I have had so many times in my life when I felt overwhelmed by the number of providers we were dealing with, their differing and sometimes conflicting opinions, and my sense that no one was coordinating my or my husband’s care except for me. I did not know who was the best endocrinologist or cardiologist and I really didn’t have the expertise to figure it out either. I tried asking my friends (who are not really reliable sources of information) or looking up the physician’s credentials (did they graduate from a good medical school), but given that so much of medicine is “art,” whom can you really trust?
Your primary care physician (PCP) should be your very first stop. Bring someone with you to the next physician visit (a friend or family member) and don’t be afraid to ASK QUESTIONS! Don’t let the physician rush you through your appointment. Ask your physician how she or he is sharing information from other specialists you see. Do they talk on the phone together? Share notes? If another physician has recommended a drug or treatment and you aren’t sure why, your primary care physician should be able to help you answer those questions. If your PCP cannot or will not help you, consider changing physicians and finding one who will.
In the case that your physician cannot take the time to help you with a complicated set of questions, you might consider hiring a “case manager.” What is a “case manager” and where could you find one? And could you even afford that service? There are a number of websites that advertise case management services. Case managers apparently charge between $20 and $25 an hour, on average. The price depends on whether the case manager is a Social Worker or a RN or even a MD. And it also depends on where you live. In Southern California the cost would be a lot more than $25 an hour. For simple services, a social worker might be sufficient. But what if your issue is more complex?
There are a few areas that case managers can manage for you — such a person might be able to take your medical bills, sort them out, figure out what you owe and what the insurance will pay. One of the leading case management or “navigation” companies charges $1000 per individual to help with Medicare enrollment and other Medicare related issues. They can also charge between $1500 and $2000 for more in-depth help. Patient navigation is a fairly new type of job. A few hospitals have developed this position, mostly in the field of cancer. I have a colleague, Marcia Horn, who has developed an organization around cancer advocacy called ICAN@ (International Cancer Advocacy Network) . She helps patients figure out where the best resources might be for their particular disease and helps coordinate their care. She does not ask for any payment, although I ask patients whom I have referred to her to make a donation to her organization if they can afford it.
There are a number of other options in addition to hiring an expensive case manager, like seeking a second opinion from one of the many companies that offer those services (second opinions should be covered by your insurance); asking your insurance company for case management assistance or help understanding your bill; or asking your pharmacist about a drug you are taking that you think might interact with other drugs or is causing strange side effects. We should be demanding more of our health care (non) system!
Whatever you need, don’t feel despair if the answer doesn’t come quickly. The important thing is to ask for help! There really is “someone to watch over you,” and it might be right in front of you all along.