It is important that you begin to see yourself as the center of your health care team. Only you can make sure you get your questions answered. Only you can keep other team members informed about symptoms and side effects. Only you can follow through on treatments and make the tough choices about your health care.
It can take time to feel at ease when taking the lead in your health care. Be patient with yourself and know that with practice, you can develop solid skills as you advocate for yourself.
Your team will certainly include doctors, nurses, and specialists. It is likely to include your pharmacist, physician assistant, patient navigator, or a mental health practitioner such as a social worker, psycho-oncologist or psychologist. It might even include researchers, lab technicians and naturopaths.
Step 1: Select a Care Coordinator
Since your care may be very complex and involve many specialists, it can be helpful to choose one health care professional to have the main responsibility for coordinating your care. Some people ask their oncologist or hematologist to serve 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 your doctors' offices (Of course, you'll also want copies for your records)
- Talk with your other health care team members when needed
Step 2: Choose Healthcare Providers Who Are a Good Fit for You
It is important to find health care providers you can work with productively in the years to come. This needs to be someone you trust and believe in. This will make you more likely to follow their treatment advice. So keep searching until you find health care providers who are right for you.
What is most important to you in a health care provider? Take a few minutes to make a list for yourself.
Healthcare providers have many different styles and points of view. Some are warm and friendly, others are more formal. Some prefer aggressive treatments and others are more open to alternative treatments.
Choose health care providers who treat you with respect and listen to you. They should answer your questions in a way that makes sense to you. They should respond to your calls and messages in a timely manner. If they don't know the answer, they should be willing to refer you to someone who does.
You may also want to find out a little more about any doctor you are considering. Here are some places you can go to learn more about a doctor's competence and experience:
- Federation of State Medical Boards: This organization offers profiles on licensed doctors and other health care providers. You can find out about their education, any disciplinary actions and certification. You may also find more information through each individual state’s medical boards by going to this directory.
- American Board of Medical Specialties: Find out if your doctor is board certified in the specialty area that treats your disease by calling (866) 275-2267. A doctor who is board certified has shown great expertise in a specific area of medicine.
Step 3: Find an Expert in Your Disease
Chances are you've already seen a hematologist or a hematologist-oncologist (hem/onc for short). They are experts in diagnosing and treating diseases of the blood and bone marrow.
To get the best treatment, you'll also want to see a hematologist or hem/onc who knows a lot about your particular disease. These practitioners have treated similar cases and stay up-to-date on treatments. While it's ideal to see a local specialist, it is not always possible to find an expert near you who has experience with aplastic anemia, MDS or PNH.
You may need to go out of your area to visit an expert who is very experienced with your condition. Ask this expert to keep in touch with your local primary care physician, hematologist, or oncologist.
Need help finding an expert in treating bone marrow failure diseases?
- Call AAMDSIF at (800) 747-2820, option 1. Speak with one of our information specialists about finding the right medical specialist for you. Also ask about financial resources to help you pay to see an expert.
- Contact a teaching hospital connected to a local university. Call the hematology/oncology department. Doctors at teaching hospitals are usually familiar with rare diseases and will know about standard therapies and newer treatments.
- Go online. Visit marrowforums.org and our Facebook page and ask other patients for names of specialists they know and trust.
- Ask your community hematologist or oncologist. Often these doctors will know of specialists in bone marrow failure already and can make a referral.
Step 4: Do Your Part to Become an Empowered Patient
It is important to remind yourself that you are at the center of your health care team. Once you have your medical care in place, you'll want to concentrate on becoming a strong self-advocate.
Try these helpful tips:
- Share information with your health care team. Tell them your symptoms – no matter how minor they seem
- List all medicines you're taking, including over-the-counter medications, vitamins and alternative therapies
- Discuss any emotional symptoms you are having. If you are feeling anxious or having trouble sleeping, let them know. The more you share, the more your health care team can help you
- Go to all your scheduled office 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.
You Have a Right to a Second Opinion
Even if you're happy with your health care team, it's okay to get a second, third or even fourth opinion. Getting a second opinion will not offend your doctor. In fact, most health care providers appreciate and encourage another point of view. And it's your right.
Seeking a second opinion can help you and your family make difficult decisions about your treatment. Be sure to contact your health insurance company to determine if the health care provider is covered under your plan, so you'll know what your out-of-pocket expenses will be. While most insurance companies will cover a second opinion, it is a good idea to check with your insurance company before seeing the new provider. You should be aware of and keep track of your out-of-pocket expenses.