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Charting key to MS patient advocacy

By Stephanie Butler

I was a Neurosurgical ICU nurse for several years before being diagnosed with MS. After my diagnosis I decided to get my MS certification and began working as a nurse in an MS center. Since then I have been playing the role of both a patient and a provider. Because I am a nurse I am good at navigating insurance claims and advocating for myself during visits to the doctor. However, the majority of patients don’t have a healthcare background. Today I am going to teach you one simple way to be your own advocate.

In the hospital every professional, from doctors to physical therapists, depends on patient charts to do their jobs. 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. Your brain is a real thing, and it’s not your fault that you can’t remember your medications, every test result you have ever gotten back, or who your urologist is. The chart however never deceives. It contains all of the data, results, and hard evidence that lets us do our jobs.

However, most of us are not in a hospital or facility where all of our information is kept in one place. We bounce from specialist to specialist, between multiple offices and medical centers. Our chart doesn’t follow us everywhere we go. Instead, we have several charts in several different offices, each one only containing part of our story. We are constantly asked to recall every detail of our extremely complicated medical histories by everyone from gynecologists to neurologists. 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 provider? Wouldn’t it be nice if your chart could follow you everywhere to avoid those 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 an organized record of my medical history. You have the right to have copies of all medical records and test results, you just have to ask for them. Additionally MRIs and other radiology results can be burned onto a CD for you, often free of charge. Here is how I organized my chart, I hope it inspires you to do something similar.

Front Flap
  •  A list of all current medications and allergies. For medications include the name of the medication, the dosage, and how often you take it. For allergies record what kind of allergic reaction you had (i.e. rash, trouble breathing etc.)
  •  CDs of MRI images
  •  A list of questions that I don’t want to forget to ask

On the first divider I tape the business cards of doctors, social workers, and other professionals 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.

Next I have four sections, separated by dividers:

1. Lab and Diagnostic Studies
  • Recent blood work, and any special blood tests like lyme titers
  • Lumbar puncture (spinal tap) results
  • MRI reports
  • Evoked Potential reports
  • Visual test results

2. Progress Notes
  • Visit notes from doctors, if your doctor’s office will provide them

3. Hospital Admissions
  • Dates of every hospital admission, brief notes about the admission, and any important paperwork

4. Insurance Paperwork and Billing
  • Copies of bills
  • Enrollment information for copay assistance programs
  • Copies of insurance denial/approval letters for tests and medications
  • Receipts of all copays because they are tax deductions
  • Which disease-modifying therapies you have been on, the dates, and why you switched off of them. This also can help speed up the approval process with your insurance company if you have to switch to a new drug.

Being an informed patient should be a priority for everyone with MS, and everyone who cares for someone with MS. Having well-organized records can help providers give you the best care possible, and may even spare you from having to repeat unpleasant tests and exams.

Even if you don’t create an entire chart, having copies of important test results is always a good idea. I once met a doctor who’s office was tragically lost in a fire, along with all the medical records of all of his patients! Having your own records, even just as a back up, can only help you. The takeaway is this: be your own advocate!

Stephanie Butler is an ICU nurse who was diagnosed with multiple sclerosis at the age of 25. Six months after being diagnosed she became a Multiple Sclerosis Certified Nurse and started working in an MS center.  She is also attending graduate school to become a Nurse Practitioner, and hopes to continue working with people who have MS for a very long time. Her blog, www.justkeepsmyelin.com, offers a unique perspective on Multiple Sclerosis from the point of view of both a healthcare provider, and as a person living with the disease every day. Her mission is to bring compassion, humor, and a deeper understanding of MS to anyone who reads it.