Battle for getting proper treatment

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    • #130961

      I guess I need someplace to rant.

      Um, I live in Seattle and I’m 52.
      I won’t drop names, but I’ll drop medical groups.

      I was diagnosed as a child, I was given meds until puberty, and I was in therapy until 15, I guess. At the time I had no idea what it was all about.
      Now, looking back at it objectively, mom was leveraging the diagnosis to hide her own abusive sins. When I complained about the abuse, I was considered a liar. Mom is an undiagnosed borderline personality. That means she blamed everyone else for her problems and was often violent. So, as some might conclude, my therapy was corrupted to a high degree, so I guess it was useless.

      So, some 30 years later, I’ve disavowed my mother and siblings and I’m tackling the ADHD. For the past 5 years, I’ve been attempting to get appropriate therapy. Wouldn’t you know it? Just asking for therapy guarantees you’re not going to get it. Without insurance, it was insane. I was forced to go to community clinics. I’d ask for therapy. “Stimulants are addictive” “Stimulants are a performance enhancer” and on and on. Not once did anyone say, “Well, let’s see what we can find out.” Not one doctor.

      So, I get a job that has health insurance, now I can get treatment, right? Wrong.

      The medical group was Group Health (Often referred as Group Death) an HMO who seemed to prefer mediocrity. I make my request to the first PCP I chose. He sends me to a counselor. Not what I asked for, but okay. Talk. That’s all I got. Going over issues I’ve already gone over and resolved. After two months I ask the counselor about treatment. “I can’t prescribe medications.” Right. So I ask so give me a referral.” “Let’s talk about your problems and see where it goes, first.” Right, that sounds familiar. Exit, stage left. I tear a stripe out of my first PCP, telling him that ADHD is not treated this way. First meds, then appropriate therapy. On the following visit, the bastard suddenly retires. Now I’m saddled with a new PCP. So I keep my mouth shut for a few visits, and bone up on what is needed for ADHD therapy. Psychiatrist and an ADHD therapist. On the next visit, I ask. I get a referral to what is now Kaiser Permanente Behavioral Health. Someone I work with provided me with a specific psychiatrist’s name that works there, so I make the appointment, and wait. For four months.

      Finally, after meeting with the psychiatrist, I’m referred for a neuropsych evaluation. It took nearly three months to complete. The doctor was a Ph.D. and we could talk shop. It was, surprisingly a good experience. However, it was done while I was being held on a dose of Adderall that was started three years prior. The evaluation confirmed my own assessment. I also had a Psychological evaluation that filled in where the neuropsych evaluation didn’t cover and it agreed. So, I felt validated. I had to wait another two months to see my Psychiatrist. We tried Ritalin, but compared to the Adderall, it was rough. No staying power. So we went back to the Adderall tritated once, and I had trouble remembering to fill out the self report sheets he gave me. So he held me there for several visits insisting on those reports, as if I didn’t have ADHD. Worse, I was referred to a “therapist” for CBT. Appointments were about five weeks apart. Useless. I was told they were understaffed. *facepalm* Even worse, we covered ground that had nothing to do with ADHD. So, I was stuck in a holding pattern on the meds, and Kaiser was playing games with Behavioral Health. Stalled out.

      Eventually, I qualified for PPO insurance from my employer. Now I can pick and choose my doctors. So, I aimed for University of Washington Medicine. Picked a PCP and had my first appointment. On that first visit, when I made my request, he just about wet himself, “I can’t provide treatment. I don’t have the training!” *facepalm* I found that rather odd, but I requested a referral, explaining that I’ll need medication management as well as a therapist to provide ADHD CBT. Two months later, I get an appointment with someone. An ARNP with a Ph.D. in Philosophy. From what I understand, it’s a Ph.D. involving many fields of study, and considerably more difficult to acquire than a Ph.D. in a specific field of study. I should have known better. In two instances. During the appointment, she interrupted constantly, definitely an abusive type. She started out with saying that she does not prescribe and that my PCP would handle that. *red alert*, then goes over my history, as well as the Kaiser diagnosis, and while glancing at my medical records from Kaiser, refused to talk about my concerns about those records and the many errors they had. She got up and left the room saying that she’ll go over the evaluations and records. Yes, I was frustrated, so thinking the appointment was over, I left as well.

      That nitwit wrote up a visit report that essentially ensured that I would not get the treatment I requested, claiming comorbid concerns that should be dealt with first, such as my chronic depression, elevated heart rate, and emotional control, then she added a few more issues and concerns based on events that did NOT occur during the appointment. *facepalm* She went on to say that I was at the maximum safe dose. *double facepalm* She also reported that I had left abruptly When I got home, I wrote my current PCP that I was not going to need her services and that I would seek treatment elsewhere. At this point, I had read the commonly accepted treatment parameters for adults, and based on that, I was getting the medication therapy for adolescents. To me, it was rather clear to me that she did not know how to treat adults, in spite of claiming that she could. Also, I had searched UW Medicine’s condition library and they had no information regarding adults. Just pediatrics.

      So, there it is. My PCP is clueless, in spite of giving him a copy of the treatment parameters (He freaked out again, and I tried to explain that HE was the one that needed to be better informed because his job was to monitor me closely if and when the medications would be increased as defined in the parameters, I don’t think he even bothered to read it), and the therapist he sent me to is just as clueless, attempting “Problem Solving Therapy” with me to address my ADHD. Of course, that therapy is appropriate as part of a sheaf of therapies, but I don’t think I need help with problem solving specifically, and that the primary symptoms should be addressed first, after my meds had been adjusted to optimum levels.

