Self Advocacy

AliEm14

If you were in support group's last night, we had an amazing conversation on advocating for yourself and self advocacy tips. So many people shared things I'd never even thought of, from having a video "highlight reel" for your care to asking clarifying questions with insurance providers.

If you were sharing your top tips for self advocacy, what would they be?

PreemptiveTX

Thrilled to see a topic on Self-Advocacy! While I wasn't able to attend this discussion, I have a few tips to share and would love to know what other people shared if you have that information available. Here are a few things I've learn throughout my journey:

1. Review your labs and any test results in advance of your appointments.
2. Set goals and bring a list of all your questions and concerns to each appointment.
3. Speak up. Use your list to trigger your questions. Do not leave the exam room until you've been heard. This takes courage, but you deserve to get the information you're seeking. Your health is at stake.
4. If you think your healthcare provider(s) aren't hearing you, consider finding a better match. (Even if you've been told that you can't change physicians, present your case and ask again). This is your life and the clock is ticking. No one is going to care as much as you do about you.
5. Don't drag your feet. Complaining will not get you anywhere. Be proactive. Do you own research. Speak to other patients who have walked this path before you.
6. Seek a mentor and attend support groups, like this one!

Deb

Do not take no for an answer and do not ever give up.

KevR

Well I couldn’t have said any better than the 3 in this forum. Thanks teammates!!!

Ldybug97

When it comes to self advocacy, I have always been outspoken. I lived with my aunt when I was younger and she told me never to let someone give you tea and tell you it’s coffee and I have applied it to self advocating for myself. When I was on Peritoneal Dialysis and I was admitted in the hospital. The hospital I was in trained all nurses to do peritoneal dialysis. My main nurse for the day used to ask what I allow all the nurses to come in to be trained on the process. I used to always say yes because I wouldn’t want them to make a mistake because they don’t know how to do it correctly. As for advocating with my doctors, I am very blessed because my medical teams use the Epic MyChart system and they actually reviewed the notes of one another before I even come into the office because of this severity of my situation. They won’t even make any medication changes unless they consult one another. Every member of the medical team or my dialysis unit was made aware of my case so that whatever doctor was on call it wouldn’t be such a difficult situation to handle.

When I get blood work in the hospital or I need a new doctor, I give them a rundown of my whole medical history. I have a video of how to get my blood for labs and I ask a lot of questions. I do have a very close relationship with my medical teams so if I’m having any anxiety over something all I have to do is text one of them and they will respond. I am at the point where I can trust all of my doctors without questioning their judgment call, but when I first meet them I didn’t make it easy for them. My primary doctor put me on a blood pressure monitoring system and I bring my iPad to all of my doctors appointments and I let them look at the trends.