I’m writing to inquire about caregiver support in the form of a Care Coordinator or Patient Navigator to assist with navigating the healthcare system.
My mom is my grandmother’s “person.”
My grandma lives independently in a retirement community.
My mom, among other tasks, takes my grandma to her medical appointments and plays a major role in communicating with her healthcare providers.
In the past couple of years my mom has experienced a significantly challenging time navigating the healthcare system- despite her healthcare background and high level of education. She continues to face barriers to my grandma receiving necessary healthcare. For example, my grandma has seen her PCP for months about an ongoing and continually worsening skin rash. The PCP has made referrals to different specialists over the months. Barriers include getting timely appointments scheduled with the specialists (often it is a 4+ month wait- and when you have a total body rash it cannot wait 4 months). Also, sometimes the referral gets lost between the PCP and specialist. The same goes for laboratory results being communicated to different providers. There have been numerous repeat lab draws solely because nobody could find the results of the labs that were already drawn. My grandma has been suffering for 6 months now and we are no closer to relief than we were at the beginning.
This was all a problem before COVID and has only intensified since.
I could go on and on with examples of significant barriers she’s faced.
My mom is a fierce advocate and needs help coordinating the care recommended.
My mom works full time, and babysitting referrals and prescriptions and labs on top of attending appointments has been and continues to take a significant toll.
Are there any care coordinator/patient navigator resources available to help overcome the plethora of barriers that are present in the healthcare system?
Any insight you can provide is greatly appreciated.
They hold the keys to getting us more testing, seeing specialists.
But--they are OUR employees. I have fired more than one PCP. You do need an advocate sometimes. I am my own, but I am also my DH's. He'll quietly sit and wait for a scrip refill or results iof a test b/c he thinks his PCP has him under her radar. She doesn't.
Every visit with her requires a FU call and sometimes being a tad snippy (which makes me uncomfortable).
My PCP, on the other hand, dxed my cancer in minutes. He jumped on the wagon and had me in for an ultrasound and an appt at our local cancer hospital while I was sitting in his office---crying. He called ME often and asked me to fwd all the test results to him as I went through chemo.
Yep, he's young, and he's going to get jaded, but right now I am the beneficiary of his kindness and whole-person TX.
2 of my kids are Drs. One is amazing, one is 'meh'. Just different personalities.
Agreed. Effective healthcare requires babysitting by the patient and/or their advocate.
I can 100% relate to feeling uncomfortable with sometimes having to be snippy to get what is needed. when my grandma has been hospitalized over the past couple of years, people who’ve come in the room always say to my mom and me “oh she has such great advocates,” but it honestly felt like a nice way to say “obnoxious and bitchy.” (Sorry for the swear).
If you have any pro tips for identifying an awesome PCP in the search for a new one, I’m all ears. Square one in the PCP search is daunting enough to make it impractical and a non starter.
Thank you again for your response.
Thanks again for taking time to respond. :)
I would look for one that is in a group where referrals can be done quickly and one that has a lab set up in the same system.
Does she actually need referrals to see a specialist or can she go to anyone that will accept her insurance? (I am assuming that Medicare is Primary and any other insurance is supplemental)
There are Health Care managers but from what you have said it sounds like your Mom is doing just as good of a job as they would do. It sounds like the problem stems from your PCP not the system itself.
I agree the PCP is dropping the ball and have suggested such. My grandma has been seeing this PCP for quite some time so there’s rapport there and my mom doesn’t want to start from square one in that regard either- especially if there are no guarantees of a new PCP being any better.
Thanks again for taking time to respond. :)
Thanks for your response. My grandma has Medicare. I don’t know for sure if that requires a referral, however I know a lot of specialists (dermatology, rheumatology, nephrology, cardiology) they’ve interacted with won’t schedule without the referral from PCP.
Have you run into that?
When you call to schedule without a referral, what do you say to get a timely appointment?
Thank you again for your response.
We have had appointments the next day because the primary doctor called to schedule it.
I wish that doctors were actually doctors and not referalists or specialists. Wish that they could do something besides push meds.
I hope that you find a doctor that won't let her suffer for months.