Linking Families and Community Support
It's very possible that once the new administration takes over in January we will all experience changes in our healthcare system. One of the changes we might see is more community based programs to help educate and heal those living with a chronic illness. One such model of care has already been tested in the diabetes community, and is known as Partners in Diabetes.
The program began in a Minnesota community, where patients, known as support partners, who were living with diabetes were connected with newly diagnosed and struggling patients, called members, for the purpose of support. The initial team of citizens included providers, patients, and families who met monthly to develop a plan of implementing a program of support and education for families living with diabetes. This model has been expanded upon and is now called the Citizen Health Care model, and has been implemented in different communities across the country with successful outcomes. The main idea behind Citizen Health Care is that patients, families, and communities are co-producers of health care, and are not just consumers.
If you want to get a head start in your own community and develop or increase community support for your disease here are a few suggestions:
1) Realize that public work happens as a serious effort by a diverse mix of very ordinary people. (Trust me. You're qualified.)
2) Know what is already available for support in your community. Local hospitals, church organizations, the county health department, and your reference librarian would be good starting places to find out what support may already be in place for you and your family.
3) If your search comes up empty as far as support systems already in place for your disease, create your own support group. Start by talking to your physician about the prospect, since he or she may have an idea of how many individuals are being treated with similar conditions. Local pharmacists can also be a great source of information. You might also consider placing a classified ad to search for other members of your community who are living with your same symptoms. (I know of one support group that started this way, and now has over one million hits a month on their website.)
4) Find a physician or healthcare provider who would be comfortable with a more "democratic" model of healthcare and would be willing to be "on tap" and not just "on top" of your proposed support group.
5) Remember that one of the main ideas of public work is this: "Ordinary people working together can influence, through civic muscle, the world of institutions, professions, and the marketplace. Democracy in this sense is not just about voting and volunteering as a private citizen; it is about joining with other citizens to build a robust public world."