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