Patients as Self-Advocates

SPEAK UP - ASK QUESTIONS - to make the most of appointments:

• Speak Up. If you have questions or concerns, or if you do not quite understand everything that has been discussed. You are important. Don't be afraid to ask for more information or more clarification. Don't be embarrassed to ask questions. If something does not seem quite right, be sure to express that.
• Pay attention to the care you are receiving. Make sure you are getting the correct treatments and medications. Carefully read any information provided to you. Write down questions you have for your healthcare team. Take notes or bring someone with you to take notes during your appointments.
• Educate yourself about your diagnosis, the medical tests you are undergoing, and your treatment plan. Carefully read any information provided to you. Reading as much as you can gives you an opportunity to formulate your questions and to know more about what to ask.
• Participate in all decisions about your care. You are the center of the healthcare team. You and your care team should agree on each step of your care. Know who all the care team members and how they interface with you and the rest of the care team members. This resource can help: http://nlmsf.org/navigating-leiomyosarcoma-treatment-after-treatment/
• Immediately communicate concerns about the quality or safety of your care to your care team.

None of this is easy. Taking someone with you is most helpful. A support person to be with you at stressful appointments is valuable.