The Neuropathy Journal will be a place for us to share Neuropathy Support Group Ideas that work. This is a place to encourage one another as we seek ways to resolve issues to make our outreach more effective. The website idea grew to address the growing opportunity for active ongoing input by patients and group leaders along with a growing need for more active support of group leaders. Many of our group leaders are professionals in their own right and this knowledge and skill has not always been recognized or encouraged. See the article on Why the NSN?
Supporting support group leaders: There has been for some time a growing need for materials and practical ideas for support group leaders and chapters. Add to this the need for large doses of encouragement for patient support groups and chapters. Linking together for support will strengthen our voice and the effectiveness of our mission. Every support group leader has had the experience of working hard on a support group meeting or special speaker only to have only a few people or no one show up! Often this is no fault of the leader and simply results from the difficulty of getting publicity out to the public or differing patient needs. Yet too many leaders blame themselves and discontinue in discouragement. See The Prayer for Neuropathy Support Group Leaders.
With these two websites, the goal is to provide a site supporting patients and support group leaders. A tool leaders may use in their meetings to increase interest by providing creative ideas or resources for discussion. If leaders are able to access the internet and project a video on a screen, these determined leaders will be able to use these tools to spark interest. They can download articles for the patient to read in connection with the video or a public speaker. They can encourage patients to order books that will provide great information and insight to be shared at meetings. Neuropathy Support Network and the Neuropathy Journal.
The center stage role of patients: From the very beginning of The Neuropathy Support Network, patients have been and must continue to be seen as the life blood and energy of the mission. Opportunities for patients to strengthen this role must increase. Neuropathy patients are not children with hands out for advice from on high as in a parent speaking to a child. Neuropathy patients are adults who participate in adult to adult conversations about neuropathy and their experience. See an Interactive Journal of Patients Helping Patients.
The idea that patients are just patients and therefore are not qualified to speak must end. With the demeaning touch of unhelpful behavior, patients are too often dismissed or worse – passively ignored. Their professional backgrounds, training or skill is tossed aside, just when these patients are struggling to maintain a sense of meaning and value in their lives that has been shattered by neuropathy. If we place a patient on a program and they have a degree and professional background, let that always be noted! Of course patients are not permitted to diagnose or prescribe as only medical professionals are permitted these roles, but this does not mean that patients cannot share informational and educational information on neuropathy from their learning and experience! See Principles and Goals of Patients Helping Patients.
This idea is especially important for the leaders who are support group leaders and leaders of multiple support groups. These patient leaders, themselves walking the neuropathy walk, are motivated by unselfish caring hearts, working heads, and hopefully a tough hide to do what they do. These leaders are all too often the targets of the old phrase that “no good deed goes unpunished.” Beyond avoiding snake oil sales, false or overstated claims, and marketing people who want control of meetings, these leaders struggle to help so many in a complex world of neuropathy types and causes. Yet I encourage every leader to stand tall and look everyone right in the eye with your life experience, professional backgrounds and practical common sense. It is our prayer that this network website will help you accomplish all of this and more.