Greetings to our friends in IOA - ostomy - International · niversary and Future of the Japanese...

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Editor: Stuart Schaefer [email protected]

An Online Quarterly Newsletter provided by the International Ostomy Association

Associate Editor: Di Bracken

[email protected]

Bringing You Ostomy Related Information From Around The World Third Quarter 2006 Volume 5 Issue 3

(Please note: Contact the IOA Vice President: [email protected] before reprinting any article from this newsletter.)

www.ostomyinternational.org

Greetings to our friends in IOA:

It has been a very busy period since I last wrote to you and there is much information that will be of interest to you in this 3rd Quarter edition of IOA TODAY. I will, however, begin on a personal note. I am very sad to tell you that our Past President, Heinz Wolff is seriously ill. After being in the hospital for a number of weeks he is now at home where he is receiving on going medical care. Please remember Heinz in your thoughts and keep him and the Wolff family in your prayers.

It has been a very busy period since I last wrote to you and there is much information that will be of interest to you in this 3rd Quarter edition of IOA TODAY. I was most pleased to be able to attend the first Twinning Conference in early June organized by the European

Ostomy Association, EOA. The Conference or-ganizer was Arne Holte from NORILCO, Nor-way, as president of EOA. You will be able to read reports from the meeting that will let you know of the work that is being conducted through the organizations in Europe.

World Ostomy Day Please take the time to read the information from WOD Coordinator, Barry Maughan. By the time the next edition of IOA TODAY is pub-lished, World Ostomy Day will have taken place.

If you need any last minute information, please get in touch with Barry at [email protected] I know from my contact with many of you that you are planning many interesting activities for WOD and the IOA Executive is looking forward to hear-ing of your activities. IOA World Congress AUGUST 7TH – AUGUST 12TH, 2007 Location: The Fajardo Inn, Fajardo, Puerto Rico Activities in IOA are currently increasing as we are now one year away from our next World Con-gress. I hope that you are all organizing your holi-days for next year to attend the Congress and take a few extra days to enjoy the lovely island of Puerto Rico. You will find further information about the World Congress, including the Congress Registration Form and Hotel Booking, in this newsletter. Again if you need further information, please be in touch with the World Congress chair, Martha Velez De Nieves at [email protected] 16th Biennial Congress of The World Council of Enterostomal Therapists, July 2 – 6th. 2006, in Hong Kong. WCET extends an invitation to the President of IOA to attend their Congress and I was able to be present at their extremely successful Congress where there were over 600 attendees. I found being involved in the programme moderating two sessions, to be most interesting and I learned a great deal. The first session, Development of ET Manage-ment in Asia Pacific Region provided extremely interesting information; Atsuko Maekawa, Japan spoke on the ,25th An-niversary and Future of the Japanese ET/WOC Nursing Widasari Srigitarja, Indonesia spoke on ,Wound and Ostomy Management in Indonesia Dong – Xia Fan, China addressed the topic, Cur-rent Progress of ET Cancer Institute and Hospital. Lin – Yan Wang, China spoke on the Current Status Of Stoma Care in Guangzhou, P.R. China

Attendees at the Twinning Conference

http://www.ostomyinternational.org

IOA TODAY THIRD QUARTER 2006

Renata Bata, Slovenia addressed the topic Enterostomal Therapy at Community Health Centre, Ljubljana, Slovenia The second session I had the privilege to moderate was on the Quality of Life. Pamela Thompson, Australia presented her session on Is Sexual Health in Women Affected Following Pelvic Sur-gery For Rectal Cancer? Gisele Azevedo, Brazil spoke on Evaluation Of The Quality Of Life Of Women With Stress Urinary Incontinence Using King’s College Health Questionnaire After Pelvic Floor Muscle Exercise. Mary Cassidy, Ireland presented her session on The Experiences of Post Partum Women with Faecal Incontinence Angie Perrin, United Kingdom, spoke on Managing the Problematic Ileo-Anal Pouch Ina Berndtsson, Sweden spoke on Health Related Quality of Life in Persons With A Pelvic Pouch. Tania Lima, Brazil addressed the topic, Continence Evaluation in Children After Ostomy Closing. For Your Information New Board of WCET President: Elizabeth English, Australia Vice President: Susan Stelton, USA Secretary: Judith Weller, Switzerland Treasurer: Susan Dunne, Australia Constitution: Bart Tappe, England Education: Louise Forest Laland, Canada Journal: Elizabeth A. Ayello, USA Norma Gill Foundation: Mary Quigley, Ireland Publications: Shirley McSavaney, Canada, Administrative Assistant: Dianne Garde, Canada Hong Kong Stoma Association I was pleased to be able to join with members of the Hong Kong association at their promotional booth in the Exhibit Hall of WCET. The Hong Kong delegation had an excellent CD presentation on their Visiting Programme which they ran continuously. One of the main tasks that I was able to help with was the promotion of World Ostomy Day. The Hong Kong Associations had ordered locally reproductions of the WOD pin and had printed a special bilingual bro-chure on World Ostomy Day.

The booth was covered throughout the hours that the Exhibit Hall was open by volunteers from the association who did just a great job. I was great to be able to join them when the opportunity presented itself. I was able to attend the office of the Hong Kong Stoma Association and meet with the Executive committee of the organization who graciously took me out to din-ner. The new Executive Secretary Kathleen Tang and the Executive explained how their association runs. They have the Hong Kong region divided into five re-gions or Districts and have 11 working groups to carry out the work of the asso-ciation.

