The Patient Experience from Both Sides: Anne Llewellyn on Advocacy, Illness, and Hope

Send us Fan MailIn this episode of Beyond My Diagnosis, I sit down with Anne M. Llewellyn, nurse leader, patient advocate, writer, and creator of Nurse Advocate. Anne brings more than forty years of clinical experience and a deeply personal journey through central nervous system lymphoma, brain tumor treatment, and rehabilitation.We talk about the emotional shock of hearing “you have a brain tumor,” the critical role advocates play when patients cannot think clearly, and the importance of strong communication inside a healthcare system that is often chaotic and overwhelming. Anne generously shares what she learned working as a risk manager, why hospitals can be dangerous without proper oversight, and how patients and families can stay safer by asking questions, documenting care, and understanding care transitions.This conversation is honest, powerful, and grounded in both professional expertise and lived experience.In this episode, you will learn: • How to advocate for yourself or a loved one when facing a serious diagnosis • Why hospitals can be high-risk systems without informed patients and caregivers • What Anne learned as a risk manager reviewing medical errors • How she survived a central nervous system lymphoma diagnosis • Why caregivers are essential when patients cannot comprehend care plans • The importance of community, documentation, and speaking up • What patients need most but rarely receiveAbout Anne: Anne Llewellyn is a registered nurse, case manager, educator, and patient advocate. She is the founder of Nurse Advocate, where she supports patients and caregivers with education, resources, and insights learned from both her clinical and personal experiences. She lives in South Florida and continues to write, speak, and educate about patient safety, advocacy, and healthcare navigation.Anne’s Links: 🌐 Website: https://nursesadvocates.com/ 📘 Facebook: https://www.facebook.com/nursingadvocates/