Be your own health care advocate

Terri Seargent has advocated for patients’ workplace rights for many decades. Her personal story has impacted medical privacy bills and anti-genetic discrimination laws. Here, she shares tips for self-advocacy.

For those with chronic conditions, it is especially important to take control of your health care and learn to do it efficiently.

You might think, “I barely have the strength to get dressed every day. And now I’m expected to be my own advocate?”

First, recognize that no one cares more about you than you do—not your children, not your spouse and not your doctor. Taking control of your own health care makes perfect sense. Luckily, that doesn’t mean you do it alone. It means you are the manager of your health care team.

Become knowledgeable

• To be an effective manager you need to be as knowledgeable as possible about your diagnosis and care.
• Learn everything possible about your particular disease.
• Understand your insurance coverage and how to pay for your care.
• Find resources that can assist financially if necessary.
• Network with caregivers and others with the same condition to gain insight into all facets of your health care.
• Research your legal rights with regards to employment and disability.

Build your team

Each person brings a unique perspective, experience and education that will benefit you in making the decisions that are best for you. Keep in mind, ultimately you choose who is on your team and all decisions are yours to make.

• Your team can be any size, but choose a few key players, including a specializing physician. Choose wisely, but know that you can “hire” and “fire” this person. They work for you and are getting paid by you.
• Research each physician. And since these are people who work for you, you should interview them to make sure they are a good fit. Be sure the physician is well educated and knowledgeable about your specific disease.
• Choose an advocate for your team who knows your desires and will be your voice when you are unable to speak for yourself.
• Other members of your team could include a peer with the same condition, home care nurse, respiratory therapist, caregiver and family members.

Available services and aids

As you confer with team members and increase your knowledge, you may find new options to try, such as inhalers, oxygen, pulmonary rehabilitation, disability, a walker or genetic counseling.

Discuss anything new you’d like to try with your physician. Some physicians may resist changing a regimen when you haven’t gotten any worse. But it’s impossible for them to know everything about each new technology or medicine released. There’s potential your quality of life could increase, so first:

• Do your research.
• Discuss your findings with your team members and get their input.
• Then take your request, along with all you’ve learned, to your physician.
• If your physician won’t assist you, be sure to understand his or her reasoning. Don’t be afraid to continue the discussion until you get your desired outcome.
• If you don’t get your desired outcome, consider seeking a second opinion from your family doctor or another specialist.

Doctor appointments

• Always be prepared. Typically, specialists have 15-20 minutes scheduled for your visit, so efficiency is important for both parties involved.
• Because you have a chronic disease, the physician needs to be made aware of any changes. A health care journal can help you document and communicate changes. For instance, “I frequently wake up in the middle of the night,” or, “I’m tripping more when I walk.” Specific anecdotes help physicians quickly assess the situation.
• Prior to the appointment write down everything you want to discuss, including options of care and desired services or aids. List prescriptions that need to be refilled and any new drugs you would like to try.
• Get copies of all tests before you leave the office. Once you leave, you are more likely to be charged a fee for copies.
• Take your caregiver, family member or friend with you to be a second pair of ears. Have them write down everything that’s said. If you go alone, consider recording the appointment. Let the health professionals know you are doing this.
• Most importantly, stay in control. Ask questions and get explanations that you can understand. Don’t let the physician leave until you are finished and satisfied.

Maintaining records

Thanks to a digitizing world, tracking and accessing records is easier than ever, but some records may still need to be kept in paper form.

• Make sure you are registered to access your Explanation of Benefits at your insurance company’s website.
• Keep all results of lab work and diagnostic tests.
• Document and maintain the date, time and with whom you spoke about anything related to your healthcare and insurance.
• Keep all correspondence having to do with your health care.

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