1. District Support Network 2. New Members Service 3. Printing and Educational Group 4. Recreation and Welfare 5. Home Visitation 6. Volunteer Training 7. Financial Working Group 8. Hospital Visitation Working Group 9. Local Communication 10. China and External Communication 11. Advocacy

Hong Kong Executive out to diner


World Ostomy Day is a special temporary group and there is a Creative and Special Service group. There are three Social Workers. The organization receives help from allied agencies. For example the Cancer Society pays the salary of the Executive Secretary; the Commu-nity Chest pays the salary of one Social Worker and the Social Welfare Department also pays for a Social Worker. There are three other support staff; two paid for by the Community Chest and one by the Social Welfare Department. IOA VISITING PROGRAMME The whole purpose of this initiative is to develop a Visit-ing Programme for countries that have no such pro-gramme and further more no means or the ability to write one. It is not intended for countries who can write/ or have their own programmes. The vision is for IOA to pro-vide a service to the developing countries so that they can make a small start on the road to independence. We will work with countries on the generic programme to adapt to the local situations so it will be an ongoing pro-gramme. To be successful, an international ostomy visit-ing program needs to be written in a simple generic for-mat so that it can be easily translated for use in many different countries. The program will also need to be ac-ceptable to the relevant medical professionals and the local ostomy associations. While Surgeons and Nurses can help to educate new ostomates as to the challenges they are likely to face, a visit from an ostomate with simi-lar surgery can provide the patient with dramatic visual proof that a new ostomate can successfully live a full and productive life with a stoma. The writing team that began this work is as follows: Susan Stelton, Vice President, WCET; MSN, APRN, BC, CWOCN Clinical Nurse Specialist/ Wound Ostomy Continence Nurse Memorial Hospital South Bend, Indiana USA

Katsuhisa Shindo, MD, PhD. Prof. of Surgery Head of Kinki University Center for Health Affairs Osaka, Japan Dott. Prof. Carlo Pezcoller, Colorectal Surgeon at the Policlinico Universitario of Modena – Italy, founder member of Lions Club “Modena Wiligelmo”, District 108 Tb Italy, District Officer for “Help to Stoma Patients”. Di Bracken, President IOA _____________________________________________ Nimisha Savani Director, Corporate Marketing and Professional Relations ConvaTec Working all day we were able to complete the first draft, which is now being edited by a freelance medical writer, provided by Convatec's public relations agency. Once this has been completed, the Visiting Programme will be distributed to the IOA Executive Committee for review. The other team members will also present the copy to their respective organizations for review. At the moment, the intention is to translate the initial document into Hindi, Japanese, Mandarin, Spanish, Russian. It is the intention to involve local ostomy associations in the translation where possible so that individual countries can customize the programme to suit its needs. I will keep you up-to-date with our progress. Arrangements for the writing of the first draft of this programme were com-pleted by ConvaTec . Following the WCET Congress I was able to spend some time on vacation in China. I was able to spend some time with Ostomates and ET nurses in both major cities of Shanghai and Beijing and will write a detailed report on my visits in the next edition of IOA TODAY. The IOA Executive Committee will be holding a Busi-ness/ Strategic Planning meeting in Orlando, Flor-ida September 8 to 11th. 2006. Minutes of this meeting will be sent to all Member Country presidents as soon as completed. I look forward to seeing as many of you as possible in Puerto Rico in August 2007 for the World Congress. Please mark the date on your calendar so you do not for-get. Please take good care of yourselves and stay well. With affection Di

Hong Kong Executive out to dinner


REPORT FROM THE EOA TWINNING-CONFERENCE IN VILNIUS 9TH TO 11TH JUNE 2006. Report submitted by Arne Holte. All conclusions by Knut Ellingsen

The conference was organized by the European Ostomy Association, EOA. Head of the conference were Arne Holte from NORILCO, Norway, as president of EOA. The main goal with the conference were to highlight problems and advantages with twinning projects mainly in Europe. The conference gathered people from the following coun-tries: Italy, Ukraine, Canada, UK, Sweden, Germany, Lat-via, Russia, The Netherlands, Denmark, Czech Republic, Germany and Norway. Both Di Bracken, president IOA, and Vladimir Kleinwächter, vicepresident IOA, were among the participants. To be short Arne Holte in his lecture gave his version of what twinning really is.( Arne Holte’s lecture can be sent by E-mail if wanted by anyone). But mainly twinning means that a country with great (greater) resources finds a partner, a twin, a country with less resources and gives help in some way. This means all or something of the following: sending appliances, teaching doctors and nurses, helping with reports, helping with translating, arranging courses and seminars, tourist visits both ways, money, office equipment. One of Arne’s conclusions was that is good to have some-one that thinks about you and care for you. Some of the participating countries have already projects similar to twinning. Germany – Ukraine and Norway – St.Petersburg are good examples. Also ia UK have a lot of things going on in Romania. But there is a great need for more projects. Hopefully someone will twin with Kosovo and Armenia. We were presented for some of the ongoing projects, and also one which is successfully ended, Denmark and Lithua-nia. Some of the participants told the conference that they were ready take a twin. From Canada Astrid Graham told the conference about the good work Friends of Ostomates worldwide in Canada does. From Ukraine Inna Murtazina told about difficult situation for ostomates there, and Daiga Skagale from Latvia told about the situation in her country. Arne Holte told the conference that EOA in the near future will send a simple survey to all EOA members to get a bet-ter overall view on the situation all over Europe. There were lot of vital discussions, and also conclusions. Three really vital conclusions will be that the ultimate goal

