Self-Advocacy, Being Brave, and the Patient Advocate

I accomplished something today that took the form of self-advocacy, although the outcome is mixed, and ultimately a bit of a let-down. I don’t go it alone, and tonight even as I’m so exhausted, I’m also feeling grateful for the social support and, where present, the institutional supports that I do have.

I write this for solidarity, for my disabled autistic, and ADHD kin who sometimes feel alone. I’ll share some details mostly to share the context of the story, okay? I’d love to hear from you if you want to share a related experience. Click through to the facebook post to discuss this topic if you’d like to comment.

I get my healthcare through the VA, and I’m a disabled veteran. In January, I was diagnosed with moderate malnutrition, and I now get high protein nutrition supplement shakes shipped to my home. I try to do what I can to take in enough energy by mouth despite the fact that my stomach and possibly some other GI parts aren’t work righting. I’ve got gastroparesis, GERD, and at least one more thing going on.

It’s not great. And the malnutrition is making my other, non-GI impairments worse.

For example, last month I had the worst migraine of my life, which was a 22 day long status migraine, involving a hospital-level intervention, and way more drugs than I’m used to taking. I also missed a full six weeks of work due to disability. In general at present, I cannot eat enough to have energy to walk very far, or to think very clearly. Malnutrition is running the show for my bodymind.

So that’s where I’m at, and my primary care physician, my neurology provider, and my nutritionist all share concern about this.

One person does not share concern about it: my GI doctor. He has not responded to any of the notes the nutritionist has tagged him in. He has entered false information in his own notes about me. And at our last visit, he literally told me to “do my research” by (get this) going to Costco to buy a book about gastroparesis.

Side note: as an autistic researcher, I’d like the reader to know that buying a book at Costco? Yeah, that’s not “doing my research.”

GI doctor also rolled his eyes when I tried to ask my actual questions. He ignored my wife when she tried to ask a question. And, really, I needed him to care enough to assess what’s going on and try to help me, not make fun of me and tell me to do my research at the Costco book sale,

So, at the urging of the nutritionist, my PCP, and my neuro provider, today I did it. I went to the patient advocate to make a formal complaint.

This was hard!

It was hard because I’m kinda weak right now, because malnutrition. And it was hard because this was me going to explain that I deserve something more than what I’m receiving from a someone. Whew!

How I planned for the patient advocate encounter

I had a photo of the office door, with the location of their office on it, from having found them last week, so I knew where to go.

I typed out a script the day before, covering what I wanted to be sure to include. I included a graph (of my unplanned weight loss due to malnutrition) with markers for the dates that correspond to key events. I listed the key events on the same page, with dates so they could be looked up in my record for reference.

How it went with the patient advocate

The patient advocate was nice. I told him that my script was my “notes” and he let me read my script.

I cried partway through, which I very easily do and find unavoidable even though I wish I could avoid it. I only regret not planning for the crying in writing my script, because I was at a loss for words when I started to cry. I think I pointed at my face and said something like, “Please ignore this” and kept reading.

The patient advocate affirmed that I had just described what sounded to him like an unfortunate situation. Then, he asked me how much detail I wanted him to share when he requested that I be assigned to a different GI attending physician.

I didn’t know, and still don’t know, the correct answer to that.

Is there an outcome to reporting that this guy has been so rude and dismissive and unwilling to do anything for me no matter what anyone tags him in or what I ask or report? In other words, can I help other patients by being brave and sharing my details? I have been slowly starving to death for many months now, and he just ignores this and makes fun of me. Is there any outcome to sharing that detail?

Patient advocate wasn’t sure. And he quickly said that he could just make a request that I get a different GI doctor, and that I’d get a different GI doctor. Done deal. It felt like that was what I was supposed to choose, so I did.

Patient advocate said I should get a call in a few days, from the GI clinic scheduler, so that I could schedule to see a new GI doctor. He seemed certain that this would happen without a hitch, and told me to call or contact him again if that didn’t happen right away.

And so that’s it.

How I feel about it all

I prepared all of that detail, and experienced all of that dismissiveness, and all I had to do was ask the patient advocate to press a button, and now I get a different GI doctor.

So that solves my problem, I guess, but it’s deeply unsettling to me that I cannot do something that in any way reports how this doctor treated me.

That GI doctor surely must not treat other patients all that great either, right? I suspect there’s something going on with him, something worth his supervisors looking into anyway, and I don’t think there’s any way for me to make that happen.

In the end, I’m not sure whether I accomplished all that much today, although it took everything I had to get it done. I think this is ambivalence.

Have you ever gone to the Patient Advocate?

Want to discuss this topic? There is a thread about it on the facebook page.