Emergency Preparedness

Below is a simplified guide to things you can do to be better prepared for emergencies as well as tips for what to do when an emergency happens. 

If you have one of our red Emergency Medical Information mini-wallets, complete the "Critical Medical Information" side of the insert with a list of any medical conditions you would want emergency medical providers to know about first and keep that side face up.

General things to keep in mind

• Take advantage of opportunities to learn & don’t be afraid to ask questions, even if you rarely have bleeding-related issue - important to be able to effectively communicate important information in case of emergency

• Most emergency medical personnel are not familiar with bleeding disorders - you may encounter confusion & delayed/inadequate care

• Better to address minor injuries before they become serious

Being better prepared

Being better prepared - things to know & do

• Know the 4 “D”s

  • Disorder, drug, dose, doctor

• Teach children the name of their disorder & address so they can tell emergency personnel (or teach them to point out their medical ID)

• Have a "Go Bag" with a dose of factor and copy of treatment letter and/or first aid kit - make sure friends & family know where it's kept

• Make sure your house number is visible (if applicable)

• Have a family member or friend who can advocate for your care in case you can’t (emergency contact)

Being better prepared - HTC/hematologist

• Visit your HTC/hematologist regularly to ensure your treatment protocol is updated as needed

• Consult ASAP before scheduled medical/dental procedures - assess bleeding risk & determine appropriate treatment protocol

• Ask which ERs carry factor/which ER to go to in an emergency

• Order meds & supplies on time

• Ask for an emergency/travel letter

  • ER might need to use factor/medication brought in from home

  • Whether patient is authorized to mix own factor

  • Factor to be administered prior to any diagnostic testing, including treatment protocol regarding head injuries (treat with or without symptoms)

• If you don't treat prophylactically, ask about keeping a dose of factor at home

Being better prepared - medical information

• Have a plain medical ID bracelet or necklace

• Wallet card/medical information mini-wallet

• Seat belt cover

• Add "ICE" in front of emergency contact names in phone

• Utilize lock screen medical information app on phone

• Keep multiple hard copies in central location at home & in car

• Keep digital copies on phone - share with close family & friends

• Update medical information regularly (put a reminder on your calendar at regular intervals) - weight affects dosing

• MedicAlert Advantage: add documentation - can fax to ER

• Get updated emergency/travel letter on regular basis

Being better prepared - affected children

• Ask HTC about doing a school visit

• Meet with nurse & teachers to discuss your child’s needs

  • Provide information about types of possible bleeds & explain that some are internal and may have no outwardly visible signs

  • Consider getting a 504 plan for special accomodations

  • Preferred ER for the child to go to in case of emergency (unless the situation is life-threatening or involves significant trauma)

• Request a dose of medication be kept on hand in case of emergency

Being better prepared - local fire/EMS agency

• Meet with local fire/EMS agency - especially helpful for affected children who may not be able to explain their condition

• Ask if they keep records on special needs patients in their district & provide copy of medical information if they do

• Ask if they can have local dispatch flag your address - include phone number of your HTC/hematologist

Being better prepared - local emergency rooms

• Meet with local ERs to discuss bleeding disorder, treatment, & triage for bleeding-related emergency

• Ask about policy regarding bringing factor from home

When you have to call 911

Things to keep in mind about calling 911

• EMS likely unfamiliar with bleeding disorders, especially in rural areas with lower call volumes and volunteer EMS agencies, but all emergency medical personnel are trained in dealing with uncontrolled bleeding

• Different levels of EMS care

  • EMT-B (basic): check vitals and provide basic emergency care

  • EMT-A (advance): can typically give basic IV medications and intubate (depending on state & county protocols)

  • EMT-P (paramedic): highest level of pre-hospital care

• Dispatcher will decide if a paramedic is initially necessary, but first responders and EMTs can request a paramedic to the scene if not requested by dispatcher

• Enroute treatments are generally limited, such as giving oxygen/fluids/pain meds, and probably won't be able to administer factor medication (have to follow state & county protocols)

• If emergency is bleeding-related or trauma that could cause bleeding, it's best to ask EMS to transport patient to closest hospital that carries factor, but patients with a life-threatening condition will likely be taken to closest ER & those with significant trauma will be taken to a trauma center

When you have to call 911 - general tips

• Try to stay calm & make sure the scene is safe

• Unlock doors

• Turn on outside light (at night)

• Clear a path for EMS & put pets away

• Send someone to let EMS know patient location

• Grab anything that needs to go with the patient (cell phone & charger, insurance card, etc)

When you have to call 911 - patient care

• Don't move patient if call is due to trauma (unless necessary due to safety/location)

• Help them stay calm & keep talking to them

• Have one person stay with the patient at all times (if possible)

When you have to call 911 - dispatch

• Tell dispatch that the person has a bleeding disorder (“bleeder”) & which local ER they need to be taken to if emergency is bleeding-related or could result in bleeding

• Calmly communicate all relevant information

• Answer all questions in a clear & concise manner

When you have to call 911 - HTC/hematologist

• Notify HTC/hematologist ASAP & ask them to call ahead and prepare ER

• Make sure both you and HTC/hematologist are clear on which ER you are going to

• Let them know if planning on bringing factor from home

When you have to call 911 - EMS on scene

• Inform EMS about bleeding disorder & make connection between injury/symptoms & bleeding disorder

• Ask about transporting patient to preferred ER if emergency is bleeding-related or could result in bleeding

• Provide dose of factor & treatment letter whenever possible

• Provide list of medical conditions, medications, allergies - write a quick list if you don't have one