Author Topic: Perception of ADHD / those with ADHD?  (Read 2164 times)

Perception of ADHD / those with ADHD?
« on: 16 October, 2022, 09:54:02 pm »
Just wondering what perception do you people have of ADHD and AFHD sufferers?

There's much more acceptance / understanding of mental health issues such as anxiety and depression these days,  but is that acceptance and understanding there for disorders like ADHD, ASD, etc?

I'm asking because I got a possibly incorrect impression from the low Adderal stocks in USA thread that there's less than positive undertones towards adhd sufferers and their treatment requirements.

Wowbagger

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Re: Perception of ADHD / those with ADHD?
« Reply #1 on: 16 October, 2022, 10:05:15 pm »
My older daughter is of the opinion that ADHD is the label given to many kids who actually have auditory processing disorder. Her son has APD and she has taken a strong professional interest in his treatment. She has carried out a few experiments with willing sixth form ADHD sufferers (she's pretty senior in a school in Kent) and given the treatment (basically, a set of headphones) which would be given to APD kids, and found that the ADHD kids immediately have no problem with their concentration/attention to the task in hand. Her inference is that it's a background noise problem rather than a concentration problem in an awful lot of cases, and that some kids are put on ritalin for no good reason.
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Re: Perception of ADHD / those with ADHD?
« Reply #2 on: 16 October, 2022, 10:23:59 pm »
When you say headphones,  do you mean ppe style or music headphones?  If she's playing music to them then inadvertently she could be giving the ADHD kids a form of self prescribing that's common with sufferers. It's partly stimulation music provides. Instead of distracting sufferers music aids concentration. Especially high energy music.  You will find a lot of punk fans among the ADHD community I reckon!

Then if she's using ppe style noise reduction without music then the truth could be that the  kids with an ADHD diagnosis she's experimenting with might also have APD. APD is commonly found with ADHD such that an ADHD diagnosis often results in checks fir APD. High levels of comorbidity. Treating for APD and getting improvements only indicate APD is a factor not the only condition.

Re: Perception of ADHD / those with ADHD?
« Reply #3 on: 16 October, 2022, 10:31:36 pm »
Oh BTW ADHD and APD do have similarities but more than enough differences for a diagnosis for ADHD to be certain. The diagnosis for ADHD has been very well defined for decades. It's not a subjective thing any more. It's why I started this thread, it seems that even the most aware have a perception that there's doubt with ADHD.

felstedrider

Re: Perception of ADHD / those with ADHD?
« Reply #4 on: 17 October, 2022, 07:54:58 am »
Redacted - C-3PO

My son was diagnosed with AD(H)D some years ago.   It started out with the school claiming Dyslexia but I think that was a bit lazy.   We tried a range of solutions but ended up with a mix of medication and some flexibility around exams (extra time allowance and allowing some tests to be done at a keyboard).   The last school were pretty good after some pressure and the latest school have been excellent.   He's been at independent schools with small classes since he started and I think his symptoms were mild enough that it may have been missed elsewhere or in bigger classes.   We still had to get an independent assessment and advice.   

This has been a learning process but I have become way more aware of the spectrum and where people might sit, but also to notice things about myself.   I have seen other kids in his peer group displaying obvious symptoms with parents in complete denial thinking it's a phase that will be grown out of.   I have also looked at the people around me in work and seen some obvious traits amongst them.

I think the understanding of all these conditions is so much better.   When I was at school 30+ years ago there were think kids and bright kids and where you sat in that range defined your future.   I have often thought the schooling system ignores the average but that's an aside.

The world has come on so much that some employers are actively recruiting for people on the spectrum particularly in coding and analytics functions.   The advisor we worked with said she had people trying desperately to get a diagnosis in order to get a job and she had to resist quite a lot of pressure in cases she considered to be borderline.

felstedrider

Re: Perception of ADHD / those with ADHD?
« Reply #5 on: 17 October, 2022, 07:58:30 am »
Redacted - C-3PO

Re: Perception of ADHD / those with ADHD?
« Reply #6 on: 17 October, 2022, 08:07:57 am »
I'm asking because I got a possibly incorrect impression from the low Adderal stocks in USA thread that there's less than positive undertones towards adhd sufferers and their treatment requirements.

