Navigating the Health Care System

You may see many different health care providers throughout your life. Many of these will focus on a specific area of medicine. While the hope is that all health care providers will work in close collaboration, this is not always a given. It is important to know how to navigate the healthcare system and advocate for the care you need.

This section of Step Up covers:

Working With the Hemophilia Treatment Center

Primary Care Providers

Medical Advocacy

Working With the Hemophilia Treatment Center

Many people with blood and bleeding disorders receive their care at a Hemophilia Treatment Center (HTC). Here you can receive comprehensive care from a team of interdisciplinary health care providers. These providers specialize in blood and bleeding disorders. Not only are they knowledgeable about treatment options, but they also understand how your blood or bleeding disorder can affect other areas of your body, such as your cardiovascular system, liver, or kidneys.

Sometimes you will need to see additional health care providers who are not part of the HTC team. Your HTC team will advocate for you to access needed services and act as a liaison to make sure you receive appropriate care. It is important that all your health care providers work together. They are a great resource for navigating the health care system.

How Accessible Is the Hemophilia Treatment Center?

Most HTCs will provide emergency treatment during office hours and have a provider on call 24 hours a day in case of an emergency. Some HTCs have outreach clinics that travel to rural or isolated areas to provide care for people who cannot travel to the main center. They also have educational events throughout the year on topics such as dental care. At these educational events you will learn about medical issues but also connect with other people with bleeding disorders.

If you want more information about HTCs, please go to Hemophilia Treatment Centers.

Primary Care Providers

Your HTC team will offer you excellent care for your blood or bleeding disorder. However, it is also important to have a primary care provider (PCP) for all your other routine medical needs. A PCP provides preventive care and basic diagnoses of common illnesses and medical conditions. As opposed to a specialist, a PCP is trained to examine your overall health status.  PCPs provide treatment when a general health problem occurs. A PCP will also educate you on safe health behaviors, self-care skills, treatment options, screening tests, and immunizations.

Who Qualifies as a Primary Care Provider?

Only the following specialties are considered PCPs:

• A family practice or general practice physician or nurse practitioner. They have taken and passed a medical specialty examination (board certified) and are qualified to treat the entire family. This physician may have additional training in the areas of obstetrics and gynecology, sports medicine, or psychiatry.
• A pediatrician who treats children from birth until approximately 18 years of age.
• An internist is a physician who is qualified in the prevention, diagnosis, and treatment of adult diseases. They can have subspecialties in treating specific conditions, such as cardiovascular or kidney disease, diabetes, or a certain age group, such as geriatrics.

Choosing a Primary Care Provider

When choosing a PCP, check with your health insurance to make sure they are in your provider network. You can also get recommendations from other people with blood or bleeding disorders in your area, your HTC team, friends, neighbors, and relatives.

Here are some things to think about when choosing a PCP:

• Is the provider willing to work with your HTC team?
• Do you feel comfortable with the health care provider? Do you trust the health care provider?
• Does the health care provider listen to you? Does the health care provider involve you in your own care rather than tell you what to do?
• How does your health care provider approach treatment? Do you feel comfortable with their approach?
• Is the office staff helpful? Is it easy to make an appointment?
• Is the office conveniently located near your home or your work?
• Do the office hours work with your schedule?

Medical and Health Specialists

Throughout your lifetime your PCP or HTC team may refer you to another health care provider to address specific issues or concerns.  As medicine becomes more complex you will benefit from seeing a specialist who is up to date on all the latest medical developments.

How Do You Choose a Specialist?

Many specialists will not see you unless you have been referred by your health care provider. The referring provider may be your hematologist or PCP. In many cases, insurance companies will not pay for a specialist’s care if you have not first received a referral.  Most HTCs operate within a hospital setting and work in partnership with other specialty providers. These specialists may have experience working with your HTC team and people with blood or bleeding disorders.

What kind of specialists might you need to see throughout your lifetime?

You will meet many health care providers throughout your lifetime. These will include physicians, but also allied health professionals, such as physical and occupational therapists, people involved in nursing, psychosocial personnel, such as social workers and psychologists, dentists, pharmacists, and many more. Here we will focus on several medicine specialties you might encounter during this stage of life.

Medical Advocacy

Remember to always advocate for yourself and speak up during medical appointments, whether you’re meeting with your HTC team or seeing a specialist for the first time. You can do this by preparing ahead of time.

Here are some tips to help you prepare for your visit:

• Before your appointment, find out all you can about the purpose of your visit and the type of provider you are seeing.
• Ask your trusted health care providers for more information or talk to someone else who has gone through a similar experience.
• Contact your insurance company. Ask for a summary of coverage to see what procedures, treatments, and hospital stays will be covered.
• Write down key personal information or bring your medical records with you.
• Make a list of all the medications you’re taking, including any vitamins or supplements.
• Write down any symptoms, even symptoms that might seem unrelated to the purpose of your visit.
• Bring a friend or family member with you to the appointment. They can act as support or fill in any information you may have forgotten.
• Depending on the appointment, ask in advance if there are any pre-appointment restrictions, such as fasting.

During your visit:

Your health care provider will need all essential information about your health and well-being. While revealing personal information is not always comfortable, it is nothing to be ashamed of. Health care providers often hear deeply personal information.

Make sure to ask all of the questions you have. It is helpful to write these down prior to your visit.

Examples of questions you might ask are:

• What type of condition do I have? What stage is it in?
• What are the results of my tests? Can I have a copy of them?
• What other tests will I need?
• What are the treatment options?
• What are the side effects of the treatment?
• Will the treatment affect my daily living activities?
• Do you have any resources I can look at for further information? Does the office or hospital have a resource center?
  • Are you willing to coordinate my treatment and all procedures with my medical team including my PCP, HTC team, and other specialists?
  • Can I receive a copy of letters being sent to other health care providers?

Asking questions is important, especially when you don’t understand something. Otherwise, health care providers will think all their information is clear. You can also ask them to draw a picture to help you understand or provide written instructions. Often medical offices have materials in different formats or languages to help you understand important information. You can also ask to record part of your conversation with the health care provider. This can be helpful when discussing a treatment plan.

After your visit:

After your visit make sure to review all materials that have been provided to you. If you have recorded part of the visit, listen to the recording. If you have any additional questions, call the health care provider you met with and ask to speak to someone who can answer your questions. The provider may have suggested for you to receive further testing or to see an additional specialist. If the appointment was not coordinated by the medical office, schedule one with the appropriate office.

If you want more information about how to best communicate with providers, please go to Talking to Your Provider.