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Continuing Care Between Mayo & Local Providers for MM

Posted by Ana @analisag, 4 days ago

tl/dr: Mom with multiple myeloma was receiving care at Mayo but recently returned to home state. Local providers are non-experts, and the Mayo support staff are referring Mom to local providers for side effects/new symptoms. How do out-of-town patients best coordinate care between their Mayo specialist and their local providers? What are reasonable expectations in terms of receiving treatment from Mayo Clinic specialist?

Hi there!

My Mom was diagnosed with multiple myeloma recently and was receiving care at Mayo Clinic in Phoenix until a few weeks ago. She had several complications so she stayed in Phoenix for several weeks, but she lives out of state.

She's now back in her home state, and we're having difficulty coordinating care between her Mayo specialist and her local providers. Her local providers seem ready and willing to work with Mayo. However, she recently reached out to her MM specialist in Phoenix via the portal and her concerns (about inflamed, weepy eyelids with styes) were, imo, dismissed by the nurse who responded (it's unclear if the doctor was consulted at all). The nurse said sorry to hear about the inflamed eyes and said to reach out to my Mom's local provider (not an MM expert, but a general hematologist who is following Mayo's plan of care).

This nurse has been dismissive and condescending to us previously and has left several questions unanswered (due to the complications my Mom had, we had a ton of questions), which has been a point of ongoing frustration. So I'm not sure how much that history is coming into play here, but having the local, non-expert hematologist consult on the care plan seems to me to be opposite what the MM specialist said to expect. I have a lot of concern about this because her local provider has already given her insufficient care on a previous condition she was being treated for (there's limited options for her in terms of other hematologist, which is why she's still seeing this one).

So, overall I'm wondering: how do out-of-town patients best coordinate care between their Mayo specialist and their local providers? What are reasonable expectations here in terms of continued treatment from Mayo specialist?

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Profile picture for Lori, Volunteer Mentor
Mentor
Lori, Volunteer Mentor | @loribmt | 3 days ago

Hi Ana, I’m so sorry your mom is having such a challenge now that she’s back home from her care at Mayo. From my own experience, Mayo works very closely with their patient’s home care provider for a smooth transition. It sounds as though your mom’s local team are more than willing to team up with Mayo.
So it’s on the Mayo end of things where there’s a glitch. I’m really saddened and shocked by the dismissive treatment your mom is receiving from the nurse! That’s not right and certainly isn’t the standard care protocol of Mayo Clinic.

Let’s get your mom the help and respects she deserves. What I’d suggest you do is contact the Office of Patient Experience
Phone number: 844-544-0036
Or, if you prefer written communication, you can use the online form provided on the webpage here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Will you please let me know what you find out?

REPLY
2 replies
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Ana | @analisag | 1 day ago
In reply to @loribmt "Hi Ana, I’m so sorry your mom is having such a challenge now that she’s back..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi Ana, I’m so sorry your mom is having such a challenge now that she’s back home from her care at Mayo. From my own experience, Mayo works very closely with their patient’s home care provider for a smooth transition. It sounds as though your mom’s local team are more than willing to team up with Mayo.
So it’s on the Mayo end of things where there’s a glitch. I’m really saddened and shocked by the dismissive treatment your mom is receiving from the nurse! That’s not right and certainly isn’t the standard care protocol of Mayo Clinic.

Let’s get your mom the help and respects she deserves. What I’d suggest you do is contact the Office of Patient Experience
Phone number: 844-544-0036
Or, if you prefer written communication, you can use the online form provided on the webpage here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Will you please let me know what you find out?

Jump to this post

Thank you so much for your thoughtful response, @loribmt! I really appreciate your encouragement and assurance that our experience seems atypical--I've been very surprised.
I'm eager to reach out to the Office of Patient Experience to offer feedback and tell them about our experience, but my Mom is hesitant. She'd going to reach out to the Mayo specialist and his team again before we try this option. I'm deferring to her here, but also encouraging her to offer feedback if/when she feels comfortable. I don't feel that I can offer feedback without her approval since she's the patient. But we'll see. Thank you again so much!