That certainly wasn't my intention. Apologies if it has resulted in offence. I found the report remarkable as it is not a drug that seems to be prescribed much here, my interpretation of the report is that it must be prescribed significantly more often in the US, and that struck me as interesting, assuming that ADHD is as prevalent here as it is in the US.

I don't have negative attitude towards ADHD. I have often wondered if I have it, have pondered the possibility of being investigated for it, but didn't begin the process as I suspect I would get absolutely nowhere as I'm in my mid-50s.

Wowbagger

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Re: Perception of ADHD / those with ADHD?
« Reply #7 on: 17 October, 2022, 08:25:10 am »
When you say headphones,  do you mean ppe style or music headphones?  If she's playing music to them then inadvertently she could be giving the ADHD kids a form of self prescribing that's common with sufferers. It's partly stimulation music provides. Instead of distracting sufferers music aids concentration. Especially high energy music.  You will find a lot of punk fans among the ADHD community I reckon!

Then if she's using ppe style noise reduction without music then the truth could be that the  kids with an ADHD diagnosis she's experimenting with might also have APD. APD is commonly found with ADHD such that an ADHD diagnosis often results in checks fir APD. High levels of comorbidity. Treating for APD and getting improvements only indicate APD is a factor not the only condition.

Sorry, I don't know the details. I think she said that our grandson uses bone-conducting headphones when in school.
Quote from: Dez
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Re: Perception of ADHD / those with ADHD?
« Reply #8 on: 17 October, 2022, 08:30:26 am »
I don't have negative attitude towards ADHD. I have often wondered if I have it, have pondered the possibility of being investigated for it, but didn't begin the process as I suspect I would get absolutely nowhere as I'm in my mid-50s.

A friend of a similar age recently sought out a diagnosis and has described now knowing they have ADHD as 'life changing' after years of not being understood. I gather that's both in terms of understanding from other people, but also now they can look at particular behaviours and past events and understand why things are/were that way. All the emotional rollercoaster you would expect from a later-in-life diagnosis, but my sense is that they're in a better place with it all as a result. They say the meds help a lot, to the point where it was worth it to pay a significant amount each month before a private diagnosis was converted into NHS treatment.

I think diagnosis/management was via ADHD 360 initially (but I don't know if that's a recommendation!).

Re: Perception of ADHD / those with ADHD?
« Reply #9 on: 17 October, 2022, 09:23:27 am »
My perception is mostly shaped by a child I helped with at a local gym club.

I was just an assistant; helped with herding kids and some helping them with movements.

Was asked to shepherd one boy; told he had ADD and I needed to stay next to him. Keeping a hand on his shoulder would help him remain 'present'.

He was a really willing lad, but he didn't remember something said to him 5s ago. Needed constant reminder, it was almost like being with someone who had chronic short term memory loss from a TBI.  He could remember something we'd done the previous week. Just not anything 'in the moment'.

Startlingly, he couldn't move backwards (I later did some training over years where 'behind you' is related to perception of the past). Ask him to step backwards and he stepped forwards. Push him backwards, or make him fall backwards and you really traumatised him. Utter terror in his eyes.  We worked on overcoming this; if I put a hand between his shoulder blades, pressed and told him to push against my hand, he could do that. We worked from there to leaning backwards, stepping backwards, then a really big move, rolling backwards. Took weeks.

I do wonder how much ADD is to do with complex issues such as memory.
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ian

Re: Perception of ADHD / those with ADHD?
« Reply #10 on: 17 October, 2022, 01:59:08 pm »
I'm asking because I got a possibly incorrect impression from the low Adderal stocks in USA thread that there's less than positive undertones towards adhd sufferers and their treatment requirements.

That certainly wasn't my intention. Apologies if it has resulted in offence. I found the report remarkable as it is not a drug that seems to be prescribed much here, my interpretation of the report is that it must be prescribed significantly more often in the US, and that struck me as interesting, assuming that ADHD is as prevalent here as it is in the US.

