ADVOCACY
National Association For Continence:
A Key Voice
Founded in 1982, the National Association for Continence (NAFC) was established to address the lack of resources for continencerelated issues. Ms. Nancy Muller, named Executive Director of NAFC in 2000, has made it her focus to grow the organization and carry out its mission to educate the public about the causes, treatment options and management alternatives for incontinence, voiding dysfunction and related pelvic floor disorders. Ms. Muller and her team advocate for the millions of patients who experience continence-related conditions by joining other organizations and agencies to increase the visibility and priority given to these issues. This year, NAFC celebrates 30 years of patient outreach, advocacy and education initiatives. The organization plans to expand awareness messages so patients understand that they do not have to suffer in silence from any continence condition and are encouraged to use resources to understand and cope, but more importantly, overcome. We were pleased to interview Ms. Muller and Ms. Allison Wilfong, Manager of Media Relations and Communications at NAFC.
What can urologists, allied health professionals and other healthcare professionals do to encourage their patients to discuss the issue of incontinence? NAFC: We at NAFC think it is important for physicians to start
the conversation with their patients about incontinence. We have heard doctors say that they wait for patients to talk to them about an issue; as such, patients identify what is most important to them. However, patients suffering with continence-related issues may be too embarrassed or uncomfortable to bring up the topic. Studies have shown that, on average, women wait 6.5 years from the first time they experience symptoms until they obtain a diagnosis of bladder control problems. Therefore, it is important for healthcare providers to not wait for their patients to start the conversation, but rather to ask if they are having any symptoms or complications. Once providers and patients start the conversation, they must have an open and honest discussion. Many patients, such as those who have undergone prostate surgery, have said that their healthcare provid-
ers downplayed the effects that continence could have on their daily lives, which can lead to disappointment and distrust. We encourage providers to be open with patients and prepare them for what life will be like should they become incontinent. If the issue is not addressed thoroughly, patients can feel isolated and may be reluctant to seek help because they do not want to feel like they are not “normal.�
Nancy Muller, Executive Director of NAFC
What is NAFC doing to make sure the millions of people suffering from continence issues are aware of the resources, treatments and options for them? NAFC: Urinary incontinence affects over 200 million people world-
wide, including millions in the United States. During the last 30 years, NAFC has produced numerous patient and physician educational materials, hosted conferences and conducted workshops for patients. Over the last decade, NAFC has been actively reaching out to the Hispanic population. Our goal with this targeted campaign is to make sure that Hispanics feel better connected to the healthcare system and are provided with resources to access care when they experience continence issues. Last year, NAFC held a public forum in California for Hispanic migrant farm workers. The doctors and nurses not only delivered their message in Spanish, but also participated in one-onone conversations with attendees about continence-related issues. We also have a Spanish language specialist on staff who is able to provide Spanish-speaking patients with necessary information and resources. In addition, we created an online community where patients can interact with other patients with similar continence conditions. Continued on next page ø*
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