Dr Burns stopped by the other night, as I wrote about recently. It usually leads me to have to do some more research etc. He said he would arrange a meeting with all the stakeholders to discuss my “case”. I undertook to write a discussion document spelling out clearly, in point form please, why I want to use the Parkinson’s Canada guideline and what that would look like.
How to simplify?
Can one simplify a complex standard of care for a complex disease like Parkinson’s, when it is in fact several diseases with constantly changing symptoms? So I said let’s give it a try at least and so I started compiling my discussion document as promised. I have gone through the process several times A=and scrapped it again and started over. In my thinking process I kept in mind many comments I heard while working on a related project as I reported yesterday.
Some background – when I was first diagnosed, I started learning about this malady, I’m smart and I’ll lick it. Early on I found the book, Every Victory Counts, which was later updated for the Parkinson’s Canada version.
The guide promises that you could live well with Parkinson’s. So I dove in boots and all. The basic philosophy was that you should take ownership of your disease, get to know your symptoms. Then surround yourself with your team of specialists, chaired by your family doctor.
The Guide’s Structure
To facilitate its use, the evc guide is divided into the following parts:
|1) Parkinson’s 101|
2) Groups of Symptoms.
Motor symptoms (1 chapter) and 4 chapters on non-motor symptoms.
3) Medications and treatments (several chapters)
4) Four more important chapters on Living Well with Parkinson’s
5) The Forms
The forms are a key element to make the EVC guide work.
I recognize that it is a daunting task to have to study a more than 500 page patient care standard, and one cannot expect the facility physician to do that for all the medical conditions he might encounter. And yet we are required/expected to just that!
How To Implement
I will post the action plan, in point form, as a separate post so that we can use it as discussion document at the meeting Dr Burns undertook to arrange.
I will show that it feasible and desirable to implement this practice standard for Parkinson’s, and why it is worth spending the time on it.
For my part I have spent a considerable time and research preparing for the meeting and compiling this material, and I believe it is a good investment in spite of the hard time I am going through personally.
I intend to publish a companion post, hopefully later tonight in which I will describe my experience with using the guide for an extended period, the lessons learned, I believe it will make our task here easier.
Why Is It worthwhile?
One always learns a lot when you implements a new system but more important it is an opportunity to give.
On a more practical level it gives Kiwanis tools for marketing, and applying for grants.