must be to have democratic organizations for ostomates based on the charter of ostomates rights for, run by ostomates in every country in Europe. Sending appliances is only a tool, a step on the road to that goal. And it’s impor-tant to have all twinning activities coordinated All conclusions can be read below – they were taken down during the conference by Knut Ellingsen from NORILCO, Norway. Goals: Establish organizations for ostomates (worldwide). Relief shipments is only a starting. Shipments only a tool - leading for later self help. Build up health patient’s care. Build up self help groups. Build up patient’s group. Help to improve quality of life for all ostomates through ostomy organizations based on the charter of ostomates rights Professional help to promote to establish a new organiza-tion. Only ostomates shall control the organization. Important to find reliable persons in countries with no or-ganizations. Twinning. Situation of the donors is mostly similar. Situation for receivers is very different. Their problems and their needs of support are very differ-ent. Personal contact is very important. Help from health personal in actual country. Find out if there are other organizations who already work for ostomates for example Red Cross. Find out which IOA countries are already sending help and find out who need our help?

- Experience - Money - Materials - Facilities - Both sides must have real expectations how to do? - Which contacts do we have? WCET? Stoma

nurses? - WCET has already twinning projects world wide.

What about joint ventures? - Information from producers? Are the producers ob-

jective??


Is twinning the right word?? Different opinions about the question. Some participants meant the word partnership is better. Conclusion: We keep on using the word twinning so far. The decision to eventually change the word can be taken in Brno meeting. Coordination of partnership work. Who does this important work?? Conference want information about what is going on about coordination work in IOA! __________________________________________________

CHARTER OF OSTOMATES’ RIGHTS

A discussion was led by Di Bracken to find out the extent that the Ostomates’ Charter of Rights was being followed in the countries present - Italy, Ukraine, Canada, UK, Sweden, Germany, Latvia, Russia, The Netherlands, Den-mark, Czech Republic, Germany and Norway. The follow-ing are the main points from the discussion.

It is the declared objective of the International Ostomy Association that this CHARTER shall be realised in all Countries of the World. THE OSTOMATE SHALL:

Receive pre-operative counselling to ensure that they are fully aware of the benefits of the operation and the essential facts about living with a stoma Pre-operative counselling is provided in some countries. In other countries, information is provided but not neces-sary counselling. This depends very much on the clinic or hospital. This can be provided by either a doctor or a stoma nurse; in countries that have well established ostomy associations, there are Visiting programmes in place which help with providing information when asked. Have a well-constructed stoma placed at an appropri-ate site, and with full and proper consideration to the comfort of the patient. The stoma site is generally marked by a stoma care nurse if there is one available at the hospital. If not the doctor will decide the site. Receive experienced and professional medical sup-port, stoma nursing care and psychosocial support in the pre-operative and post-operative period both in hospital and in their community. Patients are being discharged earlier due to economic reasons Two countries, Germany and Lithuania ,provide Ostomates with a two /three week care at a Rehabilitation Centre. In other countries, it is possible to see a stoma

care nurse if problems develop well after surgery. Social workers and psychologists are not readily available in all countries.

Receive support and information for the benefit of the family, personal carers and friends to increase their understanding of the condition and adjustments which are necessary for achieving a satisfactory stan-dard of life with a stoma. A problem that is surfacing is that for commercial reasons, not all stoma care nurses tell the ostomate and the family that there is an Ostomy Association available to provide help and support both for the ostomate and the family. The immediate family does not always receive help with how to handle the ostomate before the patient leaves the hospital. Again, in countries that have well established ostomy associations, there are Visiting programmes in place that can help with providing information for the fam-ily when asked. Receive full and impartial information about all rele-vant supplies and products available in their Country. The new ostomate is dependent upon the stoma care nurse in the first decision as what ostomy equipment to use. This decision is made in the hospital. For economic reasons, not all hospitals have appliances available from each manufacturer. The hospital will provide ostomy equipment from the manufacturer that supplies the hospi-tal. Ostomy supplies are not readily available from all ma-jor manufacturers in every country. In many countries not all stoma care nurses are independ-ent as some work for one of the ostomy manufacturers. Where there are Ostomy Associations, the ostomate is able to learn about the different ostomy equipment that is available in his/her specific country. Have unrestricted access to a variety of affordable ostomy products. Ostomy supplies are readily available but it was noted that in some cases one/two manufacturer dominate the mar-ket. Ostomy supplies are provided free of charge in many countries but in others such as Canada, Italy, Latvia not all Ostomates receive completely free supplies. Some ostomates face hardship because of the cost of supplies compared to income. Be given information about their National Ostomy As-sociation and the services and support which can be provided. All countries present had at least ostomy groups but not all have a national ostomy association. Where there is not an established National Association, these groups are run by Ostomates but with the help of doctor or the Stoma Care Nurse. It depends on the relationship between the


hospital and the Ostomy group as to whether the ostomates are informed of the association while in the hospital. This varies from country to country. Be protected against all forms of discrimination All countries reported that discrimination has taken place against Ostomates. Discrimination has been noticed par-ticularly in swimming pools and spas where Ostomates have been denied entry. Ostomates in the catering busi-ness also had been subject to discrimination. Where these instances have occurred, the associations have in-tervened to solve the problems. ______________________________________________ CHRONOLOGICAL HISTORY OF TWINNING PRO-JECT BETWEEN ASSCOL AND ASSCOL. Co-operation started at an European meeting in Bergen in 1992.

