Can We Talk?: Thoughts on the Demise of the UOA

    As of September 30, 2005, the United Ostomy Association (UOA) is closing its doors. Financial factors have driven this decision by the Board of Directors and it appears that no last minute heroics will be able to forestall this fateful outcome. I won’t countenance the wisdom of this decision; however, I will suggest that if any other entity attempts to fill the national shoes, it would be wise to take a long, hard look at how the current situation evolved. Some readers may be familiar with the UOA through its many local chapter activities and publications, its regional programs, or even its annual conference but I suspect that others I may not understand the history or present problems of this organization.

    Should this loss of the national voice for ostomates be of concern to those who care for patients with ostomies? In a word, yes! As a longstanding ET (1970) and ileostomate (1965,) I have come to rely on the voice and influence of UOA to help foster ostomy rehabilitation and advocacy throughout the ostomate’s lifespan. As we well know, in today’s healthcare climate opportunities for adequate instructions for and adjustment to ostomy lifestyle changes are less likely during the inpatient and immediate home care settings — adjustment to ostomy-induced lifestyle changes can be and often is a lengthy process. Plus, reimbursement issues continue to bedevil the ostomy-related community of patients, practitioners, and providers/suppliers. An aging population and lifestyle changes also have a lasting impact on the ostomy community, necessitating appropriate assistance (that may be lacking) from caretakers, providers, and suppliers.

    Losing the cache and resources of the UOA is akin to losing a significant portion of the institutional knowledge that many practitioners of ostomy care have come to utilize. One would hope that the lessening or loss of this invaluable institutional knowledge would be addressed through the efforts of the Wound, Ostomy and Continence Nurses Society (WOCN). However, even the WOCN has loss some of its ostomy-based institutional knowledge since 1983 as it has extended its reach and responsibilities to include incontinence and wound care. Commentaries on the WOCN ostomy discussion forum and the November 2003 member satisfaction survey document the fact that the majority of ET/WOCN practitioners devote approximately 20% or less of their knowledge and skills to ostomy clients, while many of the newer practitioners lack the level of skills to comfortably, effectively, and efficiently meet the ostomy community’s ongoing needs.

    So where does this leave the many patients who have or will have an ostomy, whether temporary or permanent? In limbo? Not so bad off? In distress? Most likely, all of these possibilities apply because some patients will do well on their own while many will not. What is not known with certainty or accuracy is the extent of the UOA’s effectiveness for its constituency. It would be naïve to believe that all ostomates have had the benefit of the UOA and the best ostomy care available from their various healthcare providers. But not having the opportunity to benefit from the accumulated wisdom and experiences of the UOA is an even greater (and sadder) unknown.

    It would behoove providers of ostomy care to seek out and align themselves with the local ostomy chapters in their communities (https://www.uoa.org/chapters_states.htm) and foster a meaningful working relationship that helps bridge the gap of experience and knowledge. Such efforts can and should benefit you and your ostomy clients.

    Mike ET
    Mike-ET@comcast.net