Disclaimer: I’m referring the the US medical system, but I imagine people in other countries may encounter similar things.

I cannot be the only one who has had this experience, but all my dealings with the medical industry feel like they were refined by a group of psychologists to exploit the weaknesses of those with ADHD.

The volume of calls, appointments, and paperwork I had to full out to get a diagnosis and prescription for treatment is completely unreasonable to expect someone with poor working memory and attention issues to navigate.

Then, to stay on medication, you need to schedule and make appointments with a psychiatrist every month, for the rest of your life, and if you miss a single one, you will run out of meds (and likely charged a fine), which will make it even harder to remember to make the next one. If you miss too many, that psychiatrist will refuse to see you again and you have to go back to your PCP to get a new referral.

Look, I understand that their time is valuable, but this system couldn’t be designed any other way to be more accommodating to people who clinically forget things?!

It’s like designing a wheelchair ramp that’s actually just stairs that are 3x as steep as the regular stairs. Also, if you fall to the bottom, someone takes your wheelchair until you can climb back up.

  • auraithx@lemmy.dbzer0.com
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    1 day ago

    You guys don’t have repeat prescriptions?

    I just order mine on an app when I get a reminder and then pick it up from the chemist a few days later when I get a ping.

    • CreateProblems@corndog.social
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      23 hours ago

      Your use of “chemist” makes me think you’re out of the US.

      Most ADHD meds in the US are “controlled substances” and that means our doctors can only prescribe up to three months at a time. After three months we have to have a follow-up appointment, then they can prescribe three more months of meds.

      Plus the federal government decided that too many people were taking medications like Adderall. So their “solution” was to instate a cap on how much Adderall manufacturers can make. Which means there’s now a national shortage of Adderall. And that shortage means folks with ADHD are frequently going without their meds entirely or are forced to call multiple pharmacies in the area to ask who has their meds in stock. (My health insurance through work requires me to use a mail-order pharmacy because it means cost savings for them. But that means I don’t have the luxury of shopping around different stores to see who has my meds in stock - at least, not to fill the prescription through insurance and get the lower price. So if the mail order place is out, then I’m screwed.)

      Our healthcare system is so fucked.

      • Maalus@lemmy.world
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        20 hours ago

        Adhd meds here are controlled substances too. It makes it so the prescription lasts only a month. But how many packs of meds you have on this prescription, is only set by your doctor. So I get 4 months refills and have to buy it within one month.

        And yeah, med shortage over here is an issue too.

        • earphone843@sh.itjust.works
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          18 hours ago

          Yeah, the DEA wouldn’t allow that. Where I’m at in the US you can only get one month at a time, and most people have to go to the doctors office in person to pick up a physical prescription.

          You only have a 3-4 day window before your pills run out to do this, too, so if your pharmacy is out, you’re fucked because most pharmacies won’t just fill a control if you don’t have other prescriptions with them (if they’re accepting new controls at all). All because they’re afraid of the DEA.

          I’ve often day dreamed about starting a class action lawsuit against the DEA for discriminating against the disabled.

          • immutable@lemm.ee
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            18 hours ago

            Anyone that might be thinking this is an exaggeration, it is not.

            My wife has adhd and takes vyvanse for it, a strictly controlled substance. I have to be extremely vigilant about making sure her prescription gets to the pharmacy and that the pharmacy fills it correctly.

            We recently moved across country. Here’s a fun puzzle to work on.

            1. You can not get more than a 30 day supply of the drug
            2. Due to lack of providers, you can not get an in state prescription for more than 30 days
            3. while it is perfectly legal to fill the out of state prescription, every large pharmacy that can get vyvanse has a corporate policy against filling out of state prescriptions for it
            4. smaller pharmacies are willing to fill the prescription, but can’t stock the medicine.

            The amount of times I had to explain this to people and just exasperatedly go “so should I just prepare my wife to go through withdrawal of this medication she has been prescribed and taking for nearly a half a decade? Is that ok with you, is that an ok patient outcome? Is that what you’d let happen to your wife”

            Luckily shes married to an angry, persistent, yet very polite man who will shame the shit out of people until he gets it fixed. But I have no idea how she was supposed to navigate this alone, while facing the terror of withdrawal.

            • OmgItBurns@discuss.online
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              16 hours ago

              How did you manage that? I’ve been worried about moving out of state for this reason (not that I have immediate plans, but I’ve thought about it).

              • immutable@lemm.ee
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                14 hours ago

                It took a lot of persistence and luck. I had found my wife a new doctor to do her medication management and I ended up just politely hounding her staff explaining calmly but firmly the catch-22 I found myself in.

                The trick I’ve learned over caring for my chronically ill wife, who I love with all my heart, is to be very nice to the front line medical people but to never give up. They take crap all day from angry people, so I make it my mission to never yell at them, never get cross with them. I just explain what’s going on and my goal is always to get them on my side, be my person on the inside.

                That worked here too. After calling a couple times and being nice, one person working the phone remembered me and I could tell they wanted to help. I just kept asking them for options, people like it when they can be part of solving the problem. They got in the doctors ear about this and suddenly if she did a virtual evaluation of my wife she could write a preliminary prescription to fill the gap.

                Is this how things should work? No. Should you have to beg and cajole and get lucky that someone will help you? Absolutely not. But this is how I’ve figured out how to navigate this broken system.

                Tl;Dr - Be very nice to office staff, be persistent, make it a problem you can solve together, keep reminding them that you are advocating for a flesh and blood human being you care about and that them just suffering will never be a good enough answer.

                Also don’t get frustrated if you don’t make progress and need to call back, I think it only took calling 3 days in a row for them to figure out they better help me or they were going to have to talk to me every single day

    • atrielienz@lemmy.world
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      21 hours ago

      I have to go in every year to get refills on my epi pens and my migraine meds. I have to have a doctor sign off on those and I don’t really know why. I am not on ADHD meds but I imagine that would be the same.

    • joel_feila@lemmy.world
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      22 hours ago

      Usa person, i canget auto refills on meds never tried with adhd meds though. The ones that have auro refill have a final refill date and max refill number.

      • ivanafterall ☑️@lemmy.world
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        20 hours ago

        Like the person above said, I’ve only ever had them do that three months at a time, but it’s better than monthly, which is how I started.

          • ivanafterall ☑️@lemmy.world
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            16 hours ago

            Believe it!

            On December 19, 2007, a DEA regulation came into effect that allows a prescriber to issue multiple prescriptions authorizing an individual patient to receive a total of up to a 90-day supply of a Schedule II controlled substance.2 However, this is allowable only under the following conditions:

            There are some restrictions, but it’s a thing. It looks like it can depend on state. In my case, I believe they did it every month, but I only had to visit the office once every three months, the two after that were just called in/you could fill out a website form if you had any issue. But that likely counted as “three prescriptions,” rather than “a single 90-day prescription,” to your point. The main thing for me was not having to get away from work and into a doctor’s office every single month only for her to say, “Alright! See you next month!” as she charged me more than the insurance allowed to fund her (literal) new Corvette parked out front.