How do sick people organize complex mental health treatment?

July 15, 2022 2:23 PM

I'm being completely obliterated by paperwork, intake appointments, and scheduling for mental health treatment. I don't know how to streamline this, or work 'smarter' towards finding appropriate treatments, and I can't cope with the logistics of finding care. How can this be done?

I don't know how to manage the logistics of seeking 'advanced' help for mental health problems. There is too much paperwork, too many intakes, too many releases of information, my medical records are fragmented across the known universe, and I can't really cope with it. Calling my insurance company at any point in time makes my mental health worse and exacerbates very specific discrete symptoms. Filling out reams of paperwork makes things worse. Like, I just write down my total scores for the PHQ9 and GAD7 forms because I've filled them out so many times.

Every time I try to engage with a new provider, or type of treatment, the intake process is completely destroying me. I have to recount all of my symptoms, all of my medical history, all the failed attempts for treatment, hospitalizations, and just provide a shitty list of all of the shitty stuff that has happened to me in my life. It makes things just that much worse. I had a psychiatric provider that required I fill out almost 35 pages of documents to get an intake, and then, at the end of the intake was like 'oh shit man, there's not much we can do for you here; heres a referral to XYZ provider, they might be able to help.' XYZ provider then requires the same metric-shit-brick ton of paperwork just to get an appointment set.

I've tried really hard to pull together what medical records I can obtain over the decades of life I've lived, but it's impossible to get everything into a usable format to pre game some of this stuff and I don't really know what to do.

Like, today, I've been trying to coordinate an intake for ketamine treatments as one of the last ditch efforts I feel I can muster. My insurance company, the insurance care coordination team, my PCP, my therapist and the clinic who has some of my med history (which, insanely enough is the same practice this individual is a part of, but they don't have access to the records) all have parts to play in providing documentation to this one goddamn provider and I can't facilitate it. Like, it's the bullshit of not having the right form, or having the right fax number, or the right boxes checked. It makes me feel like i'm actually losing my grip on reality that humans have made this system so viscerally awful for people that are sick are expected to work through.

For context, I've been in mental health treatment for PTSD/cPTSD adjacent shit for a decade, with very little success in either treating the symptoms of, or dealing with the root causes of the trauma. I have tried the majority of the medications available to me, I have worked under most of the evidenced based modalities of therapy. I have a relatively new therapist that I see weekly. She is competent and seems experienced (I know therapeutic alliance is important, but I've never met a medical professional, let alone a therapist that I have felt more than 'fine' about).

To be clear, I'm not trying to ask 'what treatments to seek' but how to actually seek the treatments better, and in a way that doesn't make my mental health worse in doing it. I'm aware of 'concierge medicine' but this doesn't really seem to interact with mental health treatment in the same way that it does for just internal medicine (at least locally to me, PDX for reference).

posted by furnace.heart to Health & Fitness (7 answers total)

Do you have a primary care physician? Do they have a contact with a social worker? I know at the hospital that my mom gets chemo at the are social workers who help with things like that. I find things like referrals and specialists are much easier to deal withwhen you're going to a big health care conglomerate. I had a doctor I liked but when she quit her practice I left, too, for a doctor at one of the major area hospitals. Everything is online. It's a thousand times easier.
posted by Green Eyed Monster at 2:37 PM on July 15, 2022 [1 favorite]

Response by poster: Don't want to threadsit, but I do have a PCP; current care team (and by team, i mean, I am their patient; they do not interact with each other) of providers I see right now are:

-Primary Care Physician who is part of one of the larger hospital groups here in Portland (who also has a PMHNP on staff that I speak with from time to time when he is not available)
-Therapist (out of network)
-Insurance company's 'care management' team (kind of like a social worker, but probably shittier)
-Family therapist (who operates out of the big teaching hospital here)

As I am aware, I don't have access to a social worker under my medical benefits, and don't know how to obtain one if it were an option.
posted by furnace.heart at 2:42 PM on July 15, 2022

I am sorry, this sounds really hard.

