Continuing Care Between Mayo & Local Providers for MM

@analisag
It seemed like the least confrontational means of trying to deal with a delicate situation. Escalate as necessary.

I'm very non-confrontational so I love this approach. Thank you again so much, @kjoed53!

@analisag
Sounds like if you and I got into an argument, no one would win...lol

Hi folks!
I'm wondering if I can get your advice here once again. I did reach out to the Office of Patient Experience, and they were very timely in their responses. They said to process my concern, they needed to reach out to my mother which they did a few days later.

I wasn't present when my Mom spoke with them, but my understanding of the conversation from her is that she told them she felt "comfortable" where things were with the Mayo specialist. She felt comfortable because the nurse who has provided us insufficient (in my opinion) guidance in the past had confirmed that they could in fact give my mother advice on her treatment, but couldn't actively treat since she's out of state. The nurse said this only after my mother very politely expressed concerns to them about no longer getting the treatment she feels she should be getting (but she didn't even say it that directly).

The reason I'm resurrecting this is because my Mom again reached out to the Mayo specialist for advice about a side effect she's continuing to have (itchy skin all over) as a result of her MM treatment. A PA at her local provider's office (non-experts on MM) told my mother to stop her oral chemo pill and see if the itching stops (and to try using Claritin and Benedryl). My Mom then asked the Mayo specialist to confirm if this is his advice too. The Mayo nurse responded VERY quickly to my Mom's message (within 15 minutes) and said this "sounded great" and was aligned with the sort of recommendations the Mayo doctor typically makes for the patients fully under his care.

I have a lot of concern about (1) my Mom stopping a key part of her treatment based off of a PA's advice (this is nothing against PAs! This cancer just requires such specialized treatment, as I understand it.); (2) what feels like partial or insufficient answers from the Mayo nurse; and (3) the lack of clarity on the Mayo specialist's role here--I'd like his advice on med changes, but if this is truly inappropriate to assume he'd provide input I can figure something else out (I guess).

So my questions for you all are: am I crazy or does this truly not seem to be in line with how care for out-of-state patients should be coordinated? And do you have any advice on how to continue to pursue this with the Office of Patient Experience if my sweet Mom is too worried about being a burden to people to say anything to Mayo herself?

Everyone has been so helpful here. I hope it's ok that I'm going to tag the following people specifically: @kjoed53 , @colleenyoung , @gingerw , and @loribmt

Thanks everyone! I'm sorry if I am crazy or making a big deal out of small stuff.

Hi folks!
I'm wondering if I can get your advice here once again. I did reach out to the Office of Patient Experience, and they were very timely in their responses. They said to process my concern, they needed to reach out to my mother which they did a few days later.

I wasn't present when my Mom spoke with them, but my understanding of the conversation from her is that she told them she felt "comfortable" where things were with the Mayo specialist. She felt comfortable because the nurse who has provided us insufficient (in my opinion) guidance in the past had confirmed that they could in fact give my mother advice on her treatment, but couldn't actively treat since she's out of state. The nurse said this only after my mother very politely expressed concerns to them about no longer getting the treatment she feels she should be getting (but she didn't even say it that directly).

The reason I'm resurrecting this is because my Mom again reached out to the Mayo specialist for advice about a side effect she's continuing to have (itchy skin all over) as a result of her MM treatment. A PA at her local provider's office (non-experts on MM) told my mother to stop her oral chemo pill and see if the itching stops (and to try using Claritin and Benedryl). My Mom then asked the Mayo specialist to confirm if this is his advice too. The Mayo nurse responded VERY quickly to my Mom's message (within 15 minutes) and said this "sounded great" and was aligned with the sort of recommendations the Mayo doctor typically makes for the patients fully under his care.

I have a lot of concern about (1) my Mom stopping a key part of her treatment based off of a PA's advice (this is nothing against PAs! This cancer just requires such specialized treatment, as I understand it.); (2) what feels like partial or insufficient answers from the Mayo nurse; and (3) the lack of clarity on the Mayo specialist's role here--I'd like his advice on med changes, but if this is truly inappropriate to assume he'd provide input I can figure something else out (I guess).

So my questions for you all are: am I crazy or does this truly not seem to be in line with how care for out-of-state patients should be coordinated? And do you have any advice on how to continue to pursue this with the Office of Patient Experience if my sweet Mom is too worried about being a burden to people to say anything to Mayo herself?

Everyone has been so helpful here. I hope it's ok that I'm going to tag the following people specifically: @kjoed53 , @colleenyoung , @gingerw , and @loribmt

Thanks everyone! I'm sorry if I am crazy or making a big deal out of small stuff.

@analisag, if this were me (or on behalf of my mom), I would want to hear from the prescribing doctor before discontinuing chemotherapy treatment. It sounds like you are concerned that the nurse responded without consulting the doctor.

Are you or your mother able to communicate with the team directly in the patient portal?

@analisag
It seems to me that your main concern is that you are working with a local PA, and not an MM specialist. Can you request a referral to a local hematologist-oncologist? If not, is there a teaching hospital near enough to utilize their expertise? I'm in NJ and I'm using a local Cancer center that is not well known but has some very competent doctors.

@kjoed53 thank you so much for your response! My mom is under the care of a local hematologist. I’ve been unhappy with the care he provided for her in the past (prior to the MM diagnosis), which is a factor here. There are no MM specialists in the state my Mom is in, which is why she went to the Mayo specialist.

@colleenyoung thanks so much for your response. The communication is taking place in the Mayo patient portal. The nurse is (seemingly) not passing along the concerns to the doctor, but simply responded with how she understands they often do things.

I can recommend that she confirm stopping the meds is ok by her local hematologist, but he’s not an MM expert, which is why I’m eager for the Mayo specialist to advise on this.