Accessing a top-notch doctor or hospital is never easy for anyone. Still, Marty Rosen, executive vice president of marketing and co-founder of Health Advocate Pennsylvania, which provides health advocacy, wellness, and other services, says it can be especially difficult for someone with an uncommon malignancy.
Having a rare or esoteric condition will make things more difficult for these patients,” says Dr. Sullivan. According to Rosen’s assessment, a reduced pool of providers, particularly elite doctors or centers of excellence, is also likely. In my opinion, that’s going to create even more of a bottleneck.”
Rosen and others who work with patients urge them to obtain crucial medical facts in advance and prepare to make their strongest case possible, given the difficulties involved.
Rosen recommends that the patient’s primary care physician make the call on their behalf. Alternatively, he suggests a close family member speak out for a busy office assistant who is triaging many ill patients in a non-emotional and articulate manner. Then, as soon as you’ve completed the necessary tests, he tells you in a few short sentences, explain the diagnosis and why it’s so important to act quickly.
Scan and medical information should be stored digitally, argues Marion Schwartz, the Cholangiocarcinoma (bile duct cancer) Foundation’s chief advocacy officer. As soon as a test is completed, request a digital copy. There may be instances where a “block” of tissue is required for specific diagnostic tests to detect the type of tumor.
Beth McNaughton, vice president of the community for Inspire.com, which provides links to 200 online support groups, says patients may also compare techniques online, whether accessing an off-label drug or an overbooked physician. She describes it as “tips and tricks.” Inquiring minds want to know if there’s a way around it or to be prioritized.
Prepare yourself to be courteous yet persistent; Schwartz emphasizes this point. “Re-contact,” “re-email,” and “re-call” are her suggestions for following up. “Call every day until you’re heard.”