Contact between NORILCO and delegates from ASSCOL. ASSCOL asked for immediately help of ostomy bags and equipment. Autumn and beginning of 1993 discussed in the Board of NORILCO if we should start to help ostomates in St. Pe-tersburg. Decision done in board meeting January 1993 to start helping ostomates in St. Petersburg. March 1993 first meeting in St. Petersburg between Board of ASSCOL and Knut Ellingsen. Visits to hospital and stoma clinic in the city. Interviews with manager of Cancer Hospital no. 4 and leader of the stoma clinic. Board reporting in NORILCO NYTT (newsletter of ASS-COL) no. 2 1993. First shipment of ostomy bags sent from Norway to St. Petersburg in June 1993. Knut Ellingsen in st. Petersburg when the shipment ar-rived 16th of June 1993. The first shipment consist of 30 cartons or about 150 kilos. Next shipment sent from Norway in end of 1993. From 1993 until today NORILCO has sent one to three shipments per year. The latest shipments consist often from two to four tons of different stoma equipment . Total volume in 12-13 years about 30-40 tons. We also

send breast prostheses and diapers. Donors: members of NORILCO, pharmacies and shops who sell stoma equipment.

In 1994 we sent surgical equipments to the stoma clinic in St. Petersburg. In 1995 we sent also a lot of antibiotics to hospitals in St. Petersburg. In 1995 20-25 members of NORILCO visited ASSCOL and St. Petersburg. Very successful. We plan a new tourist trip of members from NORILCO to St. Petersburg in end of September 2006. 20 members will participate. In 2000 two surgical doctors from hospitals in St. Peters-burg were invited to Norway to learn the latest experience in cancer treatment. They worked some days at the Nor-wegian Cancer Hospital in Oslo and at a local hospital in Stavanger. In 2000 we arranged the first seminar for ostomates, nurses and doctors in St. Petersburg. About 30 persons participate in the seminar. Lecturer from Norway. Amongst them two stoma therapists from Norwegian hos-pitals. We have also arranged seminars for ostomates, nurses and other health personnel in 2002 and 2004. We now plan a new seminar in September 2006. In every seminar 25 to 30 persons.participate. The last three years NORILCO has collected about 45.000 NOK or in USD about 6.500, for a young ostomate in St. Petersburg, Sergej Smirnov. He is born with analathresia and epispadia (open urinary bladder). He was left by his parents after he was born and has grown up cared for by his grand parents in Russia. The government will not pay for surgical treatment to improve his life. NORILCO will help to pay for the operation for him.. Sergey and two other members of ASSCOL visited NORILCO in our 35 years anniversary in May this year. Challenges today is the difficulties to get in our aid ship-ments to Russia. Custom services in Russia are horrible.

Knut Ellingsen ASSCOL

Oslo, 2006-06-04


TWINNING DEFINITION Twinning is a support process in which a well-established and experienced Ostomy Association offers and gives as-sistance in forming an Ostomy Association in a country where ostomates are in need (especially concerning appli-ances) and no Ostomy Association exists. TWINNING AIMS The final aim of Twinning is to assist in improving the life situation of ostomates. As the support from outside can be only a temporary one Twinning aims to give help for self-helping by assisting in forming and running an Ostomy Association. TWINNING PRECONDITIONS FOR THE SUPPORTING ASSOCIATION To be able to support establishing an Ostomy Association requires - Experience - Money - Supportive Materials (surplus appliances, information

materials) Especially the provision of surplus articles supports the developing Ostomy Group to get ostomates as members and possibly as co-operators. Deutsche ILCO can provide these support facilities. TWINNING EXPERIENCES AND GUIDELINES In Twinning Deutsche ILCO always has made use of Twinning experiences from around the world and guide-lines developed by IOA (by the Strategic Planning Project Committee in 1994)

Experiences - Most of the existing Ostomy Associations were initi-

ated by surgeons or in close co-operation by surgeons and some interested and capable patients. To involve patients from the beginning is a very good experience, as they normally have more motivation and time to work for the Association. And they have special and unique possibilities in supporting their co-ostomates.

- Very often the starting point of the Group/Association was an informational meeting. The doctor did invite their patients to this meeting.

- Most of the Associations did start from one point, from

one Group. When the Group was founded and first ex-periences were available, the founders tried to reach out and to interest ostomy professionals and ostomates in other cities and regions. The reason for this develop-ment is that they realized to be stronger in representing their interests if they are not alone.

- For the same reason it is also a good experience to make every effort from the beginning to link the Groups in an Association.

- The application of the Group/Association for IOA-membership can open the door to a stream of ideas and experiences which might be useful for the work of the Group/Association.

Strategic Considerations In the past, IOA has tried the concept of "Twinning." There are several reasons for the lack of success, of which two are of great importance: - no one individual responsible for the program - no clear guidelines In order to achieve the objective of forming new associa-tions, the following recommendations should be taken into account. Responsibility and Mentorship It must be clear which association and which person is responsible for supporting a group or organization seeking assistance from IOA. Each "Western" ostomy association should appoint one individual (a "mentor") within their as-sociation as their key contact person. The supportive group must also appoint one individual as a contact per-son, who must be able to express the needs and prob-lems of the organization. Language will be a factor, and there must be a mutual language in which both parties can express themselves optimally.

Role and Function of Mentor The mentor is responsible for - asking which support is needed most - asking which opportunities (i.e. medical, social, finan-

cial, economical) exist in the involved country - establishing a working relationship with the requesting

group where both parties can express themselves freely and where the requesting group can seek and obtain whatever information is required.

