In my dream world, there would be a consistent message given by the neurologist to every patient and family on the first clinic visit --
- Go to www.cdc.gov/ALS and self-register in the ALS National Registry. That is the only way to insure that your case will be counted and that your clues will be retained for scientific research. We will help you.
- Find a physician doing clinical trials and participate in a clinical trial. The only thing the least bit "promising" would be experimental. We will help you.
Then this should be discussed on the second visit and the third until the patient and family have made an informed decision on each of these critical actions.
There are some troubling reports on ALS message boards this week about misinformation being given to patients by neurologists (specifically regarding qualifications for the Diaphragm Pacing System). It has been so long since anything good has been made available for people with ALS that perhaps the doctors aren't used to reading literature or looking up things carefully. Everything is harder with ALS. You listen to the doctors and then you have to conduct your own fact verification to make sure you got the right information. Time is precious. Why can't clinics and doctors get the facts and options for patients correct?
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