Comprehensive Care Hemophilia

3Comprehensive Carefor HemophiliaNurse CoordinatorThe nurse coordinator is your key contact in the comprehensivecare team. She/he coordinates when you and your child see othermembers of the team. In most HTCs, the nurse coordinator is theperson who answers your telephone calls. If your child needs to goto the HTC to treat a bleed, the nurse coordinator is often theperson who makes sure the infusion goes smoothly.An important part of the nurse coordinator’s job is teaching peopleabout hemophilia. She/he can go to your child’s daycare centre orschool to educate teachers and staff. The nurse coordinator canalso give you useful booklets and videos on hemophilia producedby the Canadian Hemophilia Society (CHS). There is a wide rangeof resources for different people involved in providing care forchildren with hemophilia such as family members, teachers,babysitters, and local nurses. The CHS also has colourful activitybooks and guides to help children understand hemophilia, how itis treated and what to do to stay healthy. Ask the HTC for copies ofthese educational materials, or contact the CHS.When your child is old enough, the nurse coordinator will trainyou and your child to do home infusion, if this is needed. At alater date, when your child is older, the nurse coordinator willteach him how to self-infuse. See Chapter 7, Home Infusion.Get to know your nurse coordinator. She/he is there to help you.Do not be afraid to ask questions, even if they seem simple or silly.You can be sure that parents of other children with hemophiliaask similar questions.“She always mademe feel that myquestions mattered.Our nurse hasbecome our friend.She has guided usthrough some toughtimes. My son trustsher and has hisown relationshipwith her.”If you have a problem of any kind, it is important to solve it rightaway. Phoning your nurse coordinator does not always mean thatyou will have to take your child to the hospital. Often you will beable to solve the problem over the phone.The nurse coordinator treats many children with hemophilia. Thismeans she/he knows a lot about the bleeding disorder and isexperienced in treating it.3-8All AboutHemophiliaAGuideforFamilies