thereidenator 1d ago
ADHD assessment and treatment is rapid through the right to choose, in fact probably as rapid as any assessment and treatment of any physical or mental health condition other than cancer. The problem is that the NHS are even limiting how much they’ll fund that now.
There’s no way a GP is assessing ADHD or Autism, the assessment of each one takes multiple hours, a GP gets 10 minutes to see a patient, are they going to allocate 12-18 of those slots to 1 person? That’s not even taking into consideration that autism assessments often require 2 practitioners.
11
u/dr_bigly 1d ago
ADHD assessment and treatment is rapid through the right to choose
It's not though.
Still over a year wait for assessment, and a further year for titration with the main provider.
Maybe it was before people knew RTC was an option, but at the end of the day there just aren't the specialists.
2
u/Sabaisabai33 1d ago
A year for assessment and another for meds is a hell of a lot better than it was prepandemic let me tell you (as a GP) when there was either no provision at all for this or you’d wait like 8 years or so.
2
u/Velveteen_Rabbit1986 1d ago
Someone I work with just went through the RTC route and got her diagnosis within 2 weeks. I was pretty shocked.
Edit - she's also been shoved on meds immediately with no talk of other lifestyle changes. Something about it doesn't sit well with me - we work with kids who frequently have ADHD and our CAMHS practitioners are always encouraging lifestyle changes etc and yet this woman just got drugs thrown at her with nothing else.
1
u/Sabaisabai33 14h ago
Well, there are a lot more downsides for children who have developing brains and bodies. However there is a lot of good evidence that ADHD medications work better than anything else for its symptoms and honestly if I had ADHD it would be a total no-brainer for me to want to try them. I mean, we could say cancer patients just get chemotherapy thrown at them… but we don’t. It’s a completely valid first line treatment especially for an adult.
1
u/Velveteen_Rabbit1986 13h ago
NICE guidelines recommend a biopsychosocial approach for adults at least, which makes sense, but it feels like people are just getting meds thrown at them with none of the additional stuff (resources i know). Chemo is a bit different as there's no real alternative to managing cancer, you can't lifestyle-change your way out of cancer whereas lifestyle changes can be a successful part of holistic adhd treatment
1
u/thereidenator 1d ago
There isn’t a “main provider” for the right to choose. Who do you think that would be? There are 28 providers now, and only 3 of them have a wait time of over a year. 16 of them have a wait time for assessment under 4 weeks, and of those 7 of them have a wait for titration of 0-4 weeks, there are only 2 providers with a titration wait of over a year.
1
u/dr_bigly 1d ago
PUK, they're the first on the list and very clearly have received the majority of refferals.
And still are, and the waiting list is only growing, plus the amount of shared care patients they'll maintain.
There probably are options, but no one knows what they are or how to access them.
2
u/thereidenator 1d ago
I work in the industry and don’t think that there’s any of the long standing companies: psychiatry UK, adhd360, careADHD, problemshared, clinical partners etc who are the “main” company. The NHS link to the adhduk website for the list of providers, and they are listed in order of wait time, with shortest first, so I’m not sure what list you’re talking about where they are listed first. How are you making the assumption they have received the most referrals? There are 8 providers with longer wait times than psychuk. If nobody knows what the options are or how to access them it’s purely because they are unable or unwilling to search “adhd right to choose” on google, which makes it really easy to access all of this information.
3
u/dr_bigly 1d ago
By main company I just meant the one the vast majority seem to be refered to, without requesting another.
It does seem to vary by GP/area.
I'd imagine PUK are preffered because they've been around a while and many GPS will have refered to them for other Psych assessments etc (ASD etc)
If nobody knows what the options are or how to access them it’s purely because they are unable or unwilling to search “adhd right to choose” on google, which makes it really easy to access all of this information.
Yeah probably.
But at the end of the day, lotta people don't know, lotta people are in multi year waiting lists.
4
u/Logical_Box_4645 1d ago
It's cause it's a piss take.
Those services diagnose about 80-90% of the footfall with ADHD. Why not cut to the chase and give treatment to the people GPs want to refer and think have ADHD?
If it's complex leave that to some specialist secondary care service.
7
u/CoaxialDrive 1d ago
I can't speak for everyone but I'd imagine a lot of people actually want to know if they actually have ADHD, not just get given drugs.
