Patient Advocates Speak Out

                                                    Patient Advocates Speak Out

My name is Betty Tonsing.  My book, Stand in the Way! Patient Advocates Speak Out, was published last year.  This book stemmed from my own experience with my husband’s profound illness with a hospital infection following a successful knee replacement.  As his ‘patient advocate’—and resulting from many months of hospitalizations and residential care -- I was astonished to witness all that I did, and wondered if I was alone with this experience.  I found out that, ‘no’ – I was not alone – but I clearly felt alone.   I wrote the book so that others in my position would know they were not alone.  In addition to my own journal, several hundred people who had been patient advocates (for a family member or friend, NOT a paid professional advocate) responded to a national survey, and an additional twenty people were interviewed.  Their  stories spanned a wide horizon of experiences related to hospitalizations, nursing home and rehab facilities, issues with medications, medical personnel, pharmacies, social workers and insurance companies.
 
In my initial survey, I collected meaningful data that  helped describe what a patient advocate looks like.  For example, Of those who responded, most were women; most were over the age of 50; most were already working full time and advocating for someone with a serious illness – and now faced a longer ‘work week’; half experienced  mild to complete resistance; and got most of their information that they needed from the Internet. 60% had the essential durable or medical power of attorney that is required to have access to the medical chart and make decisions if the patient one is caring for becomes, or is, incognizant. Almost 75% of those surveyed stated that their own well-being was impaired and more than half (55%) did not feel prepared to be a patient advocate.  If  the routine hospitalization or residential care they expected became more serious or a crisis, many became overwhelmed as a patient advocate.  I also got compelling anecdotes or stories that I shared so that people know – they are not alone.  
Today, almost everyone I speak with agrees that no one – under any circumstances – should be hospitalized or in a nursing home or rehab facility – without a patient advocate.  Perhaps more than one!  Medical errors and hospital acquired infections are the third leading cause of death in the United States, following heart disease and cancer.   50% of the hospital infections and 90% of the medical errors are preventable and medication errors account for 25% to 35% of the medical errors.  Can patient advocates makes a difference?? And if so, how???  How can patient advocates make a difference?  This survey is ONLY for volunteer patient advocates, not paid professionals.

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