Recently, I gave a lecture at a local non-profit about how one can be an advocate for a family member or friend who is dealing with a medical issue. It was a casual setting and one of the audience members raised her hand to ask a question just as I was beginning my talk. She said she might not be able to stay for the entire talk so she wanted to know at the start what was the single most important thing that she could do to be an effective healthcare advocate for her mother. I told her to buy a notebook and write everything down. She seemed a little flustered by the simplicity of my answer but I assured her that there was nothing more important that she could do than to be a good note taker.
While it is true that every patient is a unique person and every medical case has differences, there are two things that I have found to be somewhat universal for all people dealing with major illness: The patient and his/her family members are under more stress than usual, and the process of treating the illness will involve some unexpected changes in the original treatment plan. You can pretty much expect that something unexpected will happen and the patient and caretaker's stress will impact their ability to cope with these changes. The one thing that will help keep things on track is having a single source of information about the patient.
So my advice to anyone who has been diagnosed with any illness or is facing surgery or other major treatment is to buy yourself a notebook. Do this immediately. This is the single most important tool you will use in managing your care. I found it helpful to have a notebook that is small enough to carry with me at all times. Take notes every time you meet with a physician, call to schedule an appointment or talk to your insurance company (especially the billing department). Always get the name of the person you spoke with, and always ask for that person's extension or direct phone number at the start of your conversation. Even small medical practices have far more employees than you realize, and when you call back you almost always get a different person. Being able to recite the date and the name of the person you spoke with before will be invaluable when dealing with bills, obtaining medical records, or scheduling appointments.
Whenever you see a physician or other clinician, have your notebook and pen ready when they walk into the exam room. Start your notes with the date and time of the appointment, the clinician's name and the amount you paid (if anything) for the visit. This will sometimes seem redundant, but you will be grateful if months later you suddenly get several invoices, most of which you believe you already paid. (It will also make doing your taxes much easier the following year; you'll be able to add up your out-of-pocket medical expenses. Something else to keep in your notebook: the mileage you rack up while driving to and from your medical appointments. This is often a tax-deductible expense.) When you're waiting for an appointment, while you are in the waiting room or sitting in the exam room, review your notes from prior appointments. This will be very helpful in preparing for your conversation with the doctor: it refreshes your memory and helps you focus on the questions you have for the exam.
Always write down the name of every drug, test, and procedure a doctor or other clinician recommends. Ask them to spell it for you. Almost every prescription drug has at least two names; ask for the brand name and the generic name. Have a special page or section in your notebook for a list of the current prescriptions the patient is taking. Include the name, dose (milligrams) and frequency each medication is taken. I can't stress the importance of this prescription list enough – you will have to recite this list on nearly every visit to a hospital or physician's office, and often more than once. You may also need to let your clinicians know about medications that the patient used to take. Having the prescription list handy in your notebook will save you a lot of stress.
Find an organizational system that works well for you. You may want to set up tabs or special sections in your notebook. It can be handy to have a list of phone numbers for physicians, pharmacies and clinics that are easy to reference. You may want to have a section for each doctor, one for medications, and one for each type of treatment. You may find it better to use an iPad or other electronic tablet instead of a paper notebook. I find that keeping a notebook for each client organized like a diary or chronological journal works really well. There isn't really a right or wrong way to keep track of all this information – the important thing is that you do keep track. If you record all the key names, dates, conversations, descriptions, and medical data that come up in the course of treatment, things will go far more smoothly.
When you're dealing with a major illness, everything changes. Your life will function differently and your ability to remember details will change. Finding a system for taking notes is one of the most important things you can do to manage your care or be an effective advocate for your loved one.