As originally reported in Pinnacle Care, when you are diagnosed with a rare disease, it can seem there is the whole world opening that you must learn all the crevices of. There are many layers to healthcare, and it can seem daunting to get into this new realm of expensive and time consuming dedication. Adding this layer to your life can cause stress and anxiety in part because of the difficult and confusing decisions involved. This stress and anxiety is not the cause of the health problems, but it can add to them. The health problems that began as an organ transplant or blood transfusion can work themselves into these further issues that can be mitigated by different types of support. There are positive supports that can help not only with the mental stress of disease but also have positive effects on health treatment outcomes. In order to find the right care and connect to the most appropriate physicians, there are a few steps you can take.
1.) Don’t Just Accept Your Doctor’s Opinion, Seek Further Advice
Doctor’s opinions are very respected, and it may seem that they have some type of esoteric knowledge, such that their opinion trumps your instinct. When patients find out about diagnosis, there is often a sense of urgency to do whatever needs to be done immediately. However, just because they have expertise, it does not mean all the thinking needs to be left to a single medical professional. Their evaluation is valuable but does not need to be taken as truth on its own. If it is not an emergency, it is wise to seek a second opinion from another health care professional who has specialized knowledge and experience on your particular condition. Rare diseases are not often fully understood by doctors that aren’t familiar with them.
Further opinions can do a few things:
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A new opinion may match the first doctor’s advice, giving confirmation that your medical advice was sound and reliable.
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Another doctor may come up with the same diagnosis, but suggest different treatments or methods for management.
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A second opinion may change the diagnosis or find something contradictory. This may redirect the path forward, alert you to new treatment options, and show if your current medical team is not the one to stick with.
This is not just a good idea if you happen to get around to it, but extra work may also let this chore fall between the cracks. According to a Mayo Clinic study, they found that 88% of the patients involved in the study received a different or updated diagnosis and changed their treatment plan. Another Mayo Clinic Study went further, finding that anywhere from 10-62% of second opinions not only resulted in a major change to diagnosis, treatment, or prognosis. This means it is very likely that your diagnosis needs a second look. Doctors are good, but diagnosis is hard. Further, not every doctor is equally prepared for your specific diagnosis. In a study by Pinnacle Care, they found 41% of patients changed their health care to another after trying a second opinion.
2.) Find Doctors and Researchers that Have Expertise in Your Specific Condition
Every doctor has different expertise and experience. Making sure that your doctor and health care providers are familiar with your particular condition can be very impactful. For rare diseases, doctors may lack familiarity with each specific disease. There is evidence that doctors who perform high volumes of a procedure have higher outcomes of success.
So how do you find out what your doctor or medical centers experience with your disease is?
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Ask your insurance company, who may have nurse services that can provide data on the specifics on medical centers.
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A health advisor can guide you towards the most appropriate healthcare and provide data on experience and rates of success and complications.
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Directly asking medical centers on their expertise may provide insight into their approach, and they can have contacts for other specialists that they can recommend to you.
3.) Get Assistance to Guide Your Medical Path
Medical advisors, case managers, and insurance providers can provide guidance towards the most appropriate services and guide you through complex and bureaucratic hospitals. Often navigating these systems is complex and confusing, causing frustration and wasted time and energy. There are services out there that know this and have business models to specifically help people in this situation.
Advising services may include:
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Connecting you with providers that fit your insurance
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Tracking your medical records, gathering information, and reviewing it before giving them to the relevant physicians
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Tracking your medical bills and expenses, searching for accuracy, and reaching out on your behalf to contest any errors they come upon.
The medical field is an industry, complex and multifaceted, and expensive no less. Your health is crucial to your daily experience. Being smart about your healthcare decisions means reaching out, being informed, and knowing what resources can help guide you through the many layers of the process.
