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Frustrated Scheduling with the EDS Clinic
Visiting Mayo Clinic | Last Active: Sep 4 6:02pm | Replies (6)Comment receiving replies
PART 2
I know from my first experience that from the outside looking in, everything from the appointment request process to the consultative process and scheduling, to the appointments and testing at Mayo is not very transparent. Even on the forums here, you can tell a lot of people have unnecessary anxiety that could be at least somewhat alleviated if they simply had more information. It was like that for me because there was very little information about the EDS Clinic, aside from Dr. Knight's open-access journal article about establishing the clinic during the pandemic--that's where I learned the most. But there are so few providers across the country for EDS that I took the risk.
All other information that didn't come from the website, I had to put my faith in the person on the other end of the phone--and that's where things went awry because too often the person/people I put my faith in gave incorrect information, or wasn't there to begin with.
One specific example: A pelvic MRI was ordered and I'm not saying anything that couldn't be found if anyone looked it up online, but it's very common to ask women to insert a lubricant jelly with a tampon-like applicator immediately prior to the MRI. It's often an MA or tech who just hands over the device and lubricant, while you're often half dressed. That could be really triggering for reasons that seemed obvious to me, and some people with severe pain may not even be able to do that. And no one tells you this in advance, and the staff member who saw me didn't tell me that it was optional (it doesn't significantly impact the ability to interpret the images in the majority of cases; in other words, it's a preference, not a requirement, though it's presented that way). My Mayo gynecologist who ordered the test wasn't even aware; therefore she couldn't warn me even if she wanted to help me (which she did).
So...it's vital in spaces where providers are likely to see a higher incidence of trauma such as Women's Health and pelvic physical therapy, that providers from "front of the house to back of the house" be trained about trauma-informed care (I know that's not an easy thing). I provided specific feedback to the pelvic physical therapy team about my experience, so I can only hope they've considered it or the therapist who treated me might view the outcome of my experience differently now if the feedback made it to her.
I recognize writ large, these things aren't easy. But at least in regards to the EDS Clinic itself, being more transparent and clear about what to expect could have gone a long way.
-I was and am aware the EDS is a consultative clinic, and there are both benefits and limitations to this. I was and continue to be wiling to accept the limitations. But most of the barriers I ran into didn't have to do with the consultative clinic concept. The problems were with misinformation, miscommunication, and lack of follow-up/follow-through. The consultative clinic concept breaks down when there's not infrastructure or staffing in place to assist patients in coordinating the appointments required to complete the full consultation. You get an EDS provider who's submitted a stack of orders, and a patient with marching orders, but nowhere to march.
My provider submitted several orders/referrals as part of the evaluation process. Unless it's changed, the protocol there is that the provider submits the referrals and only General Internal Medicine (which houses the EDS Clinic) has authority to schedule the related consultations. Patients can't self-schedule or contact the related department directly to schedule. That system falls apart if schedulers aren't there to schedule you (phone rings and rings, no answer), can't schedule you because of no availability, and there's no system to follow up with us when appointments become available (I'm assuming this because schedulers have told me this themselves), or if the schedulers make significant mistakes. It's this weird situation where inadvertently, sometimes no one ends up being responsible for coordinating the care related to the overall EDS evaluation/consultation.
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PART 3
I know everyone makes mistakes, but mine were pretty egregious (they told me repeatedly a specific health psychology consultation was required to be done in person, which was false; they scheduled me with the wrong gynecologist, which resulted in me having to do two separate appointments and exams--again, didn't help with the trauma situation).
So in my case, the consultative clinic model got hampered because I couldn't continue/complete my consultations or treatment programs in a timely manner, or at all. The infrastructure wasn't there to implement the model the way it's intended.
-The virtual appointments were part of it. I'm aware of the federal laws about virtual care, but that's also why I contacted the EDS Clinic months before my in-person appointment to ask how this would impact my scheduled virtual appointments. Like you, I'm still not sure why things happened the way they did. Even setting aside the transition out of the COVID public health emergency, it wasn't right to sweepingly cancel all my virtual appointments then tell me they'd follow up with me the following week, and then have me waiting in silence for six weeks with no follow-up after I'd been calling/messaging once a week during that time (that's when you offered to help me).
