Patient Advocacy – Standing up for Yourself – Part 1

Galatians 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up

Patient Advocate Tool 1: Persistence

As I sit here writing, my real focus is listening for the phone to ring.

Again.

After multiple: dropped calls, voicemail messages left, pacing around the house, notes taken, marked out, and retaken, being forwarded to yet another person in the company, unanswered questions, questions answered wrongly, frustration mixed with prayers for help and … I’m ready to give up, eat ice cream and chips, and watch TV.

Again.

But I don’t because patient advocacy demands persistence.

Persistence in making those calls. Again. And again. And again.

Persistence in asking those questions to people and again, to their supervisors and again, to their supervisors who finally can answer them.

Persistence in maintaining my cool in making those calls, asking those questions, and repeating the answers that I’ve said at least ten times before.

Yet even me, who’s been called tenacious and bulldog many times before, is weary of being persistent. But I know well that persistence is one of the most essential tools in my toolbox for moving forward to health as a patient and patient advocate for others.

Thankfully, I’ve been blessed with some incredible doctors and their staff who truly care. But I am not their only patient. They want the best for me but there are so many of us and so little time. Thus, I am my best advocate when it comes to my care or care for those I stand up for as advocate.

I have to ask the questions. Until I understand the problem, the answer(s), and the plan for help.

I have to make the calls. Until I know the problem, the answer(s), and the plan for help.

I have to keep standing up. Until I know the problem is fixed, the answers fulfilled, and the plan is helping.

There is no other way through this.   

How appropriate (or ironic?) that I am called a patient since patience is my greatest problem. And my greatest need, especially when I don’t want to admit it.

Persistence demands patience with God, others, and yourself.

Patience in persistence requires grace.

“You can catch more flies with honey than vinegar”.  This is both true and hard simultaneously. Persistence requires my energy, time, and attention. Grace requires my reliance, trust, and faith. I can make those calls, ask those questions, and do them again and again with persistence. Yet grace lets me see my needs while seeing the needs of those with whom I’m talking. Yes, I’m not being ignored or dismissed. Yes, they have unanswered questions and need answers just like I do. Yes, they are weary of all of this, just like me. Yes, they could be having a rough day as I am. Yes, Jesus loves them as much as He does me. And most importantly, they need grace for today and hope for tomorrow, just like me.

So here I am, wearily sitting at my computer in my pajamas with my phone, still waiting for that call while praying for strength, patience, and grace. I need all of these now so I can be persistent yet kind in asking and answering and waiting again, and praying without ceasing (see Philippians 4:6-7).   

A plan for practicing persistence in patient advocacy*:

1. If you have a question about a medicine, you have to make All. The. Calls.
   1. Calls to your doctor’s office to ask how this medicine is supposed to work. Thank the person with whom you spoke. If you have been kind during the call, you can also say “may God bless you today”.  
   2. Calls to your pharmacist to ask how to take the medicine or side effects and what to do about them. Thank the person with whom you spoke. If you have been kind during the call, you can also say “may God bless you today”.

• 2. If you have a question about getting approval for a medicine (or a procedure), you have to make All. The. Calls.
  • a. Pray for patience and grace. For yourself and for whom you will be speaking.
  • b. Calls to your pharmacist (or specialist or hospital) to see if the medicine (or procedure) has been ordered. Write down the name of the person you spoke with, the date and time, and any information (phone or fax numbers, case or reference numbers). Thank the person with whom you spoke. If you have been kind during the call, you can also say “may God bless you today”. Remember, you might be the only kind person they work with today.
  • c. Repeat step a.
  • d. Calls to your insurance company to see if the medicine (or procedure) has been approved. If it has been denied, ask why and how to fix this. Write down the name of the person you spoke with, the date and time, and any information you received from the call (other phone or fax numbers, advice, case or reference numbers). Thank the person with whom you spoke. If you have been kind during the call, you can also say “may God bless you today”. Remember, you might be the only kind person they work with today.
  • e. Repeat step a.
  • f. Calls to your doctor’s office to follow-up to see if they have done what is needed by the insurance company for approval. Write down the name of the person you spoke with, the date and time, and any information you received from the call (other phone or fax numbers, advice, case or reference numbers). Thank the person with whom you spoke. If you have been kind during the call, you can also say “may God bless you today”. Remember, you might be the only kind person they work with today.
  • g. Repeat steps a. through f. as many times as it takes for the medicine (or procedure) to be approved.
    • Always have ready your notes of information that you’ve taken from the previous calls. If possible, ask to speak to the person you spoke to earlier and begin your conversation with him or her by thanking them for helping you again.
    • Be prepared to go through all the same information of name, insurance number, phone number, etc. that you did earlier. Reference your earlier calls by date, time, and person you have listed in your notes. They don’t forget you on purpose; you are not their only patient.
    • And yes, take those deep breaths of prayer in and out during the phone calls too…

*Many times this plan will need to be repeated again later today or tomorrow until approval is granted. Be sure and bookend your times on the phone with self-care in whatever way(s) that brings rest for you and your soul.

Please post tips that you’ve learned from about being a patient or patient advocate in the comment section so we can all benefit. Thank you!

Please share this post with others that can be helped by it too.

Matthew 11:28-30

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

written by and copyrighted to Beth Madison, Ph.D., 2021