How to be a Savvy Patient: 101
In the hospital every professional from doctors to physical therapists depend on patient charts to do their jobs. We have minor panic attacks every time we can’t locate the chart. Panic usually turns into frustration when we discover that some other greedy professional is having alone time with it in a remote corner of the unit. Arguably the chart is just as important as the patient, which may sound heartless but hear me out! Patients forget details, or sometimes even lie about them on purpose. MS brain is a real thing, and it’s not your fault that if can’t remember your medications, every test result you have ever gotten back, or who your urologist is. The chart however never deceives. In the religion of medicine the chart is the gospel. It contains data and results and hard evidence that lets us do our jobs and never leads us astray.
However, most of us aren’t patients in the hospital 24/7. We bounce from specialist to specialist, between multiple doctors offices and medical centers. Our chart doesn’t follow us everywhere we go, and we are constantly asked to recall every detail of our extremely complicated medical histories. Have you ever left an appointment and remembered a potentially critical detail that you forgot to tell the doctor? Have you ever moved and experienced the frustration of getting all your records from 10 different doctors sent to your new Neurologist? Wouldn’t it be nice if your chart COULD follow you everywhere to avoid these situations? Well mine does, and yours can too!
I started with a standard binder and organized it how a hospital chart would be organized. It has been so helpful, and every doctor that I visit is grateful to have such an organized record of my medical history. I even take it when I’m traveling, just in case. You have the right to have copies of all medical records and test results, all you have to do is ask for them during your visit. Similarly MRIs and other radiology results can be burned onto a CD for you free of charge. Here is how I organized mine, I hope it inspires you to do something similar!
A list of all current medications and allergies. For medications include the name, dose, and how often you take it. For allergies record what your reaction to was (i.e. rash, trouble breathing etc…)
CDs of MRI images
A blank piece of paper and a pen which I use to write down any questions that I don’t want to forget to ask
I also hole punch and keep anything that a doctor puts on a prescription pad
On the first divider I have business cards for doctors, social workers, etc.. that are involved in my care. When I need to contact someone I never have to search for their contact information, and when I’m in a doctor’s office and they want to send records to another one of my specialists I always have fax numbers right there. You of course can also store this information in your phone, but sometimes I forget the doctor’s name if it’s someone I don’t see very often.
Next I have four sections separated by dividers, these are:
1. Lab and Diagnostic Studies
Recent and abnormal blood work, and any special blood tests like lyme titers
CSF results from your spinal tap- don’t loose these, you do not want to repeat that test!
Evoked Potential reports
Visual test results
2. Progress Notes
Visit notes from doctors, most doctors write their visit notes at the end of the day or after the visit so you may not always have a chance to get copies of these.
3. Hospital Admissions
I keep a record of every hospital admission and any important paperwork from those admissions
4. Insurance Paperwork and Billing
Copies of bills
Enrollment information for copay assistance programs
Copies of denial/approval letters for tests and medications
Receipts of all copays- can you say tax deduction??
What disease modifying drugs you have been on, the dates, and why you switched off of them. This helps speed up the approval process with your insurance company when switching to a new drug.
You certainly don’t have to go as crazy as I did, but being organized is important both for you as a patient and for your caregivers. The takeaway is this: be your own advocate!