Know Your Patient Rights: Important Tips for Patients and Caregivers
Sandy Hanebrink

As many of us already know, individuals who have rare neurological and autoimmune disorders often face challenges with healthcare providers.  Misdiagnoses at onset and post onset are among these challenges.  For those already diagnosed, here are some tips to help ensure you get the medical treatments you need…  Be your own advocate!

• Share copies of the TMA Articles, Newsletters and Journals, especially the document on how to diagnose TM, with your physicians, local Emergency Rooms and other local hospitals and clinics.  You may even want to keep a copy of this with you.
  
• Get a copy of your diagnostic test reports and a summary write up from your diagnosing physician.  Make sure a copy is in your file at your primary care physician’s office and keep a copy with you at all times.  Keeping a copy can be critical to you receiving proper care in emergency situations or when you move or go to a new physician or facility.
  
• Make a document that lists your name, address, phone, date of birth, and insurance information.  This document should also include the name and contact information of your primary physician, neurologist and any other specialists you see routinely.  If the diagnosing physician is not your current doctor, you may want to include this information, as well.  In addition to the contact information, include all your diagnoses and date of diagnoses, current medications, allergies and past surgeries and dates.  Keep this document up to date and with you, along with the diagnosing physician note and test reports.
  
• When you go to any medical appointment, provide a copy of these documents to the treating physician and ask that it be included in your record.  You will also want to make a list of your current complaints or concerns and how they are different or changed.  Do not assume the physician knows or remembers how you were previously or that he/she will know by looking at you.  This is especially the case if the physician does not know you.
  
• If you get a physician who will not accept your documents, listen to you, or acknowledge your history, FIRE THEM and ask immediately for a second opinion. If you are in an emergency room, ask for a different physician and if needed, the patient advocate.  You are in charge.  It is your health.  They work for you.  You pay them.  They are not in charge.
  
• If you receive an incorrect diagnosis and you are aware of this at the time, request that your medical documents you brought with you be added to the record.  Also request that a statement that you do not accept the diagnosis and that refers to the documents you brought with you be added to the record.  Additionally, request that the physician giving you the incorrect diagnosis contact your primary and diagnosing physicians.  This is critical as incorrect diagnoses confuse things later, can cause a mess with insurance reimbursement, and will prevent you from getting the care you need. If you find out later that a misdiagnosis is in your file, ask that the record be amended with your statement and records.  This will help document for the future and help ensure proper treatment of your conditions.
  
• After any tests, emergency room visits or other major medical appointments, treatments or hospitalizations, request a copy of the complete record including all notes and bills.  This is the only way you will know what is in the record.  This is critical for those who have been misdiagnosed.  When you request the records, tell them you are picking the records up to hand deliver to your appointment with one of your physicians.  Doing this usually keeps them from being able to bill you for the copies.  The itemized bill allows you to check for billing errors and saves valuable insurance and personal dollars.
  
• Once you have your files, review them carefully and take any necessary actions to amend the record, contest a bill or seek additional healthcare.  If you have to amend the record, again ask that your statement and records be added.  You may also want to ask your primary care and/or diagnosing physician provide a note to be added to the record, as well.  Finally, follow up and verify that your amendments are part of your permanent record and  that the treatment notes state you wanted the record amended.

• You can keep a paper copy in your car, in your purse or backpack.  You can also keep copies on a jump drive that you can keep on your key ring.  When keeping a jump drive, make sure you put a card in your wallet that identifies your medical record is located on the jump drive attached to your key ring.  This card should be with your ID and insurance cards.  Emergency medical personnel will usually look for identifying information when you cannot respond.  Keeping the information where it can be found is critical.  It is also good to give a copy to the family member(s) or friend(s) who go with you or who may transport you in emergencies.  Make sure they understand your condition, the importance of providing this information and the true need of their support.

• Take charge of your healthcare.  Keep your records up to date.  Communicate your needs.  Take action when necessary.  Keep your support network informed.  Keep all your physicians informed of care by other physicians.  Keep your information where it can be found.  Stay informed and stay healthy.

If you have questions or need some advocacy assistance, contact Sandy Hanebrink, OTR/L  at (864) 225-1356 or wheeldogs@charter.net (Diagnosed with TM since 1987).