Your PCP refers you to a specialist, let's say they are a headache specialist named Dr. H (for headache), to get help with your migraines that are common with your rare disease. Dr. H has no experience with your rare disease but is a headache specialist.
After seeing Dr. H, your PCP shares with you Dr. H decided that you don’t really have migraines and that you are a drug seeker.
We all know that our PCP’s are helpful when we have strep throat or need a referral to a specialist. But to be fully supported there are additional roles that are critical for your PCP to be engaged and willing to perform.
“Collaborative Partner - two or more parties engaged and working together on the same activity”
How many times have you brought up an issue only to have your PCP dismiss it and move on to their next item?
You are the main stakeholder in this relationship. It’s your health, your health care, and your life.
You are the expert on your body, your experience and most likely, your rare diseases.
So, what does it matter if your PCP isn’t treating you like a partner? Is it worth the effort to collaborate in this case?
Why yes it is…you need your PCP to bring their expertise in medicine to balance and complement your knowledge. Your PCP, more than any other doctor, provides continuous and comprehensive care for you.
“By working as collaborative partners, you not only reach better decisions but you share the burden and responsibility of making decisions and managing your heath care.”
If your PCP is unwilling or able to be a collaborative partner it’s time to have a discussion where you share what you are looking for in a collaborative partner and ask if they are willing to do this. If they are not, it may be time to find a PCP who is willing and able to work with you.
“Care Coordination – the deliberate organization of patient care activities between 2 or more participants involved in a patient’s care to facilitate the appropriate delivery of healthcare services.”
Two of your specialists have recommended new treatments but the pharmacist noted some concerns about the combination of the medications. You’ve tried calling your specialists but neither one wants to budge.
As a patient do you choose one medication over the other? Give up completely and not take either one?
When your PCP steps into the role of coordinating your care they are able to help handle and negotiate situations like this. Peer to peer conversations can be more effective and held at a higher level than a patient trying to do this.
A confident PCP who is part of a larger collaborative team will often take over prescriptions for you as your treatment stabilizes. This can be especially important when dealing with outside specialists who may have a hard time prescribing across state lines or with your medical system or insurance coverage.
“Your PCP is your guide who can keep an eye on all of the pieces including screening for non-rare disease issues and coordinating all your care.”
If your PCP isn’t coordinating your care it’s time to have a discussion and ask them if they are willing to do this. If they are unable or unwilling to do this perhaps it’s time for a new PCP.
“Has Your Back - to be prepared and willing to support or defend someone”
I woke up one day with incredible nerve pain in my neck and upper arm. Feeling a bit panicky because I recognized this as a symptom of my rare neurologic disease I realized that I had moved and no longer had a pain management doctor.
The knowledgeable neurologist’s first available appointment wasn’t for weeks. I sent a message to my PCP and she was able to see me the next day. Thankfully, she was willing to prescribe pain medications to cover me until I could do the follow-up.
She had my back…and what a difference that made to me.
Your PCP should be the first one to be prepared and willing to support and/or defend you.
If you are unable to get into a specialist in a timely manner for a time-sensitive issue, your PCP should advocate for you.
When another doctor, say in the ER or a new specialist, questions or denies one of your current diagnoses – your PCP should be there for and stand up for you.
When the insurance company requires a prior authorization or denies your prescription, your PCP should be willing to help appeal it.
“When your PCP is a trusted collaborative partner and they are coordinating your care, your PCP is perfectly positioned and willing to have your back.”
If your PCP doesn’t have your back it’s time to have a discussion and ask them if they are willing to do this. If they are unable or unwilling to step up and have your back perhaps it’s time for a new PCP.
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