Medical Guidance

This really resonated with me. As someone stepping into independent advocacy, I’ve seen how overwhelming the system can be for families. This work matters, and it’s needed more than ever. Thank you for speaking on it so clearly. I shared this on my LinkedIn post. I hope you don't mind. People should read this to understand what is happening, so change can take place. Again, great article!

Leona — what a GREAT and important topic!!! Thank you so much for sharing it.

If you'd like, you may also share it as a blog post. If you need help doing so, just email me at help@gnanow.org and I'll show you how.

Thank all of you, so much, for your input. It means the world to me how thoughtful you have all been in trying to contribute positively to this situation.

You all are echoing something I knew from the start: it's all about how she's framed. It was my goal from the start to figure out what angle I can take...how to change how the healthcare system is seeing her. Perspective rules everything, doesn't it? And as an advocate, and a nurse, my goal is always collaboration first...I don't want to go into this meeting opposing things. That won't get my client what she needs.

You all have given me several excellent pieces of information and things to be thinking about. Though I have so much experience, I will constantly be learning and leaning into this amazing community.

Depending on how this meeting goes tomorrow, I may call on those of you who have offered to assist. As a type A personality with a fiery passion for this, I absolutely need to make sure I've done everything I could. My conscious won't allow anything less.

AnnMarie — please do share via the private facebook. All thoughtful comments/advice is welcome.

Again, thank you.

Hi Blaire,

I spoke in depth with the girl's aunt when they were searching for an advocate. I am so sad you are still running into denials. So many wrong steps have been taken when this family is willing to do anything for her. What is wrong with people!?!?

I spoke with some contacts who were willing to help as best they could. I am happy to pass them on to you.

I am not nearly as capable as you with this case, but I am here to lend a familiar ear. I am also available if the family needs anything I can help with for caregiver support.

Thank you for sharing this case and for using PA360º as a thoughtful sounding board. Your approach reflects both humility and resourcefulness. Creating space for peers to weigh in not only opens the door to new perspective, but can be grounding and clarifying in complex situations like this. Even advocates benefit from the insight of other advocates. I appreciate your openness and commitment to getting this right, Blaire.

As a critical care nurse and a catastrophic care nurse case manager, I thought I knew the healthcare system, but then I became a patient and saw it from a completely different perspective.

After surviving brain cancer, I pivoted my practice to patient advocacy to help people (patients and caregivers) find the information and tools they could use to be their own best advocate. Like you, I found it eye-opening to be on the other side.

Anne

What a GREAT question, CarolAnn! I hope others will read the full question and lean into the conversation!

I'd also be super curious how many advocates were PATIENTS FIRST, then healthcare workers, now professional advocates.

Even another connection we have, patient transport. The next time we make a trip to Lexington, I am definitely going to have to make a side trip to meet in person for advocacy discussions over a cup of coffee.

Hi, Laurie! i hope folks jump in and join the conversation!

In the mean time, in case you've not used our site this way yet, here's a search specifically for 'oncology':

gnanow.org/advocates?search_type=help_text&help_text=oncology&locations=

Hi, laurie! WELCOME and thanks for making the welcome post!

two quick suggestions — if you're looking for oncology advocates to help you make connections, could I suggest either changing the title/ heading at the top of this post to clearly say that, or a new post with that specific question being SUPER clear? (If you need help putting a heading on the post, just let me know and I can do it for you.)

Second, your photo seems to have zoomed in crazy close on whatever the image was, and isn't visible. could you edit your post and replace it?

Cheryl, thank you SO much for sharing!!! It is so informative and helpful.

Great experience, Cheryl....learning onsite with the entire team is so important.

Val, Thank you so much for sharing this. It's a good conversation starter, and I hope others will join.

Thank you for sharing, Lynn!

AnnMarie — email me at StepwisePatientAdvocacy@gmail.com to discuss!!!

WELCOME! Nancy, we're glad you're here!!!

We would love you to start a conversation about your areas of expertise — whether in the special care and aging space about our providign advocacy for our aging population, or ehre in medical guidance general that is informative — or better yet opens a discussion — about caring for all of us dysautonomics in the world (i'm an O.H. patient and my daughter is a hypertensive non-hyperadrenergic POTS patient)!

Thank you!

Anne, thanks so much for sharing your input! It's so helpful.

Thank you also for volunteering your time to support our bloggers!

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Advocates who want to learn more about #MedicalTourism, please make sure to register for NAHAC's webinar on January 20, 2026. A lot of great information to come!

Kimberlie — we have several advocates in this area. You can find three of them by searching the GNA site by doing a problem/condition search for tourism or for «medical tourism» in quotes. I believe we have at least 2 more, but sadly their profiles don't have these keywords, and i can't recall what they might say. (Which is why we push so hard about keywords now, in onboarding!)