I don't have negative attitude towards ADHD. I have often wondered if I have it, have pondered the possibility of being investigated for it, but didn't begin the process as I suspect I would get absolutely nowhere as I'm in my mid-50s.

It's not a negative attitude, very obviously, a small proportion of children (and adults) do have significant issues. It's the scope of the modern diagnosis – in the US currently 14% of adolescents now have this diagnosis and it rises year-on-year. It's heavily marketed as a diagnosis, of course, and pushed heavily by the pharmaceutical companies though advocacy*. Schools like it (gets them more funding), parents like it (explains their kids and makes life easier), pharma companies like (sells more drugs), doctors like it (pays their salary), healthcare insurers like it (justifies higher premiums), etc.

It's not the only diagnosis either, large numbers of children are now being pathologically defined as anxious, depressed, autistic etc. and medicated. Many of these pharmaceutical interventions aren't tested, they're often ported from adult uses (and even there they have weak evidence bases) or used off-label. It's now well established that SSRI antidepressants don't work in childhood depression (and for the majority of adults) but they're still prescribed widely. What happens in US healthcare spreads to the rest of the developed world. It's also worrying that no one knows how these drugs will affect developing brains and bodies.

There is value in recognising that development challenges that a small proportion of children face so they can be supported, but once we start to define such large proportions, then the result is that the kids who really need the help, don't get it because those resources have been diluted.

*advocacy is how pharma companies drive their markets, started a meaningful engagement of patients, but now is basically a mechanism for getting patients, parents and the like, to demand a drug is licensed or made available, or prescribed more widely. It's extremely effective marketing since the drug companies aren't doing it. Of course, this a good way to drive diagnoses upwards, even to the point of circulating lists of sympathetic doctors.

FifeingEejit

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Re: Perception of ADHD / those with ADHD?
« Reply #11 on: 17 October, 2022, 02:25:17 pm »
When it comes to "healthcare" the USA is a special case.
One of only 2 places in the world pharmaceutical companies can advertise directly to the public.
(the other is NZ whihh is a bit odd as otherwise its controlled like here)

It's a country where opiates are pushed to solve well everything.
Why sort the problem when you can medicate it for ~70 years of much profit?


Here the pharmaceutical companies are allowed to market direct to healthcare providers, I had a nice selection of postit style notes advertising various brand of insulin.
Which may or may not influence whether therapy or medicating is decided as the medics favourite route with patients.

But then never confuse medical and social attitudes.
Its seems to be the usual people who grew up when these things weren't well known maintain the stigmas, people who grew up after that point are usually much more aware except for the odd twatt.


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ian

Re: Perception of ADHD / those with ADHD?
« Reply #12 on: 17 October, 2022, 02:57:25 pm »
Unfortunately, the US healthcare system isn't a special case, since it drives healthcare development – both drugs and techniques. There are vast sums of money splashing around. It's also still where the majority share of the world's medical research comes from. Developing a drug that won't get licensed in the US isn't a good business plan (even markets the size of China are far, far less lucrative). The US is, by far, the most medicated country on the planet. There are proportionally more 'sick people' in the developed world today than at any point in history, and that includes during the Black Death.

Patient advocacy is how drug companies get around direct marketing (and it's more effective). Get patients and their families to do the hard work. None of the effort of convincing doctors (and there are now strict limits to that). Set up a patient education group, provide resources for existing patient groups, etc. Get them to pester doctors and their political representatives.

Re: Perception of ADHD / those with ADHD?
« Reply #13 on: 17 October, 2022, 05:29:02 pm »
I'm asking because I got a possibly incorrect impression from the low Adderal stocks in USA thread that there's less than positive undertones towards adhd sufferers and their treatment requirements.

That certainly wasn't my intention. Apologies if it has resulted in offence. I found the report remarkable as it is not a drug that seems to be prescribed much here, my interpretation of the report is that it must be prescribed significantly more often in the US, and that struck me as interesting, assuming that ADHD is as prevalent here as it is in the US.

I don't have negative attitude towards ADHD. I have often wondered if I have it, have pondered the possibility of being investigated for it, but didn't begin the process as I suspect I would get absolutely nowhere as I'm in my mid-50s.
I think I got a negative vibe from another person but it could just be me misunderstanding them. Not you.

