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Frustrated Scheduling with the EDS Clinic

Posted by emo @emo, Jun 4 11:47am

I’m feeling really frustrated organizing my appointments with the EDS Clinic in Jacksonville, and I’m wondering if anyone else has had struggles or has recommendations? Where have you found treatment for EDS?

I established care and was seen in person over a year ago after waiting nearly a year to have the appointment, and I’ve run into all kinds of misinformation, lack of follow up and barrier after barrier. I’ve been in contact with the Office of Patient Experience multiple times, because some of the issues have risen to that level of concern, and it doesn’t seem to make a difference because they must defer to what department “leadership” communicates back to them. Also noteworthy: I went in person to the Office of Patient Experience to share my challenges/feedback, and I could hear clearly the family in the next room, also commenting about their negative EDS Clinic experience.

Although I haven't gotten the answers and treatment I hoped for, I can say that almost everyone (once I get to through to someone) has been kind. I don't think it's entirely their fault, and I understand the challenge--but you have to be honest with patients, at least, and give accurate information. Follow up when you say you will. My take is this is a small and growing clinic that needs more support from Mayo to meet the high volume of patients with high need.

I wish I would have known it would be like this before I started this journey, so I wanted to share my experience, from a place of frustration and disappointment, but also in case it makes a difference to someone somewhere so they can make an informed decision about where to seek care. Or maybe as the EDS Clinic grows, feedback will be helpful. I’m so confused because others rave about how they had such a positive experience (but in other EDS groups, the sentiment isn’t nearly as positive) and this summary isn't even everything I experienced.

I called scheduling again today in an attempt to schedule my “final follow-up” with my provider, and again there are no times available. I understand this, but the greater issue is I called 3 weeks ago and the representative told me they would “request access” to schedule me and call back with an update, and no one ever called me. This has happened every month since November 2023. If nothing was available, I would need to call back on the 10th of the month when the schedule for 3 months from now opens. I've done so each month on a variety of days and either the phone rings (I wait for at least 10 rings before hanging up), or all the appointments are booked.

Sometimes people offer to call me; they never call back. One time the representative told me he would write my name on a Post-it and stick it to his computer to remind him to schedule an appointment for me when the next schedule opened—that was months ago. He said that’s the system they have; there is no system set up to manage established patients with orders on file for follow-ups or other appointments. Unlike other departments, it's primarily self-scheduling--it falls on the patient to call to schedule.

I wish I could say this was the only barrier I’ve hit, but it’s not:

-I was initially told numerous times when I established care: “The good thing is, if these consultations can’t happen in-person, they can all be done by telehealth.” It's part of why I chose this clinic. Even the specific provider I met with told me this to my face. That was false and after traveling across the country, all my other appointments except the in-person therapy consultations I’d already completed were cancelled.

It took over a month (and a grievance with Patient Experience) for someone to follow up to explain what happened or what to do next.

-I requested a female PT because I’m a trauma survivor; they don’t have one on the EDS team. The PTs I met with were stuck on my central sensitization diagnosis, even though I told them I’ve been receiving treatment for it for years at the #1 rehabilitation hospital in the world (yes, higher ranked even than Mayo, but without EDS-trained PTs) and specifically needed help with hypermobility and POTS. Still, they insisted I wasn’t pushing myself hard enough, which is why I wasn’t getting better.

I also had a pelvic PT consultation and I cannot say I believe they had training in trauma-informed care, which was a shock at such a renowned medical center.

-The EDS Clinic then scheduled me with the wrong gynecologist (she does not treat my condition), which resulted in me having to start over with a new GYN.

-I have a confirmed diagnosis of POTS and so my referring local provider asked if I could see an autonomic neurologist. I was instead directed to the “2-day POTS Program,” only offered in person (when I was told it was available online), which requires an in-person evaluation with a psychologist. Two weeks before traveling there, I learned that was false—the psychologist could have done the consult virtually, which would have shaved days off my travel and hotel stay.

Days before the program, I was notified the program was cut to one day, instead of two.

-Then, the last straw: I was scheduled in Autonomic Neurology because of my confirmed POTS diagnosis, and they only allow in-person appointments. I made travel plans, and they cancelled my appointment without notifying me, and with no explanation. It just disappeared from my portal. Several inquiries and another grievance later, “the leadership” informed me they couldn’t validate my POTS diagnosis and would not be rescheduling the appointment. They said my test report "lacks numerical values," which makes no sense.

