Making WOCN peers aware of veterans outreach network

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Mike ET
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Making WOCN peers aware of veterans outreach network

Post by Mike ET »

Holiday wishes to my veteran comrades.

I have asked my WOCN colleagues via their professional ostomy discussion forum to assist me with the outreach efforts. I have no allusions about the degree of response I may receive from a passive entreaty effort to my peers; however, at this juncture it is about all I can do for the moment. From my vantage point I do see the problems surrounding both the VA and the WOCN organizations since both are very much preoccupied with their own needs and shortcomings.

Let us see what kind of response we get and then readjust our strategies going forward. Part of me is wondering whether or not the VA/Military and WOCN entities will be in a position to do much to assist us. The irony is that the Internet makes it so much easier to link parties to shared goals and efforts, and that a simple effort to make the vets with ostomies aware of the UOAA veteran discussion forum link almost a no - brainer effort.

Mike ET
ostomy can present an identity crisis of image and function, and require tradeoffs.
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Mike ET
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Re: Making WOCN peers aware of veterans outreach network

Post by Mike ET »

Hello, Vets.

To keep you apprised of the nascent efforts for enhanced outreach I am pasting my recent email communiques between one of my WOCN peers. From my initial posting to my WOCN members the following has occurred:

Hi, Barbara.

So glad to read your reply to my posting. The Mesalt is a marvelous product for drainage or wound sites just like the one you posted on the ostomy forum.

Regarding the support of the veterans outreach network (VON), I would be most grateful for any and all assistance you can provide. I really do need my willing and supportive peers to reach out and ferret out those WOCN and other ostomy care folks who are involved with vets at both the VA and military centers.

If history interests you at all, let me point out how life does come full circle for some of us. The impetus for what has become the lay ostomy organizations originated from the early experiences of the post WWII generation. A handful of vets with ostomies from the now defunct Valley Forge military hospital met to assist one another with their ostomy adjustments and rehabilitation. From this very early (1949-50) effort emerged the founding of one of the first lay ostomy organizations, the CIRA (colostomy ileostomy rehabilitation association), within the Philadelphia region. New York and Boston were soon to follow in the footsteps of Philly.

In 1965 my ileostomy was created at the US Naval hospital in Philly. I joined CIRA and quickly became an active member and avid promoter of ostomy rehabilitation efforts throughout the region. I pushed and prodded any physician who would listen to me to help me create hospital based ET positions. Finally, in 1970 and 1974 I founded the first two full-time hospital-based ET positions in Philly and surrounding region.

While as my own recuperating patient at the Naval hospital I wanted to observe ostomy surgery in the OR; however, the captain of the surgical department nixed this request and I had to bide my time after discharge and seduce the VA to let me in on a total colectomy and ileostomy for a vet I had been called in to preoperatively visit as a member of the CIRA visitation team. My baptism into the world of hospital-based ostomy rehab began with the military and VA and has now come full circle for me almost a half century later to repeat the efforts on behalf of the UOAA and larger ostomy community. This time around I hope to not have as difficult a time since there is now the WOCN and the history of the lay ostomy organizations to rightly promote the clear benefit of the lay ostomy organizations as an essential asset for the longer term rehabilitation and reintegration of the ostomate.

So, Barbara, any sustained and repeated efforts you can bring to bear to help me would be most appreciated. Spread the word, cajole your peers and sing the praises of the lay support programs to any and all ostomy related care givers.

For me as the recently assigned facilitator of the UOAA’s veterans’ ostomy outreach network (VON), I would like to begin my role by collecting the names and contact information of all interested members who want to assist this effort.

The effort requested of our WOCN and related ostomy care givers at this juncture only involves encouraging them to direct the vets with an ostomy to reach out to the UOAA discussion forums:
index.php

You can also make my task a bit easier by simply asking willing peers to send me their preferred contact information via the email address listed below my signature.

Thank you, Barbara, and Happy New Year.

Mike
Last edited by Mike ET on 2015-01-07 10:05:18, edited 1 time in total.
ostomy can present an identity crisis of image and function, and require tradeoffs.
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Mike ET
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Re: Making WOCN peers aware of veterans outreach network

Post by Mike ET »

Hello, again, Vets.

As part of my efforts to keep you posted in real time about my humble efforts to engage some members of the VA/Military healthcare entities, I am copying the email message sent to one of the Tuscon, AZ surgeons who is a strong supporter of the vet with an ostomy. Whether or not he comes on board to assist our liaison efforts remains to be seen.
Good morning, again, Dr. Krouse.

I had sent you an email in October of 2014 introducing myself and my role with the United Ostomy Associations of America (UOAA) and their veterans ostomy outreach network (VON).

