Why rare disease patients need whole person care with Connie Montgomery

Mrs. Connie Lee Montgomery is a global patient advocate, retired occupational therapist, and founder of The Rare Cares Collective. She lives with Factor Seven Deficiency, Pemphigus Vulgaris, and three chronic conditions. Key takeaways: 1. Listen deeply to what patients say and don't say, including their body language and pauses around sensitive topics shaped by cultural, religious, or stigma-related factors. 2. Humanise people by thinking of them as your own family member, which helps you listen more compassionately to whatever is being shared. 3. Have a referral network ready before you ask about social needs, so you can move from gathering data to taking action when someone shares a nutritional, transportation, or access need. 4. Build long-term ecosystems of care that consider the whole person, their zip code, access to food and transport, and the supportive relationships around them. 5. Be present in communities before extracting information. Attend health fairs, faith gatherings, youth activities, and Little League games to build trust relationships over time. Connie waited 30 years for a bleeding disorder diagnosis due to implicit bias, lack of clinician knowledge, and failure to consider her whole being. She founded The Rare Cares Collective to connect rare and ultra-rare communities globally, enabling communication, connection, and collaboration. Subscribe to My Health Focus for expert interviews that centre patient voices.Sign up to our newsletter here:https://bit.ly/3NA40IQ 1. [00:01:43] Ask the person how they want to be referred to and what they want to talk about, because getting their input is key to how you move forward. 2. [00:02:31] Patient engagement is simply people sharing their insights about their own lived experience with whatever condition it is they have. 3. [00:07:13] Listen to what people are not sharing, their nonverbal cues, their body language, and watch for pauses when friction factors or pain points come up.  4. [00:08:20] Humanise people by thinking about what if this was my mother, my father, my loved one, because that helps you listen more compassionately. 5. [00:09:19] Have a referrals list in place beforehand so you can actually refer them to get the services they need. That moves beyond gathering data to action. 6. [00:11:38] The fact that you validated that I've spoken and you've heard what I said goes a long way to building something I call trust. 7. [00:15:17] You can no longer come to communities and extract their information, extract and utilise their bodies for research without really building relationships and learning from the leaders and people in those communities. 8. [00:17:13] Whole person care is considering the entire ecosystem of care around that person, that zip code that person lives in, access to nutritious food, public transportation, supportive family.   9. [00:18:05] It took me 30 years to get a diagnosis. The entire being of who I am was not considered, whether it was overt discrimination and implicit bias or lack of knowledge on the part of healthcare practitioners. 10. [00:21:27] The Rare Cares Collective is going to be one of the first organisations that will bring people together locally, nationally, and globally who may be in that same diagnosis state.  My Health Focus is not a medical service. The information provided is for general informational purposes only and does not constitute medical advice, diagnosis, or treatment. JOIN THE MY HEALTH FOCUS COMMUNITY AND SIGN UP TO OUR NEWSLETTER Hosted on Acast. See acast.com/privacy for more information.