TWINNING ACTIVITIES OF DEUTSCHE ILCO WITH UKRAINE After a successful twinning co-operation with BUL-ILCO (Bulgaria) Deutsche ILCO did start Twinning activities in Ukraine in 1996. One main reason was that the National Office of Deutsche ILCO continuously got a lot of surplus appliances. As from the beginning it was one of the main strategic decisions to use these articles to promote Twinning activities

TWINNING STRATEGY AND EXPERIENCES OF DEUTSCHE ILCO


and not for sending to individual ostomates, we started a Twinning activity in Ukraine. In the beginning we used a contact one of our members had with a clinic in Tschernigov. During a congress there in May 1996 we came in contact with a surgeon of the Coloproctological Centre of Ukraine in Kiev. With his help ILCO Kiev was founded. For several reasons this activity to promote form-ing a National Ostomy Association finally was not success-ful. During the years 1999/2000 we had an email contact with a surgeon in Lviv. As one other of our main strategic deci-sions is to establish contacts only with persons we better know and can trust in.

We tried to find out if we should develop a co-operation with this doctor. With the support of a Sup-port Group in Munich who organ-ize humanitarian aid transports to Ukraine (mainly Lviv) we were able to find out that the doctor was more interested in business. But the Support Group could ar-range the contact with a colo-

proctological surgeon in Lviv (Prof. Lozynsky). With him we developed a very successful co-operation. He was in-terested to bring “his” ostomates together to form a group. We had success to organize financial support (30.000 EUR for the years 2001 – 2004) for a project “Establishing Advice Centres and Forming Self-Help Groups for Ostomates in the Region Lviv”.

With the additional support by the surplus appliances col-lected and sorted out in our National Office and trans-ported from Germany to Lviv (the transport was taken over by the Support Group in Munich) a stable Ostomy Group in Lviv was established, as a nucleus for groups in other regions of Ukraine and now for the National Ostomy Asso-ciation Astom-Ukraine.

Prof. Dr. Gerhard Englert, Chairman of Deutsche ILCO/08.06.06

Twinning Conference in Vilnius, Lithuania,

June 2006 It was decided at the NOA meeting 1993 in Finland that COPA should try to help In Lithuania. ILCO have arranged at meeting in Riga between delegates from Swe-

den, Latvia and Denmark. At this meeting COPA was so lucky to get a contact to Zil-vinas Saladszinskas from Kaunas Medical Akademy. In the beginning the help mostly was writing together to start a program to help people with ostomy in Lithuania to get a better life.

1. Have good contacts to people who was interested at people with ostomy.

2. Perhaps to help sending appliances 3. Help to make information for the people - translate

some material from COPA. 4. Education to doctors - nurses in Denmark 5. Help to start a association in Lithuania.

August 1994 COPA invited Zilvinas to the yearly NOA meeting. It was in Luleå, Sweden. At the meeting was delegated from all the Nordic countries and the Baltic countries. We discussed who to help in the best way for both parts. We decided that it was not a good idea to send appliances to Lithuania - no it would be better to press the govern-ment to pay the ostomy appliances. The Vicepresident in COPA Arne Nielsen was invited to a meeting in Lithuania November 1995. Arne was observer at a meeting for ostomates and Zilvinas. At this time it was only ConvaTec products for the patients. In 1996 was Zilvinas in Denmark to learn something about "ostomy care" and ostomy surgery. Ostomy therapist Kirsten Bach from Horsens Sygehus, Grethe Wendelbo and surgery Erik Skovbo from Holstebro Sygehus were all so kindly to help with this project. After the visit in Denmark Zilvinas have called Arne Niel-sen and given information, that they now wanted to start LSA - the Lithuanian Ostomy Association. It was a big step - congratulation. Zilvinas was also in Denmark October to learn something about ostomy at the WOD 1996. Here was a conference in Århus 1997 was COPA - Århus local section so lucky that a local sponsor wanted to help financial with a check 20000 DKr. - 2600 EU - to LSA. Zilvinas was invited to be a guest at the Nordic Meeting in Copenhagen. And Zilvinas have told that the check should be used to prepare a book for stoma patients in Lithuania. Many thing is sometimes hard to work with. In the begin-ning the patient could get 5 skinplates and 10 bags and only ConvaTec. But after a few years the situation for pa-

Ina & Daiga


tients with ostomy were much better - if we talk about to get appliances. It was free to chose products and also the number of bags. When you wanted to have more people work as volun-teered in a association then it is also necessary to have a good communication between the people. So COPA wanted to sponsor a fax and telephone to LSA. Then it would be a little bit easier to work for the people. COPA have the last few years tried to help LSA with sup-port to pay for congresses in Holland 2000 IOA, Copen-hagen 2001 EOA (2 persons) and EOA/IOA Portugal 2005. Zilvinas and nurses from Lithuania have also been in Denmark to learns news about stomacare. In 2004 Jurga Gulbiniene and Zilvinas again visited Kirsten Bach at Horsens Sygehus. It have always been a pleasure to have guests from Lithuania. It has never been a problem when COPA have asked our professionals "COPA friends" to open the doors to hospitals, and ostomy clinics ect. When I locked back - I thing that the reasons for the suc-cessful project in Lithuania is many thing - very good and interested persons - understanding between the receiver and the donor. It has also been a great meaning that the difference be-tween the cultures not is to big and Lithuania and Den-mark is both small countries and a rather little population. Now our little baby is grow-up. You do not more used nappy or feeding bottle. LSA can now walk alone and without baby sitter. COPA and your friends in Denmark wish you all luck for the future. Now it is time to have a new baby - we have tried to start a little project in Ukraine. But the Baby is rather big. So we can only help a little bit - but in Denmark we have a proverb - many small brooks will be a big river.

