Your child may see many different health care providers throughout their 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 your child needs.
This section of Next Step covers:
Working With the Hemophilia Treatment Center
Working With the Hemophilia Treatment Center
Many people with blood and bleeding disorders receive their care at a Hemophilia Treatment Center (HTC). Here your child can access 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 child’s blood or bleeding disorder can affect other areas of their body, such as their musculoskeletal system.
Sometimes your child will need to see additional health care providers who are not part of the HTC team. Your child’s HTC team will advocate for them to access needed services and act as a liaison to make sure they receive appropriate care. It is important that all of your child’s 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 physician 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 and your child will not only learn about medical issues but also connect with other people with blood or bleeding disorders.
If you want more information about HTCs, please go to Hemophilia Treatment Centers.
Primary Care Providers
Your child's HTC team will offer excellent care for your child’s blood or bleeding disorder, but it’s also important to have a primary care provider (PCP) for all your child’s 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 child’s overall health. PCPs provide treatment when a general health problem occurs. A PCP will also educate you and your child 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.
Choosing a Primary Care Provider
When choosing a PCP, check with your child’s health insurance to assure they are in your child’s provider network. You can also get recommendations from other people with blood or bleeding disorders in your area, your child’s 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 child’s HTC team?
- Do you and your child feel comfortable with the health care provider? Do you and your child trust the health care provider?
- Does the health care provider listen to you and your child? Does the health care provider involve you and your child in their care rather than tell you what to do?
- How does your health care provider approach treatment? Do you and your child feel comfortable with their approach? Is the office staff helpful? Is it easy to make an appointment?
- Is the office conveniently located near your and your child’s home or your work?
- Do the office hours work with your and your child’s schedule?
When choosing a PCP or working with your child’s current one, be sure your child’s health care provider is willing to coordinate care with your child’s HTC team.
Medical and Health Specialists
Throughout your child’s lifetime their PCP or HTC team may refer them to another health care provider to address specific issues or concerns. As medicine becomes more complex, your child 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 your child unless they have been referred by another health care provider. The referring provider may be your child’s hematologist or PCP. In many cases, insurance companies will not pay for a specialist’s care if your child has 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 your child need to see?
Your child will meet many health care providers throughout their 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 your child might meet during this stage of life.
Many HTCs work closely with trusted OB/GYNs or even have such providers on staff. OB/GYNs manage symptoms in women, girls, and people who have the potential to menstruate. People with bleeding disorders often experience heavy menstrual bleeding (HMB), which can negatively impact their quality of life. However, HMB can be addressed by your child's health care provider team. If you would like to have more information about menstrual bleeding, please go to Normal and Abnormal Periods.
Joint disease (called arthropathy) is very common in people with bleeding disorders due to repetitive joint bleeds. Many HTCs work closely with an orthopedic surgeon or even have one as part of their team. They often work with the physical therapist to correct issues of your musculoskeletal system. They may provide surgical interventions, such as synovectomies (surgery to remove the membrane lining a joint), joint replacements, or joint fusions.
These health care providers are often anesthesiologists, who have undergone additional training in managing pain. Many people with bleeding disorders are experiencing acute and chronic pain, even at a young age. Sometimes, a pain specialist can help establish a comprehensive treatment plan to manage your child’s pain and to improve their quality of life. Some HTCs collaborate closely with a pain specialist or even have one on their team. Others will be able to refer you to an appropriate health care provider.
Medical Advocacy
Remember to always advocate for your child and speak up during medical appointments, whether you’re meeting with your child’s 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 child’s visit and the type of provider they are seeing.
- Ask your child’s trusted health care providers for more information or talk to someone else who has gone through a similar experience.
- Contact your child’s 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 child’s medical records with you.
- Make a list of all the medications your child is taking, including any vitamins or supplements.
- Write down any symptoms, even symptoms that might seem unrelated to the purpose of your child’s visit.
- Bring a friend or family member with you to the appointment. They can act as support or fill in any information you or your child may have forgotten.
- Depending on the appointment, ask in advance if there are any pre-appointment restrictions, such as fasting.
During your visit:
Your child’s health care provider will need all essential information about your child’s 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 the questions you and your child have. It is helpful to write these down prior to your visit.
Examples of questions you might ask are:
- What type of condition does my child have? What stage is it in?
- What are the results of my child’s tests? Can we have a copy of them?
- What other tests will my child need?
- What are the treatment options?
- What are the side effects of the treatment?
- Will the treatment affect my child’s daily living activities?
- Do you have any resources we can look at for further information? Does the office or hospital have a resource center?
- Are you willing to coordinate my child’s treatment and all procedures with their medical team including their PCP, HTC team, and other specialists?
- Can we receive a copy of letters being sent to other health care providers?
Asking questions is important, especially when you or your child 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 and your child 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 child’s 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 or your child 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 your child receive further testing or see an additional specialist. If the appointment was not coordinated by the medical office, schedule one with the appropriate office.
Most importantly, keep your child’s HTC team informed and involved in the care your child is receiving from other providers.
If you want more information about how to best communicate with providers, please go to Talking to Your Provider.