Go to your gp as NICE guidelines have come out a few years back that each commissioning group should provide adult diagnosis services you'll find a few in each county now. If in doubt see your gp bit go with your reasons why. They must show traits that are debilitating to some degree with an affect on your life. Also they existed in childhood. Be prepared with that because your goal isn't to get your gp thinking you have it got the expert diagnosing it or ruling it out.

Plus you could have something else including thyroid condition which could be more serious in terms of health.

Re: Perception of ADHD / those with ADHD?
« Reply #14 on: 17 October, 2022, 05:58:10 pm »
It's the scope of the modern diagnosis – in the US currently 14% of adolescents now have this diagnosis and it rises year-on-year. It's heavily marketed as a diagnosis, of course, and pushed heavily by the pharmaceutical companies though advocacy*. Schools like it (gets them more funding), parents like it (explains their kids and makes life easier), pharma companies like (sells more drugs), doctors like it (pays their salary), healthcare insurers like it (justifies higher premiums), etc.

That isn't how it works in schools. There is no extra funding attached to a diagnosis of ADHD.

There is extra funding attached to an EHCP, but good luck getting one of those for the vast bulk of ADHD cases in mainstream schools.

ian

Re: Perception of ADHD / those with ADHD?
« Reply #15 on: 17 October, 2022, 07:21:17 pm »
In the US, mostly, though it depends on school district, area, state etc. I almost expect British schools to be underfunded for some reason. If they weren't we wouldn't need Eton, now would we?

Beardy

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Re: Perception of ADHD / those with ADHD?
« Reply #16 on: 18 October, 2022, 06:23:24 pm »
This is an interesting thread to pop up just now, given that Dr Beardy ‘diagnosed’ me as an ADHD sufferer last week having been doing some research for a paper she’s considering.

Having discussed it at some length, it seems I tick 9 out of 10 of the ‘boxes’ that only required 3 or 4 for further investigations to be considered. I’m unlikely to take it any further though, given the lack of resources that the NHS has and that I never had a diagnosis as a child. Playing the ‘what if’ game is depressing, so I’m avoiding that. It is interesting though because as a diagnosis, it pretty much explains all my life difficulties outside my deafness, from underachieving at school (IQ of 139, left school with 1 O’level) though lack of motivation and people interaction difficulties.

We’re also looking at two of our children, especially the youngest who we really need to relaunch into life once again.
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Re: Perception of ADHD / those with ADHD?
« Reply #17 on: 18 October, 2022, 09:49:08 pm »
I'm considering trying for a diagnosis again since NICE issued guidelines that are very helpful for those needing an adult assessment. Last time my gp referred me to a telephone anxiety and depression service, took 40 minutes to get the person from the service to believe me when I said I am not depressed and suffer no more from anxiety than anyone else without anxiety issues.  Then it took another 5 minutes before she realised she had no idea who to refer me to fit an ADHD assessment.  She said she'd go off and look into it then call me back. Before she went she said it sounded like I really needed an ADHD assessment. Half hour later she said there's no place to refer me to in the whole country and she couldn't help me.

I gave up!

Now there's guidance saying every commissioning group should offer adult ADHD diagnosis and treatment  services. I live near a County border.  One side uses a county wide private,  telephone / remote psychiatric service run like a law chamber.  Other side has several options based on hospital psychiatric units to GP practises with extra expertise. I think I'll try again. I've been thinking that way for many months,  actually 18 months after reading about the NICE guidelines and finding a few services I could get to fairly easy. I think 18 months counts as procrastination,  don't you?!! 😂

Seriously though,  getting a diagnosis is still going to take effort and persistence from any adult trying for it. Whether that effort is worth it really depends on what you think a diagnosis might give you and if it's worth it. That's a deeply personal matter but I think looking into it is not a waste of time.

