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Patient Advocacy or Patient Navigators at Mayo Clinic

Posted by fayrankin @fayrankin, Sep 4, 2011

My 87-year old mother just returned from what she describes as a chaotic, dis-organized and unsuccessful 2 day visit to Jacksonville. A friend took her as I live across the county but it appears if she is to achieve better satisfaction in her return visit that I am going to have to take an active role in finding out why her first visit was such a calamity and what the intent of her second visit ( a 12-hour round trip) is.

If anyone know of an appropriate office to contact within Mayos to begin my efforts to assist her which will include flying to Florida and accompanying her on the next visit. This is, of course, if there is a next visit. In many, many years, i have never heard such a dismal account of a Mayo visit.

Any advice will be appreciated.

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dianeadamson | @dianeadamson | Dec 14, 2020

@fayrankin

Hello. I was wondering if you were able to get a patient advocate? If so, how did you go about it? I hope your issues were resolved, and were able to get the care your mother needed. 🙏

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1 reply
Erika | @erikas | Dec 14, 2020
In reply to @dianeadamson "@fayrankin Hello. I was wondering if you were able to get a patient advocate? If so,..." + (show)
@dianeadamson

@fayrankin

Hello. I was wondering if you were able to get a patient advocate? If so, how did you go about it? I hope your issues were resolved, and were able to get the care your mother needed. 🙏

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@dianeadamson Welcome to Mayo Clinic Connect, a place to give and get support.

It sounds like you have information to give regarding patient advocates.

May I ask what brings your to Connect?

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vrtameshrew52 | @vrtameshrew52 | Nov 12, 2021

Never been to a place where care givers care so little about care. Scheduling schedules procedures I shouldn’t get; signs me up for medical follow ups to scans that don’t exist; tells me they’ll deny claims because Geico is now my health insurance while I’m strapped to an IV of premeds and Benadryl talking on the phone saying “repeat that?” Orders are not signed as a form of punishment for calling attention to problems; neurologist says I’m right handed when I’m left handed; Now I received a letter from Mayo admin. that I am a danger to staff. Seems the other way around. Get examined by NP who asks as I am leaving “did I just examine you?” Treatments leave me in perpetual pain and other NP tells me “I’m not a expert, ask your doctor” and then get three emails separate emails from nurses saying they’ll expedite my question to the doctor instead of just answering why I am so in pain. Bureaucracy is going to kill me before my cancer.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 12, 2021
In reply to @vrtameshrew52 "Never been to a place where care givers care so little about care. Scheduling schedules procedures..." + (show)
@vrtameshrew52

Never been to a place where care givers care so little about care. Scheduling schedules procedures I shouldn’t get; signs me up for medical follow ups to scans that don’t exist; tells me they’ll deny claims because Geico is now my health insurance while I’m strapped to an IV of premeds and Benadryl talking on the phone saying “repeat that?” Orders are not signed as a form of punishment for calling attention to problems; neurologist says I’m right handed when I’m left handed; Now I received a letter from Mayo admin. that I am a danger to staff. Seems the other way around. Get examined by NP who asks as I am leaving “did I just examine you?” Treatments leave me in perpetual pain and other NP tells me “I’m not a expert, ask your doctor” and then get three emails separate emails from nurses saying they’ll expedite my question to the doctor instead of just answering why I am so in pain. Bureaucracy is going to kill me before my cancer.

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@vrtameshrew52, I am so sorry to hear about your experience. I strongly suggest that you contact the Office of Patient Experience. A Patient Experience specialist will listen and address concerns about your care experience at Mayo Clinic and can help mediate on your behalt

To contact Patient Experience, please complete the online feedback form below and someone will contact you within three business days. Or if you prefer, you can call the phone number listed below to speak to a Patient Experience specialist by phone.

Here are all the ways you can contact them:

Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
Online form: https://mccoreprodcrmextncast.blob.core.windows.net/$web/ShareAConcern.html

Vrtameshrew, may I ask what type of cancer you have?