-I gave up after that and decided to complete the orders I could and schedule my final follow-up. I traveled back to Jacksonville last month for other appointments and hoped to do my EDS Clinic follow-up in person, thinking that way we could alleviate the miscommunication—I was told EDS Clinic follow-ups are only done virtually, no exceptions!

I’m still waiting. I called again today; the person I spoke to said he’ll see if there are other openings. I'll give him a chance, but this is now the 8th month of this happening.

Any tips? Or what’s been your experience seeking treatment for EDS? Have you gone elsewhere for care?

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 7 2:42pm

Hi @emo, you certainly have been on a journey of circular conversations, broken communication, and no doubt frustrations. Thanks for taking the time to outline the full story and timeline here. You and I have communicated in various discussions since you first joined a year ago, and I have tried to lend a hand to help things along.

As a trauma survivor, I want to acknowledge that you deserve trauma informed care. I regret that you find yourself suffering from betrayal trama because you feel unheard and that things are spinning in place. How might this change?

I don't think I'm telling you anything new in the remainder of my reply, but I also want to provide information to help others who are seeking care or are in care at the EDS Clinic at Mayo Clinic.

The EDS Clinic at Mayo is a "consultative clinic." This means success for ongoing care for EDS after consultation with Mayo Clinic's EDS clinic relies on established care with a local PCP for long-term follow-up and follow-through on the treatment plan. The EDS care team provides diagnostic evaluations and treatment recommendations to be carried on with primary care providers.

Ehlers-Danlos syndrome care at Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179)
· Ehlers-Danlos syndrome affects many different body systems, so your team will include different specialists involved in your care. At Mayo Clinic, your team may include specialists in medical genetics and physical medicine and rehabilitation — as well as vascular, cardiovascular, neurological, orthopedic and pediatric surgeons, if necessary.
· There are many different types of Ehlers-Danlos syndrome and the symptoms can overlap. Mayo Clinic physicians have extensive expertise in the condition, so they can quickly determine a precise diagnosis and treatment plan.
· Long-term management. The goal at Mayo Clinic is to propose a long-term management plan that can be followed by your local primary care physician.

Here is a link to the healthcare directory kept up-to-date by the EDS Society listing local providers.
- EDS Healthcare Professionals Directory https://www.ehlers-danlos.com/healthcare-professionals-directory/

How things work is explained in the 2 documents attached: Frequently Asked Questions and Your Next Steps: EDS Clinic

With respect to virtual appointments, I know that you were caught in the transition of federal and state executive orders (not Mayo Clinic specific) regarding exceptions that were made during the pandemic. In order to have out-of-state medical care, the provider must be licensed in the state where you live. Again, this is a regulation nation wide and not Mayo Clinic specific. Thus, like you, I am confused that you were told that EDS clinic only does virtual appointments. I would ask for clarification.

I see that poor communication or mixed messages has also occurred with autonomic neurology and gynecology. You probably won't like what I'm going to suggest, but have you talked to the Office of Patient Experience about these examples too? There seems to be a common and repeating theme here.

My tips would be to reach out to nurse Jessica Gehin via the patient portal (although I suspect you have) or call the clinic directly 904-956-8887.

Shared files

Frequently Asked Questions Ehlers-Danlos Syndrome (EDS) Clinic (Frequently-Asked-Questions-Ehlers-Danlos-Syndrome-EDS-Clinic.pdf)

Your Next Steps EDS_ Ehlers-Danlos Syndrome Clinic (Your-Next-Steps-EDS_-Ehlers-Danlos-Syndrome-Clinic.pdf)

REPLY
1 reply
emo | @emo | Aug 31 5:27pm
In reply to @colleenyoung "Hi @emo, you certainly have been on a journey of circular conversations, broken communication, and no..." + (show)
@colleenyoung

Hi @emo, you certainly have been on a journey of circular conversations, broken communication, and no doubt frustrations. Thanks for taking the time to outline the full story and timeline here. You and I have communicated in various discussions since you first joined a year ago, and I have tried to lend a hand to help things along.

