Advocating for Yourself

Do you ever find yourself feeling like you and your doctor aren’t on the same page? Do you find yourself struggling to explain yourself to your doctor? Learning how to advocate for yourself can be difficult. Pact blog writer Nancy has some great information and tips on learning how to advocate for yourself.


 

My doctor doesn’t spend enough time with me.

My doctor says GP doesn’t cause pain.

My doctor doesn’t know what to do to help me.

My doctor put me on domperidone but didn’t tell me how to get it from Canada.

My doctor put me on a drug but didn’t tell me about side effects or interactions with my other medications.

 

Sound familiar to you?  You’ve probably seen these comments on a Gastroparesis (GP) Facebook group. GP isn’t necessarily a rare disease, but it seems to be a misunderstood condition. This article is about self-advocacy. Self-advocacy is about representing yourself to your health care professional (doctor or nurse practitioner) and taking your interest into consideration first. It includes effective communication between you and your doctor and is essential to health management. Here are some suggested steps to becoming your own advocate:

  1. Read about GP. Consume as much information as your able to from the internet. You may find conflicting information, but that’s because GP isn’t a one size fits all kind of disease. A few suggested places to start are G-PACT.org, WebMd, thepactblog, Living (Well) with Gastroparesis by Crystal Zaborowski Saltrelli CHC, and the Mayo Clinic.
  2. Prepare for your appointment with your doctor ahead of time. Write down your questions for your doctor and bring them to your appointment.
  3. Understand what is covered by your insurance. Contact your insurance company and ask questions about your coverage and cost. Thing to consider – do you need a referral to see a specialist? Are labs covered?
  4. Prepare a list of current medications and bring them along to your appointment. It is also handy to have available a list of surgeries and when you had them, more recent hospital / ER visits, colonoscopy, GES and endoscopy dates, drug allergies, diagnoses, and vaccine dates. I keep all of my health information on my iPhone in the Health app under Medical ID.
  5. If you are feeling unwell, bring along a friend or relative to the appointment.
  6. Ask your doctor the questions during your appointment. If your doctor doesn’t spend enough time with you, ask if they can email you responses to your questions. If your doctor is unable or unwilling to spend time with you, its time to find a new doctor.
  7. Write down what the doctor responses to your questions. If you do not understand something the doctor said, ask them to explain again. They should communicate to you at a level for you to understand. If your doctor is typing notes into an iPad or PC, ask if you can have access to their patient portal so that you can review their office notes. If a patient portal is not available, ask the staff to print out a summary of your visit.
  8. If the doctor prescribes new medication, ask them if the new drug interacts with any of your current medications and if there are any adverse side effects.
  9. Remember to make a follow-up appointment. If the doctors calendar does not go out far enough, make a note in your personal calendar to call back for an appointment.
  10. If you want a second opinion or want to find a new doctor, do so. Be sure to check insurance coverage.
  11. Store your personal notes, the doctors health care summaries and test or lab results.

If you’re a minor, you need to bring along your parent or guardian to the appointment. Your parent or guardian may be responsible for your health care decisions, so be sure to make sure that they understand your health concerns.

If you’re intimidated by your doctor or not comfortable with bringing up topics, it may be time to work with a Health or Nurse Advocate. A heath advocate is a liaison between you and your doctor. They are offered by some medical insurance companies. There are also private health advocacy companies that may charge a fee. They do not come to doctor appointments with you, but they may be able to provide you with additional information or contact your doctor on your behalf.

Advocating for yourself enables you to take control of your heath management. It may not change the outcome of your GP or other health conditions, but self-advocacy gives you control over how you manage your health.

Resources for this article:

https://health.usnews.com/health-news/patient-advice/articles/2015/02/02/6-ways-to-be-your-own-health-advocate

https://themighty.com/2017/03/importance-of-patient-advocacy-and-speaking-up-for-yourself/

https://www.webmd.com/healthy-aging/features/be-your-own-health-advocate#1

https://www.togetherpatientadvocates.com/blog/nine-ways-to-advocate-for-yourself-at-the-doctors-office

https://www.healthgrades.com/explore/how-to-be-a-good-patient-advocate-for-yourself

 

Do you have an experience with a doctor you’d like to share? Or any tips on how you learned to advocate for yourself? Email me at smiths@g-pact.org to share your story.