Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].
I have an 18-month-old son with severe hemophilia A. How do I get doctors and hospitals to take my concerns seriously? We’ve had several instances where the triage nurse at the hospital’s emergency room didn’t think a muscle bleed was a serious concern because there was no outward bleeding. We’ve also seen doctors who were unwilling to administer factor until after scans had been completed—completely ignoring the advice of my son’s hematology team. How do I fight so my child gets proper care?
This is a concerning barrier that so many people within our community are facing. Unfortunately, many parents encounter emergency room (ER) staff who are not familiar with bleeding disorders because these conditions are so rare. As you mentioned, internal bleeds can be overlooked and not recognized as a serious concern because of the ER staff’s knowledge deficit. Knowing this doesn’t help any existing anxiety prompted by an ER visit, let alone having to overcome these barriers to get prompt care for your child.
Developing an emergency plan or adding to your existing one is essential for advocacy at the ER. Here are some tips on what you can add to your advocacy toolbox:
- Carry an emergency letter from your hemophilia treatment center (HTC). The letter will provide specific information about your child and his diagnosis, as well as the presentation of his bleeds, his current treatment plan and contact information for the HTC.
- Carry two documents from the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC). MASAC Document 257 – Guidelines for Emergency Department Management of Individuals with Hemophilia and Other Bleeding Disorders and MASAC Document 113 – Recommendations on Improved Access to Emergency Medical Care for Persons with Inherited Bleeding Disorders specifically address triage guidelines, including the importance of administering treatment before X-rays, scans and other diagnostic tests. Keep extra copies so you can leave them behind for ER personnel.
- Call your HTC (or on-call service) on your way to the hospital. Your HTC or on-call doctor can often call ahead to the hospital and give specific information about your child and potential guidance. If possible, ask them for the name of the person they spoke with at the ER. This can be helpful since that person will be aware that you are on your way. You can also call ahead to let the ER staff know you are coming.
Additionally, there are opportunities for advocacy, education and relationship building with the ER staff before an emergency. You can call your hospital’s director of emergency medicine or the ER charge nurse to request a meeting to make them aware of a child in their service area who has a bleeding disorder, and you can provide them with copies of your emergency letter and the MASAC documents. Ask them how they can support you and your child in getting necessary and prompt care.
You can also contact your HTC social worker for guidance, and help connecting with other families within the bleeding disorders community. These parents can share their own successes in navigating life with a child who has a bleeding disorder, including their hospital experiences.
To find other MASAC recommendations and advisories for the bleeding disorders community, visit the NHF website. Another great resource is NHF’s Steps for Living site, which has a section on ER visits.
Olivia, I hope you can add some of these ideas to your toolbox, and I encourage you to continue your advocacy efforts. Keep talking, keep educating, stand firm and be heard. Don’t forget to rest and take care of yourself; this isn’t easy. Stay well.
—Kathaleen M. Schnur, LCSW
Schnur is a social worker at the Hemophilia Center of Western Pennsylvania in Pittsburgh and a member of the Social Work Working Group.