Where I live, there are professional patient advocates who help people with this sort of thing. In the US, the Patient Advocacy Foundation appears to provide free one-on-one help for people with your kinds of needs.

According to the PAF website, “To receive our Case Management services, a patient must:

• Have a confirmed diagnosis of a serious health condition. Or the patient must be getting testing for the condition.
• Be in active treatment for the health condition or starting treatment in the next 60 days. Or the patient must have finished treatment in the last 6 months.
• Be a U.S. citizen or a permanent resident of the United States.
• Be getting treatment in the United States or a U.S. territory.”

Good luck—I hope you can get some of the help you need.
posted by hurdy gurdy girl at 2:53 PM on July 15, 2022 [4 favorites]

Apologies if this suggestion is too obvious, but is there anyone in your life who is willing and able to help facilitate this process on your behalf? Coordination of insurance benefits, obtaining records from other providers, filling out forms, all of this is something you could outsource to a friend/partner/other close person. You might have to sign a release/authorization form with the practice where you’re trying to obtain services, but then you can stay out of the logistics and just show up once the appointment is finally made.

There is no effective way to completely “pre game” this process, because every new provider requires new patient intake paperwork. If you already know your medical history and relevant dates/meds/providers, having that information all stored in a single Word document or something might ease the stress of having to recall everything, and for online forms you could potentially copy/paste some of the information in. I’m sorry, our healthcare system is truly broken and makes hard things even harder.
posted by little mouth at 3:45 PM on July 15, 2022

Have you talked to your therapist about this? I personally believe that helping clients with medical advocacy is part of a therapist’s job, but not everyone agrees. However, when my clients have executive functioning or cognitive or whatever difficulties getting them in the way of accessing critical care, I will sit down with them in session and help them work through paperwork, finding insurance information, scheduling appointments, etc. One benefit of this is that as a therapist I’m much more familiar with what the paperwork is “looking for” and can prevent some of those “checked the wrong box” errors. I’m also familiar with how the parts of the system intersect and can help figure out who to call in what order and what to ask for etc. I don’t know if this is support your therapist can give but it would definitely be reasonable to ask. At the very least, they should be willing to help you figure out how to cope with the effects on your mental health.

I’m sorry that the system is so broken. It shouldn’t be this hard and I wish I had better answers for you. One thing I can say is that in my clinic, the only thing that’s absolutely 100% necessary from the paperwork is name, DOB, insurance info, contact information, reason for referral, and signed consent forms. Everything else, if someone skips or leave blank, we get during the appointment. I can’t say for sure other clinics won’t return your paperwork or refuse to schedule you if you leave a bunch of it blank, but if it’s a choice between completing part of it and not at all, it’s worth sending in the paperwork with the bare minimum information to see if they accept it.
posted by brook horse at 4:39 PM on July 15, 2022 [2 favorites]

Sounds like you need a medical advocate. Wish I had a Portland rec for you, but someone like this person.
posted by lloquat at 8:21 PM on July 15, 2022

If you have your own document describing all the things that are relevant, it might be worth trying to just give that to the administration instead. Be polite about it, explain how hard it is filling everything out, and ask if you can just submit your own record. Send it electronically and bring it on paper.

To write this, you can start by looking at an old intake form. If you don't have a copy on hand, get a copy of your record(s) sent to you by whichever practice already has them. Heck you might be able to just submit that, and then add a page with whatever new information you have.

I know that some electronic intake systems have no flexibility. Even in those cases, it's probably worth calling the practice to ask if they can take your written account and bypass the electronic intake system.

I used to do this with my allergy information and history having to do with migraines. They were usually really glad to get this info -- I structured it as best I could.

If nothing else, it can (in the case of handwritten forms) be a lot easier to read than patient handwriting.
posted by amtho at 8:26 PM on July 15, 2022