OSM's Medical Advocacy Lesson 1

I promised an advocacy post, and this is the first installment. Please note that a lot of my experience relates to dealing with private health insurance in the United States. However, I think some of the concepts can be applied elsewhere.

The first thing you have to understand when trying to get a diagnosis or help for yourself, a dependent or a loved one, is to realize who ultimately owns responsibility for your health?

You do.

It is not your doctor's job to make you well. Indeed, in some cases it may not be in your doctor's interest to make you well; if he/she is making money by you being sick. And doctors do not all have a legal, ethical or moral obligation to treat you or make you well. The Hippocratic oath is not taken in many medical schools these days.

Now, Don't get me wrong: There are many great and dedicated doctors out there who will fight tooth and nail for their patients. There are many who will go above and beyond the call of duty. However, It would be a mistake for you (or anyone) to assume that your doctor is one of these fighters until he or she proves otherwise. And even then, you can't assume this dedication will continue. Doctors are people too, and subject to all the same fallibility as the rest of us.

So the only person who really has the responsibility to fix you is you. This is the first fundamental truth a patient needs to understand when seeking medical help. Once you make this leap of logic, a lot of the other stuff I will say is just common sense.

So how do you take ownership of your own case?  I hear a lot of people shaking their heard or panicking at this point.

The second rule is "Don't panic." This is a big undertaking. Take things one step at a time and remain in control.

The first practical step you need to take when managing your own case is get all you medical records as far back as you can go, including blood-work, images (MRI, X-ray CT, etc etc), office and consultant notes (the last two are the trickiest to get). In the United States a person is entitled by law to have copies of their medical records. I know in the UK some agencies have started sending copies of reports to patients as well.

Acquire records on an ongoing basis as they occur. If you have blood-work taken at a lab, ask the lab to send you a copy when they send the results to your doctor. The same for any imaging or other tests.

Read the notes and tests, and educate yourself on what is going on in your body, and ask your doctor questions about anything you don't understand on the tests.   I learned this lesson the hard way: A few years ago, I noticed something called "MCV" on a blood test was out  of range. My doctor had never mentioned it. However I was curious and I looked it up on-line. The number meant my blood cells were a little too large: Not a problem, right?  I didn't mention it to my doctor. Big blood cells just mean more oxygen, right?  WRONG! Apparently, large blood cells don't carry oxygen too well. And an elevated MCV number is an indicator of B12 deficiency. But the doctor apparently missed it on the report, and I never asked him about it. My B12 deficiency was not discovered until about three years later by another doctor. I started taking supplements and felt a lot better immediately. Stupid me!  That improvement could have happened three years earlier had I been less shy about "bothering" the doctor.

So ask questions about about test results and stuff on reports. it is perfectly fine to say something like  "this report says I have an "asymptomatic"  tarlov cyst. However the radiologist never asked me if I can feel my foot: I can't.  Could the Tarlov cyst be causing this?"

Even if all reports are normal, know what and when your normal is. Because rest results may change, and it won't be your doctor who will remember if X, Y, or Z was different two years ago. it will be up to you.

Once you have your medical records or test results, make sure all of your doctors get a copy. This may involve a lot of copying or mailing/faxing, but it ensures that there are more than one set of medically qualified eyes on your records and test results. One doctor may get an idea or a realization by reading test results ordered by a different doctor. It also saves you undergoing the same test multiple times.

So to summarize lesson one:

1. Own responsibility for your own health care
2. Don't panic and work methodically
3. Get copies of your medical records and ask questions about anything you don't understand.
4. Share medical records and test results with all of your doctors, not just the ordering doc and the PCP.

That probably enough to be going along with for now. Especially as my hands are killing me!

Be well.

Comments

[nurse triage]

This was an excellent post for all patients who need some understanding of how things should go when you get a sickness.

[Electronic Medical Records]

I have to say you have touched upon a lot of very important facts when it comes to someone receiving healthcare.