"Patient Advocate Speaks On How to Document Your Appointment: Your Secret Weapon in Healthcare"
Anonymous: “I just had a crappy doctor visit and not only did they tell me to come in to talk about the problem that I sent them a message in the portal about, they then told me they didn’t do that and then in the records later it documented a physical exam that didn’t happen. I am so frustrated that I wasted time and money on that appointment THEY told me to make.”
As a patient advocate the two tools I suggest are a list of reasons/questions with check boxes and space to write answers. This helps navigate the appt and slows it down. In this appt one of the points on the list would have said "____stated to come for an in person appt to discuss disability accommodations like_____". Practice this methos with any type of appointment, going thru each question and writing the answer down, so that it becomes second nature to you...and always have them watch you document the answers they give. You can ask benefits, risks and alternatives (BRAND acronym) if they offer treatment suggestions. Part of why you want to slow an appt down is that it gives them a chance to start treating you like a person and not just one more 10 minute appt they have to document. Second thing is to record appointments with the medical transcription app Abridge. It highlights medical terms and gives definitions. You do not need to get permission in GA to record, but if you do tell them they might be a lot more careful about what they say. Even though it is recording still use your printed list and notetaking as a visual representation of all the reasons you dragged your ass to the appt that day and as a way to keep yourself on task to make sure you ask all your questions and that you understand the information given.
Anonymous: “This is great advice! Are there any resources you would recommend for how to write a good checklist type thing like you describe? I would love to share this with a relative, but they are new to dealing with medical issues and may not know what to even ask of put on a list.”
Start a document immediately when you get a referral that begins with who referred you and why. Create notes in that document about that issue and why that type of healthcare provider or specific person is who you are going to. Study study study (podcasts, papers, threads, books, lectures) leading up to the appointment and keep your notes in that document. Organize them for the appointment in checkmark lists of questions/points to bring up. Print out referrals and records so you don't get delays when they don't have access to info and defer you to a future appt for follow up. Bring someone with you, if you can, to help you keep on task. Don't expect a clinician to know more than you about EDS and its comorbidities—unless it is an expert that is known in the community—you are looking for an ally to help you navigate supporting your issues. Oh and don't do EDS party tricks at appts, if they are an expert they know that can cause damage and wouldn't ask that of you....if they aren't then they wouldn't know how to assess it and need to be told it isn't safe.