Tanks for you attention

Henning Granslev, President COPA ______________________________________________

Thierry Schuster Fédération des stomisés de France Responsable des jeunes

As each year during the Ascension week end, French koalas and German kangaroos meet together for sharing. Stuttgart received all together in the City Hall. Miss Müller-Trembusch herself, Mayor and in charge of social case caters all of us.

French koalas and German kangaroos meet together for sharing in Stuttgart

Sharing was the main word of these meeting. Vain to ex-plain in a congress that everything will be perfect for its pouch during the visit of the city, during the visit of the zoo of Wilhelma or during the visit of the Mercedes-Benz museum. Disappeared the anguishes as "If I have a leak with my pouch, What will say the others?" 49 other ostomates are with you and they will not give you shame, they will help you because they know how to do, and be-cause we are together. And when you realize you can perform these visit with them, you can plan other visits alone or with other friends. And about the shower of the morning : nothing of such as the community life to dare one to take one again. Stuttgart and its area are the engine of the German econ-omy and this meeting was an engine which in started again more one on the way of a normal life.

http://www.ostomyinternational.org/congress2007.htm


The Stoma Care Society of Malaysia’s Annual General Meeting

We had our Annual General Meeting(AGM) on 25th June 2006. We had a nice hall this time and this was due to the efforts of Madam Mariam, a matron at the hospital.

A section of the members in the hall attending the AGM

After the usual greetings by the President, a talk on stoma care by Madam Mariam followed by a sharing of experience by an ostomate took place.

We also had a small celebration on that day which hap-pened to be the birthday of the incumbent President. Every-one was very touched to hear the wish of the President and we all wish that his wish will be granted as he went on to blow the candles and share the cake.

The President celebrating his birthday and sharing his cake.

After lunch, the AGM proper began, The new Council is now as follows:- President - Hj Zainuddin Mohd Tahir Vice President - Hj Zainal Abidin Atan Hon. Secretary - Mr Kong Kin Chai Assistant Secretary - Madam Mariam Md Nasir Treasurer - Mr Chong Hon Fui Assistant Treasurer - Ms Nor Seha Ahmat Council Members - Mr Lee Sze Yan

- Mr Arumugam - Mr Muthusamy - Ms Rashidah Jamaluddin - Madam Agnes Ng Wong

Lin - Madam Kalsom Supi - Madam Ng Yeng Lai

Auditors - Mr Range Lee

- Madam Goh Advisers - Dato’ John Cardosa

- Mdam Tan Tang Peng. After the business of the day was done, it was already run-ning late and the meeting was adjourned for the new Coun-cil elect to manage the activities for the term from 2006 to 2007. Reported by: KONG KIN CHAI Honorary Secretary _______________________________________________

A long journey and a great difference… By Arne Holte

It is a long distance from Santa Cruz in Bolivia to Tromso in Nor-way. At least that was what Dr. Romulo Calvo (33) experienced when he flew to Norway for a five-week stay at the University hospital in Tromso. He was un-derway for three days, and had great trouble with his bags. In fact the last one did arrive one week late!

But according to the young surgeon his stay in Norway has been great. He has learned a lot, but he has experienced great differences between a Norwegian hospital and his lo-cal hospital in Santa Cruz. In Norway there are doctors and nurses who have special education in ostomy surgery, in Bolivia there are no such specialists. They all have to do almost every kind of operation. In Norway the surgeons come to a patient prepared for the operation; nurses and other personnel have done all the necessary preparations. Not so in Bolivia where the doctors have to do everything themselves. Dr Calvo met a lot of new equipment in the Norwegian hos-pital, and he has learned new ways of operation – ways he will tell his colleges about when returning to Bolivia – where the hospital have nearly no equipment. The patient’s family has to go to the pharmacy to buy what is needed for the op-eration. There is no support from the government for people with an ostomy. There are appliances available, but every-one has to pay 100% themselves. In year 2005 there were 480 ostomies made in St. Cruz. Many patients suffer from a decease called Chagas caused by Vinchuca which is the vector of Tripanosoma Crusis. Complications will be a heart which is much too big, their throat will swell and so will the large intestine. Usually peo-


ple come very late (too late) to the hospital as they do not understand the consequences of coming late. The nurses need to be taught ostomy care, the hospitals need equip-ment for making ostomies, and of course appliances are needed. In Tromso Dr Calvo learned laparoscopy, a method he could have used in Bolivia, but as he does not have the necessary equipment, this is no option. Head of the Norwegian visiting service, Rigmor Yttergård, is the one who got Dr Calvo to Norway. She met Dr Hugo Heredia in Porto and told him that she would do her best to have a surgeon from Bolivia to Norway for teaching. Dr Heredia selected Dr Calvo to come. Some time went, and it seemed difficult to get anyone coming. But Rigmor did not give in, she raised money for the flights – some by help of the local Lions club – and some money from other sources. At the university hospital Dr Artur Revhaug was more than positive, and in addition, he speaks Spanish. The hospital paid for his stay up there far north of the polar circle where the weather this “summer” has been rather like a winter to Romulo Calvo. THE FIRST CONGRESS OF NURSES OF REPUBLIC OF SRPSKA Report by Snezana Cmiljanic

(BOSNA and HERCEGOVINA)

The first Congress of Nurses of Republic of Srpska with international participation was held from 18 - 25 May 2006 in Jahorina mountain resort near Sarajevo. Among delegates from Belgrade were representatives of the Association of Ostomates ILCO Serbia. President of ILCO Mrs. Snezana Cmiljanic addressed Congress on the opening day appealing that all participants should con-tribute to establishing ostomy associations in their towns. So far no Ostomy association exist in the whole Bosnia &

Herzegovina. Representatives of ILCO Serbia met ostomy patients from Sarajevo, informed them of our four years long experience and gave them suggestions for a Statute of Bosnia & Herzegovina ostomates. We hope that such meetings will contribute to organizing Association of ostomy patients in that country.

