ADHD healthcare in the UK is very hard to come by. You can only get It on govt insurance (NHS) basically via something akin to a loophole (Right to Choose), and the prices of private relative to median wage and disposable income render It inaccessible for most.
To put this into context for non-brits I was diagnosed in January after around a 10 month wait after my GP referred me, and still waiting on titration, I was quoted a waiting time of 6 months, and I’ve been following up every month since through every contact form available and still no sign of when this will be okay. I work in the tech sector (software development company) as a mid-level cybersecurity engineer. My salary is in the 70th or so percentile for the UK, and paying private would easily take a quarter of my disposable income after rent and bills.
It sucks to see how people just suffer endlessly waiting. But there is a way to have your cake and eat it too and its called self-medicating. It’s not a perfect solution but we don’t live in a perfect world/system, and for me the benefits to life quality make the hassle well-worth it.
However I was banned by /r/ADHDUK when someone asked whether self-medicating was a good idea and I responded with a list of pros and cons in what at least I thought was an extremely sensitive, dispassionate and balanced manner, and the thread was locked shortly after, with the mods lock comment putting in a final word that self-medicating is “always a bad idea” - a narrative that seems not at all accurate in my view.
To my shock though this didn’t seem to be just a case of power tripping mods, but an overwhelming community consensus as well.
Coming from the trans community where self-medicating to transition is arguably almost more common than receiving genuine medical care due to various failures and malice on behalf of the government and the healthcare system in the UK, I am somewhat shocked people had such a negative view of even the idea, and that it seemed fairly common even across the ADHD space as a whole. Honestly I started self-medicating about as soon as I put the referral in, I knew I had ADHD, the diagnosis etc. is just hoops for me to jump through.
So I’m curious what is the outlook in this community? Positive? Negative? Neither? What do you think of self-medicating and why?
Most people in this profession couldn’t give a better assessment than an unplugged sega genesis.
Yeah, but not the way you meant it. It’s usually better to research yourself. When it matches I’m actually surprised they got it right. Never been wrong yet.
Patient-facing doctors and those who do research are two circles that do not overlap. The patient-facing people only do research to see if they can deny you treatment based on race/sex/(insert immutable trait here) or how they can otherwise jerk you off until you die or leave to save on the budget.
Universities are privatized degree factories. It don’t mean jack or shit.
Makes me wonder what the rest must do to get rejected.
Good luck proving any of that shit in court or having the money to against unions that protect them like the cops.
Thats the thing - they are justified to distrust the medical establishment and approach it with extreme skepticism. They’re just wrong because they’re elderly rightoids who fall for the same pill mill scam but by Alex Jones instead of big pharma.
That’s not true. If you want you can seek it - but I don’t think it should be a requirement or even the default recommendation. What you should do depends.
Maybe in the US it works differently, but this isn’t possible in the UK. You are simply discharged if you disagree and further referrals are blocked. There is only one semi-functional non-provate ADHD service. Doctors will often actively try to sabotage your care for disagreeing with them.
Yeah he’ll say “have you tried not being sad. Also maybe stop being transgender/black/woman.” That is if they respond at all, usually it’s just silence, or being told to fuck off and wait.
My life won’t pause itself. I’ll never get those years of waiting back if I wait. Or I can just do what I know is right and what I know helps and bypass this circus of drug gatekeeping.
And if a layman can’t do it, a doctor is even less likely to.
Nah. Just Google what amfexa doses are there, pick lowest, eyeball napkin math it out to match it’s racemic Amph equivalent, wash the amph, put into capsules at desired dose and take it. If it works - great, stay at that dose until you no longer can, then increase or tolerance break.
If it doesn’t work - try more, but first make sure you’re eating/drinking/sleeping well.
If you increase dose too much you waste money and ruin tolerance, so just don’t do that. Amph physical addiction is very weak, you will feel sad for three days, as long as you understand there is no rational reason and it’s just a chemical imbalance it’s very easy to override the feeling. Mind over matter.
