MyICU is an ongoing project blending the science behind post intensive care syndrome with the practical implications of PICS for former ICU patients and their families.
Our recent research shows that the financial implications of PICS far outweigh the medical consequences. Of course, for most former ICU patients, financial reality interferes with proper medical care. We all know that, except for very few, most of us live week to week, struggling to keep up with the cost of living. PICS is a monkeywrench thrown into the lives of millions of people every year. It is fair to opine that no one expects or plans to have PICS. That opinion isn't just because most people are unaware of PICS.. It is because, if we take a practical, long look at PICS, we cannot help but conclude that money is the biggest impediment to receiving proper post ICU care.
According to surveys, conducted at our sister website, posticu.org, financial issues stymie and plague more of our survey respondents (former ICU patients and their families) than do medical outcomes. The lack of financial resources available to use for payment towards a proper review of former ICU patients' systems after an ICU stay can devastate former ICU patient and their families.
MyICU, when completed, will be a guide for former ICU patients and the families. The guide will include a website, a workbook, and an app focusing on providing practical information about what to do, while a loved one is in the ICU and what to do "PostICU'.
The guide will include a series of questions for families to answer, while their loved one is in the ICU. The answers provided will generate a collection of helpful medical, financial, governmental, and other resources.
We hope to provide practical interventions addressing common situations, such as missed time from work, an inability to return to work, follow-up medical care resources, symptoms to be aware of and to look for, how to explain PICS symptoms to PCPs, how to access medical records (and how to make sense of them), and; how to find PICS related medical care,
Our mission is to be a force that opens doors with hospitals, healthcare providers, and health insurance companies. Are any of these groups and/or organizations living up to their DUTY to provide proper after care to former ICU patients? An unequivocal NO answers that question.
MyICU, besides providing practical support to former ICU patients and their families, has a secondary, and equally important, mission to get a seat at the table with the groups and organizations responsible for attending to and paying for the medical care of former ICU patients and their family members suffering from PICS. Because, at present, we are unaware of any organization that is advocating for the rights of former ICU patients and their families. The time has come for that to change.