I live in a small town – population 600. We have a fabulous volunteer fire department with volunteer paramedics who work closely with the local ambulance company. I know because while Mary was alive, they were frequent visitors at our home.
The closest hospital is 12 miles away. They know nothing of ALS; they didn’t even properly treat Mary’s bloody nose well before her diagnosis. Long story. Suffice it to say there is no way in hell she would go there (neither will the ambulance drivers). The next closest hospital is 19 miles away. We went there several times, when it was “unplanned/urgent”. The hospital next to the ALS Clinic is 29 miles away; that’s where we went for “planned” stays.
Some tips to share from my experiences:
1. Before an emergency: Contact your local Fire Department. Let them know someone at the address has ALS; educate them in advance if you need to.
2. Before an emergency: Contact the ambulance company. Have them flag your address with someone who has ALS, who may be unable to communicate, and what equipment they use.
3. ALWAYS go to the ER by ambulance. You do not want your pALS hanging out in the waiting area, exposed to who knows what, with a compromised ability to shake off even a cold. “Walk-ins” are automatically lower on the triage scale; if you come in via ambulance you will be in a treatment room immediately.
4. Arrange ahead of time with your ALS clinic; if your pALS can wait, have ambulance personnel take them to a larger hospital. Tell them it is “Physician Request”.
5. If your pALS uses a bipap/avaps/vent, send it on the ambulance with them. Have them plug it in to the ambulance outlet so they are actively using it when they arrive. It will make it harder for the ER personnel to think “oh they don’t need it, it’s just a cpap” if they are already on it. They may, for liability reasons, want to switch your pALS to the hospital’s equipment. That’s fine; they can get the settings right much more quickly with the home equipment there.
6. If there is any chance your pALS could be admitted, take your Cough Assist with you. Small town hospitals may not have one; larger hospitals may take days to track theirs down. Same goes for feeding tube supplies and formula.
7. Always have an updated medication list; while waiting for the ambulance, note the date, time and dosage of the last time they received each meds. Send it with them on the ambulance, along with a list of any allergies. Don’t trust that the hospital will have them on file just because you’ve sent them before. Take copies of these with YOU: POLST, Five Wishes, Living Will, Medical Power of Attorney, DNR, etc. I always had the originals and copies so the originals never left my hands.
8. If your pALS has trouble communicating, take any communication equipment with you to the hospital.
9. Don’t be afraid to challenge the ER personnel about what your pALS needs. Ask if they are familiar with ALS. Ask if they have a neurologist, pulmonologist, respiratory therapist available. Give them the numbers of your pALS’ doctors and suggest they call for a consult.
10. If you don’t get what you need, if you are being brushed off, ask to speak to the Patient Advocate or Quality Management team. Often this is enough to get them moving.
Call on your ALS Community – other CALS, widows, family members. Let them know what support you need. There are a lot of experienced folks around. But also remember every pALS is different, every pALS has a different medical history; what is right for one person is not the best choice for another. Trust your gut.