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Navigating The System

What you need to know to work the system

Here are a few tips and tricks to keep in mind when you are moving through the medical and service system. IT IS IMPORTANT TO REMEMBER: HIV treatment is most successful for those people who stay engaged and active in their own care!

  • Know your rights!
    • As a client of HIV/AIDS service providers, you are entitled to the same rights as any other patient in the medical system—and those rights include safety, competent medical care, and confidentiality.
  • Keep track of all the services you access and be knowledgeable about them.
    • If you are living with HIV, you may work with multiple clinicians, including a primary care provider (doctor, nurse, etc.), as well as a case manager, dietician, dentist, social worker, therapist, and other specialist providers.
    • In addition to your medical providers, you may benefit from access to food assistance programs, housing or home healthcare programs, or community support groups. It is important to find out what services are available in your local community and, if possible, engage your clinic’s staff to help you access these services.
    • Keep records of your lab tests and other test results and the name of the provider who ordered them for you.
    • Keep a written record of your doctor or provider visits, including your questions (and the answers you receive), tests, plan of care, and next appointment.
  • Communicate with your providers. Be open and honest. Don’t be afraid to ask questions!
    • You always know more about your body and the way you are feeling than your provider does—and your provider can do a better job of helping you if you talk about what you are experiencing.
    • Ask your care providers for copies of your test and lab results
    • What they don’t know CAN hurt you! Be open and honest with them about things that might have an impact on your physical and mental health, including your sex life, changes in your personal life or living situation, your medications (side effects and missed doses), new research you may have done, your frustrations or concerns, etc.
    • Let your providers know how they are doing—and be constructive with your criticisms. If you feel your care providers are doing a great job managing your care with you, tell them. Everyone likes to hear positive feedback!
      And if you are unhappy with your care, try to complain in a constructive way. Give specific examples of things that have made you unhappy with your care—and try to give your provider some positive suggestions on how the two of you can have a more satisfying relationship.
    • Ask about clinical trial options! For more information, see NIH’s search results.
    • Always let your providers know when you are going to miss, reschedule, or be late to an appointment. If you have to cancel an appointment, always reschedule at the time you cancel! This will ensure that you don’t forget and that you continue to get the care you need to stay healthy.
    • Remember your provider’s receptionist probably isn’t a clinician, so if you are calling because you need help with a medical issue, the receptionist is unlikely to be able to help you. You will probably need to wait for your provider to call you back. Be sure you leave the information your provider will need to help you—including a detailed description of any symptoms or problems you may be having.
  • Be prepared—and on time—for your appointments.
    • Keep track of your appointments the same way you keep track of your other events or activities (phone, paper calendar, online calendar, etc.).
    • If you are concerned about confidentiality, you could use a code word or activity on your calendar instead. For example, you could enter “late lunch” for your appointments with your doctor or “go to the grocery store” for your meetings with your HIV case manager.
    • If possible, arrive a few minutes before your scheduled appointment time. A patient who is even 10 minutes late can radically disrupt the schedule of a healthcare provider. Remember—your care providers want to give you all the time they possibly can, and it helps if you are there on time.
    • Keep in mind you may have to wait when you arrive at your appointment. Providers don’t always have control over what happens in the healthcare environment, and things can change rapidly. There may be someone ahead of you who has an emergency or needs extra attention that day. Be patient—you might be that person some time!
    • Follow up on your labs and get them drawn when your healthcare providers advise you to do so. If they ask you to do a test or a lab before your appointment, try to do so. Providers often ask you do this so they can review your results with you when you come in for your visit.
    • Ask for copies of your labs and tests.
    • Before you leave, ask when your next appointment will be and get a written reminder from the front desk. This will help you stay on track with your care and protect your health.
  • Be prepared for life-long learning!
    • HIV research is constantly evolving and changing. It’s important to keep up with new advances in care.
    • Learn about your community’s resources and become active in your community’s HIV services.
    • Learn about politics and HIV and how your government (local, state, and Federal) responds to HIV issues.
    • Read HIV-related publications, including magazines, journals, on-line blogs, and related materials.

Frequently Asked Questions

Will I have to navigate this complicated HIV care system alone?

There are thousands of community health programs and advocates out there whose exist to help you navigate the HIV care system. Ask your healthcare provider how you can access these services.

Last revised: 06/01/2012