As a trauma survivor, I want to acknowledge that you deserve trauma informed care. I regret that you find yourself suffering from betrayal trama because you feel unheard and that things are spinning in place. How might this change?

I don't think I'm telling you anything new in the remainder of my reply, but I also want to provide information to help others who are seeking care or are in care at the EDS Clinic at Mayo Clinic.

The EDS Clinic at Mayo is a "consultative clinic." This means success for ongoing care for EDS after consultation with Mayo Clinic's EDS clinic relies on established care with a local PCP for long-term follow-up and follow-through on the treatment plan. The EDS care team provides diagnostic evaluations and treatment recommendations to be carried on with primary care providers.

Ehlers-Danlos syndrome care at Mayo Clinic (https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179)
· Ehlers-Danlos syndrome affects many different body systems, so your team will include different specialists involved in your care. At Mayo Clinic, your team may include specialists in medical genetics and physical medicine and rehabilitation — as well as vascular, cardiovascular, neurological, orthopedic and pediatric surgeons, if necessary.
· There are many different types of Ehlers-Danlos syndrome and the symptoms can overlap. Mayo Clinic physicians have extensive expertise in the condition, so they can quickly determine a precise diagnosis and treatment plan.
· Long-term management. The goal at Mayo Clinic is to propose a long-term management plan that can be followed by your local primary care physician.

Here is a link to the healthcare directory kept up-to-date by the EDS Society listing local providers.
- EDS Healthcare Professionals Directory https://www.ehlers-danlos.com/healthcare-professionals-directory/

How things work is explained in the 2 documents attached: Frequently Asked Questions and Your Next Steps: EDS Clinic

With respect to virtual appointments, I know that you were caught in the transition of federal and state executive orders (not Mayo Clinic specific) regarding exceptions that were made during the pandemic. In order to have out-of-state medical care, the provider must be licensed in the state where you live. Again, this is a regulation nation wide and not Mayo Clinic specific. Thus, like you, I am confused that you were told that EDS clinic only does virtual appointments. I would ask for clarification.

I see that poor communication or mixed messages has also occurred with autonomic neurology and gynecology. You probably won't like what I'm going to suggest, but have you talked to the Office of Patient Experience about these examples too? There seems to be a common and repeating theme here.

My tips would be to reach out to nurse Jessica Gehin via the patient portal (although I suspect you have) or call the clinic directly 904-956-8887.

Jump to this post

Hi @colleenyoung -

It's okay not to reply. I feel badly for not responding, and I think it's only fair. It's one thing to share negative feedback, but I always want to give context and also share the positive or follow up.

Thank you, as always, for your reply and suggestions for moving forward. I'm sorry I didn't respond. I think at the time I was so frustrated and deeply disappointed looking back at how things have gone over the last over a year now since I started this journey with the EDS Clinic. The one thing I could think of that I hadn't yet done and was still in my control was to share my story so that others considering the EDS Clinic might have more information than I did and be able to ask the right questions, and in hopes that it might go toward the positive growth of the clinic.

-I really do appreciate you offering to assist me last year. Although you're not based in Jacksonville, you were the one person who stood up to say: "I can help," and I've always thought that represented the "Mayo spirit" at it's best.

It's not your fault that follow-up still didn't occur even after you attempted to assist me in connecting with the EDS Clinic. But I think the fact that you reached out to try to help me, and it still didn't result in communication kind of illustrates the point I was trying to make about the lack of follow-up. (After you contacted them on my behalf, I still didn't hear back, so I ultimately submitted a grievance to the Office of Patient Experience.)

-Thank you for acknowledging I deserve trauma-informed care. (Really, everyone does 🙂 As for how this might change: One of the easiest ways to support trauma survivors, even without knowing someone's history is to be transparent about what to expect, provide clear expectations, and as much as possible, stick to them, or be honest when plans must change. This levels out some of the uneven distribution of power between patient and provider, especially at such a revered place as Mayo, because it can empower us to make decisions about how to approach the appointments, tests, etc. It gives me the ability to ask questions, and make choices about how prepare myself so I can make sure I feel as safe and comfortable as possible--before I'm in a position that is triggering.

REPLY
emo | @emo | Aug 31 5:32pm

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.

