It goes without saying that Healthcare professionals should at least have some awareness of ALS. This would be highly presumptive. It would be like saying every professional chef is aware of every recipe that exists. It simply is not possible, Healthcare professionals tend to focus in a specific area of interest to them. And although they do have a vast knowledge of diseases in general they are not required to have in-depth knowledge outside of their area of expertise.
Take for example a neurologist, I don’t know how true this is and I can’t recall who shared it with me. I have been told that a neurologist in the US may encounter 1 ALS patient in their career. I am not saying this to get called out, but to emphasize the overall lack of awareness of ALS as a disease.
There are all kinds of figures floating out there such as:
- there are approximately 30k ALS patients in the US
- the CDC reports 12 to 15k
- every 90 minutes someone is diagnosed or passes away from ALS
- military veterans are twice as likely to develop ALS
*90-95% of ALS cases are sporadic, 5-10% are Famelial
As you can see it is daunting to keep up with all of the information on ALS. Add to this all the amazing research, clinical trials and endeavors to create awareness and one can get lost in the figures alone.
Back to my original concern, awareness by Healthcare professionals. I will stick with one area of healthcare, emergency departments. Having worked in Emergency and Trauma myself I can attest to this. I knew very little about ALS.
Emergency departments can be very dangerous to ALS patients in advanced stages. This is due to the fact that if the patient is not able to communicate and the staff are not aware of the patient’s condition trouble will ensue. There are protocols ER’s apply to every patient depending on the immediate needs. For trauma it is spine boards, C- collars and oxygen; all three can be deadly to an ALS patient. Sedatives and painkillers can also compromise an ALS patients respirations.
Covid turned everything upsidedown and made impossible to remain with pALS when admitted last year. I suspect a number of pALS passed not from covid, but from the effects of limitations of access to personal Caregivers while in hospital.
So what can you do to lessen complications from ER visits and EMS services.
- As your condition progresses make contact with your nearest First Responders and offer to educate them on ALS.
- Have either a written statement that includes medical history and meds.
- Never throw away pill bottles if you use a pill organizer! If admitted to hospital they will require original container to administer “YOUR” own meds.
- Take all meds to hospital, Hospitals do not stock every medicine, they may not have access to highly specialized/unique meds.
- Plan for communication challenges. *Always have a low-tech method of communication available if your pALS can’t communicate.
- Prepare a packet of medical/legal documents. Better yet compile everything on a tablet or app, accessible to anyone needing it.
!!Most of all remember that EMS and ER staff are extremely well trained and will always focus on life threatening needs first!!
For many years there has been a push to establish a national hotline for healthcare professionals when treating the ALS patient. Last I heard is that the logistics for this are too daunting.
I could go on but you get the message. Awareness and education is important at every level.