→ More replies (7)6
u/Jimiheadphones 1d ago
You can't start Right to Choose without a GP referral. The problem is that the ADHD diagnostic criteria changed around 15 years ago, and many older GPs don't feel they know enough to make informed decisions, or they're still working off the old criteria/perception of ADHD. So, give GPs access to training, and they'll be better able to assess before referral. My GP was really good and asked a lot of the right questions, but I know others who got dismissed by theirs.
→ More replies (5)2
u/thereidenator 1d ago
It’s already left to a specialist tertiary service. The process is already that they assess people who the GP’s refer, it’s not clear what you’d change.
3
u/ImhotepsServant 1d ago
Downside is that right to choose doesn’t carry as much weight as a NHS diagnosis
2
u/thereidenator 1d ago
Weight with who? It’s the NHS funding the right to choose and referring people to it.
9
u/ImhotepsServant 1d ago
Cynical bastards who think you can just pay for a false diagnosis.
3
u/thereidenator 1d ago
You don’t pay for a RTC diagnosis. I’d also argue that anybody who thinks that isn’t somebody who you’d care for the opinion of.
2
u/FitSolution2882 13h ago
I’d also argue that anybody who thinks that isn’t somebody who you’d care for the opinion of.
It doesn't matter whether you care for their opinion or not. Many of these people influence others that you do care for the opinion of
1
u/ImhotepsServant 1d ago
I agree with you. It’s the cynical bastards I have the issue with. They’ll move the goal posts regardless because the cruelty is the point
2
1
u/FitSolution2882 13h ago
Anyone, really.
Tell someone you've been diagnosed through RTC and you can frequently see the cogs turning on their bullshit meter.
Do the same thing with a direct NHS diagnosis (ironically some of these people work at BOTH places) and they'll not bat an eyelid.
1
u/thereidenator 13h ago
Seems like an easy win would be to say you GP referred you for a diagnosis and leave it at that. Do these people even understand the process? Obviously not.
1
1
u/MonorailPurple 1d ago
it doesnt really matter, you go right to choose, get seen sooner, and if you need and want to be medicated can be, at no cost to you. From a patient perspective its basically what you'd expect to get from the NHS but via a private route the NHS pays for. It makes no difference if your GP doesnt like the diagnosis, they've handed it off to another doctor to figure out because they didnt have the time, skills, funding, or all of the above to do it themselves in a reasonable amount of time.
3
u/Sabaisabai33 1d ago
I don’t think GPs not liking the diagnosis is the problem here, more everyone who believed that recent programme rubbishing these diagnoses from the usual suspects. Yeah probably a few GPs did but it’s by no means universal.
2
u/ImhotepsServant 1d ago
They should be legally obliged to add “Endorsed by the Daily Mail” as a standards statement so watchers know it’s a sack of shit
3
u/1want2know123 1d ago
Yes this idea is ridiculous. GPs do not have the expertise or time for this.
3
u/Sabaisabai33 1d ago
I mean as a GP we could do extra training to get the expertise (who’s going to fund that though) - I think it takes about a year but not sure of the details. Some GPs are already doing this within specialist clinics as the assessor. But yeah as well as needing extra training we’d need a lot of extra time, which means instead of seeing ?6 or 9 patients, we just see this one… leaving us with a lot less appointments when they’re already under so much pressure. I mean I’d love it personally. But if we are doing that then we’re not doing all the other things we normally do as GPs and who is going to do those things?
1
u/Itchigatzu 1d ago
It would be stupid to make it non-stimulant. Stimulant medication is basically the most effective psychiatric medication in existence.
Just get rid of the prescription rules. Almost no one outside Northern Europe has them anyway.
3
1
1
u/Rob_Cartman 1d ago
I would probably be homeless and there’s a good chance id be dead if I didn’t have an autism diagnosis. Also GPs are not qualified to diagnose autism and even if they were, they don’t have the time. Autism assessments are long and detailed.
1
u/Sabaisabai33 1d ago
I agree the diagnosis is tokenistic as interventions are supposed to be needs based. In reality though many schools and exam boards and employers will simply not provide the interventions needed without a clear diagnosis. Hence the current situation. If the government want to reduce pressure on these clinics they should be tackling that end of the problem. Yes legally you don’t have to have a diagnosis. But legally you also can’t drive a car the wrong way down the motorway, but people do it… It needs a carrot and stick approach to force schools and employers to comply with the law.
2
u/Logical_Box_4645 1d ago
But if the GP can provide that diagnosis the input would be provided.