      Okay, there’s my rant. 15 years of effort and I STILL haven’t gotten the treatment I should getting. The medical community is constantly throwing up these roadblocks in my way, for whatever reason, none of which they tell me about, nor will any of them help me get access to treatment. Of course I’m depressed, and angry, and frustrated. My life is up in flames. My job barely covers the cost of living, under constant threat of homelessness, and they’re worried I’ll have a psychotic break on the meds, not to mention “addicted!”. If I wasn’t depressed, then they would have a legitimate concern because I would be bipolar!!! They want to treat non-neurological depression with meds that would only make me more depressed! *deep breath*

      Sorry, I thought I was done with my rant.

      So, why the hell is it so difficult to get treatment??? All I get is evasions, redirection, and outright lies and exploitative responses from people I should be able to trust!

      Is this common? You can get treatment as long as you don’t ask for it???? The logic of these people alone should disqualify these people from practicing in the first place!

    • #131016


      First off…take a deep breath. I can see from your post that there is
      an awful lot going on in your life, and that this issue is just frustrating
      you. Although dealing with a different issue, I had much the same result
      when I went to UW for help.

      I’m no authority, but I would suggest you find a capable psychiatrist/psychologist
      that deals with adult adhd.

      If you can choose your doctor, I found a number of qualified Psychiatrists
      you might review. Make some phone calls if you can, and find out about their
      practice before visiting.

    • #131074

      Scotjk, I sympathize and empathize with your struggle! I’m in my 50s too, and was officially diagnosed with ADD by a psychiatrist in 1992, as I’ve had ADD/ADHD all my life. Genuine stimulant meds were a godsend and changed my life in so many positive ways. But after moving up here to Michigan in 2006, I started getting badly tainted Adderall XR. So I stopped seeking treatment for a few years and it sucked. I’ve made as many “natural” changes to my lifestyle as humanly possible but I finally went back to a psychiatrist this year and got reestablished with treatment. He prescribed Vyvance and the first couple months the pro drug Lisdexafetamine Dimesylate seemed to work pretty well. But once AGAIN the last few months I’ve received more tainted crap! How do I know it’s tainted? Well without going to deep in this post, I’ll say I’ve had urinalysis tests which showed on several occasions positives for other drugs, such as anti-depressants and anti-psychotics, and other drugs too. These drugs are not listed as active ingredients in Vyvance or Adderall, and I’ve never been informed by my doctor or pharmacist that I was being given them! This is highly unethical and in the light of day would probably seen as totally illegal. But here’s the kicker, the nurse at my current doctor’s (psychiatrist) office has been telling me recently that “ALL the stimulants are tainted” Yep, I’m not sure if she said that out of sheer ignorance or profound stupidity. But that’s what I’m being told now.

      Having said that, I truly understand how difficult it is to lodge complaints about stimulants, because of the stigma. Even today so many medical professionals are ignorant about ADHD and stimulants. The fact is I know what pure stims do and how they work, as well as what the typical side-effects can be. I also know these tainted stims don’t help my ADD symptoms, they actually exacerbate them. If they helped I wouldn’t bitch!

      If I can offer any advice, I’d say at least find a psychologist and psychiatrist who specialize in adult ADD. At least then you have a fighting chance to be heard and understood. My psychologist and psychiatrist understand my dilemma, and advocate for me as much as they can. But the problem clearly stems from a corrupt supply chain in the pharmacy system. It’s always about money first and good quality healthcare run a distant second. Or so it seems.

      • #131394


        I have an appointment this week with Psychiatry Northwest.
        We’ll see how that goes. Not sure what I’ll say first, but I intend to get them to provide me a copy of their treatment parameters. I had emailed the nitwit asking about her treatment parameters before the appointment and I got something vague and evasive in response. Seems I’m a slow learner, I should have seen that as a red flag and canceled the appointment.

        I’ve taken a look at the link, and it’s astonishing that there are so few, even outside of Seattle. Some raise their own red flags, but I’ll consider the others.

        You’re right, I’ve got a lot on my plate, and most of it is a result of ADHD and the fact that getting appropriate treatment is next to impossible, even with extensive evidence, and the lack of understanding the meds involved, and they resent being questioned on it.

    • #133287

      Hey all,

      Mixed bag for the last couple of weeks.
      Because I was insisting on what his preferred treatment parameters (via email) before I would set up an appointment, I was offered a phone call to discuss everything to see if we were a good fit.

      On the call, I asked the right questions, such as, “How do you work out the appropriate dose for adults?” He nailed it the first time. I asked other questions such as monitoring, dose adjustments, etc and it all sounded good. I needed to work out the insurance, but it looked like a good match, except that there probably won’t be CBT involved, but I’m pretty sure I can locate someone in that regard elsewhere.

      It’s strange, going to large organizations like Kaiser Permanente or UW Medicine or a community clinic and you can’t get anywhere. Seriously, UW Medicine doesn’t treat adult ADHD, they clutch at adolescent therapy for dear life. What is that? They’re a university! It doesn’t make any rational sense.

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