In my case I really struggle with the idea that it is really an issue for me if I have it. That playing down the issues is kind of part of  it. I'm just a bit strange or weird right? In my case I think i have an IQ of 140, certainly been tested and found in the top 1% of all uk graduates but no idea of my true IQ. I easily met the criteria for mensa (my intelligence meant I didn't waste any money on it after passing their tests T68 go in at higher level iirc). I have 9 GCSEs, 4 A levels and two degrees. I am in a job earning just over minimum wage. If they increase it Iwill be on it or get a pay increase to comply to m the change. I struggle with relationships and connections. I struggle / make mistakes doing the really easy stuff but give me something hard to work out I find it easy and enjoy it. I'll use algebra rather than googling an online calculator.

All this is only the start of it. Two online ADHD tests based on some test or duagnosis criteria I got 16 out of 18 and rated as being in critical need of assessment! I think that was a bit strong but I do agree with it being a need for me.  I'm nearly 50 and looking at getting a proper, challenging and better paying job that's more suited for my educational and intellectual capabilities. I just need the executive function to get there. I know it is preventing me moving on and up.  Financially I'm struggling. Personal pride in what I do is completely lacking. Confidence is shot! So I think I need to get to a diagnosis,  even if it's not adhd I know something is stopping me and this is the start of finding out.  Just need to ditch the trait that's stopping it.

This is why I started this thread about perception of ADHD. I've got a personal stake in this.

Re: Perception of ADHD / those with ADHD?
« Reply #18 on: 18 October, 2022, 09:53:54 pm »
PS learnt a relative has been diagnosed.  Was talking to av relative and find out about it. The one who told me immediately said that I could have it. They did not know I think I have nor did I let on.  Reason another family member I could not trust to put me down if I talked about my thoughts on this.

PPS don't tell anyone!  ;)

barakta

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Re: Perception of ADHD / those with ADHD?
« Reply #19 on: 19 October, 2022, 12:05:44 am »
I know the request for screenings and referrals went up by 10x in universities since 2019. I don't know where the line is. I think like other similar things - dyslexia, autism etc it's a neurodivergence and a minority norm which is increasingly difficult to manage in our modern high stress, sitting still at computers, got to be polished verbally at all times etc society...

My colleague who has training from a 'learning need' not 'mental health' angle on ADHD (which means 'not meds focused') is trained to screen students and is finding lots of people cropping up. She thinks 2020 pandemic blocked a lot of people's coping strategies and that they were often masking at great personal cost with trashed physical and mental health as well as money and relationship issues.

I know several people who have personally received diagnoses, some who have found meds helpful, others who have focused purely on strategies. There is a considerable overlap with autism AuDHD as some folk call it. I have certainly seen people do research on things like rejection sensitive dysphoria, body doubling strategies and so on.

I think attitudes vary from acceptance and self-understanding or clue through to people who will claim everyone has it now and it's "just big pharma".

Re: Perception of ADHD / those with ADHD?
« Reply #20 on: 19 October, 2022, 01:38:33 pm »
It is very easy to write a policy saying "All adults should have access to a screening service for . . ."

It is much harder to get governments to agree to fund the resources needed to fulfil the policy.
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Re: Perception of ADHD / those with ADHD?
« Reply #21 on: 19 October, 2022, 03:11:32 pm »
Not sure about medically speaking, but certainly in terms of social perception I'd say ADHD/autism spectrum disorders are not only accepted but spoken of with a lot of empathy and positivity. The term "neurodivergent" is becoming a shorthand for this, which annoys me somewhat as a neurodivergent person who is neither. But I don't know anyone with a negative attitude towards ADHD or those on the autism spectrum.

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Re: Perception of ADHD / those with ADHD?
« Reply #22 on: 19 October, 2022, 04:48:29 pm »
I disagree about autism and ADHD. They are still considered negatively. I'd say there's still a significant proportion of the population who see it as made up. Even the idea of over prescribing for it sounds very much like code for it's not real to me. Over prescribing is an American issue for sure but the immediate way of discussing it for ADHD is that doctors are giving it to people who don't have it. You'd never get a person receiving depression medication to just pull themselves together because the prescribing rate is at its highest for a few years.

Even if they are prescribing for borderline cases or cases where the disorder doesn't have such a negative effect there could still be benefit.

However we're not in the same environment. Over here treatment seems to be more selective according to needs. Medication and talking therapies applied as necessary. Drugs have a specific action and if that action is needed then who cares if that means a big jump in drug use of it's safe.