I am following up with you in the hope that you or your designees involved in ostomy rehabilitation at your facility will contact me about their willingness to assist me in resurrecting the veterans ostomy outreach network. My goal is quite simple; namely, to have all members of the VA healthcare system who are involved in ostomy outcomes to inform veterans with ostomies of the existence of the UOAA and the specific ostomy discussion forums available to them.

index.php

As a long term member of WOCN and one of the early progenitors of ET and WOCN development and mentoring within my region of the country, and retired from active patient practice, I am now being tasked with assisting the UOAA with their efforts to provide the longer term ostomy rehabilitation assistance which the lay organizations have provided since at least the 1950s.

I am reaching out to you, again, since you are an active participant in the lives of the newly created ostomate as a surgeon and, also, since you have repeatedly written in the professional literature of your ongoing interests in the needs of the ostomy patient., I, as another long-term practitioner of the art of ostomy rehabilitation as an ET remain vested in helping the ostomate fulfill his or her longer term rehabilitation goals, a role I have been involved with since 1965 as ileostomate and ET. My ostomy was created at the now defunct Philadelphia USN hospital.

Will you be willing to acknowledge my inquiries to you and assist me in ensuring that the VA healthcare system is on board with ensuring that the longer term needs of the veteran with an ostomy are met, in part, by the assistance of the UOAA’s veterans ostomy outreach network (VON)?

I am well aware of the turmoil confronting the VA healthcare system of late as I am well aware that it takes an individual with the vision, persistence and courage to cut through the clutter and inertia to effect the helpful changes that patients need and desire. I have been at this effort of ostomy rehabilitation for a long time and know that asking for assistance is an unending task that can or may be rewarded if one perseveres.

By your own beliefs and actions on behalf of the ostomy patient you have demonstrated to me that you may well be one of the many, I hope, members of the VA community who may want to extend a hand to assist the veteran in the ongoing socialization and rehabilitation that an ostomy lifestyle demands.

I await your reply, and hopefully, your assistance.

Happy New Year.

Mike D’Orazio, retired ET (enterostomal therapist)
ostomy can present an identity crisis of image and function, and require tradeoffs.
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Mike ET
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Re: Making WOCN peers aware of veterans outreach network

Post by Mike ET »

Good morning, Vets.

1. Just a brief note to remind you that I am working in background to accumulate names and contact information of the many WOCN peers assigned at military and VA centers. Once I get my data base completed then I plan on reaching out to all my known peers and ask them to become more involved with our veterans' outreach network.

2. I am mindful that not all will necessarily come on board or with as much enthusiasm as I would like; however, the effort remains useful.

3. Once we get some positive replies and commitments then I hope to encourage the VA and military staff who oversee ostomy care to work more closely with UOAA in not only referring patients to the UOAA_VON but to also work to ensure a more durable liaison within the VA and military systems beyond their own direct roles.

4. Bureaucratic entities are structurally impenetrable entities to outsiders and when only one or a handful of involved staff move on or retire from their ostomy oversight roles, the likelihood of a void re-emerging increases manifestly. Thus, it would be nice to have our VA and military institutions develop an institutional protocol whereby all ostomates are provided the UOAA_VON support structures as part of their standing orders, and not have to rely upon the chance opportunity of an ostomy caregiver (WOCN or related person) as part of the employee staff at any particular facility and at any period of time.

5. Ultimately, we would like the VA and military institutions to address the question: “Should military personnel and veterans with ostomies have the benefit of referral to the UOAA as part of their rehabilitative goals?” If the answer is affirmed then it becomes much easier to make it part of the standing order for all institutions to adopt and pursue, and not reliant upon any one particular caregiver.

6. In the meantime I would encourage you to reach out to your own contacts and keep me apprised of your actions and results.

7. Finally, let me encourage you to write a short story of your hits and misses as you undertook your journey as a newly minted vet with an ostomy and whether or not the UOAA outreach was beneficial to you, and if so, just how helpful was it.

I encourage you to PM me with your stories so I may incorporate them as part of an overall package or testament of influence to be presented to the military and veteran entities

Mike
ostomy can present an identity crisis of image and function, and require tradeoffs.
Shanna
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Re: Making WOCN peers aware of veterans outreach network

Post by Shanna »

Mike, My name is Shanna Fraser, I am a WOCn working at San Antonio Military Hospital. I actually just launched a support group from here last week. We already have a amazing support group here in San Antonio so we decided to be an official satellite of their group…meeting on a different evening and we are on the opposite side of town. I would like to chat with you about what the UOAA has to offer fro Veterans. Please email me by using the envelope icon to right of this post.
Thanks,SF
:D

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Mike ET
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Re: Making WOCN peers aware of veterans outreach network

Post by Mike ET »

Hi, Shanna.

