This time I will focus on essentials of successful involvement in one's medical care.
Organization is Essential
When you are trying to connect information between multiple specialists, it is essential that one's papers, calendar, and assorted information be organized and easily accessible. If not, information will fall through the cracks, and your doctors will not have the information that they need to help you. Keeping lines of communication open and making sure each individual has all of the information from other specialists and departments is your job, and being organized is the only way to do it.
Keep files. Make a medical notebook. However you do it, stay organized.
Along the same lines...
Take Charge of Your Own Care
When working with doctors' offices, you have to be aggressive and persistent.
There are a good number of your phone calls that will not be returned. Keep calling. There are a lot of your questions that will not be answered. Keep asking. There are a lot of requests that will not be granted. Keep knocking on those doors.
Doctors are fallible. Office staff can be horribly inefficient and forgetful. Messages are lost or communicated badly, and a lot of things will be lost in process. To get anywhere, it is essential that one is persistent. Keep asking, keep calling, keep requesting.
Otherwise, you will be lost in the system. And you - or your child - will not get what you need. Depending on your circumstances, this can be a minor annoyance, or it can be life-threatening. I can think of two examples (personal acquaintances) who came close to losing their children through the sheer inefficiency of hospitals and caregivers. Thankfully both sets of parents were vigilant and persistent in pursuing their needs, and both situations turned out positively.
In the medical system, one must stand up for one's needs.
Do Your Own Research
It isn't possible for an individual to know as much as a doctor does over all, but it is possible for an individual to learn as much or more than a doctor about an individual condition. Additionally, it is very helpful to be able to discuss a condition in medical terminology - it aids communication, and greatly aids in a doctor's respect for the patient. For example, when I told our doctors, "The geneticist found no sign of hepatosplenomegaly," things usually improved from there. Doctors like involved, interested clients!
Other things, like keeping symptom lists, question lists, and medical record notebooks (see early installments of this series) greatly aid in doctor-client relations.
If You Lean Toward Crunchiness, Be Prepared for Awkward Silences
"Why no, his vaccines aren't up-to-date. Where was he born? In the bathtub. Where does he sleep? With us! And yes, at seventeen months of age, he's still breastfeeding."
All of the above will lead to nice awkward silences and sometimes caregiver prejudice. "Oh, they're one of those families."
Independent thought is not always welcomed.
Sometimes people surprise you. There's always the nurse who cheerfully pipes up, "Oh, that's wonderful! My sister had her babies at home, and I think it's much healthier! Good for you!"
But they're still in the minority.
There's nothing you can do about this prejudice, except work against it by showing responsibility and organization with your child's care. And most of the time it doesn't cause problems. But it's something to be aware of, and to be prepared for.
In my next - and hopefully last! - installment, I will share my final conclusion about the American medical system. I hope you'll join me!
|One of his favorite activities - pulling hair!|