Living with a chronic condition like a bleeding disorder can often mean frequent visits to emergency rooms and hospitals. Becoming a good self-advocate and developing good communication skills with providers can lead to better health outcomes. This toolkit offers resources to help you be a better partner in your or your child’s healthcare.
- presentations (recorded webinars, videos)
- downloads (articles, documents)
- links to other resources
Note: Inclusion of resources by a third party site or organization do not constitute an endorsement by HFA, the HFA Board, volunteers or staff.
|HFA Families Webinar: “Doctor, Doctor, Give Me the News: Communication in the ER: At some point in your bleeding disorders journey, you will likely need to visit an emergency room. While those visits can’t be anticipated, patients and caregivers can plan ahead by proactively thinking about how an emergency room works and how to effectively communicate your child’s needs and their bleeding disorder.|
|Sample ER letter: Ask your HTC or provider for a letter that you can present in an emergency room that outlines your/your child’s diagnosis, treatment protocol, and provides contact information. This is a sample of what such a letter could include.
|To Go Bag: This document includes a checklist of items you might consider keeping handy – The bag can be helpful in many circumstances: when you need to “grab and go” for the emergency room, a natural disaster, or on a fun, spontaneous day for a road trip|
|Emergency Information Card: This customizable tag is intended to be placed on a car seat or in a vehicle’s visor and is meant to be a quick reference for emergency medical responders. It is encouraged for you to have this document laminated after customizing.|
|Bleeders Bill of Rights: This tool, developed by HFA’s Care Access Working Group (CAWG), is about self-advocacy and empowerment. Use it to remind yourself of your rights, your choices, and your power.|
|Medical Consent Form: This customizable document is an example of a medical consent form. It could be used for minor children if the parent/guardian leaves the child in the care of another adult.|
|Comprehensive Clinic Checklist: As part of your or your child’s bleeding disorders management, it is customary to be seen by your healthcare provider or Hemophilia Treatment Center at least once a year for a comprehensive clinic visit. This fillable resources will help you organize your questions and concerns before, during and after your clinic visit.|
|Dear Addy: HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance. The following are Dear Addy questions and answers about emergency care, finding a hematologist, and informed consent.|
LINKS TO OTHER RESOURCES
|MASAC: NHF’s Medical and Scientific Advisory Council (MASAC) was created in 1954 to issue recommendations and advisories on treatment, research and other general health concerns for the bleeding disorders community. The following are recommendations about emergency care:|
|National Hemophilia Foundation: Hemaware: The following includes an article from NHF’s Magazine, Hemaware.
|ATHN: The American Thrombosis and Hemostasis Network (ATHN) is a nonprofit organization committed to advancing and improving care for individuals affected by bleeding and thrombotic disorders. ATHN manages a national database of patient health data that can be used to improve care and support vital research. This document was developed as an instructional manual for medical providers in emergency rooms about the basics of hemophilia treatment.|
|Emergency Care for You: This site from the American College of Emergency Physicians offers consumer friendly resources for navigating the emergency room. Below is just a sample of some of the resources offered:|
|YOU: The Smart Patient: This book by famed Drs. Michael F Rozien and Mehmet Oz offers tips and tricks on how you can get the best health care.|
|CDC, Centers for Disease Control & Prevention: The CDC Division of Blood Disorders offers many resources to learn more about bleeding disorders, including a directory of the federally funded Hemophilia Treatment Centers (HTC) across the United States.|