Kristina Kelly, a patient advocate, shares how connecting with the MG community, researching providers, and asking the right questions can help patients find care that truly meets their needs.
Transcript
What I like to do is to go to the MG community. I like to reach out, you know, on those forums and say, “Hey, I live in XYZ state. I’m really struggling with my neurologist. Does anybody else have any recommendations?”
And then I take those recommendations, go to Google, put them in there, and look at the health grade reviews. Read those reviews, not just see, “Oh, they have 4.1 out of 5 stars.” But what are those reviews saying? Are they saying that they treat MG patients?
I go to PubMed, I type in their name, I see, are they up to date with the latest research? Are they participating in MG research? And then I call those offices and I say, “Is so-and-so doctor accepting new patients? What is the way? Do you accept my insurance?” And I’m doing all that while I’m keeping my current provider.
I may even have an appointment on the book, so I wait until I have done all the research. I found the new provider, I have gotten the referral, I have an appointment on the book with them, and I still, even to that point, keep the bad provider until I have that new patient appointment.
Hopefully it goes much better, and after that appointment I then will call the previous office, cancel my appointment, and say, “You know, we have a difference in how we’re perceiving care, and I’m no longer going to be a patient at this practice.”