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Always check with your insurance provider for their list of approved or in-network physicians. You may need to go out of network, perhaps out of state, to find the right physician for a rare disease. Make sure you are aware of what is and isn’t covered. You may have to cover the expense on your own.

You may need to assemble a team of physicians. It is important for them to communicate with each other. Always sign a waiver releasing information to all of the physicians on your team so they are kept up to date. You need at least one person, be it family, friend, etc. to be involved in your health care in case of emergency.

The types of physicians are described here.

Types of hospitals and clinics are listed here.

It is helpful to keep your own records and take them with you to appointments. Electronic medical records have not yet been perfected and information may not appear on every system, especially if the labs, scans, x-rays, or tests were done at an outside laboratory or the doctors are not part of the same system.

You can download patient medical history forms here.

Here are a few tips when dealing with your physicians:

1. It is important to find a physician that you feel comfortable communicating with. Your options may be limited by insurance coverage or geography.

2. It is important to remember that doctors are human beings. They are not perfect. They are not all-knowing. They are faced with more restrictions and less time than ever before. Having your information organized and going into the appointment with a list of questions helps. They may not have answers to all of them.

3. You have the right to advocate for yourself, respectfully. You may feel at the end of your rope with frustration and pain, but being rude and raising your voice will not gain you the type of attention you need. You should be firm but polite.

4. Ask questions to clarify things you don’t understand and be clear in your answers. Be prepared with a list of topics or questions you need to cover. Make sure you let them know you need to discuss them at the start of the appointment. Take notes including dates of episodes or new symptoms between visits, particularly as the medications may impair your memory. Write down what your doctor tells you during the appointment.

5. Your routine appointment may be with the physician’s assistant or nurse practitioner. If it is crucial that you speak to the physician or there is an urgent problem, tell the office staff when you make the appointment. Otherwise, routine follow-ups or medication reviews are not considered emergencies and the physician may not be present to consult with you at that time.

6. You need a good primary care physician as well as specialists. Having at least one doctor with a long-term relationship helps. That said, it is difficult for them to remember everything about everyone. Don’t get frustrated if you have to refresh their memory.

7. The emergency room should be used for true emergencies. Do not expect the emergency staff to be acquainted with rare diseases. Take your medication lists and documents that list your special needs with you.  It is best to carry the documents with you at all times. You should absolutely carry them on your person when you travel. Medical alert tags can save lives. The emergency responders or physicians may not understand the need for the levels of medication you are on. It is important that you do not have sudden withdrawal of your medications. Make sure your loved ones are knowledgeable in case you are incapacitated.

You can download the forms here.

8. Keep your appointments. Your doctor is required to follow rules and regulations guiding the types of medications you must take. Those regulations have gotten tougher in recent years. It may seem pointless to you, especially if you are not meeting with the physician himself. Missing appointments could result in your prescriptions not being refilled.

9. The types of medications you are prescribed may require you to sign a pain management contract and present for quarterly urine testing. It may limit the number of pills you can have at one time and the number of refills offered. For some medications you may have to present monthly and submit pills for counting. If your family physician or neurologist is not comfortable dispensing these drugs, you may be sent to a pain management center. An example of the agreement can be found here.

10. If you have no choice over which physician you must work with, then it is important to gain their cooperation. Being respectful, punctual, and appealing to their empathy are more effective than being resentful and combative. Most went into practice to help people. They may be frustrated by their lack of knowledge or inability to cure the incurable. They are limited by their governing bodies and insurance companies. You may have had an unpleasant encounter once because they were having a particularly bad day. Give them a second chance.

11. You do not have to tolerate malpractice or callous physicians. Not all physicians are capable of dealing with the tough cases. Rare disease patients often become “hot potatoes” that get tossed from practice to practice. If your physician obviously dislikes working with you, find another one. This may be difficult in geographic areas where the options are limited. You may have to travel, no matter how difficult it is physically to do so, for quality care for rare diseases.

12. Think twice before you post a scathing rant on physician review websites. It is a smaller community than you might think. Don’t get a reputation as a difficult patient. Also be careful what you say on social media sites. Insurance companies have people that monitor social media for mentions of their names. Your doctor might too.

13. In cases of true malpractice, there are remedies and you should proceed through the proper channels. Otherwise, be careful of throwing around the term “malpractice.” As soon as you use that word, physicians are ordered by their malpractice insurance companies to have no further contact with you.

14. Physicians have the right to dismiss you from their care. They don’t have to offer a reason.

15. You have the right to dismiss a physician from your care. You don’t have to offer a reason.

16. Take someone with you when possible to your appointments, especially invasive tests and procedures. They can help you remember what is said and be there to act as an advocate.

It helps to have someone with you who understands your condition and medications. Routine procedures are not developed with rare diseases in mind.

17. Make certain you have an up-to-date living will and durable power of attorney and that at least one designated person has a copy. Provide copies to your primary care physician if they’ll take it.

You can find examples here.


Getting a Diagnosis   Co-existing Diseases   Differential Diagnoses   Finding a Doctor   Types of Doctors

Patient Rights   Specialty Hospitals & Clinics   Prepare for an Appointment   Patient Forms