Even a year later, the schedulers still made a mistake. I'm also not sure how Mayo Jacksonville is responding in regards to the law, because as of now, all of my consultations have been virtual, no questions asked, except for those providers (Autonomic Neurology and the chronic illness treatment programs the EDS Clinic commonly refers patients to) who choose not to offer them virtually. I even had a virtual pelvic PT appointment, which shouldn't have been possible unless she's licensed in my state--maybe she is, but no one raised this concern. Either Mayo licenses providers in every state or they're meeting with us anyway.
It's pretty awkward for me to ask my EDS provider directly why they told me to my face sitting right across from me, that all my appointments and treatment programs could be done virtually when it wasn't true. I haven't had the chance to ask that question, but I'm too intimidated to ask...because I really need any help I can get, even if it's not what we originally discussed (again with the power imbalance), sigh.
-With Gynecology and Autonomic Neurology: Thank you. I did contact Patient Experience, or at least I included feedback about my pelvic PT evaluation with my initial grievance.
The EDS Clinic/General Internal Medicine scheduling team made the mistake scheduling me with the wrong gynecologist (because only they can schedule a patient if the order originated in their office, so I was told). It wasn't actually Gynecology's mistake; it's quite clear from the providers' profiles what conditions they treat and I suspect if someone from the EDS scheduling team would have asked to verify when I called to verify, someone would have told them. The specialist I was scheduled with didn't match the reason for my referral as indicated by my EDS provider. No one realized this until I had already flow across the country a second time and found myself sitting in the exam room.
Autonomic Neurology was the subject of my last grievance to Patient Experience because they wiped out my appointment without notifying me. Same as above, EDS scheduling is responsible for scheduling the appointment but never scheduled it for some reason, and as mentioned, there's no system for wait lists or following up with a patient with an existing order that hasn't been scheduled. A provider in another office stepped in out of kindness to help me get the appointment and Autonomic Neurology cancelled it.
I never received an explanation as to why the appointment was cancelled without anyone notifying me (or why the EDS Clinic didn't schedule it in the first place). OPX apologized for the lack of communication when I pointed out that no one had even apologized, let alone given an explanation. The result of my grievance found that Autonomic Neurology cancelled my appointment because the test results supporting my diagnosis from my local provider "lacks numerical values," (direct quote from my closure letter) which was false, so they must have had incomplete records. I'll never know because when I submitted the full record, they still declined to schedule me and I was told that decision was final.
That's how I ended up writing this post. I can't go back in time to get back the sacrifices and opportunities that were lost. Even with the consultative clinic model, I can't finish the consultations. The only two things I could think of were to share my story and engage in feedback to try to make things better, and schedule my "final follow-up" with the EDS Clinic. It took me from November 2023 until June to even get that appointment scheduled. And it took an "exception" and tears of frustration on the phone to get it because at first they told me again no appointments were available. I'm grateful someone helped me, but I just don't think it should come to that.
While seeking support, I found on other online support groups that are more active with EDS patients (Inspire, Reddit, EDS Society) that I'm not the only one who's had this kind of experience at Jacksonville. Though I was glad I wasn't alone, it made me really sad. I don't think that's how Mayo wants to be known, and I know it's not how the little EDS Clinic team wants to be known. I do wish the EDS team all the best, and I know their hearts are in the right place. We're a greatly under-served community with conditions that don't fall neatly into a sub-specialty. This effectively means it's left to healthcare professionals and advocates to take initiative and choose to work with us--many reserve the right to choose not to treat us and don't, saying we're "outside the scope of practice." Dr. Knight and his team are stepping up when most step back, and that means something. I hope the leadership at Mayo and Mayo Jacksonville are able to see that and maybe one day provide the EDS Clinic team with the support they need to more fully fulfill their mission and represent Mayo Clinic in a way that matches their ideals.