REPLY
1 reply
emo | @emo | Aug 31 5:33pm
In reply to @emo "PART 2 I know from my first experience that from the outside looking in, everything from..." + (show)
@emo

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.

Jump to this post

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.

REPLY
emo | @emo | Sep 4 5:46pm

Thank you Colleen and others for your support. It means a lot to me.

I am fresh off my "final" follow-up with my provider from the EDS Clinic--it literally wrapped up an hour ago, so I wanted to share that here for closure in case anyone else stumbles upon this post in their EDS journey.

I still feel sad and disappointed about how things unfolded. And it was honestly really hard as I prepared for the appointment to relive and reflect on the hurt that accumulated through the evaluation/consultation process. I started this journey almost three years ago when I thought I'd won a golden ticket getting on the waiting list, and then again when I scheduled my appointments. And a lot of what happened afterward was crushing.

Even if I didn't gain the information or treatment plan, or even in some cases, the consultations promised, I still gained valuable context and insights about my conditions. I was nervous because I was as honest as I could be in a pre-appointment letter to my provider, and one never knows how critical feedback will be received, plus it's intimidating to to share that feedback directly with a provider, especially when care for connective tissue disorders is in such short supply--did I really want to risk what little access I had?

But my provider acknowledged the "administrative problems" I experienced, and apologized for how it affected me, especially for someone they said puts so much thought and care into my appointments. (One kind of has to in this situation because in many ways folks with EDS/HSD are very much alone in navigating this.) And that mattered. They also commented I had "good care," and I don't know that I'd characterize it that way. I think the care they hoped to provide suffered and in some situations caused harm because they didn't "see" me and instead saw the profile of a "typical" EDS/HSD patient on an assembly line track through the consultative process. That was the last thing I expected. They didn't mean harm, but it doesn't erase what happened either.

Today, my provider attempted to answer my medical questions. This was limited given the limited information I gathered, but I appreciate that my questions and concerns were prioritized and valued. I know at least they're committed to doing better. Thank you all for your support during this challenging time.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 4 6:02pm
In reply to @emo "Thank you Colleen and others for your support. It means a lot to me. I am..." + (show)
@emo

Thank you Colleen and others for your support. It means a lot to me.

I am fresh off my "final" follow-up with my provider from the EDS Clinic--it literally wrapped up an hour ago, so I wanted to share that here for closure in case anyone else stumbles upon this post in their EDS journey.

I still feel sad and disappointed about how things unfolded. And it was honestly really hard as I prepared for the appointment to relive and reflect on the hurt that accumulated through the evaluation/consultation process. I started this journey almost three years ago when I thought I'd won a golden ticket getting on the waiting list, and then again when I scheduled my appointments. And a lot of what happened afterward was crushing.

Even if I didn't gain the information or treatment plan, or even in some cases, the consultations promised, I still gained valuable context and insights about my conditions. I was nervous because I was as honest as I could be in a pre-appointment letter to my provider, and one never knows how critical feedback will be received, plus it's intimidating to to share that feedback directly with a provider, especially when care for connective tissue disorders is in such short supply--did I really want to risk what little access I had?

But my provider acknowledged the "administrative problems" I experienced, and apologized for how it affected me, especially for someone they said puts so much thought and care into my appointments. (One kind of has to in this situation because in many ways folks with EDS/HSD are very much alone in navigating this.) And that mattered. They also commented I had "good care," and I don't know that I'd characterize it that way. I think the care they hoped to provide suffered and in some situations caused harm because they didn't "see" me and instead saw the profile of a "typical" EDS/HSD patient on an assembly line track through the consultative process. That was the last thing I expected. They didn't mean harm, but it doesn't erase what happened either.

Today, my provider attempted to answer my medical questions. This was limited given the limited information I gathered, but I appreciate that my questions and concerns were prioritized and valued. I know at least they're committed to doing better. Thank you all for your support during this challenging time.

Jump to this post

Thank @emo for circling back to share about the final consultation and close the loop on your experience. It sounds like you're left with only a half satisfactory feeling. I'm confident that your careful and considered feedback was heard and appreciated. While this does little to change the past, it helps improve patient care for future patients. Thank you for that gift.

I appreciate your balanced views of the situation and that you can still say "I still gained valuable context and insights about my conditions."

You are a stong person and an appreciated advocate.

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