ACTIVITIES OF ILCO SERBIA ASSOCIATION We celebrated our 4th Anniversary in the period between 16-20 April, 2006. We had guests - representatives of ostomy patients from Slovenia and Croatia and shared with them experiences and suggestions to achieve a high-quality life.We showed them the Royal Palace in Belgrade and the Gallery of Naive Painters in Kovacica ...and were received by the Director of Public Health Institute of Serbia . This institution has recently started to respect our needs for appliances and included us in the Tender commission for supplying appliances.

In future we will also have regular meetings in Health In-surance Fund in order to help solving problems of ostomy patients.

PUERTO RICO – COUNTRY REPORT JUNE, 2006

By: Martha Vélez de Nieves – IPP

Our association has been very busy after returning from the World Congress in Porto which was held on August 2004. We are proud to be the host of the next 12th World Congress. On February of this year we received the visit of our President Di Bracken and IPP Heinz Wolff in order to select a new venue for the World Congress. We se-lected the Fajardo Inn and the World Congress will be held from August 7th – 12th, 2007. We invite all member of our region to come to this congress as it will be a different at-mosphere and full of interesting workshops. I’m sure you will enjoy your stay and will be able to meet ostomates from around the world, so mark your calendar and don’t miss this opportunity. I would like to inform those of you who are not US Citizens that you will need to request a Visa to enter Puerto Rico. If this is your case please let

Group of attendees


me know, as I will send you an invitation letter for this pur-pose. I want to take this opportunity to congratulate Linda Aukett for being elected as our Regional President. Linda has worked for many years advocating for ostomates. I also congratulate Doug Graham and Fernando Ferrer for be-ing elected to be part of the EC of NCACOA Region, and last but not least, I want to thank Marilyn Mau for the won-derful work she performed as Immediate Past President and for her support when I needed to know about history and procedures in NCACOA. I’m sure that with the ex-pertise of this new group we will be able to achieve many things in our region. Our local group has been very active participating in dif-ferent activities related to colorectal cancer awareness. We are working together with the Comprehensive Cancer Control. They have formed a partnership with different organizations to develop the Puerto Rico Cancer Plan for Year 2007. This plan will be the official guideline for all people working with cancer patients. The Puerto Rico Colorectal Cancer Coalition is working with the National Cancer Institute’s Cancer Information Center, and as part of the Colorectal Cancer National Awareness month, CIS partnered with the American Can-cer Society, Puerto Rican Gastroenterology Association, the Oncology Nurses Society, The Puerto Rico Ostomy Association, the Puerto Rico Cancer Center, and Sanofis-Aventis to establish this coalition and develop colorectal cancer projects promoting colorectal cancer and early de-tection and prevention. The first initiative was “Save our Parents”. This educational program targeted 176 high school students, who learned about colorectal cancer pre-vention using an interactive hand on modelof how to per-form a colonoscopy. The students then entered into a contract agreement with their parents asking them to un-dergo colorectal cancer screening. The program was the initial phase of a pilot project for a wider educational initia-tive in Puerto Rican High Schools. It is expected that 400 high schools students throughout the island will be partici-pating in this initiative. The outcomes of the program will be measured by a combination of pre-and post tests, completion of the contracts and participation in this pro-gram. Information gathered from this initiative will be ana-lyzed and will be the basis for inclusion of colorectal can-cer prevention education in the PR High School Health Curriculum. Another colorectal cancer awareness is being planned for the month of November, this time we will target the family members of those who have been diagnosed with colo-rectal cancer. This will be held at the facilities of a Univer-sity.

AOPR also participated in Relay for Life a national event of the American Cancer Society. We walked twelve con-secutive hours at Central Park of San Juan. Our ostomates participated and were very proud of this fund-raising event. This was the 10th edition and we have been participating in all ten events. A group of ostomates volunteer at the cancer center of Auxilio Mutuo Hospital. They visit people who are receiv-ing chemotherapy and also our visiting program is running at this hospital. This group also visits different hospitals in the metropolitan area. Our volunteers continue supporting the American Cancer Society with their weekly Ostomates Rehabilitation Clinics in San Juan, and once a month in Mayaguez and Arecibo. They plan to expand this service to another two cities, and we will also be able to support them with our volunteers. I have been selected as Ambassador for Celebration on the Hill a national event of advocacy for cancer patients. We will bring to Washington a delegation of approximately 30 people and will have the opportunity to speak to our Resident Commissioner Luis G. Fortuño about the work we do in Puerto Rico and the needs of cancer patients. On October we will be celebrating World Ostomy Day. It looks like we will have a great event with the participation of ostomates from island wide.

________________________________________

World Ostomy Day, 7 October, 2006

“Living Life to the Full.”

Two Months to go. The countdown is on for this day and I expect every re-gion to have most or all of their member associations ac-tive in promoting this day with all sorts of activities. It is not too late to organise worthwhile activities. Regional presidents and the assistant co-ordinators have vital infor-mation to assist you, and posted on the website are entry forms for the Coloplast Merit Award and Hollister Photo Competition (which is now closed.) Also posted are the aims of World Ostomy Day, the criteria for the Coloplast Merit Award and some helpful suggestions on how to en-ter this award.


