I’ve seen a new Rheumatologist since May 2013. I have to confess that I left my new patient appointment in tears because I felt that I wasn’t heard, that what I wanted to say wasn’t important as long as the medical assistant and doctor got the data they needed to build my electronic medical record. I was entering my fourth year of living with S-RA (sero-negative rheumatoid arthritis) and she wanted to start all over by diagnosing me. I very nearly changed doctors after that first appointment, but thank God I calmed down and gave her another chance. The next appointment went much better where she actually sat down with me and we talked. I told her my concerns and shared with her that I didn’t want to go back to square one and why. She actually understood my fears and concerns and spoke to me about them, but she also told me that rheumatology is such a gray area of medicine where the doctor has to trust in what the patient is telling them while also finding clinical proof to back up the symptoms the patient experiences. This is when I realized that I had not done my part in this transition. I needed my complete medical record.
You might be asking why I needed my complete medical record and why the new rheumatologist just didn’t request a copy of my file at my former rheumatologist’s office. This may have been the practice in the days of our mothers and grandmothers but that is not so in this modern age of medicine. Physician offices run on a skeleton staff and there isn’t a staff person who can take on the job of requesting medical records and making sure that they are obtained then entered into the electronic medical record of the patient. Also, many offices now bill the patient for the acquisition of medical records because of the cost of printing them or putting them on CD. It’s become much easier and much more profitable for the physician’s office to repeat your diagnostic tests and bill your insurance company for the repeats than to go through all the steps of getting your medical record from a colleague.
Before my third appointment with the new rheumatologist, I acquired my complete rheumatology file from the former physician for $30. The record arrived on a CD and I spent an additional $20 on paper and ink to be able to print a 126 page medical file. Having been a nurse for 16 years, I’ve learned how doctors like their information presented in a chart, so I obtained a large 3 ring binder and I divided it with color tabbed paper dividers in the following sections: Progress Notes, Medications, Lab Results, Radiology, Other. In a medical record, the most recent data is on top with the oldest data on bottom. For instance, when placing a three page progress note in the record, I put page 1, 2, then 3 in the binder with page 3 on top. I know it sounds backwards, but this is the way doctors are accustomed to seeing data within the medical record. When you place your lab or radiology reports in the binder, the oldest are to the back with the most recent on the top.
I now know I need to be the keeper of my medical records from all my physicians. It’s easier to ask for these records as you seek service and cheaper. Generally, the office will not charge you for copies of records as you incur the service vs. having to pay the fee for a bulk medical record that I had to pay as mentioned above. It doesn’t take any time for them to print your progress notes and diagnostic test results from an previous appointment for you at check out. Several of my physicians allow patient access to medical records through a patient portal where I can go online at my leisure and look at my file and print my diagnostic paper work. You really need to read your progress or office notes to make sure the information you are telling your physician is recorded accurately in your medical record. If there are any discrepancies you can discuss them with your physician and correct them. This can be very important if you may need to file for disability in the future.
Always have a current list of your medications. I can’t tell you the importance of also keeping a master schedule of your medications that includes: the date you started the medication, the name of the medication, the strength of the dose and the unit of measure of that dose, how many times of day you take it, and the date the medication is discontinued. This new rheumatologist wanted the date I started Enbrel 3 years ago and the date I discontinued it and I couldn’t tell her. A lot of patients are good about keeping a list of their current medications, but rarely do we write down the date we start a medication and the date a medication is discontinued and why. If it is easier you may wish to keep a master list of all the meds you started and stopped and a second list of your current medications.
You can use the “other” tab for anything you wish, but this is where I placed the statements I’d received from my insurance company. Whenever I get a statement of what the insurance company has paid I staple it to the actual bill for that visit and I can tell you that has saved me from overpaying numerous times. That may sound tedious, but when you are on tight budget it makes a big difference. I’m still overpaid from an error on my initial new patient visit because they “guesstimated” my bill incorrectly. Had I not had paper proof from the insurance company of what was charged, what they paid, and what I might owe I’d been expected to pay 20% of estimated charges for visits 2 & 3. If you have a physician that doesn’t try to collect up front before the visit expect that to change as Obama Care goes into effect Jan 2014. With more Americans than ever having health insurance which will be mandatory, the physician is not going be stuck with an unpaid bill for services when the newly insured defaults on their premiums and the insurance company refuses to make payment to the physician.
I knew my third patient visit to this new rheumatologist was going to be the make or break visit where I’d decide to continue under her care or fire her. I had my organized medical record in hand. I also had pulled out the start and stop date of every biological or disease modifying agent I’d been on since 2009 and graphed my CRP and ESR so she could see what drug I was on when the levels increased or decreased. From my complete medical record she was able to see that I have not had any success with biological agents since the get-go. Had I not had this data readily available to her in a format she recognized she would have started the trial and error of going back and prescribing the same drugs to me again so she could monitor the effects and I would have been frustrated and left her care. In fact she had discussed starting Humira again which was biologic number 2 out of 4. As it was, we came to some mutual decisions about my diagnosis, prognosis and care plan. We are now moving forward instead of backwards. She and her medical assistant told me how much the appreciated my medical record. There is no telling how much money in repeat exams having this data saved me! I allowed them to copy sections of my medical record for their files, but I retained my copy in the binder.
I can’t help but wonder how many patients who faced similar feelings of not being heard or that their symptoms were dismissed because there wasn’t a physical finding on that initial visit walked away in tears like I did and went on to another doctor? I very nearly did. I prayed a lot about the decision to continue with this particular doctor and I just felt I needed to get over being offended and meet her half may. Now that I’ve done so and put our rocky start behind me, we have the start of a trusting physician/patient relationship.