Reflections of a Patient Advocate — An evolving journey in healthcare!

When I decided to become a hospital administrator at 17 (who does that?) I wanted to eliminate barriers and overcome

challenges so that nurses and doctors could provide better care. I guess I was advocating for patients my entire career, not just when I actually became a hospital administrator and met patients daily.

Then I got sick … with a rare disease… had a 71/2 month delay in diagnosis and treatment… and my life would forever be different. Slowly, as I began my recovery and appreciated the advice I’d received in my Facebook support groups, I began to see opportunities for me to apply my knowledge of the healthcare delivery system and help others with the challenges they faced. A pattern formed and I found I wasn’t unique with a delayed diagnosis. At least mine was only 71/2 months and not years. It was only my inside knowledge that pushed me forward — past the fear and desperation — to advocate for myself until I found a doctor who could help, my actual diagnosis and the treatment that helps me maintain functioning… although at a different level.

At this point, I wrote a diagnostic guide for physicians — because I had done that in my work with medical staff — and shared it with patients each time their story was similar to mine. I encouraged them to use the information to educate themselves and to discuss it with their doctor(s). Others were struggling with disability insurance or their insurance companies. They were grateful for my suggestions and advice and as I learned more about our common struggles, I increased my advocacy.

More formally, I was invited to join the Chronic Disease Coalition as a Patient Ambassador, because they had come across my @NavigateCare and my tweets where I was advocating for my undiagnosed self and others. Later I signed up as a member of the National Organization of Rare Disease Action Network and with the help of Rare Patient Voices found opportunities to contribute to surveys, interviews, and research aimed at better understanding my challenges and needs. Most recently, I became a CIDP Patient Ambassador for a pharmaceutical company that found me from my participation in a survey/interview.

As my patient advocate journey continued to evolve I increasingly began to see more interest in public policy; not just a focus on what doctors, hospitals, and insurance companies were doing. This aligned with my teachings to new healthcare administrators about the ecosystem of healthcare. Much of what we experience as consumers and patients is influenced and/or governed by local, state, and Federal policy.

After learning of an opportunity to join Nevada’s Rare Disease Advisory Counci l, I was appointed as a member last week and participated in my first meetings this week.

While I’ll continue to offer advice/guidance and encourage patients to advocate for themselves, I am increasingly looking at the issues more broadly and will work to address the policy that creates unintended consequences for patients and their caregivers, as well as, consumers, taxpayers and society. In many ways, I’m coming back around to my 17-year-old self and working to eliminate barriers and help doctors and nurses overcome challenges so they can better care for patients… like me.

Having said all of this, I’m hoping to return to being a more active blogger again. Over the last few years without my work in and around hospitals, I had to find my new self and passion. With a renewed sense of direction, I believe the ideas for engaging posts will return and I hope you will join me on this new journey.

Originally published at https://thielst.typepad.com.