[Juanitad]

Hello everyone - I need your input. My daughter (a nurse) and I have been serving on a patient advisory board at our local hospital for the last several months. After my last hospitalization in 11/2010 (which had some problems), we were asked to participate to see if we could help make the experience better for all patients. We are also working with the nursing care board to better educate them on how to treat all rare diseases in the ER and in-patient.

We are currently looking at the 10 most "common" rare diseases, one of which is mg. The nursing board is trying to put together a list of bullet points for the nursing staff to look at when a patient presents with mg problems, either through the ER or in-patient. I just looked at the proposed guidelines (first try) for mg and to me, they don't really do the job. Of course, the nurse who drafted them has never treated anyone with mg in any format.

I know I have my thoughts about what an ER should look for when a mg patient shows up in the ER, usually with a crisis brought on by being unable to breathe properly. First of all would be, don't look at the oxygen level and assume everything is okay because the levels look good. Don't assume the patient is just having a panic attack and dismiss them. (Of course I'm having a panic attack, I CAN'T BREATHE!) Second would be, call my neuro if I ask yiou to. Chances are that I have already talked to her/him and they sent me to the ER in the first place. They know how to best treat the problem. I know there are tests that should be performed and the MG Foundation of Ameria has a good checklist.

What are your suggestions? I'd like to get some first hand experiences (besides mine) to present. My next meeting with the nursing staff is Sept 6 so any help you can give will be greatly appreciated.

[alice md]

First, I think this is an excellent initiative and its good that you have such co-operation from the ER.

my advice is that as a first step you should think what kind of MG patients would be coming to the ER and why.
I believe you would have a mixed population of not yet diagnosed, recently diagnosed and "highly experienced" MG patients, and each would probably require a somewhat different approach.

I would also check which neurologists and respiratory physicians have admitting permissions in your hospital and try to work with them.

Ideally, I would try to contact MG patients, living in your area, who have been in this ER and try to get from them first-hand what was good and what they think should be improved.

I would then prepare educational material for the staff, and for the patients. I would try and get one or two people from the staff highly involved so that they can educate others.

I can't specifically comment on guidelines I have not seen, but as a rule guidelines on their own are not enough and create what I call- "flow-chart physicians" , which is one of the flaws of modern medicine.