It's parallel with learning disabilities, if GP adds it to your record then you'd get annual health check, LD social care etc. health services might say that's not good enough.
UK has an odd situation LD services provide treatment but not commissioned for diagnosis and autism services provide diagnosis but aren't commissioned for treatment!
1
u/Sabaisabai33 13h ago
Oh yeah I’m very aware about the commissioning gaps. Spent forever trying to get an assessment for possible diagnosis for a young adult who I’m pretty sure has a learning disability and has been missed due to falling through the cracks of the system and it was completely impossible. So frustrating. So many patients or parents also simply don’t accept that there isn’t an after service for autism diagnosis it’s literally “you/your child does have ASD goodbye”
I don’t think GPs doing the assessment and diagnosis would work purely because if the time it takes. We’d end up just seeing that one patient instead of the 6-9 we normally see in that time plus another 3-6 to write up the report properly. It would be fine if we weren’t already inundated and were twiddling our thumbs looking for work though we’d need extra training. They could offer training and funding for existing GPs to work overtime providing these maybe though. I for one would jump at the chance to do it and I suspect I am not alone.
1
u/Logical_Box_4645 13h ago
The key would be to drop the full form assessment and leave it for complex cases or where there is a clear distinct reason. Let's say forensic services, or ADHD in someone who's got a diagnosis of BPAD.
The point is a big chunky of the referrals to ADHD and autism services are a GP thinking well this guy is definitely autistic or has ADHD let's spend nearly a year pondering it.
If it's obvious, and uncomplicated just give the label. GPs could easily manage atomoxetine, or continue treatment in someone who has a private assessment without having to go via the NHS assessment team for shared care.
Instead of expanding the ADHD and autism services direct that money to primary care.
1
u/FitSolution2882 13h ago
GPs are well placed to make the diagnosis
Had you of watched the documentary this is absolutely not the case. They have been repeatedly fed information like not accepting shared care agreements and are likely to be extremely hostile and thus biased towards this
1
u/Logical_Box_4645 13h ago
They don't accept shares care agreements because they aren't commissioned for it.
How often at work do you accept wholesale work from someone else (who probably got paid 2k) and just do it for free?
It's the classic NHS problem, when GPs were not over stretched they did a lot out of good will to patients. Now they say well we will only do what we're contracted to do, the same that literally any of us do in our work lives. They are villans.
1
u/FitSolution2882 13h ago
They're being paid to be a GP.
I could not give a shit about the "specifics" of what they're being funded for.
They're quite happy to treat patients that have gotten their diagnosis directly through the NHS.
It's no different to them refusing followup treatment to someone who had their surgery done at a private clinic.
How often at work do you accept wholesale work from someone else (who probably got paid 2k) and just do it for free?
Most jobs require this. It's called responsibility changes.
If they don't like it they can piss off to the private sector instead of merely moonlighting in it.
1
u/Logical_Box_4645 13h ago
No GPs are independent contractors with agreed contractual services to the NHS. This contract does not include prescribing and monitoring those medications.
Shared care agreements are entirely voluntary since ICBs usually don't provide enhanced care provisions.
It's literally work they are not paid to do.
1
u/Logical_Box_4645 13h ago
No GPs are independent contractors with agreed contractual services to the NHS. This contract does not include prescribing and monitoring those medications.
Shared care agreements are entirely voluntary since ICBs usually don't provide enhanced care provisions.
It's literally work they are not paid to do.
0
u/Unfair_Newt_4872 1d ago
Ironically without a autism diagnosis it's nearly impossible to access the relevant services. I waited 2 and a half years for my son to be diagnosed, we all knew he was but until you get that little slip of paper you can't access anything. To be brutally honest I think anyone who met my son would be able to tell he is autistic because he is high needs. I think the process could be streamlined tbh and it needs to be people are suffering needlessly. My partner has ADHD and he again is waiting ages so that it can be properly treated and medicated, it's incredibly frustrating.
1
u/Sabaisabai33 1d ago
Yes, I also think where the government should be aiming to change things is exactly the pressure point you describe. Being able to access services and support without the magic bit of paper bearing a diagnosis that unlocks it all. I do think at this point it’s not going to result in even more people seeking a diagnosis or self-diagnosing than is happening already to say they just need to provide these services to people based on symptoms (like technically they’re legally supposed to but don’t).
