Episode 10: Finding the Right Support Group for Hyperparathyroidism Patient to Patient Supprt
In this episode, Lisa Marie discusses the importance of patient-to-patient support groups, but more importantly, choosing the right support group. Lisa Marie shares insight on how to choose the right support group and what might be helpful to consider when choosing to join a relevant support group.
RESOURCES
The information shared in this podcast has been provided by several sources. These include outcomes from personal consultations with medical professionals, my own experiences, published research by expert medical professionals, and the NHS website. Please click on the links below for more information.
Hyperparathyroidism Support & Information - Patient-to-Patient Support Group
https://www.facebook.com/groups/406980976340533
DISCLAIMER: Lisa Marie is not in any way medically trained, she is not providing medical advice, and the information that is shared is in no way a substitute for qualified medical advice. If you believe you may have this disease, then you must seek the most appropriate medical advice, this podcast aims to help you navigate your way to the right medical support and diagnosis.
Transcript
I would like to touch. A little on patient to patient support groups for this short episode and their role in supporting any challenging health problem that you might be seeking to gain some insight from. It is extremely important that you choose the right support group for you. Sadly, not all support groups are equal and sadly, from my own experience, not all are run with the very best interests of their members.
So when looking for the right support group, it is important to look out for the following. That there is no hidden agenda for forming the group. For example, no personal gain for the founder of the group or founders. The support group, in my opinion, should not be run for profit. In other words, no support group should be, in my opinion,
[:profiting from the health challenges of its members.
The group should be run by volunteers who have experienced the challenges that you might be facing, that they have first hand experience and understanding of some of the issues you might be facing. The group also needs to have a zero policy against bullying and negative behaviour and Willing to enforce that.
The admin team should ensure that there is a safe, non toxic, non threatening and non judgmental environment for its members to feel safe in, especially when they're sharing their personal journeys and asking for help and support. Information should not be from unverified sources. A good group will remain neutral and not enter into any.
paid partnerships or affiliations that would benefit the organizations that they might partner up with financially. So
[:please, please be careful when choosing a group.
I hope that you found this series on hyperparathyroidism a patient's perspective useful. And please be reminded that this podcast is not providing medical advice and is no way a substitute for getting the right medical advice and support. Thank you for listening .
