Monday, October 5, 2015

What Does "Right Care" Mean to Me?

The Lown Institute is organizing a "Right Care Action Week" (#RCAW) for October 18-24, 2015.  I applaud their efforts and their dedication to "transforming the culture of medicine and building a healthcare system that is affordable, effective, personal, and just." This blog is my attempt to describe what "Right Care" means to me and (hopefully) to the gastroparesis community as a whole.  For additional information regarding RCAW, please visit the Lown Institute website at and view the specifics of RCAW at  Won't you join the fight to create a better healthcare system?


What does “Right Care” (#RightCare) care mean to me? It means a world in which everyone involved in my life – loved ones, medical professionals, insurance and pharmaceutical companies, policymakers, and even the media – work together to treat me as a person, listen to my concerns, and collaborate with me on my health needs, treatments, and goals. It means a health care system in which all in the Gastroparesis (#Gastroparesis) community are believed and taken seriously, treated with compassion, and respect, and valued as human beings with hopes, dreams, and goals.

It is a world in which we are able to find doctors/specialists who are educated about and understand our condition and who are near enough that we are not forced to travel long distances to see them. It means being able to schedule an appointment when we need to be seen and not having to wait months on end, in pain, before our needs are addressed. It is a world in which doctors stop treating us as hypochondriacs and drug-seekers, and instead, begin to help us understand our options and work with us to find a treatment plan that actually improves our quality of life. It is a world filled with doctors who do not push us out their doors because we are "too complex" and there is "nothing more" they can do. It is an ER where the medical staff does not turn us away, leave us in agony, and offer us no relief, hope, or alternatives when we turn to them in the midst of our fear, crisis, and pain.

Furthermore, it is a system under which the FDA and insurance companies stop denying us necessary treatments that we know from personal experience help us with our symptoms – one where we are free to make our own choices and weigh the risks of such treatment for ourselves. It is a system where pharmaceutical companies search diligently for safe, more effective treatments and cures and do not charge outrageous prices for our life-saving drugs.

It is a world in which government officials, policymakers, and agencies show respect for the seriousness of our illness and the consequences that flow from it. It is one in which research, education, and awareness activities are supported and funded by the powers that be. It is a system under which Gastroparesis is treated as the devastating disability we know it to be.

And finally, "Right Care" is a world which includes loved ones, the general public, and media outlets who attempt to understand, support, and help spread awareness of our disease. “Right Care” includes family and friends who believe we are truly ill and who do their best to accommodate our situation, who understand when we cannot do everything asked of us. It includes members of the general public and media who do their best to see us as we truly are and assist us in getting the help we so desperately need. It is a world where we are not overlooked, taken for granted, mocked, or scorned; rather, we are heard, cared for, and valued by all those who can help us spread our message.

All of these bodies must work together for our well-being.  This is "Right Care!" This is what we fight for!



I ask you to please read the following blog and watch the video. (And, if you are willing, please share them.) I have tried to portray our situation honestly and completely and to convey our needs. This is my best attempt to help all those involved in the health care system to understand our daily struggle with gastroparesis. It is my plea to get us the help we need, to be heard by the people who have so much influence over us and who could make such a great difference in our lives. Thank you!