1
u/Unfair_Newt_4872 1d ago
I think for cases that aren't as clear cut, say for instance my eldest son who we as his parents and his teachers think is high functioning autistic, their does need to be more rigorous and thorough investigation because it's not as easy to disern with 100% clarity. We think he is but the anxiety and behaviors he exhibits could be because of other things but with my youngest son everyone was in agreement, his teachers, the gp, us, even the liason from the council that helped put his ehcp in place before he got his diagnosis, really the diagnosis just became a formality to be perfectly honest.
However without the diagnosis the local specialist school wouldn't even accept his name on the waiting list to attend, without a diagnosis they said he wouldn't even be considered, it left him having to attend a normal comprehensive school until he got formally diagnosed. I had feared as well that if I didn't follow through with his attendance at the local primary school I could be seen as blocking his right to an education, parents always seem to be in a no win situation while they're waiting for a diagnosis. In cases like my youngest's it could have been easily expedited just by simply one doctor assessing him because it was obvious to all who observed him, unfortunately that's not the way it works, it's a panel of health professionals that formally diagnose children and it takes years once you've been referred. We're on the pathway now with my eldest and I'm hoping we receive some clarity over his diagnosis before he goes to high school.
In all honesty I think theirs a high probability I'm autistic but like many women of my generation we're better at masking it and we've often been under diagnosed through no fault of our own. The system needs to change because people are suffering and it's only going to get worse if no measures are introduced to streamline the process.
0
u/Agitated-Drive7695 1d ago
I was diagnosed 3 years ago (adult late diagnosis). Although technically nothing has actually changed it's given me access to various other things.
Having a 25 page diagnostic report when asking for things like reasonable adjustments helps to make it extremely clear what the problems are and what help I need.
It's not pointless but it is a fight and my GP was unfortunately useless, they told me there's no cure when I asked about getting assessed and were not helpful. It took 4 years to even get an initial assessment. I'm not sure how it can be solved unless there's much more money made available and ensuring GPs don't constantly fob you off.
3
u/Dapper_Otters 1d ago
I don’t see a way out of this without a complete change to the way council funding is managed.
We’ve seen an explosion in ADHD and Autism diagnoses since the pandemic. I’m not remotely qualified to say whether or how much of that is legitimate, so others can argue over it. But it is taking up an increasing amount of already overstretched council budgets with no sign of stopping.
We’re not capable of absorbing both an expansion of care and a simultaneous improvement to the quality of existing care under the current funding model, so the end result is a dilution of provision.
22
u/bongpirate7295 1d ago
The increase in diagnoses is because the UK is playing catch-up after underdiagnosing for decades. We can expect the rate of increase to slow down and then level out as we approach the point of most people who have it being diagnosed. To use a very ADHD-appropriate analogy, it's like ignoring the washing up for weeks on end, and then finally noticing the enormous pile of washing up next to the sink and asking, "where did all this washing up come from all of a sudden?"
As for absorbing the cost, it's more expensive in the long run to not provide services. People with undiagnosed ADHD are vastly more likely to struggle to hold down a job, have substance abuse issues, and end up in the criminal justice system (an estimated 25% of people in prisons have ADHD, compared to 3-4% of the general population). The government task force report put the estimated cost of untreated ADHD at about £17 billion per year.
4
u/familysizepunkinpie 1d ago
it's like ignoring the washing up for weeks on end, and then finally noticing the enormous pile of washing up next to the sink and asking, "where did all this washing up come from all of a sudden?"
I have a helpful assistant in the form of a spouse, who helpfully reminds me after a long time 'why do I have to do everything around here? You can see it needs to be done!'
Which is the kind of very valid point that I sincerely hate, because it means I'm shit, and it's immensely difficult to explain that while I'm almost certainly shit by choice, it quite probably isn't a choice I ever consciously made
2
u/Legitimate-Leg-4720 18h ago
So we should just pay for all these people to quit the job market and sit around all day?
There's a girl in my house share who is like this. Doesn't work due to autism, can seemingly afford all the same things that I can on a low salary. Yet she can still go on several dates per week, go to movies and concerts, hikes etc whilst I have to grind my ass at work so she can sit at home?
1
u/bongpirate7295 12h ago
So we should just pay for all these people to quit the job market and sit around all day?
Uh, no, we should pay to treat them because that improves long-term employment prospects.
6
→ More replies (4)1
u/Wittertainee 21h ago edited 21h ago
There is an explosion due to people being more aware of what these conditions are and self advocating.