REPLY
2 replies
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Mentor
Ginger, Volunteer Mentor | @gingerw | 21 hours ago
In reply to @analisag "Thank you so much for your thoughtful response, @loribmt! I really appreciate your encouragement and assurance..." + (show)
Profile picture for Ana @analisag

Thank you so much for your thoughtful response, @loribmt! I really appreciate your encouragement and assurance that our experience seems atypical--I've been very surprised.
I'm eager to reach out to the Office of Patient Experience to offer feedback and tell them about our experience, but my Mom is hesitant. She'd going to reach out to the Mayo specialist and his team again before we try this option. I'm deferring to her here, but also encouraging her to offer feedback if/when she feels comfortable. I don't feel that I can offer feedback without her approval since she's the patient. But we'll see. Thank you again so much!

Jump to this post

@analisag While your mother is the patient, you are also involved, being a family member and caregiver. I am pretty certain your angle of the patient experience would be appreciated. ...just my thoughts...
Ginger

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kjoed53 | @kjoed53 | 12 hours ago

Maybe you can try reaching out not with a complaint, but moreso to get an understanding of how to be a good intermediary between Mayo and the local health care team because there's a gap in the communication. Maybe they can reach out to the nurse for their input. It might get you nowhere but you're choosing to walk the fine line between following your mom's decision and needing to see some progress in communication.

REPLY
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Moderator
Colleen Young, Connect Director | @colleenyoung | 11 hours ago
In reply to @analisag "Thank you so much for your thoughtful response, @loribmt! I really appreciate your encouragement and assurance..." + (show)
Profile picture for Ana @analisag

Thank you so much for your thoughtful response, @loribmt! I really appreciate your encouragement and assurance that our experience seems atypical--I've been very surprised.
I'm eager to reach out to the Office of Patient Experience to offer feedback and tell them about our experience, but my Mom is hesitant. She'd going to reach out to the Mayo specialist and his team again before we try this option. I'm deferring to her here, but also encouraging her to offer feedback if/when she feels comfortable. I don't feel that I can offer feedback without her approval since she's the patient. But we'll see. Thank you again so much!

Jump to this post

@analisag, your mom is wise to reach out to the Mayo Clinic specialist in charge of her care first. Please encourage her to share her feelings as well as getting her questions answered. Mayo Clinic wants to ensure that she has a smooth transition of care between Mayo and her local providers.

The Office of Patient Experience can assist as an intermediary should that be necessary after speaking with the team. As @gingerw points out, your feedback to Mayo is also valuable as a caregiver. I encourage you to provide it once you and your mom get this immediate need addressed according to her wishes. I can understand you wanting to let her be the driver of her care and communication with her care team. I bet she appreciates your support, guidance and respect.

REPLY
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hsminc | @hsminc | 6 hours ago
In reply to @loribmt "Hi Ana, I’m so sorry your mom is having such a challenge now that she’s back..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi Ana, I’m so sorry your mom is having such a challenge now that she’s back home from her care at Mayo. From my own experience, Mayo works very closely with their patient’s home care provider for a smooth transition. It sounds as though your mom’s local team are more than willing to team up with Mayo.
So it’s on the Mayo end of things where there’s a glitch. I’m really saddened and shocked by the dismissive treatment your mom is receiving from the nurse! That’s not right and certainly isn’t the standard care protocol of Mayo Clinic.

Let’s get your mom the help and respects she deserves. What I’d suggest you do is contact the Office of Patient Experience
Phone number: 844-544-0036
Or, if you prefer written communication, you can use the online form provided on the webpage here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Will you please let me know what you find out?

Jump to this post

@loribmt I have had excellent experience working with Mayo's office of patient experience. They are perceptive and also diplomatic. They solve issues.

REPLY
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