Patient Advocacy or Patient Navigators at Mayo Clinic

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.

@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?

When I worked in healthcare elsewhere (quite sometime ago) there were outpatient Case Managers available (When a client's needs involved a skilled placement of a complicated nature, a Social Worker managed the client. Is this service available to patients at Mayo Clinics? My own observations for whatever it is worth was Sister Marie, in the Chaplain Department (this was in California) knew the system inside & out & was by far the best go to!

@linh, yes, these services exist at Mayo Clinic as well. Here are some options available at all campuses:
Social work: https://www.mayoclinic.org/patient-visitor-guide/minnesota/resources/social-work
- Specilized social workers are available in a variety of departments, such as oncology: https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
- Social work and case management https://www.mayoclinichealthsystem.org/locations/eau-claire/services-and-treatments/social-services
- Chaplain services https://www.mayoclinic.org/patient-visitor-guide/minnesota/resources/spiritual-religious-services
- Patient navigators https://connect.mayoclinic.org/blog/cancer-education-center/tab/patient-navigator/

To inquire about additional supports, you can also contact the Concierge Services: https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
They can help with everything!

Hoping for the best.

Hi @adb5678, I encourage you to share your experiences with Mayo Clinic's Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

They will appreciate the feedback, both the areas where you were disappointed as well as the praise for staff that made a positive difference and how.
Thank you.

I decided to alter. Truly hoping for the best.
Thank you.

How is your mom doing? Can I help connect you with other caregivers or people with a similar condition(s)?