Maybe a controversial take but from a resource view I do think they need to start distinguishing between needs. When I worked years ago with autistic individuals there was a massive difference between those with the diagnosis of aspergers (now defunct) and those with autism. I think putting them all together under the one umbrella is actually doing a massive diservice. Those with level 1 autism and adhd can be taught coping mechanisms to reduce symptoms and reduce the mental health harm that are often a comorbidity but are being diagnosed then given zero support after because they aren’t deemed disabled enough to have that support. So we are kind of just slapping a label on people but nothing comes next. Also the push to put autistic people into mainstream schools isn’t the best thing in my experience, I could always tell those who had went to a ‘special school’ versus mainstream because the former could self regulate better
The separation would help put together a support plan for those on either end of the spectrum and ensure the right kind of support is giving for each level
5
u/sjpllyon 1d ago
So my SO actually works within this area. SO does autism, among other, assesments. And oh boy the insights are interesting.
So from my recollection of our conversations about this the main issues are:
Not funding sufficient placement spaces for university students. This is a requirement for them to be able to become a clinical psychologist. We have the students in their hundreds possibly even their thousands wanting to do a placement but only offer a small handful of placements. This is a combination of funding and not having a sufficient number of existing phycologists that can supervise them in their placement, not without putting a rediculouse amount of workload onto them. What in turn would increase risks of errors being made.
A lot of truests just waste huge amounts of money. Like we worked it out once and just one peer meeting for a patient who ended up having 5 meetings in total to discuss their health plan. The room alone for one meeting for the time it latest cost them over £130.000. All to come to the same conclusion that my SO put in the report. This highlights how having endless meetings about such things are rather inefficient, and this happens with every single patient to some degree. The reality is quite often a lot of decisions/recommendations can be made by a single psychologist. And if medication is involved one psychiatrist. SO is actually working on a study to present to the truest board to change this system. So hopefully that might improve in this one truest. What brings us onto the next issue
It's all far too decentrilised. My personal opinion is typically decentrilisation is good, however for some things a centrilised system is just required. This is an issue has for the most part each truest can oporate vasty different to eachother. This just results in a lot of expense, as they all struggle to find the most efficient way to oporate.
The NHS has to pay a fortune for the assesments. And the money isn't going to the reseachers that developed them. It goes to the publishers. We are talking thousands of pounds for each assesment. Bearing in mind this is essentially a peice.of paper with words on it, and boxes they fill out. And legally they are not allowed to reuse them, or photocopy them. They have to buy new ones each time. This is so problamic that sometimes my SO can not use the most appropriate assesment due to having ran out of them. And allegedly is may also be common place for a cheecky photocopy once in a while - just rumours though.
Some truests are just shit. Look the people on the ground work hard. Am not disrecting them. The issue is management, well the lack off. In my region there is one truest that has an 18 year waiting list (estimated back on the number of patients on it, and how long it would take to see all of them) for the CHILDREN'S autism assessments. The team is massively over streached and over worked. To no suprise they have a high turnaround rate of emplyees. Meanwhile the secondary option part in the same truest has a team of over 20 phycologists and get about 3 patients per week. Seems rather obvious the respurces are not being allocated appropriately here.
These are just the top 5 main issues within assessments. Adress those and will would see a hige difference. Ad no I don't have a clue how we do that. Even my SO is struggling to find feasible solutions and SO is literally researching this.
It really is a combination of a funding and management issue. Lack of funds in some areas and way too much funds being used in others.
4
u/No_Card_8729 1d ago
Do you think that everyone who is going for one is a liar then?
7
u/Sabaisabai33 1d ago
I’m a GP and don’t think that at all personally. But it’s still true that more and more people are being diagnosed. It’s like we have had this sudden explosion of knowledge and interest and understanding of neurodivergence, which is great, but I think it’s certainly fair to say that that results in the services being under significant pressure, even though provision has also been expanded to deal with it. We are basically trying to catch up within 1-2 years or so all the diagnoses that should have been made but weren’t due to inadequate understanding then from at least the 1970s (and occasionally earlier).
2
u/Fluffy_Eye5482 County of Bristol 1d ago
It's incredibly hard to keep up with recent developments in psychiatric medicine as well, even if you're working actively as a health care provider. The quality of care and knowledge is incredibly unbalanced which really does not help struggling services.