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1 reply
vrtameshrew52 | @vrtameshrew52 | Nov 12, 2021
In reply to @colleenyoung "@vrtameshrew52, I am so sorry to hear about your experience. I strongly suggest that you contact..." + (show)
@colleenyoung

@vrtameshrew52, I am so sorry to hear about your experience. I strongly suggest that you contact the Office of Patient Experience. A Patient Experience specialist will listen and address concerns about your care experience at Mayo Clinic and can help mediate on your behalt

To contact Patient Experience, please complete the online feedback form below and someone will contact you within three business days. Or if you prefer, you can call the phone number listed below to speak to a Patient Experience specialist by phone.

Here are all the ways you can contact them:

Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
Online form: https://mccoreprodcrmextncast.blob.core.windows.net/$web/ShareAConcern.html

Vrtameshrew, may I ask what type of cancer you have?

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It’s stage IV breast cancer. I’m tired of the silly pretense of care so don’t waste my time about how much you “care” long distance far removed from reality of the majority. I’ve tried all avenues and am only met with bureaucracy, ridicule, apathy and intimidation. Very tired.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 12, 2021
In reply to @vrtameshrew52 "It’s stage IV breast cancer. I’m tired of the silly pretense of care so don’t waste..." + (show)
@vrtameshrew52

It’s stage IV breast cancer. I’m tired of the silly pretense of care so don’t waste my time about how much you “care” long distance far removed from reality of the majority. I’ve tried all avenues and am only met with bureaucracy, ridicule, apathy and intimidation. Very tired.

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@vrtameshrew Here at Mayo Clinic Connect we are patients just like you. Some of us are family members of patients, some of us are both. We are not medical professionals, but are caring individuals.

Like you, I have had my share of uncaring people [professionals and lay people alike] talk to me about my health issues, all the way back to 1988! Over time, I had to learn to stand up for myself, and advocate for what would be the best treatment, even when I was sick, or hurting, or could barely focus my thoughts. Frustrating? You bet! Feeling like I was being ignored? Yep! So I had to go above those people and make my voice heard, loudly at times, even if it was only for the satisfaction that another patient might benefit from my bad experience.

Not feeling well makes the raw feelings more raw, don't they? I am undergoing chemo for a blood cancer, and there are days I just don't wanna. Adding to that is kidney cancer, which is another whole ballgame. So, I kinda get where you come from. I really hope you reread @colleenyoung's message and let the staff know how you were treated. And I really hope you'll let me know how I can help you.
Ginger

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Mentor
Laurie, Volunteer Mentor | @roch | Nov 13, 2021


fayrankin @fayrankin

As you can tell by comments, there are good and bad experience at Mayo. I have always felt respected and listened to. I did contact Patient Experience once and thought they fallowed up with my concern. I also agree that you need to be your own advocate.

Two suggestions for your mother:
1. Did she sign form to authorize you to her medical information? If she did, then I suggest you get authorized to see her medical information on Mayo Portal. Then you can see provider's notes, test results, suggestions, etc... It might help understand what happen. It may not answer your questions or concerns, but will give you more details.

2. And contact Patient Advocate as Colleen suggested. If your are not authorized to mother's information, they may not be able to tell you anything. Have to follow HIPPA rules.

Laurie M

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judigirl1 | @judigirl1 | Nov 13, 2021

Does anyone have experience with dysarthria? I have been told that’s what I have and it’s getting worse.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 13, 2021
In reply to @judigirl1 "Does anyone have experience with dysarthria? I have been told that’s what I have and it’s..." + (show)
@judigirl1

Does anyone have experience with dysarthria? I have been told that’s what I have and it’s getting worse.

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@judigirl1 -- I found some possible related information and a discussion you may want to read through where other members have discussed similar symptoms.

"Dysarthria and dysphagia occur frequently in Parkinson's disease (PD). Reduced speech ..." -- Speech and Swallowing in Parkinson's Disease - NCBI: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2784698/

Parkinson's and Speech/Swallowing Problems: https://connect.mayoclinic.org/discussion/parkinsons-and-speechswallowing-problems/

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