lI read this article this morning that truly struck me. The author, Anet, wrote about being a patient and a self-advocate at the same time. All of the feelings that I felt during those years of trying to save my son’s life came rushing back. In fact, I feel the heat in my face and the pain in my heart as if it was happening today. Unlike Anet I did have medical licenses and titles, but that means little to nothing when you are a mother fighting for her child.
Physicians, nurses and techs dismiss the patient (or patient’s parent) as an uninformed, uneducated, and excitable person with an illness who is in need of someone to tell them what to do. They become paternalistic, whether man or woman, and are sure that they know what you should do and how you should do it. It is my belief that as the patient, or the mother of the patient, it would not be so crazy to think that I would know a little bit more about what is happening, with or without a degree.
Anet speaks about being a part of a group that would include patients and clinicians giving their input about this or that medical problem. When the article eventually comes out, there is minimal writings about their ideas. It makes me wonder how they can call this group of people a team. For one thing, they rarely communicate with each other. For another, they are demeaning, abrupt and, at times, cold to the most important person on the TEAM, the patient!
I believe it is the right for every patient, and family of a patient with a chronic illness, to be armed with all of the knowledge necessary about the illness(es) that they are living with including symptoms, options, medicines, ‘red flags’ to watch for, important labs to be aware of and how to keep all of the information organized. They should not be responsible to find this on their own. I would propose that a licensed healthcare provider give them the tools that are necessary to educate, support and empower them to be the best advocates that they can be.
I learned this through the difficult road that my son and I traveled from the day he was born until the day he breathed his last breath. But that was not my only education on this matter. As a Physician Assistant I worked in Hepatology and was assigned to all of the patients with Hepatitis C on treatment. At that time, a few years ago, the treatment was a long and difficult. The medications had many side effects that both the patient and I had to be aware of. I gave classes that started out with training them to give themselves injections. After that was mastered, we would go on to talk about the side-effects, when it was an emergency or it was something that could cared for at home. I gave them each a book to keep a diary of their feelings, food intake, new and old symptoms, medicines, Red Flag symptoms, labs, and a glossary in the back. We became a real team. They were as involved as I was.
This is what I want to do through my new nonprofit Making Change For Children in honor of my son. I want to make a difference in these patients and their parents lives. We need to give them some control over their illnesses.
Go to: http://yourgoldwatch.blogspot.com/2015/08/the-authentic-patient-voice.htm