Medical Guidance

Terry, your link is not working.

CONGRATS TERRY!!!

www.facebook.com/share/p/18MJ57Drmm/

Hi, Lorna! We've just started a quarterly gathering of the social workers that are plugged into GNA now. Our next meeting is in October. Check an eye out on the GNA closed FB group as well as here. Welcome!

Hi Rachel. I recently started taking clients in need of surgical companion and/or medical travel logistics services. My specialty is with patients needing craniocervical fusion, Chiari decompression, tethered cord, styloidectomy, vascular decompressions as I have experienced those myself. I recently retired and am able to travel with those needing companionship. I am not sure if I can share my website here, new to GNA and so grateful! Cyndi Eide

Hello Rachel! I think I responded to your post on FB, but haven't had a chance to reach out — the patient advocacy company that I work for, Norbella Health, specializes in EDS.

You can check out our team here:
www.norbellahealthadvocates.com/team

I am about to go on leave, so I'll circle back around to you when I get back, but Caroline Kim, the founder or Maggie Buckley (she's an EDS powerhouse, has been involved in many different EDS organizations over time) would be great people to connect with to discuss forwarding potential clients.

Hello! I currently have a few openings. Specializing in diagnostic navigation, symptom pattern mapping, mayo clinic prep. Experience with EDS, MCAS, POTS, rare/hard to diagnose.

Thank you for sharing such a powerful and personal story. Your message is an important reminder that every patient deserves dignity, respect, and compassionate care, regardless of their size or health condition. I appreciate your willingness to speak up for those who often feel unseen or unheard. You are a force!!!

Dalia,
First, i'm so incredibly sorry for what your family went through. NO ONE should ever be treatd that way, for any reason whatsoever.

Second, YES! THANK YOU for saying what is so often unsaid — that weight is about so much more than willpower.

My youngest was a competitive bicyclist. She regularly went, literally 100 miles in a day on her bike. When we were seeing docs about her post-exertional malaise and her orthostatic intolerance, EVERYONE tried to blame her weight. When i explained how fit the girl was, then they would blame overtraining and yet also somehow come back to it being due to her weight. Drove me CRAZY and drove her away from medical care for a long time.

THANK YOu for saying what needs to be said.

I do not know any SLPs in that area, however, you can check the state licensing board to see if they have a directory. shp.ohio.gov/for-the-public

also, here are advocates within 75 miles of that location that may have some guidance for you:
gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Columbus%2C+OH+43085%2C+USA&distance=75

Here are adovcates who are m ost likely to have those connections:

Angie Galatas, SLP gnanow.org/advocates/medi.html
Shlomit Liberty, SLP gnanow.org/advocates/shlomit.html
Hannah Klassy, SLP of Dementia Dimensions gnanow.org/advocates/hannah-klassy.html

Karen, this is GREAT! Would you consider also making it a blog post with us? in your «gna dashboard» is the blog creator. You can simply copy/paste it there, do any edits you need.

At the BOTTOM you are welcome to write a brief bio and to include information on your free resource site.

This is very helpful. Thank you for sharing!

I will keep my ears open and if I think of anyone or hear of anyone I will send them your way.

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.

Lynn, Glad to know you're here. CPOs are so important! I see a lot of ortho, SCI, neuro, and TBI — so I imagine we may have some crossover. I'll be keeping you in mind for a complex CPO case.

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.