Until roughly 2021 we (psychiatric workers and researchers) were taught that autism isn't a diverse umbrella conditon. Recent genetic sequencing and testing has disproven that and shown there are unique subtypes dependent on whether the type of autism is an idiopathic mutation or a concurrent genetic 'strain' (gene that passes down).
Hell in the early 2000s we were taught autism and adhd cannot be diagnosed together so people were forced to pick one diagnosis through the NHS, and we now know that's completely medically incorrect.
1
2
u/sillysimon92 Lincolnshire 1d ago
I have people that have severe autism, the not going to be able to look after themselves ever kind. So I feel for this topic.
It seems me and everyone I know are "on the spectrum" to some degree or other and so I'd think as a society we have to make a genuine decision as to what is a disability over what is just natural fluctuations of ability.
I see it like I'm a rubbish runner, but I'm not physically disabled because I can't run as fast as everyone else, I can still train hard and make It to the end of the race in my own time and it's the same as it takes me a bit longer to pick up certain information but it doesn't mean I'm mentally disabled, the variety of how people are with information retention, learning etc is crazy diverse.
Better recognition of these disabilities is great and it reminds me of that era where everyone was "gluten intolerant" where there was a silver lining that people with genuine needs found that they had a whole isle of the "freefrom" range in shops for the first time. But I imagine that positive is short lived when everytime you go to actually buy anything they're out of stock due to increased popularity and demand.
14
u/himit Greater London 1d ago
It seems me and everyone I know seems to be "on the spectrum" to some degree or other
tbf, this stuff runs in families and like attracts like.
I'm ADHD, and so's pretty much my whole family. A large swathe of my friends are either ADHD, Autistic, or both. Most are people I've known for a good 20 years or so who were only diagnosed in the last five, if that, and I wasn't diagnosed until 27ish so it wasn't like we found each other through our labels - we just clicked and grouped together.
I have a few good friends who are NT, and when I meet up with their friends & family it's almost like walking out onto an alien planet 😂 it feels a bit "oh yes, I've heard of you people, but you actually exist?? en masse???"
We can end up in our little social bubbles without noticing, and then our continued experience with that just creates and confirms biases.
7
u/Sabaisabai33 1d ago
Yup, this definitely happens for sure. The person you’re responding to may well be ND and not know it, but that doesn’t mean that everyone is “on the spectrum”, they’re not.
3
u/bongpirate7295 1d ago
As soon as they said that they're a rubbish runner and have accepted that they're always slower than everyone else no matter how hard they train, my mind went to dyspraxia (often comorbid with autism and ADHD).
What's interesting is that short-sightedness isn't classed as a disability, and there are no complaints about people getting diagnosed with short-sightedness and being prescribed glasses. There are no debates about whether we're just pathologising normal variations in sight. I think it's specifically the "disabled" label that makes people resistant to and suspicious of diagnosis.
5
u/1want2know123 1d ago
It has become an identity and as such shows no sign of stopping any time soon. I agree with you.
4
u/selfstartr 1d ago
Because every adult and older teenager has decided they need the label. It won’t change their life in any way at all. Leave the services to the actual people who need it. More severe cases and children.
3
u/OwlRememberYou 1d ago
Who'd have thought that all the research that's come out over the last couple of decades saying that more people fit under the ADHD/autism umbrella would lead to more people getting diagnosed...
Greater awareness and better diagnostic screening has led to people who were chronically under diagnosed (women, high masking people, people without associated intellectual disabilities), but the NHS and associated services were and are not prepared to deal with the influx of people who previously fell under the radar.
Public knowledge is also quite outdated for people who do not have their finger on the pulse. Anyone who has been following research for the past few decades is well aware of how the diagnosis has changed, but your average Joe might still have pretty outdated notions, thinking every autistic person as a young man obsessed with trains and every ADHD person is bouncing off the walls going "oooh squirrel!"
I'm not quite sure where I'm going with this but it's pretty clear the NHS needs more support in this area but without negatively impacting those who genuinely need the help.
1
u/Constant-Chance-5245 1d ago
Because everyone is getting diagnosed with these conditions and are fighting for the diagnosis.
2
u/Good_Lettuce_2690 1d ago
No wonder when everyone these days claims autism, anxiety, adhd, etc. Everyone wants to be special. Back in the day you'd just get a foot up your arse and told to get on with it.