Take 5-HTP (standalone, not Amazon supplement diarrhea suprise shit) and L-Tyrosine to mitigate withdrawal somewhat (this is broscience).
*Elvanse. And yeah this is obvious enough. Before taking a substance you Google what side effects it possibly has. Lisdexamphetamine (Elvanse) raises your BP. So check your BP before starting. My BP was actually out of spec due to a faulty reading (I find those fucking things extremely uncomfy) and the docs didn’t even bat an eye before approving me. Now I’m doing my own research. Heart rate also worth checking. Use a pulse oximeter. Cheap and easy/quick to measure. If you want continuous monitoring (to e.g. pick up something that happens briefly) use a Fitbit. It’s not accurate but it will give you general trends. E.g. my heart rate goes up during come-down. Something doctors don’t do. First gen versa is nice and stylish.
Oh? Care to back that up with evidence?
And if a medical professional would give poor assessments what makes you think Billy-Bob with a 9 year old smart phone can assess him self better? If Billy-Bob does it wrong he could hurt himself or make his mental health worse.
What? There is nothing wrong with with researching symptoms yourself, but to think you are more correct than a trained medical professional is insanely egotistical.
“they got it right”? Ah, I see your issue. You are going to the doctor to confirm your biases and get treatment for it, not to get their professional opinion.
If they don’t agree; "can’t believe they got it wrong. They’re useless. " If they do; "hey they got it right for once. "
You are one of the people that I feel aren’t fit to self-diagnose. Your symptoms could have been autism, bi-polar, or various other conditions. Could have even been a combination. Convincing yourself it was 100% adhd is reckless and should be tempered by an outside opinion.
I’m not sure where this lack of respect comes from. if you are in the UK like me it probably stems from the lack of funding for the NHS leading to “revolving door” Quick assessments as they aren’t able to spend the proper time going through everything. I have my own gripes with the NHS but I trust that the qualifications they have makes them more specialised in dealing with my health than I or the average person.
“Deny treatment”, huh? Sounds like someone self-diagnosed and demanded medication and the only professional in the room wasn’t having any of that shit. How are they supposed to trust what you say your symptoms are when you are clearly biased towards what you think you have, you’d look like an addict trying to get a fix.
I doubt bigotry is involved, but if it was then you could easily get a solicitor involved and he could help prove that you weren’t reviewed fairly, by having a second doctor examine you and comparing that to the original.
Regarding research, doctor regularly attend medical conferences and research treatment options throughout thier career as medical sciences advance. You don’t stay a doctor otherwise.
If by “have you tried not being sad” you mean they suggested the usual rounds of meditation, exercise, diet, etc then that is perfectly normal to do and shows proven mental health benefits.
Maybe they offered anti-depressants/anti-anxiety to help cope? My GP did (as I had a report from work that suggested that I’m showing signs of depression) but I said I would rather a mental health specialist assess the symptoms as they can overlap with adhd and I want a fair assessment for when they do.
I seriously doubt they mentioned race/etc.
This part I can sympathise with. I waited 4 years for adhd to get treatment and I needed to chase them for updates every step. It’s frustrating, sometimes I feel like they are throwing pills at me and throwing me out the door hoping this time it will improve. (though in a way that’s really the only way it is done right) I wish their was more monitoring/reviewing of treatments, but I am perfectly fine with their knowledge on the subject.
I attribute this to a lack of funding and a huge waiting lists rather than simple negligence. There simply isn’t enough budget/enough doctors/enough time to give everyone the time they need.
That said; as frustrating as it is, that is no excuse to recklessly/stupidly to self-diagnose and self-medicate. Doing so invites health risk that I’m not comfortable with people taking.
Waiting sucks I know. If that is unbearable then seek private treatment. If that is not an option then wait like everybody else. Until funding improves that’s what we are stuck with. This “circus of drug gatekeeping” is there for a good reason, and it is because a layman is not a good judge.
Wait, are you seriously claiming a doctor has less knowledge than a layman? Really? 8 years of studying to somehow know less than the average person?
