I really thought I was an expert at navigating an illness, until my grandson was diagnosed with a rare disorder. As I hit the web for information, I found nothing but a lot of inconclusive research. It was frustrating and discouraging! What really got me through this initial phase was seeking out the experts. There were three in the United States total and I spoke with two of them. Living near a major city, we were also fortunate to be able to get him excellent care at a world-renowned children’s hospital. Finding the experts brought clarity to the confusion of this diagnosis. Although we still don’t know his prognosis, we do know we are getting him the best possible care and that is a major reassurance. This is what MIF wants for every patient that comes to us for support. Our experience shows us that far too many of you walk on eggshells around your health care providers, fearful to ask questions or disagree. So we want to equip you with some tips to negotiate this delicate relationship and be confident that you are receiving the best care possible.
1. You hired your doctor and pay for services provided. If your doctor isn’t living up to a good productive relationship with you, then consider seeking out another. Reach out to MIF. Our forum and website are excellent places to find specialty centers.
2. Personality can’t be changed, but if your doctor seems outdated in current therapy knowledge, it is essential to find someone who is. An experienced melanoma specialist is crucial.
3. How do you know if your doctor is a specialist? Check out your doctor’s background: Where did he/she go to medical school? Did that school have a good melanoma program? Is he/she involved in current research for melanoma treatment? Has he/she published papers on topics related to melanoma?
4. Ask for all copies of medical records and, if available, sign up for the online access to your records. Remember that your medical records belong to you and, like bank statements, need to be reviewed for accuracy.
5. Don’t be put off by medical terminology. It is likely the barrier that separates you from your doctor’s knowledge. Ask for explanations of terminology, look them up or call MIF.
6. Don’t worry about hurting your doctor’s feelings if you get a second opinion elsewhere. A judicious doctor will be supportive of a second opinion, not resentful at all.
After MIF educates a patient, his/her doctor is often pleasantly surprised at the knowledge level possessed by that patient. A more meaningful conversation can happen between the two of you. Please contact us by email, helpline or join our forum so we can empower you. Financial assistance is available through our travel scholarships, too, if you need to travel for second opinions or clinical trials. This may be one of the most important journeys of your life and there is much you can do to decide your fate. We are here to support you!