I'm tired of being the lone nut

Take a quick moment and watch this video - 3mins, worth your time - https://www.youtube.com/watch?v=V74AxCqOTvg

I am the lone nut, doing what often feels like a drunken dance in the rain. My drunken dance is one to say that what we have today isn't good enough, and we, the CF Community, know more and can do more and can do better, but we have got to do it differently. When I'm refusing to settle for the status quo, to accept that change happens slowly, being reprimanded for disrespecting and hurting people's feelings when I speak what I believe to be so true, I am the lone nut. When I'm pushing against the inertia of the current healthcare system, one that is failing us all in a big way, people stop and stare but they don't understand, and I'm still the lone nut. But this is about all of us, the cf community! The stakes are too high here, you see. Coming home from NACFC where I realize once again just how little we know about the best treatment options for any given bacteria or fungus or patient, where the clinical recommendations for cleaning equipment vary center to center and contradict the recommendations of the CFF guidelines (if they exist) and the manufacturer recommendations. What do we do?Continue blindly into the next phase? Or must we say STOP! Enough!! Fucking enough! This isn't a game, this is my kids life! 
I had the opportunity to listen in on a call today about the new CF Experience of Care Survey that will be going out to all care centers so that the CFF can collect more data on patients and try to better understand our experience of care. But the experience of care is not one sided - its me and my doctor or care team - yet we aren't surveying them. What if both parties involved in this relationship were surveyed and the improvement efforts involved closing the gap between the two? While I understand the intention, its misguided. Patients, the most overworked and under appreciated member of the healthcare team, are once again being asked to do more, to give more, so that someone else can learn. Its my damn data, and I want to see the results of it. I don't want my care team to be the gatekeeper of it. In fact, care teams are being incentiveized to get patients to fill out this survey twice a year, and the patients still gets nothing more than more to do. If information is generated about me, I deserve access to it, and I want to be part of the improvement efforts to make right whatever is wrong. Can we please put the patient at the center of something? 
I've heard from so many people over even just the last 6mo about their frustrations with the status quo in CF Care. These are people who have great ideas and great desperation as their lives or the lives of their children or grandchildren are at stake. I'm telling you that I cannot be the lone nut anymore.  I'm begging you, you cf mamas with passion burning deep for your kids, you cf dads who are using their brains and the love of their kids to hack the system and are desperately trying to find ways to share your brilliant solutions. You sisters and sister in laws who are fundraising, advocating, praying for the cure. The grandparents who can't bear to see their own children suffer through the physical and emotional exhausting of parenting a chronically ill child. We need to stand together and say ENOUGH!! We need to do something about this! This applies across conditions, across generations.  We cannot continue to do more of the same and expect somethings different. We should not be the advisors in healthcare, we are the leaders. We are not fitting into this broken system so let's turn it around and make the healthcare system fit into our lives. Let's share what we know, with pride, and cure these diseases. I'm starting a movement, but I can't do it alone. 

If you're curious and you want better than what we have today, join the convo on Smart Patients where we are talking about what really matters in our lives, and where major decision makers are listening (www.smartpatients.com/cf). 

Watch these videos that show how patient voices are making advances in health care: https://www.youtube.com/watch?v=Zsn_9EplBz8&feature=youtu.be

Here is video showing how parent voices in the IBD disease community are making a difference, and is a model for the work that we are doing in CF: https://www.youtube.com/watch?v=mljKTqHcdiA

Sign up to learn more about your job in this movement; we all have one, and we need you all  https://www.surveymonkey.com/r/CFCareModelDesignProject