As to resources, that's as always a case of putting one condition against another. Why is x worthy of near adequate funding but y isn't? Whatever the case adult ADHD seems to be getting more funding. Once there were a couple of private services  in London and a rumour of one in Scotland which turned out not to exist anymore as the guy retired or went overseas. Now there's 3 I think in Manchester alone, 3 in Lancashire and Cumbria has a remote service over the Internet with a private psychiatric service. There's been a big change over last few years and the NICE guidance that came out was the catalyst.

"Where the line is?" - The line is drawn in various psychiatry publications from DSM - V I think that's now out through WHO publications.  There's a well developed and sophisticated set of diagnosis tools.  This isn't guesswork or finger in the air diagnosis. The very use of the word statistics in the DSM title should give the clue to this.  Of course people still take the bad use of statistics often by politicians as an excuse to see it as bad science. So I doubt that'll convince many.

ian

Re: Perception of ADHD / those with ADHD?
« Reply #23 on: 19 October, 2022, 08:38:23 pm »
There are huge battles over the DSM about just how sophisticated those diagnostic tools are and the fact that psychiatry still struggles to achieve the evidential basis that the rest of medicine is expected to achieve (even if it too, often, fails in practice). Not many would argue that homosexuality is a mental disorder these days, but it was once. Other elements have been widely discredited (the movie industry still salutes them for multiple personality disorder though). It's shifting and subjective, and in many parts, defined by western cultural expectations (and hence, overbearingly American).

Medicine, of course, is often about drawing lines. Many medical organizations publish extensive reams of guidelines. Think of cholesterol, levels of PSA, etc. Where we set those lines defines how many people are 'ill' and the volume of treatment. Pharmaceutical companies aren't shy about lobbying for changes or getting patients and their family to do it for them. A small change can be worth billions. But anyway, we have to draw those lines based on what we know, and maybe in some cases lines shouldn't be drawn, since every line is an arbitrary border.

If something is rising in a population, then there needs to be cause. We can assume that something exists at an innate level in that population and diagnosis is essentially 'catching up.' Though if we suppose something to be a sustained level in the population, then it must be genetic or cultural. In a related paradigm, there's diagnostic creep, in which we expand categories and essentially move those lines. It's not necessarily a negative, we may previously have been ignoring genuine problems.

Beyond that, there must be a cause. An aetiological agent. Covid levels climb because there's an infectious virus. It doesn't have to be a physical agent, of course, it can be cultural. There is no shortage of examples. No one likes this one though, the medical paradigm we have is that diseases need to be caused by actual things and actual things can be bopped on the head with a pill. That's why, when we've worked up the vim to go visit the doctor, we feel curiously bereft when we don't leave clutching a prescription (even though 'there's nothing wrong with you' ought to be a relief). It creates a curious dissonance between patient and doctor. We wouldn't have booked the appointment if we were fine, after all.

I think the paradigm we have for western medicine only works to a point (and perhaps we should learn from other cultures). I forget the actual proportions, but around 80% of GP appointments are taken up by 20% of their list, and the majority of those have nothing demonstrable wrong. A fair number of those will be subjected to tests and procedures which are both expensive and likely unnecessary. So maybe there are better ways than chasing a diagnosis or reaching for pills. Often prescribed treatments are poorly evidenced and little more than a dangerous form of homoeopathy. We risk committing people to a lifetime of medication (that may be ineffective, and regardless we don't know the long-term implications of) and defined ill-health. It's not necessarily even cheaper than the alternatives.

Before the usual and inevitable pile-on by the group's righteously frothy fringe, I think these things are real. Not everything needs an organic cause. If I say I feel tired right now, it's because I feel tired. It doesn't matter if I had a good night's sleep. But the solution to my feeling tired might not be a sleeping pill.

The funding of healthcare is finite and in the (I was going to write mid) short-term is not sustainable. Something has to give and we have to give serious thought to a simple 'medicate more people' method and also the lack of investment in sustainable and healthy lifestyles. The practice of medicine must stop being reactive and become proactive.

(The statistics in DSM isn't a reference to methodology, it's a call back to its origins as a military census.)