1. Prepare a Folder or a binder with your medical records:
I did this for my mother when I was her caretaker and it reduced her anxiety and stress as well as that of my own. I organized the binder with tabs labeled as: Provider Info, Patient History, Directions but you can organize per your preference.
Provider Info: I listed the physician’s name, number, location, and specialty. Be sure to include your primary care physician and/ or any referring physician. I also listed social workers and clinical care coordinators who facilitated my mother's care and discharge. Home Health Aide agencies, medical supply companies, etc.
Patient History: I photocopied my mother’s insurance card and kept a copy in the binder as well as a copy of her driver’s license. I then included a Word Document with notes regarding her MD/ Hospital/ Homecare Visits as well as all documentation they provided.
Directions: To various sites we would visit.
Please use caution as sensitive information must be safeguarded. I kept the binder with me at all times unless my brother or other family member I trusted was assuming duties.
2. Keep a list of current Medications:
Medication bottle themed ID card that I picked up at during a recent visit to rehab. It's cute, compact, and perfect for anyone to keep with them.
This includes those that are prescribed to you as well as anything herbal and over the counter. You can add this list to the binder as well as keep a fold out mini medication card in your purse or wallet. Ask your MD’s office for one, most will have one readily available for patients to fill out and use. You can include pictures of the pills prescribed to distinguish by appearance.
Here are some sample tables I made:
3. Bring any CD’s or images with you.
In some cases, the physician to whom you are referred will have you complete certain diagnostic tests prior to your consultation. Depending on their access to the testing facility, you may have to bring a CD/copy of the test results with you. Sometimes you will be given a copy at the time of the visit, other times you will need to request a copy from the Medical Records Office. I had a neurosurgical consultation with an MD in New York and brought my MRI CD with me so that he could make his assessment. Don't rely on the referring physician to fax or mail them, it could delay your appointment.
4. Avoid “Google” and the act of self-diagnosing.
Did I listen to that advice? No, of course not. But I wouldn’t be a true advocate or PA if I didn’t at least tell you not to. Yes, it is reasonable and expected to be curious, but don’t assume that you have everything you are reading about. Often, you can spend (waste) valuable time with the clinician discussing hypothetical situations instead of addressing key findings/ indicators, a list of differentials (possible diagnoses based on findings/ clinical presentation), and treatment options or future outlook. DO however, google specialists involved in the general area of the problem, if known. You MUST do your due diligence and be your own advocate or one for someone you love if you are a caretaker. Educate yourself on providers who are known for the “problem” you are seeking help for. There are organizations which can help guide you. I've listed a few for brain tumor patients and cancer patients on my Resources page.
5. Bring a tape recorder with you (especially for those with phones not equipped with one).
Ideally, you can bring a friend or family member with you. Often, hearing words like “tumor, lesion, cancer, surgery, stroke, etc.” are enough to shock anyone, and not remembering key details of the visit is frustrating and frightening. Sometimes with my own patients, I would find they wouldn't tell me if they didn't understand something out of fear of embarrassing themselves or appearing unintelligent. I had a background in medical sciences so I was able to be a crutch for my mother but even I found some jargon to be beyond my comprehension at that time and would do additional reading to learn. Then, I was fortunate in that two of my dear and close friends went with me to my consultations separately and they were both in the medical field, but not everyone has that luxury. Ask the physician if they wouldn’t mind you recording the conversation and review the file aftewards.
6. Asking Questions
My first time writing (left hand), 2 months after surgery. Part of preparation for my first follow-up visit with Dr. Diluna.
A clinician should be understanding and compassionate to what you are feeling and having to deal with. Don’t feel nervous to ask a question, it is your RIGHT. Ask what their experience is with your particular situation. Ask if anyone else in the practice also performs/ treats these conditions. (You should google them too)
The American Brain Tumor Association (#theABTA) shared an amazing list of questions to keep with you for your appointment and I would strongly encourage you to look at them or share them with someone you know visiting with a specialist.
http://www.abta.org/resources/care-and-treatment-section-resources/questions-for-health-care.pdf