Answer The @#$%^& Phone

 Return the %^&*() email.

Answer the *&())(*&^ question.

Own the $%^& problem.

Everything is harder than it needs to be for people with ALS and caregivers.  Sometimes the barriers are the very organizations and people who are supposed to be helping them.  Do they even know?  Do they even care?  

In the last two days I heard multiple examples from people with ALS and caregivers.  One needing help told of five failed attempts to reach a clinical research site coordinator.  Another told of an email to a major ALS research organization inquiring about a study.  The email got no response after two weeks.  Yet another issued a social media plea for help when all other avenues had failed to help find options for long-term care.

These things happen all the time, and they make dealing with ALS more difficult and frustrating and sometimes, maddening.  

Do organizations even know that they are dropping the ball constantly on the people they are supposed to be helping?  Do clinical research staff accept that they owe people with ALS prompt responses to their questions?  Does anyone measure customer service?  

Many years ago I emailed a vp of a major ALS organization suggesting that they might want to try a secret shopper to do some inquiries that a patient or caregiver would do, just to measure the speed (or lack thereof) and quality of their responses.  My email never got a reply.  I rest my case.

I encourage every organization that gets inquiries from people with ALS and caregivers to take customer service seriously.  It will make life significantly easier for those dealing with ALS.

1. Answer phones and messages promptly (that means on the ALS clock and not your clock).
2. Answer the questions asked, and if you don't know answers, find them so that you can answer those questions next time.
3. Never punt.  Steve Gleason taught us that.  If you get messages from people with ALS and caregivers. you need to take them seriously and personally.  Referring a caregiver or person with ALS to someone else without helping with the handoff and insuring that there are no fumbles is simply wrong.
4. Test your own organizations.  Maybe an incognito board member might like to make some inquiries to see how you do.  Maybe you can hire a secret shopper.  Maybe a volunteer will help you with that.  You need to measure!  And don't save it for a post-experience customer satisfaction survey that will just make more work for a caregiver or person with ALS.
5. Make sure that poor customer service has consequences that will help fix your problem. Do you value employees who deliver bad customer as much as those who take the time and effort to deliver good customer service?

It's not hard.

But if you don't do it, you are making the lives of people with ALS and caregivers much harder.

Think about that, please.