06/09/2023
I hope you are all doing well. I write today to remind everyone of the importance of keeping accurate records of all medical information and understanding your rights.
Patient Bill of Rights | Clinical Center Home Page https://clinicalcenter.nih.gov/participate/patientinfo/legal/bill_of_rights.html
Keep a notebook of all interactions with medical professionals.
Have a written care plan, that contains your primary care teams names and contact information, your authorized agent or proxy who can make medical decisions for you if necessary, an updated med list, religious information if it has beliefs that may affect your treatment and diet concerns, a written advance directive to include life sustaining decisions and your decisions regarding organ donation, who to contact and what information you are comfortable with your medical care team sharing, where the care team can obtain your prior medical treatments, family medical history, insurance information, allergies, and any other information that you feel is pertinent- for instance if you need a translator.
Too many of us have been in situations where we are ill prepared and end up being poorly treated because we are not informed and find ourselves at the whim of care teams who don't even understand our disease. The best defense is a well planned offense. I cannot express this enough, research your diagnosis, you may find yourself having to educate your health care team. I need you to be the absolute authority on your body, needs and rights. If you feel that you need assistance you can always reach out to any of the administrators and you have the right to allow us, or anyone for that matter, to advocate on your behalf. We are here for you and we have all been in those situations we have spent years learning as much as possible to make sure that no one else has to go through the stresses that come from the very people who are supposed to help us. Much love. 💜
