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Home >> Patient Advocacy Tips

Patient Advocacy Tips



1. Know your illness! If you have been diagnosed with a chronic or serious illness, whether it's very common or very rare, you should take the time to learn everything you can about it. This will help you make better decisions about your care and may even help you learn ways to improve your health.

2. Seek out reliable medical information from legitimate sources. There is so much health related information on the internet that is really inaccurate. Stick to credible sources like Mayo Clinic, Medscape, UpToDate, PubMed.gov and of course the Learn More page of the Dysautonomia International website.

3. Get organized. Always ask for copies of your important medical records, like test results, MRIs, x-rays, CT scans, surgical reports and reports from your doctor that state your diagnoses. Keep these records organized in date order. A three ringed binder can help. This will come in handy when you visit new doctors, or when you have to quickly find a prior MRI or test result to compare it with a new one. You can put a list of all of you doctors and their contact info at the beginning of the binder.

A word of caution though... through no fault of their own, dysautonomia patients usually have a massive binder of medical records by the time they finally get diagnosed. This only happens because they are often misdiagnosed for so long, and because dysautonomia can be very complex and cause problems with almost any system in the body. There is nothing more terrifying to doctors than walking into a room to meet a new patient and seeing that they have 3000 pages of records with them, and a long list of symptoms to tell the doctor about. Do yourself a favor and leave your giant pile of medical records with a loved on in the waiting room, in your purse or even better, in your car. If the new doctor asks for prior test results or wants to review something in particular from your records, you can pull out the records the doctor needs before you leave the office.

4. Find a doctor you trust. This doctor does not have to be the leading expert or a specialist at a major research hospital. Sometimes your local family practitioner who really doesn't know much about your autonomic disorder can be just as important to your care as the far away expert. You need a doctor who will go to bat for you, who will help you when your insurance company denies coverage for a certain test or medication, or when you need a letter for your employer or your child's school. Our Interactive Dysautonomia Map displays doctors who are familiar with autonomic disorders.

5. Smile. Be nice to your doctors and thank them when they do a good job. Likewise, if a nurse or staff member has done a great job, let the doctor know. Doctors are human. If you are a cranky, whiny, always in a bad mood, nasty patient, even the most professional of doctors is going to dread seeing you. Your advocacy efforts for yourself will be taken more seriously if your doctor actually likes you.

6. Don't be afraid to ask for a second opinion. Second opinions, and sometimes third and fourth opinions, are a good thing, especially when you have a complex medical condition. Many dysautonomia patients have to seek out the advice of several different experts before they get a good understanding of their illness, and before the find the best type of treatment for their condition.

7. Ask questions! For example, if you are being sent for a test, ask why the test is important. Ask how the test is performed. Ask how much things will cost. Are there other hospitals or labs that perform that test cheaper? Ask if there are alternatives to that test. Ask how the results of that test may change your course of treatment. How will you get your test results and who will explain them to you? If you are being given a new drug, ask about side effects, drug interactions, how long will you have to stay on the drug, and whether there are foods you need to avoid while on the drug. Since many dysautonomia patients have unusual reactions or sensitivities to drugs, you should ask what to do if a bad reaction occurs, whether you can stop the medicine abruptly, or whether it it the type of drug you have to taper down off of.

8. Bring someone with you to medical appointments and tests. You may feel more empowered to speak up if you have someone with you. This person can also help you remember what the doctor said, and can help you raise any questions you may have forgotten otherwise.

9. Read your medical bills and insurance Explanation of Benefit forms carefully. Sadly, chances are that you will find mistakes, and those mistakes usually don't run in your favor. If you can't get a clear answer from the doctor, hospital, insurance company or government agency, ask for a supervisor. The first person you get on a phone, especially at larger organizations, is rarely the person who can solve your problem. If you can't afford your medical bills, ask for discounts, extended time to pay or charitable relief programs. It can't hurt to ask.

10. Write down your questions in advance. Before any appointment with your doctor, you should have a neat list of things you want to talk to him/her about. Before you leave the appointment, make sure you have covered each topic. Think about your goals before each appointment. What do you want to accomplish at this appointment? If you write it down and bring it to the appointment, you are more likely to get it accomplished.

11. Connect with other patients, especially those in your area or who have the same diagnosis as you. Sometimes it just feels good to know there are others going through the same thing. Local patients are also a wealth of information on which doctors are good (or bad) for your specific condition. You can also learn tips from other patients on how to cope with your illness, even if you have been dealing with the same illness for many years. And if you are a very experienced patient, you may find it rewarding to help other patients who are newly diagnosed or who haven't learned much about their condition yet. We maintain a support group listing.


 

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