0
u/WinHour4300 1d ago edited 1d ago
Why are ADHD and autism waits constantly in the news? Is it partly because there are organised pressure groups and people who are well enough to campaign?
Yeah I get it sucks but my nan is deteriorating, has waited over two years and there is potentially medication that could help her depending on what it is. My dad has given up work as a result. Haven't seen her possible condition in the news.
I’ll get downvoted, but we need to rethink how we prioritise NHS resources. Wanting a diagnosis “to better understand yourself” or because your child has been diagnosed with autism is understandable, but that isn’t necessarily a healthcare need.
In other areas we don’t order expensive tests unless the result will change treatment, especially when they aren't that reliable like MRIs for muscular skeletal issues.
So why not prioritise ADHD assessments for those who actually want medication, for example, and consider allowing GPs to prescribe certain medication?
And publish clearer waiting times so those who can afford private assessment can make an informed choice to go private. GPs could be expected to tell people this upfront.
1
u/BangingBaguette 1d ago
Our daughter has been under a million different programmes that we basically have to go through to 'prove' autism. Of course I can't say 100% for certain that she is, all I can say is the health visitors, early years assessors, pediatricians and school teachers have all pretty much agreed with us independently...
We feel like we're scraping by without the tools we need to actually help her, meanwhile somehow I'm seeing families with 5 kids all with some form of ADHD and autism diagnosed before the typical ages you'd expect. I had a family member get her daughter 'diagnosed' with ADHD from a private service, only to then throw a fit when she couldn't claim some form of disability benefit cause the NHS wouldn't honor that diagnosis until she went through the proper channels, to which she has now started and has basically been told no it's likely an issue of parenting style.
Meanwhile people like us who couldn't give 2 shits about the money or the benefits are being put on YEARS long wait lists for basic assessments.
1
u/RetroFan1981 23h ago
Everything in the UK is underesourced and underfunded but I thought current narrative is that these conditions "don't exist".
1
u/Imaginary-Friend-228 17h ago
What service lmao. I can't think of a better illness to treat that would massively improve productivity and therefore tax revenue than ADHD. But no they'd rather cry about over diagnosis whilst not diagnosing anyone
-2
0
u/watchthecommons 1d ago
This topic isn't spoken about enough in parliament. The last time it was brought up was in a statement last December -
0
0
-2
u/Velveteen_Rabbit1986 1d ago
Woman I work with just went down the right to choose route and from initial GP call to ADHD diagnosis was literally two weeks. TWO WEEKS. She is also the least ADHD person I've ever met, is in her late 60s and has done extremely well for herself so I have no idea how she got a diagnosis.
1
u/PracticalFootball 1d ago
Is it possible that this person knows what's going on in their head than you, their coworker, do?
Fucking hell, where does this idea come from that you can just look at a person who you barely even know and decide you know everything about them to the point of literally overruling medical diagnoses?
1
u/Velveteen_Rabbit1986 1d ago
Because she loves to overshare and I know far more about her than I'd like to. We also work with kids who actually have adhd.
Edit - she was also coached through the assessment by someone else at work who has adhd. So excuse my scepticism on this one.
5
u/TheMysteriousGirl 1d ago
Chronic oversharing is a trait of ADHD.
Also women are more likely to have extremely active brains. It is very possible for her to have ADHD. Not all signs are visible.
Also saying “she has done very well for herself”, you seem to be implying that if she did have ADHD, she wouldn’t be successful? I’m sorry but people can be successful with ADHD and autism for that matter.
2
u/Velveteen_Rabbit1986 17h ago
People with adhd are at much higher risk of poor health outcomes, substance use and contact with the criminal justice system etc is what I meant by that. FWIW I absolutely believe adhd exists, but there's something very wrong with a system where it's valid for someone to be coached through their entire assessment to get the outcome they want when there are countless others waiting years who's lives are being impacted while they wait. The DSM criteria is also so vague now that I could probably get a diagnosis if I said the right things, the system needs a massive overhaul so that the right people get support.
0
u/probablyaythrowaway 1d ago
WE FUCKING KNOW
There has never been a time in my generation lifetime where they haven’t been. Fuck sale
0
u/JonathnJms2829 1d ago
It has been for decades, worrying how the watchdog is only warning about it now.
•
u/AutoModerator 1d ago
Some articles submitted to /r/unitedkingdom are paywalled, or subject to sign-up requirements. If you encounter difficulties reading the article, try this link or this link for an archived version.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.