Standing Up For Health — COPY?

Building a strong healthcare team you trust and can talk freely to is key to becoming an empowered patient. Being comfortable with your team can help you get the answers you seek. And remember, you have the right to seek a second opinion.

It can take time to feel at ease when taking the lead in your healthcare. You’ve done other di cult things in the past, and you can do this, too. Be patient with yourself and know that with practice, you can develop solid skills as you advocate for your best healthcare.

“In order to receive the best treatment, you’ll want to see a doctor who is an expert in your disease. is will be someone who has treated similar cases and stays up-to-date on treatments. While ideal, it is not always possible to nd an expert near you who has experience with your rare disease.

Although there is no list of experts in rare diseases, the guidelines below from the National Institutes of Health (NIH) Office of Rare Diseases Research include several ways to identify healthcare professionals who have experience with a particular condition. Potential resources include patient advocacy groups, researchers who have conducted or are conducting clinical trials, and authors of articles published in the medical literature.”

“You have seen a lot of doctors, nurses, and other health care professionals over the years. Some you have liked better than others. Use the worksheet on page 18 to help you understand what is most important to you in the members of your healthcare team.”

Your care may be very complex and involve many specialists. You may nd it helpful to choose one healthcare professional who has the main responsibility for coordinating your care. Some patients use a medical specialist as their care coordinator, others work with their primary care physician.

Your care coordinator can:
• Help arrange consultations with specialty doctors and supportive care providers • Maintain your medical records in his or her o ce

(Of course, you’ll also want your own copies of your records.)• Talk with your other healthcare team members when needed

Remind yourself that you are at the center of your healthcare team. Once you have your medical care in place, you’ll want to concentrate on what you can do to be a strong player on your healthcare team. Try the tips listed below as you do your part:

Share Information

• Share information with your healthcare team. Tell them your symptoms–no matter howminor they seem.

• List all medicines (including over the counter medicines), vitamins, and complementaryand alternative therapies (including herbal remedies or supplements) you are taking.

• Discuss any emotional symptoms you are having. If you are feeling anxious or havingtrouble sleeping, let them know. e more you share, the better your healthcare team can help you.

• Share your goals for treatment. What are you hoping treatment will do for you?

Be a Team Player

• Go to all your scheduled o ce visits.
• Once you agree to a treatment plan, be sure to follow through. If the treatment is not

what you expected, always talk to your doctor before stopping the treatment.

Make the Most of Of ce Visits

• ink about what you hope to get out of the visit. Bring your list of questions along with you. • Ask for a copy of lab results or any health records while you are still at the doctor’s o ce.

It can be time consuming and di cult to get records once you leave the o ce. Some

states charge a fee for photocopying your records a er the visit.
• Ask your healthcare providers to give you any medicine or treatment instructions in writing.

For more tips on making the most of every o ce visit, see Principle 3 on page 33.

Be Politely Assertive

• Be polite while still being assertive when asking for what you need.
• Try using “I” statements, such as “I think,” “I feel,” or “I don’t understand.”

Talk to your healthcare providers. Find a patient advocacy organization. Locate reliable information on the internet. Learn all you can about your treatment options. Consider participating in a clinical trial, and keep an eye on your care.

There is a lot of information on the Internet. In a way, it can be like trying to get a sip of water froman open fire hydrant. How do you know what to trust? You’ll want to find and use only accurateand current information. Reliable health information comes from scienti c research that has been conducted in government, university, or private laboratories, and reliable websites will tell you where the information came from and how it has been reviewed.

Information that you nd on a website should not replace your doctor’s advice. Your doctor is the best person to answer questions about your personal health. If you read something on the web that doesn’t agree with what your doctor has told you, ask him or her about it. Use these tips for nding good and reliable information on the Internet:

When the time comes to make a decision about treatment, use reliable information—along with input from your healthcare providers, family, friends, and others. Weigh the pros and cons of each treatment. ink about how well it might work, side e ects, and costs. Consider how it might a ect your lifestyle. en, work with healthcare providers to develop a care plan you want to do, and feel you can do. Remember, you have the right to choose or refuse treatment.

What is a treatment plan?

A treatment plan is like a road map that a patient will follow on his or her journey through treatment. It outlines the progress of disease treatment or therapy. A treatment plan may be highly formalized in a medical record, or may consist of loosely handwritten notes. No two treatment plans are going to be the same, everyone’s journey with rare disease is di erent. Keep in mind, the treatment plan is always subject to change as medications, therapies, or your rare disease progresses.