How I Became a Patient Advocate.
I’m Nancy Wolkenfeld and my patient advocacy journey began more than 25 years ago when shortly after I married my husband, he suffered a severe brain injury. I spent ten months of our first year together in the hospital by his side, where he needed round-the-clock intensive care. My waking hours were spent learning how healthcare works and doesn’t work, educating myself about treatment options, overseeing his care, questioning everything I was being told by anyone related to his care, and making medical decisions on his behalf.
My goal was to give everything humanly possible to help my husband recover as much as he could. After 10 emotionally and physically grueling months in the hospital – for both of us, I took him home. We were thrust into a complex world of un-chartered territory that required a depth of strength, love and compassion that I didn’t even know I was capable of. My husband could perform none of the basic activities of daily living on his own. He could not walk. He could not control his body. He could not talk to me. I immersed myself in everything I could get my hands on regarding brain injury, caregiving, medications, therapies, insurance policies, state and government resources & support. I became, and still am today, my husband’s voice.
Throughout this journey, I have met many others who also found themselves in overwhelmingly critical situations where they had no idea where to begin, or how to get their concerns across, or what questions to ask. They needed help. Emotions were high. Family members were scattered. The medical terminology was confusing and daunting. Decisions needed to be made. Someone needed to be an advocate for these patients and family members.
I’ve been there. I know how intimidating, time-consuming, and frustrating navigating the healthcare system can be. My experience has been painful, but it taught me valuable lessons. I soon found myself helping friends and families get through some of their toughest medical experiences. I helped them find treatment facilities, residential care, and community services. I coached them on how to prepare for a doctor visit, or make sure they were getting the benefits to which they were entitled. I often stepped in at the worst of times. I listened. I was becoming a patient advocate.
I discovered that these experiences have led me here—to a place where I can continue to effectively advocate for individuals and families who seek the best possible outcome for them or someone they love.
Nothing makes me happier than when I’m asked by someone on my client’s healthcare team if I am a family member. This is when I am reminded I’m doing exactly what my heart is telling me [being a patient advocate]. My mission is to provide the best possible outcome for each of my clients and that begins with treating them like a family member. I don’t believe it should be done any other way!