To the Editor:

After the Second World War, a group of military and civilian ostomates came together in 1949 at the long defunct Valley Forge Military Hospital. Their goal and mission was to share their experiences living with an ostomy and to make their lives better. They had little formal education but intuitively sensed that there must be better ways to cope and adapt to their altered bowel or urine elimination functions and the social stigma that ostomy entailed. This determined group understood the dual conflict of altered body image and function associated with an ostomy and the respective identity and management crises they incurred. They were determined to create a working group to share useful hints and spread the gospel of better ostomy support and teaching. In short, they became the earliest proponents of ostomy rehabilitation.

This effort led to the Philadelphia-based Colostomy Ileostomy Rehabilitation Association (CIRA). Other ostomy support groups emerged soon after, including New York and Boston-based groups. Even at this early stage, some of the groups were jockeying to claim their historical place as the nation's first ostomy group. In spite of the rivalry, it became clear that the impetus for developing and maintaining ostomy support groups was well founded, ultimately resulting in a growing cadre of ostomy support groups across the United States and eventually the world.

In 1962, the various local groups in the United States merged into the national ostomy group, the United Ostomy Association. Paralleling the development of the lay ostomy associations were the scattered efforts of some surgeons and hospitals from New York, Boston, and Cleveland to create a specialized role for nurses or lay ostomates to work with them to develop ostomy clinics or hospital-focused ostomy rehabilitation roles. This led to the development of the enterostomal therapist (ET), a title coined by the Cleveland Clinic surgeon Rupert Turnbull. The first formalized training program for ETs was established at the Cleveland Clinic in 1968, and the second opened in Harrisburg Hospital circa 1969.

Early ETs were ostomates chosen from and sponsored by the lay organizations to achieve greater expertise and skills needed to provide more comprehensive ostomy care and teaching. These early ETs devoted their time and energies to the ostomy population almost exclusively. In effect, they devoted approximately 95% of their talents for persons living with ostomies and the remainder to managing persons with fistulas. Eventually, the role and title of the ET changed to the expanded roles of the WOC nurse. Multiple factors influence this evolution, and one of the major drivers was the increased time and attention these care providers were devoting to the management of chronic wounds.

Most persons currently providing WOC care are nurses. I estimate that 9% of these individuals hold other credentials, including those originally trained as ETs. I further believe that approximately 15% of WOC nurse practice is devoted to the patients with ostomies. The few remaining ETs are increasingly relegated by age and retirement to the role of progenitor without portfolio. Although they may lack an active patient portfolio, they still possess a body of knowledge, experiences, and insights that remains germane to the ongoing rehabilitation goals of the ostomy populace.

As one of these lingering progenitors, I have been asked to assist the United Ostomy Associations of America (UOAA) with their nascent veterans ostomy outreach network (VON). I am a suitable stakeholder in this endeavor given my standing as a veteran with an ostomy since 1965, a longstanding member of the UOAA and an ET since 1970. My task is to contact all known WOC nursing staff working at the Veterans Administration and military health facilities to inform them of the VON and ask their assistance in ensuring that their ostomy population be made aware of the veterans' outreach program. I have also been asked to provide veterans with UOAA Internet links and the names of the affiliated support groups within their respective areas.

https://www.uoaa.org/forum/index.php

http://www.ostomy.org/UOAA_Affiliated_Support_Groups.html

I wish to report my endeavors to contact known WOC nurse staff via e-mails sent in February and March 2015. Of the 60 WOC nurse contacts identified at the Veterans Affairs (VA) and military facilities, I have received only 6 replies to my inquiries. I had sent 2 letters or e-mail messages, each a month apart, seeking acknowledgment and support for the UOAA VON program. I suspected that the response rate to my letters would be low, but 6/60 (10%) is lower than I had anticipated. I could allow for a few e-mails not reaching the intended target for reasons unknown, but the ratio of replies still begs the question why the response rate was so low. Either the majority of the recipients were turned off by my entreaty or they were not sufficiently motivated to reply or they were not sufficiently engaged in the ongoing well- being of the ostomy population or they are up to their eyeballs with work demands and did not to want to add another "burden" to their list of concerns. I do not doubt that a personal visit might generate a higher rate of response, but I am unable to travel to more than 50 VA hospitals across the United States.

At this point, the UOAA and I must reassess reasonable continuing efforts for obtaining a clearer picture about the interest in and desire for a sustained VON relationship with the VA and military facilities. Alternative efforts directly engaging the support of a few key surgeons, who may be able to "mandate" a clearer role for all veterans with ostomies to have access to the VON, also may be indicated. Since the VA and military facilities still operate as a command and control entity with traditional vertical reporting (narrow span of control), it may be suitable to follow this management model. If a protocol (ie, a standing order) can be established and disseminated throughout the facilities that all ostomates are to be given UOAA and VON resources, then the burden to follow through on this order would not fall solely to the discretion of an aware and sympathetic WOC nurse. Instead, the protocol would be implemented with or without benefit of WOC nurse involvement. I suspect this approach to be a long shot, but, given the poor response to date from the supposedly attuned WOC nursing staff, I believe it worthwhile to consider this additional approach. Again, I am left somewhat dismayed at the paucity of replies from my WOC nurse peers. If I am not able to garner a decent level of response, what hope is there for anyone else?

We do not know how many veterans with ostomies are apprised of the UOAA VON. One of the shortcomings I believe is that WOC nurse colleagues struggle to maintain accurate and comprehensive data. Past reasons expressed by my peers for this shortcoming range from limited time and experience in acquiring and maintaining a comprehensive and workable database to concerns for legal jeopardy and HIPPA privacy constraints. As a result, we at UOAA remain in the dark knowing how a vet comes to our Web sites.

So, what lessons are to be learned from this? Are my characterizations accurate? Am I being too impatient? I honestly do not know what to make of it all. I do know that history does inform us, if we choose to permit it, about likely future events.

Recently, WOCN Society office staff called for historical images and artifacts to be submitted for an upcoming retrospective review or celebration of the Society and WOC specialty practice. I took time to ferret out some images and historical tidbits to assist this effort; however, I also question whether too much emphasis is being applied to the membership and not enough upon the historical mission of the WOCN Society. It is not an uncommon practice for groups to commend their members by paying homage to some of their early leaders and supporters-I suppose we all like a pat on the back and a well-intended thank you now and then. This retrospective request did help me appreciate and reminisce about the tie-in between my recent effort on behalf of UOAA and their veteran outreach network and the historical underpinnings of the WOCN Society. If we are to celebrate our history as a group, then we should give homage to those early veterans and civilians who gave birth to ostomy rehabilitation, which then led to the emergence of the professional ostomy rehabilitators, the first ETs. How timely and beneficial it would be if the WOCN Society would respond more affirmatively to the UOAA's veterans with ostomies outreach network. What a way to come full circle with our history!

Mike D'Orazio, ET (retired)

Broomall, Pennsylvania