Friday, June 26, 2009

I need your stories!!!!!

It seems, these days, each time I make a post I begin with apologizing for how long it has been since my last post.

Perhaps it is time for me to stop apologizing and just say that I will do my best to post as often as possible. March and April were so busy (not complaining) that it took all of May and most of June for me to recover. I am finally starting to feel human again.

This is my down time for the year and it is filled with writing a new book. Not the book I have promised in the past; that had to be put on hold until 2010. This book is called "Finding Your Voice: A Patient Advocacy Workbook" and I am honored to say it is grant funded.

I got the idea to write this book last year when I was giving a workshop at a local retirement community. Two residents were saying that they were uncomfortable with the fact that they didn't have a solid patient advocate nearby; like a child or a spouse. The people who would be advocating for them would be friends and acquaintances and so they doubted the advocates' abilities to know the finer nuances of their wishes. It is my hope that this workbook will provide a resource for friends, acquaintances and even strangers to understood not only the "check the boxes" wishes of the book's owner but to also understand their experiences, beliefs and goals. If we understand these three things, we will be a good advocate.

A secondary but equally important function of this workbook is to allow people filling out the pages to learn more about themselves in the process. Often we have general ideas about things but, when prompted, realize we haven't thought it through all of the way. Sometimes, it takes being asked a question to see your beliefs in a new way. So, while this book is designed to be a tool for the reader it is my hope and belief that it will also be a clarifying and affirming journey for the owner.

Finally, a third purpose to the workbook has emerged and that is to look at all of the ways that we can function as a patient advocate. When we use that term, for most of us, it conjures up images of a person pounding on the nurses station and demanding answers. That is one kind of advocate, one I call "The Tornado Advocate." While this is a valuable person to be or have on your side, this is only one sample of what it might look like to be an effective advocate.

Perhaps you are the person who sits by the bed to comfort the patient in times of fear or overwhelm. Perhaps you are the person who is "behind the scenes" and deals with insurance, bills and other paperwork. Perhaps you are motivated to function less at a personal level and prefer to be involved on a community, state or national level. This are just a few more snapshots of patient advocacy roles; all of them are equal and all of them should be respected.

This workbook will be looking at many different advocacy styles and activities. The book will be broken into "advocating for oneself," "advocating for a child," "advocating for a spouse, sibling or friend" "advocating for a parent," and "advocating for a stranger." In each of these sections there will be stories, tips, refection questions and a place to write action items.

I have already interviewed two wonderful people with great advocacy stories. One woman told me the story of her daughter being diagnosed with CF and not receiving quality care from her local hospital. With determination and passion, this mother did not blindly accept the bad news her doctors gave her but sought out every avenue she could find until she found better care. Today her daughter is 16 and a cheerleader. She attributes her daughter's life to the fact that she got better care and did not accept what she felt in her gut to be incorrect information.

Another woman I spoke to told me about the catch 22 she finds herself in: she makes $1,000 a month which is too much for prescription aid but her co-pays on two medications alone are $850.00 and $400.00. Inspired by her own need and the thought of other patients now and in the future, she has taken her case to the state and national level. With a meticulous and tireless letter writing campaign, she has gotten the attention of her state and US senators. The wheels turn slowly, but she is turning them.

These are just the kinds of stories I need! Do you have any stories about patient advocacy on a personal, community, state or national level? If so, I would love to set up a time to interview you for the workbook. Without your stories, this book simply won't happen.

What are you waiting for? Email me!

Thank you as always for your support and generosity. Life is good for me and I hope it is for you too.