I already have you on my radar, so to speak. I am in the process of accumulating the contact list of all my WOCN peers attached to VA and military facilities. I will be reaching out to you as per your request. Be on the lookout.

Ciao,

Mike
ostomy can present an identity crisis of image and function, and require tradeoffs.
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Mike ET
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Re: Making WOCN peers aware of veterans outreach network

Post by Mike ET »

Hello, again, Vets.

I have just emailed about 60 WOCN colleagues who are attached to an almost equal number of VA and military medical facilities. I have asked them to address or reply to 14 specific questions and provide any additional comments they desire. It remains to be seen what quantity and quality of replies I will receive from my WOCN peers. I will remain hopeful for the time being.

I also sent a letter to UOAA and their respective ASGs that identifies a range of concerns and goals for the revitalization of the veterans' ostomy outreach network (VON).

Among the particular points I made in the letter to UOAA is the usefulness and need for vets to write about their experiences accepting and adjusting to life as an ostomate both before and after their relationship with UOAA and respective ASGs. What the UOAA and I need are the stories of the lived experiences which can go a long way to providing meaningful evidence of the benefit or not of the UOAA and the VON, evidence that needs to be presented to the movers and shakers within the VA and military health centers bureaucracy. Thus far, I have not received any letters from you and I do believe this is a shortcoming that should be remedied. No one is being asked to identify themselves or reveal any other personal information; however, I need the life experiences so that a cogent argument can be made for or against the benefit of the UOAA VON.

VETs! Time to suck it up and do what is being asked on your behalf.

Mike ET
ostomy can present an identity crisis of image and function, and require tradeoffs.
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Re: Making WOCN peers aware of veterans outreach network

Post by Mike ET »

Hello, again, Vets

In keeping with my mission to garner support for the VON from the WOCN staff at the VA and military health facilities, I am reporting that the response rate to my twice sent letter to the WOCN staff has been poor as reflected by the 10% response rate (6/60). I am still exploring other approaches and personnel.

While the response rate from the WOCN may be poor, the lack of any stories from you about your experiences pre and post UOAA involvement in your ostomy life is even more disquieting.
Among the particular points I made in the letter to UOAA is the usefulness and need for vets to write about their experiences accepting and adjusting to life as an ostomate both before and after their relationship with UOAA and respective ASGs. What the UOAA and I need are the stories of the lived experiences which can go a long way to providing meaningful evidence of the benefit or not of the UOAA and the VON, evidence that needs to be presented to the movers and shakers within the VA and military health centers bureaucracy. Thus far, I have not received any letters from you and I do believe this is a shortcoming that should be remedied. No one is being asked to identify themselves or reveal any other personal information; however, I need the life experiences so that a cogent argument can be made for or against the benefit of the UOAA VON.
It does make good sense to have this ammunition available so that we can use it to strengthen our arguments for a more robust VA and military VON liaison. Please do what is asked of you so that we may strengthen our hand. Your stories and lived experiences are the best ammunition we can use to persuade the VA and military staff of the benefits derived from the UOAA VON. Send your stories to me.

Mike
ostomy can present an identity crisis of image and function, and require tradeoffs.
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Mike ET
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Re: Making WOCN peers aware of veterans outreach network

Post by Mike ET »

Hello, Vets and family members.
I have been preoccupied with recent health and family issues that necessitated my time away from a more active UOAA and VON (veterans outreach network) role; however, in the interim I did submit my letter and now the WOCN society has finally given our shared voices some printed space.

I would ask you to make an effort to directly contact all known military and VA WOCN and other staff, who have oversight with vets with ostomies, to make sure they do keep UOAA informed of their ostomy patients and whether or not they are aware of the veterans outreach network and whether they do refer the vets to this unique UOAA support.

My WOCN peers have finally printed my editorial comments in the March 2016 issue of the JWOCN.

Here is the letter:

Copyright © 2016 Wound, Ostomy and Continence Nurses Society™. Unauthorized reproduction of this article is prohibited.
118 J WOCN ■ March/April 2016 Copyright © 2016 by the Wound, Ostomy and Continence Nurses Society™
LETTER TO THE EDITOR
■ 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 fi rst 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.

[url]https:// http://www.uoaa.org/forum/index.php
[/url]
http://www.ostomy.org/UOAA_Affiliated_S ... oups.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
ostomy can present an identity crisis of image and function, and require tradeoffs.
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