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How to be your own advocate for better healthcare?


Hi everybody! Gloria here to talk a little bit about being your own best advocate. Healthcare, When you have a health issue you need to make sure that you are getting the best possible care, and if you aren’t, you need to speak up and, at the very least, change doctors. I have fired doctors in the past, and this week I actually fired my internist. As most of you probably know, I recently had a stroke, and after getting out of the hospital, part of my discharge instructions was to go see my primary care physician and my neurologist. I got in to see my primary care physician first before I could get into the neurologist, so I went to that appointment.

I explained to her what had happened and that I had a stroke, and I was very concerned about a new symptom, or problem, I was having after being released from the hospital. And I wanted some reassurance that it was okay… I actually asked her… I’ll tell you what the symptom was. It was this pressure and the sound of blood rushing past my ears, and this pressure in my ears when it was happening. And it’s in time with my heartbeat, so it’s like whoosh whoosh with every heartbeat. And I was concerned. I didn’t know if this was something that was normal after a stroke, or if it was something I should be worried about and should be going back to the emergency room for.

I wasn’t really crazy about my primary care physician. I’ve only seen her two other times before. I’m very healthy so, other than an annual physical or some kind of infection, urinary tract infection, or something like that that you might need antibiotics for, I have no reason to go see her. So, I really didn’t like her that much, but she’s who I had and that’s who I went and followed up with. When I told her about these symptoms, she said, “I’ll refer you to an audiologist,” and I thought, “I can hear. I want to know that I’m not going to die from whatever is causing this whooshing blood sound.” I just had blood clots in my brain. I think I’m entitled to more than just “go have a hearing test.”

Her flip attitude, and every time I’ve been to her, she’s never touched me. Never. She’s never listened to my heart, at least not at this visit, she didn’t listen to my heart, she didn’t… All she wants to do is write referrals. She wants to sit there, has a three-minute office visit with someone, refers them out to specialists, and be done with you. And that’s not good medicine in my opinion. You need to listen to your patient. You need to be thinking like a diagnostician, and you need to educate your patient on what is happening to them or so on, but you don’t just refer them out and get rid of them. So that was the last straw, and I said, “You know what? I’m done.

You are not the doctor for me. All you want to do is write referrals. You’re not interested in treating me as a patient or in my well-being and I will not be back. Please give me back my paperwork.” I had shared with her my discharge paperwork from the hospital and their instructions and results of tests, and she gave it back to me, and I said, “Thank you very much and goodbye.” So, I have on my agenda to talk with my insurance company and figure out who else is in my network, and I’m going to switch primary care physicians. For those of you who are thinking, “Oh, you just overreacted,” maybe I did. However, I got in to see the neurologist later that same day, because he had a cancellation, and the neurologist told me that that whooshing sound is sometimes an indication that the patient has a brain aneurysm.

In my case, we know that I don’t, because I’ve had so many scans of my brain while I was in the hospital just a week and a half ago. And thank God I don’t have a brain aneurysm, because if I had just taken the advice of my primary care physician, the one I fired, I might have thought, “Oh, I can wait,” and maybe the audiologist wouldn’t have had an opening for a couple of months and I would have sat and waited. And what if it was an aneurysm? I could have been dead before the appointment. It’s just bad medicine. So, don’t be afraid. Don’t be afraid to say, I’m not happy with what you’re suggesting. Is there another route we can go, or are there tests I should be having?

And if you don’t get the answers that lead you to a diagnosis of, you’re okay or you’re not okay and this is what we do next, if you’re not getting answers from your primary care physician or any specialist, fire them. You don’t even have to do what I did. I’m pretty brave and very direct, especially when someone drops the ball, and she, in my opinion, really dropped the ball. I chose to fire her to her face. Your other option is just saying okay, and then when you leave change to a different doctor. It is so important for you to speak up for yourself. And if you can’t because you’re too sick, or you’re too tired, or you’re too stressed out or overwhelmed, then bring someone to your appointments with you.

It is your choice if you want to have an advocate there with you. You can ask them to step out if you have to disrobe; you can choose to have them in there. But if you need someone there to help you remember what the doctor’s instructions were, help you to get your questions answered, or just make sure that you’re getting the best possible treatment, you have every right to ask to bring that person to your office visit with you. I did this for my mother. I was in the room for everything: every procedure she had, everything. Any time that they asked me to leave the room, really for my own comfort level… For instance, my mother, at one point, had to have an NG tube, a tube that goes up your nose and down into your stomach, and putting that in causes a lot of gagging. It’s hard to listen to. People often have sympathy gagging and might even throw up.

But I wouldn’t leave the room. They said, “You need to step out now,” and I said, “No I don’t. I’m her voice. I stay.” And it was a good thing I did because they tried several times. It requires the patient to swallow at a certain point so the tube gets swallowed and goes down into the stomach, and with people who have very severe strokes, a lot of times you tell them to do something, and it takes a second for them to process what they are being requested to do, and then actually send the message to that part of their body to get it done.

So it was very difficult for them to get that NG tube put in, and I finally said, “You have one more try, and if you can’t get it in, I’m going to have to ask you to bring someone else in to try.” And they tried one more time, couldn’t get it in, ended up bringing someone else in who was more experienced, and it took them two tries, but they got it in. So, I was acting as my mom’s advocate. I was acting as her voice because she could not speak for herself at that time. Make sure that you can speak up for yourself, and if you don’t feel you can, then bring someone with you to the appointment.

If it’s your family member who’s struggling, encourage them to include you in their appointments, and if they are uncomfortable with you being in there, in the exam room if they have to disrobe, then explain to them, “When you need to disrobe or while the doctor’s actually examining you, I can step out, but I’d like to be there to be able to help you remember what the doctor tells you and ask questions that will help me to be a better caregiver for you. That is probably the best thing you could ever do for a loved one, is to be their advocate and make sure that they’re being cared for properly.

So… Bottom line: you’re the boss. These doctors work for you. Even if you don’t have a co-pay, you’re paying for your health insurance. You are paying for their services and you have a right to get what you’re paying for. So, don’t be afraid to move on if your doctor is not giving you the level of care that you expect, and don’t be afraid to bring someone with you to be your advocate at doctors’ visits. Thanks, and best of luck to all of you in your recovery journey, and I’ll see you next time.


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