Patient Advocacy: How Important It Is

I have a heart condition that I was born with, and my husband has a chronic pain condition. This requires us to be fully informed on medications, treatments, and the doctors we choose to help us. Something we are learning fast is the importance of patient advocacy. What is it? The need to speak up and advocate or champion for yourself, because you know your body the best.

Road Trip, Vacation Override

Case in point: we are on a road trip that takes us to Canada and a few stops down the California coast. We visit Los Angeles, British Columbia, Colorado and Nebraska before coming home. It’s ambitious, I know.

Both of us take maintenance medications, and we wouldn’t have enough to last us the entire vacation. We were able to get a vacation override for those prescriptions. It took a little work with our insurance company, but it was worth it. We were allowed to pick up our refills early for the trip. All you have to do is call your insurance ahead of time and explain the details of your trip, along with any reasons why you couldn’t just fill prescriptions at your destination. For the smoothest experience, coordinate this with your doctor, as well, to make sure you have adequate refills. Then let your pharmacy know. They will be thankful for your grunt work.

Getting Pain Medications 1,000 Miles from Home

Well, as I stated earlier, my husband has a chronic pain condition, and he needs muscle relaxants and narcotics to be able to function. He’s on some pretty strong stuff, but the difference in his quality of life and ability to work is immense. However, that’s not the story.

Road trips means a lot of driving. Especially if you are going to the West Coast from the Midwest.

My husband is prone to cramps when in one position for a long period of time. So what happens while driving? He gets a debilitating cramp from his groin down to his toes. It’s not one cramp, but several cramps radiating through his whole leg. His muscles are freezing up and his body is overcome with pain from it.

So he calls his neurologist, who he has a great doctor/patient relationship with, for advice on what he should do.

The neurologist tells him to double some of his medications, but there wasn’t anything else that he could do. Federal law prohibits prescribing an opioid across state lines by phone, so he said to try to find a doctor wherever we are to get something different or stronger. The problem? No one will. After consulting with several doctors in Canada, Washington and Oregon–existing prescription bottles in hand–he gave up.

Even after faxing over his medical records, and with his neurologist willing to talk to the doctors, fear of prescribing opioids won. All this, by the way, is patient advocacy at work. Unfortunately, everyone seems to be paranoid and overly concerned with covering their own asses, all because of drug addicts abusing the system. Those who truly need the painkillers are left out in the cold. “Deal with it.” “Suck it up.”

So he is in a lot of pain. I try to help with massages and a couple topical muscle creams, but it’s not enough.

Medical Care for Traveling Chronic Pain Patients

Yes, there are addicts who abuse opioids and any number of other medications. But doesn’t a person in pain from a diagnosed condition act differently than someone in pain from withdrawal? Shouldn’t there be some consideration if the patient with the condition has the records and existing prescriptions to prove it?

Doctors need to realize that patients know their bodies best. Many people with chronic pain conditions will need these medicines their whole life. They know if one medicine doesn’t work, so they ask for something different. They know if they need something extra for the really bad “breakthru” days. This doesn’t make them addicts.

Also, there needs to be a national medical database in place for people who travel.

Getting Started with Patient Advocacy

Let’s start practicing patient advocacy, both for ourselves and for others. Help a friend. Nurses and aides, advocate for the people who put their trust in you.

We may feel that we shouldn’t have to stand up for ourselves while we are already hurt or sick, but it’s reality. Don’t be afraid to argue for your best healthcare.

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