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.

Interested in more discussions like this? Go to the Just Want to Talk group.

@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. 🙏

REPLY
@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. 🙏

Jump to this post

@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?

REPLY

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.

REPLY
@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.

Jump to this post

@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?

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

@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

REPLY

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

REPLY

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

REPLY
@judigirl1

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

Jump to this post

@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/

REPLY

My mom was told that she should have a surgery within 2 weeks of arriving at Mayo Clinic because radiation/chemotherapy didn't work for her. It's now been a month of additional tests and other appointments and no one is explaining why except for, "oh there was something I saw on your last test that I didn't like". She had numerous tests before arriving at Mayo and none indicated anything concerning. She didn't find out what her most recent biopsy was of until a day before the biopsy. The last biopsy she received doesn't even seem necessary for her surgery. And now they're telling her that she needs to wait another month before she can see an oncologist. Meanwhile she's in excruciating pain, taking lots of pain meds and barely sleeping. And doesn't seem to be getting very many answers. One nurse writes down her concern and says that another nurse will call her. Her scheduler just has nothing to say when she tries to tell her that another month is too long to wait, that she could be dead by then because of the fast growing tumor. It's all very frustrating because it feels like there's nothing any of us can do to get answers from her doctors and she could be dying for all we know.

REPLY
@atringas

My mom was told that she should have a surgery within 2 weeks of arriving at Mayo Clinic because radiation/chemotherapy didn't work for her. It's now been a month of additional tests and other appointments and no one is explaining why except for, "oh there was something I saw on your last test that I didn't like". She had numerous tests before arriving at Mayo and none indicated anything concerning. She didn't find out what her most recent biopsy was of until a day before the biopsy. The last biopsy she received doesn't even seem necessary for her surgery. And now they're telling her that she needs to wait another month before she can see an oncologist. Meanwhile she's in excruciating pain, taking lots of pain meds and barely sleeping. And doesn't seem to be getting very many answers. One nurse writes down her concern and says that another nurse will call her. Her scheduler just has nothing to say when she tries to tell her that another month is too long to wait, that she could be dead by then because of the fast growing tumor. It's all very frustrating because it feels like there's nothing any of us can do to get answers from her doctors and she could be dying for all we know.

Jump to this post

@atringas, I'm very sorry to hear that you're not getting answers and explanations that you and your family need right now. I strongly encourage you to contact the Office of Patience Experience.

Mayo Clinic 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 help mediate with communication. What kind of cancer does your mom have?

REPLY
Please sign in or register to post a reply.
  Request Appointment