
Who Cares? One Mother’s Story of Advocacy, Resilience, and Healthcare Reform| E104
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Summary
In this episode of the Hey Hannah podcast, Dr. Mya interviews Melissa Winger, a passionate advocate for patient rights and healthcare reform. Melissa shares her personal journey as a mother of a son with severe disabilities and the challenges she faced navigating the medical system. She discusses her motivation to write her book, 'Who Cares?', which aims to empower patients and families in their healthcare journeys. The conversation covers practical tips for advocating in healthcare, the importance of self-care for caregivers, and the emotional complexities of processing grief and expectations. Melissa emphasizes the need for systemic change in healthcare and her ongoing advocacy efforts.
Takeaways
- Melissa Winger's journey began as a young mother facing healthcare challenges.
- The medical system often overlooks young parents and their concerns.
- Documentation is crucial when navigating healthcare.
- Caregivers must prioritize self-care to avoid burnout.
- Grief over lost expectations is a common experience for parents of children with disabilities.
- Advocacy can stem from personal experiences and frustrations with the system.
- Melissa's book aims to provide insights and support for families in similar situations.
- Community support is vital for caregivers.
- Perspective can shift the way we view our loved ones' challenges.
- Healthcare providers also face frustrations within the system.
Chapters
00:00 Introduction to Patient Advocacy
02:57 Melissa's Personal Journey with Healthcare
05:42 The Challenges of Navigating the Medical System
08:27 Writing the Book: Who Cares?
11:08 Practical Tips for Advocating in Healthcare
14:09 Balancing Caregiving and Self-Care
16:56 Processing Grief and Expectations
20:01 Finding Purpose in Advocacy
22:55 Current Advocacy Efforts and Future Goals
25:38 Final Thoughts and Advice
Guest: Melissa Winger
Title: Certified Healthcare Quality and Patient Experience Professional
Mission: Advocating for healthcare reform by centering the patient experience, informed by nearly 30 years of caregiving for her son with severe disabilities.
Overview:
A deeply personal and eye-opening look at the U.S. healthcare system from the perspective of a caregiver. Melissa shares her journey navigating emergency medicine, long-term care, and everything in between—offering both powerful storytelling and practical insight on how the system can and must improve.
www.whocaresbooks.com
Includes:
Book purchase links
Tip sheets for patient advocacy
Social media links
Additional resources to help patients and caregivers navigate the healthcare system
Book: Who Cares: The Real Patient Experience