John went to the doctor for a checkup because of a lingering cough. X-rays found a mass. Gary was losing weight rapidly. It took many tests and doctors visits to find the cancer. Lenore felt a lump that scared her so she went to the doctor and started her journey of medical tests.
What do each of these experiences have in common? They each started their medical treatment with the information they had about something about their body not being right. It was up to them to move forward and seek treatment. But it is the empowering support of friends and family that helped them most through this difficult time.
Cautious Patient Communities is meant to be that support system where people can come and talk about their medical care and treatment whether for themselves, a family member or friend. Cautious Patient Communities (CPC) is based on solutions and people helping people when they feel their most vulnerable, scared or confused.
These one hour sessions made up of small groups are facilitated by a trained patient advocate who encourages confidentiality, sharing of experiences and search for solutions.
Guidelines are carefully followed. Participants are told at the beginning of each session that they should not use words such as “you should” or “you need to” or “you have to”. Cautious Patient Communities is not about giving advice but about shared solutions.
The writings from Cari Oliver MD are used as a guide to open discussions and share experiences. Participants are encouraged to help each other find ideas that works for them.
Rita came to a CPC and never thought about keeping a list of her medications in her pocketbook in case of emergency. Sandra didn’t know that hospitals have patient advocates who can help her when she was not getting what she needed to help a sick friend.
Lisa shared with the group the websites that she found most useful when her husband was diagnosed with cancer. Ann waned to know how others have approached family about completing a living will.
PULSE of NY will be hosting a series of three CPC’s in June. If you want to host a CPC or attend one, call (516) 579-4711 or visit www.cautiouspatientcommunities.org