Going to assume you are being hyperbolic rather than actually believing this. It’s one thing to be frustrated with the current system; it’s borders on conspiracy theories thinking they are all incompetent for no good reason.
This is insane. No one should be doing this, least of all people with mental health issues. There are MANY steps that allow human error to mess things up. Messing up the measurements via simple misreading of a decimal is a simple one that could get someone hurt, and maybe even killed. The LD50 is only 96.8 mg/kg from what I found. If you don’t know what LD50 is without Googling what it is, then stop immediately. You are not anywhere near informed enough to be doing this.
Phycosis is a also common side effect of its misuse. And I’m not convinced anyone doing this would have sound judgement.
Letting someone decide their own dosage for an addictive drug is also a recipe for disaster.
There is no sane professional that would consider this bootleg treatment safe enough to match commercial treatment.
If you aren’t stopping immediately, then at minimum don’t spout these dangerous ideas that could get someone else killed.
And who the fuck are you to decide for others what is and isn’t a risk worth taking?
“Lol just be rich, no problem”
Ah yes the good old British tradition. Wait meekly in the queue. Know your place. Let your teeth rot due to executive dysfunction.
Y’know when I started I had a problem with that. First ever dentist appointment after meds I was told my gums receeded due to my lack of brushing prior as a result of ADHD. Not something I’m proud of.
My teeth were fine but that’s because I don’t eat baked goods or sugar very much. Gums, again, not so much. Second appointment, some months into meds? Gums were no longer receeding. Even the professional clean was far less bloody than the first time.
If I had “waited like everybody else” who knows, maybe I’d be missing teeth by now as a 26-year old woman. Thanks darknet amphetamine!
No, just personal experience.
So far I have been better so it’s that.
Same applies for a doctor.
Believe me I didn’t start off with that assumption. I came to it gradually after 10+ years dealing with the NHS nearly constantly.
Their “professional opinion” is just a confirmation of their biases. That said just like mine I don’t place zero value on that, I take it into account, but I don’t rely on it like gospel.
And says who? You?
For the record I was never 100% convinced, and still am not, that:
But I’m not an idiot, I can look at the symptoms checklists and see that it’s not autism or bipolar that’s the primary issue.
If anything the thing that convinced me most was the fact that the meds helped as much as they did when I tried Amph on my own prior to getting a diagnosis at all.
I wish this was true so I could get the stuff I know I need and bypass them as much as possible.
What does lead to this lack of respect is every experience I’ve had, through all the dismissiveness and the inherent need to get as many patients to fuck off as possible to shorten waitlists.
And I don’t.
This is projection. I have no need of doing this when I can acquire any drugs with next day delivery without groveling before so-called professionals.
They already don’t trust me or anyone for that matter.
I had strep throat once. It was so bad for a week I could barely eat, speak or sleep, and constant fever. Instead of being prescribed antibiotics I was told it can’t be strep throat, I’m probably just exaggerating (read: hysterical). I was told to take some paracetamol and rest. As if I hadn’t been doing that already.
I knew it was strep because I googled for 5 minutes or so.
Several more phone appointments and my constant pestering they gave in and prescribed some anti-biotics.
Cleared up in a few days. What’s funny is that paracetamol didn’t actually help at all with the pain, nor did ibuprofen, all it did was in my feverish haze I accidentally took one too many in an effort to have the absolute max dose possible, but was lucky enough to suffer no ill effects, only Ricola actually did help me, but I guess that hasn’t come up yet at all those conferences they’re supposedly attending.
I’m just glad I didn’t end up like this kid: https://news.sky.com/story/amp/boy-died-from-sepsis-despite-four-visits-to-london-hospital-in-a-week-inquest-hears-13196518
Or this kid’s story I found while looking for the above article. Only what, 3 months apart?
https://www.bbc.co.uk/news/articles/crgg6e0p3e6o
This tracks with my experience.
I’m sure we’re all just addicts trying to get a fix though, right?