Make the Most of Every Clinic Visit
Editor’s Note: I was not a good self-advocate for the first three months after the onset of pityriasis rubra pilaris — before I knew it was PRP. I will be the first to admit that I let my dermatologist “run the show”.
My dermatologist diagnosed with seborrheic dermatitis, prescribed prednisone with absolute confidence and said “ come back in two weeks”. When I came back, however, the dime-size red dot on my forehead was now a more serious rash reaching to my upper torso. The prednisone was increased. Again, she told me to come back in two weeks.
Two weeks later it was even worse. More prednisone. In fact, over the following month I was prescribed ever-increasing doses of prednisone until a 20-foot rubber duck appeared in my bedroom.
After six days in a hospital bed, firing my first dermatologist and getting a proper diagnosis based on clinical observations of a new dermatologist and a supporting biopsy, I was finally on the right road.
My new dermatologist referred me to the University of Texas Southwestern (Dallas) for treatment.
My relationship with my THIRD dermatologist was that of a self-advocate. I discovered the value of asking questions. The most effective question during clinic visits was “Why?” I brought FIVE questions to every clinic visits and Dr. Dominguez answered each. Twelve months later I was med-free. Another two months and I was symptom free.
FAST FORWARD to June 3, 2015 While participating in a conference call arranged by the National Organization of Rare Disorders, I listened to John Huber, executive director of the Aplastic Anemia & MDS International Foundation (AA&MDSIF). Supported by a grant, John’s organization had been working on Standing Up for Your Health for five years.
For a licensing fee of $1, the PRP Alliance was authorized to use the 62-page booklet without restriction.
Standing Up for Your Health was developed to empower a large, often forgotten and underserved population – the 30 million Americans with rare diseases who face challenges in obtaining an accurate diagnosis and have difficulty finding medical experts with experience to manage their rare diseases.
Standing Up for Your Health means being a strong self-advocate and an empowered patient. It means taking a more active role in your care to ensure you or your loved one receive the best care and treatment available. Empowered patients learn all they can about their disease or condition and their treatment options so they can fully participate in their care.
To bring you the most up-to-date information, we consulted with medical experts and interviewed patients with rare diseases about the skills they use as they effectively navigate the healthcare system. We read the latest research and talked with physicians, nurse specialists, and patients and their families to get their perspective on the skills needed for good health advocacy. Then, we compiled what we had learned into logical steps you can take toward standing up for your health.
Originally created by the Aplastic Anemia & MDS International Foundation, this program was developed to discover the steps that empowered patients and strong self-advocates take to enable them to receive high quality care.
Whether you are newly diagnosed or have been living with a rare disease for many years, the practical strategies offered in this book are designed to help you to stand up for your health.
Principle 3 Make the Most of Every Office Visit
PREPARE FOR EACH VISIT
Office visits may be shorter than you hoped. To be a strong advocate for yourself, it is critical that you do everything you can to make the most of every visit. You’ll want to do some work in advance.
Set an Agenda
For the Visit Ask yourself, “What do I want to get out of this visit?” Write down the top three things you want to discuss. Focusing on your agenda will help you make the most of your time.
Ask For the Time You Need
When you make an appointment, let the staff know if you have special concerns that might require a little extra time with your doctor. If, after your appointment, you still need more time, find out how you can call or email your doctor with concerns.
Do Your Homework
Learn all you can about your condition and the available treatments.
Bring Information
With You Bring your medical information to the visit. This information should include:
- A list of questions in priority order (see page 22 for questions to consider)
- All current and past illnesses, as well as any chronic conditions you may have
- A list of prescription and over-the-counter medicines, vitamins, herbs, and supplements you have used • Notes on symptoms and side effects you are having
- Test results
Form a Good Relationship With Your Healthcare Team
Establishing friendly relationships and showing appreciation for your doctor and the staff is important. When you work well with your healthcare providers, it enables them to focus on your condition and to make the best use of the time they have with you.
Bring a Member Of Your Personal Support Team
Going to the doctor can be overwhelming. Asking a family member or friend to come along can help. This person can help you ask questions, write down answers, and ensure you get answers you understand because four ears are always better than two. A family member or friend can also provide emotional support. For more on building a strong personal support team.
ASK QUESTIONS, GET ANSWERS
Clear communication is an integral part of good healthcare. In order to make smart choices about treatment and follow your care plan correctly, you need to fully understand your disease and treatment options. These are the things that empowered patients do to make sure they get the best care and treatment
Ask the Most Important Questions First
Be sure to bring a list of questions and put them in priority order. You may have just a few minutes to ask your questions, so be sure to ask the most important ones first. For a list of disease and treatment related questions to consider, see “Questions to Ask Your Healthcare Team” on page 22.
Ask for Clarification
Don’t worry about offending your healthcare provider. Healthcare providers tend to share more information with patients who pay attention and ask questions. Asking questions shows healthcare providers that you are actively involved in your own care and want to stay informed. Let your doctor know if the information is confusing or if there is anything you don’t understand.
If you have trouble understanding your healthcare provider
- Ask the healthcare provider to say things again or use simpler words until you understand it.
- Ask a family member or friend to listen with you.
- Ask for brochures, drawings, or models.
- Ask the provider to write down answers.
Take Notes
After the visit is over, it may be hard to recall exactly what your provider said. Take notes, ask a family member or friend to take notes, or use an audio recorder. Keep these notes with your medical information.
Remember:
- Your healthcare provider is your paid consultant and part of the team you need to organize to obtain the best care possible.
- Be respectful, but do not be intimidated.
- Always consult with your doctor prior to making any medical care changes.
- You are always entitled to a second opinion.
SUMMARY
Have you ever left your doctor’s office not sure of what you need to do next? Not quite sure how to take your medicine? You’re not alone. There is a lot of information to take in at each visit. Using the steps outlined in this section can enable you to get the most from your office visits. While not always easy, asking questions until you get answers you understand is a central part of becoming an empowered patient.
Skills Checklist
Assess your skills in preparing for office visits and making sure you get your questions answered in a way you can understand:
Take steps to prepare for each visit by writing a list of questions beforehand and bringing them along with me.
Ask your healthcare team questions.
Make sure to get answers you understan
https://prpsurvivalguide.org/contact-editor/If you want to help develop a strategy for PRP patients and caregivers to to take control of every clinic visit, CONTACT THE EDITIOR.
