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Need help getting a Multiple Sclerosis specialist to care for my wife.
Visiting Mayo Clinic | Last Active: Oct 22, 2023 | Replies (6)Comment receiving replies
This is going to be way too long but I'll try and keep it short. My girlfriend's primary doctor has always been in Austin, MN about 23 miles from our home. She was referred to Mayo in Rochester, MN (about 26 miles from our house) for further testing. She was diagnosed with multiple sclerosis at the age of 31. At this time her primary doctor was retiring and she was wanting to have all her medical needs done in Rochester going forward. When diagnosed in Rochester the doctor made us feel like we weren't alone in this lifelong battle that there would be a team of experts that would help her. After leaving that appointment is when it all seemed to change. They said she should just continue using Mayo in Austin as its closer to our home.(its like a 2-3 min difference of a drive) She expressed how she would like all of her future appointments and treatments done in Rochester. I mean they are known as one of the best hospitals in the world it only makes sense. But unfortunately her request fell on deaf ears and she was referred to a neurologist in Austin, but her infusions would still be administered in Rochester. Well this neurologist openly admitted he didn't have much knowledge or experience when it came to MS. Any questions she had or ailments she would suffer he would have to send to the specialists in Rochester to get the answers which was not a timely process. She then requested a transfer to the Rochester doctors and "the board" denied her in Rochester saying they weren't taking new patients at this time?? Also was told only accepting patients that lived in Rochester. Mind you the head of "the board" was the same doctor that originally diagnosed her and made us feel so good about the team behind her. So eventually she found specialist in Minneapolis(2 hours from our house) but isn't a mayo facility. Still getting infusions done in Rochester. She tried again to be seen in Roch but was told that they were no longer treating patients with MS just giving the original diagnosis. Clearly thats not true. So how can I help her be seen by a specialist in Rochester regularly?? Is there something on her file saying don't accept this patient? So lost and makes no sense what so ever to me. Any help at all would be wonderful to our little family. Thanks, Tim.
Replies to "This is going to be way too long but I'll try and keep it short. My..."
@timbop, thank you for trying to explain the twists and turns of your girlfriend's health journey at Mayo Clinic between the Health System and Mayo Clinic in Rochester. @delphiniums is right that specialists at Mayo Clinic, including those in the Mayo Clinic Health System work collaboratively.
Your girlfriend has a neurologist at Mayo in Austin who has full access to his colleagues at Mayo Clinic in Rochester should he need to consult with them to provide top quality care for your girlfriend. This may be her best access to the team's expertise if there are no appointments currently available in Rochester and she will get care closer to home.
If you would like to speak with a patient advocate, I encourage you to contact the Office of Patient Experience.
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll-free)
Email: opx@mayo.edu
They can talk more specifically about your girlfriend's situation and ensure she is getting the best and most convenient care she deserves.
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Tim, I'm so sorry for you and GF, this must be beyond frustrating feeling like care has been put behind a wall. I'll say doctors are often not fully aware (or willing to acknowledge) the logistical limitations that come with such a large hospital — so they'll make promises that can't be fulfilled.
We've experienced that too, and it can be a real let down.
Rochester is one of the best in the nation, foremost because its specialists/nurses are *not* dealing with an over-exhaustive patient load. But this means triaging only the most urgent/risky cases to the most in-demand facilities and specialists.
Coming from a family of nurses, I understand how hard it is feeling like just "one of many" seeking treatment, and not getting the first pick of doctors.
Personally, we continue to have care and treatments for my husband split across two facilities (Mayo in Phoenix and Scottsdale, sometimes both in the same day). I don't think that's uncommon. Mayo will send you where resources are available.
But regarding the neurologist they gave you *not* specializing in MS...
Is there a better specialist at Mayo, in Austin, that you can ask to see?
Also, I wouldn't write off this neurologist's ability to conference with other Mayo specialists. My husband's doc conferences same day as our appointments. And you can message any of those specialists directly via the portal. Still not ideal, I know...
Personally, I would choose any Mayo specialist over a non-Mayo specialist, solely because they have such an extensive set of specialists and private research — and they really do take a collaborative approach to care. But I would suggest expressing your concerns to her current Mayo specialist and see what options he can give you.