Email Tree. As yet I do not have enough email addresses for the email tree from every region and association I know are participating. The email tree will start in New Zealand and end in Canada starting on October 6. Please get your addresses to me or your co-ordinator. Coloplast WOD Badges. 5,000 of these have been circulated throughout the re-gion. We are indebted to Coloplast for this. Other asso-ciations have produced their own badges as well. In Hong Kong these were produced in Chinese characters for the WCET meeting and WOD activity that took place there. I am very positive that we will have a truly international day that will promote the needs of ostomates to the world and show that with the right support ostomates will be seen to be “living life to the full.” My best wishes for a very successful day. Barry Maughan, WOD Co-ordinator for IOA executive committee. Regional Contacts. EOA Arne Holte President Norway [email protected] Henning Granslev Assistant Co-ordinator Denmark [email protected] NACAOA Linda Aukett President USA [email protected] Sheelah Zapf Assistant Co-ordinator Canada [email protected] ALADO Candida Carvalheira President Brazil [email protected] Alexander Machaca Assistant Co-ordinator Bolivia [email protected] AOA John Cardosa President Malaysia [email protected] Kathleen Tang Assistant Co-ordinator Hong Kong [email protected]

SPOA Barry Maughan President New Zealand [email protected] Gerry Barry Assistant Co-ordinator Australia [email protected]

Aims for World Ostomy Day 2006 LIVING LIFE TO THE FULL

The aim of World Ostomy Day is to improve the rehabilitation of ostomates worldwide by bringing to the attention of the general public and the global community:

The life situation of ostomates

The contributions of Ostomy Associa-tions and Ostomy Professionals

The value of the multidisciplinary ap-proach in ostomy care (Teamwork)


COLOPLAST MERIT AWARD ENTRY What your Entry for Coloplast Merit Award might look like. Please look carefully at the Aims and Criteria for the Coloplast Merit Award listed on the website. Remember the Criteria are designed to give all countries the opportunity to win one of the monetary prizes. Remember you have until at least the end of December to complete the entry. There will be 3 regional contests:

• Europe • The Americas • Asia & South Pacific

each competing for a first prize of USD 2500, and a runner up of USD 1500 This makes a total of six prizes Your country’s entry will need to be collated by your WOD Coordinator or their team of helpers from the activi-ties carried out by your Chapters/Societies. Suggestions for collection to make the entry.

Include plans either for country or a summary of the individual society’s plans. Photos – digital or colour/black and white. Photocopies or original news articles etc. Copies of transcripts from radio/TV – List of Activity. CDs with scanned copies of above. Copies of posters/flyers/letters used. A written story of your country’s efforts. A scrapbook style entry. Audio and video are OK if they illustrate your day. What ever presentation your imagination allows you to make.

Coloplast will take the winning entries and I am sure other highlights and produce a PowerPoint (Data Show) of them. This presentation will be shown to the World Congress in Puerto Rico.


WORLD OSTOMY DAY 4

ADVICE OF PARTICIPATON

PLEASE RETURN BY 30 AUGUST 2006 (See Address Below)

All IOA Member Countries are asked to submit this Advice to indicate whether or not they will be participating in Fourth World Ostomy Day. Countries are also asked to indicate below if they wish this Advice to be used as an Advance Entry Form for the Coloplast Merit Award (First Prize $2,500 US; Second Prize $1,500 US). For Each Grouping Asia and South Pacific The Americas Europe NAME of ASSOCIATION/COUNTRY:

YOUR CONTACT DETAILS:

OUTLINE OF PROJECT: Please provide a brief outline of the activities planned for the day. (e.g. Awareness activities; Fund raising; Rallies; Government contacts etc). Attach a separate page if space not sufficient.

Please forward this Form to: Barry Maughan (WOD Co-ordinator) 21 Strathconnan Court Hamilton 3210 New Zealand E-mail to: [email protected] Fax: +647 3492682

PARTICIPATION DETAILS: Are you participating in WOD Activities? yes/no Would you like to join in the proposed

World- Wide e-mail link? yes/no

If yes, e-mail address to be used:

Are you entering for Coloplast Merit Award

yes/no

Name of Co-ordinator: Contact Details:

Phone: Facsimile:

Email:


BRAZIL. ABRASO X WOD

We are celebrating not only the World Ostomy Day but also the World Ostomy Year considering that we have managed to offer the Brazilian Ostomates a colec-tive action inasmuch

we contacted the most import, the most famous and the widest spread chain of audience in Brasil – GLOBO Network- Channel 4. They are showing our DVD demonstrATING OUR THEME “Living Life to the Full” is possible and can be fulfilling. It shall be shown as of January 2006 up to December 2006 with a nation-wide audience. Consid-ering that the name of our Association, address, tele-phone and e-mail was also shown, we have numer-ous messages from people who were anxious to re-

ceive data concerning Ostomies and Ostomy Associa-tion and didn’t know where to find it and felt isolated and depressed. Each of our Associations has received a copy of this DVD to show in their respective States. We have also translated this DVD to English in order to enter the Coloplast Merit Award. We have also registered this DVD with the respective authorities.

2nd. Textt – ABRASO x NATIONAL ELEC-TIONS:During the month of October, 2006, Brasil will be holding elections for President, Governors, Mayors, Deputies and once again ABRASO is sending to Can-didates for Presidency a “Letter of Compromise” with Ostomates; and the State Associations shall be send-ing letters to Governors-Candidates, etc. P.S. In the past we did the same thing and President was elected. It became a very useful and knowledge-able instrument.

Hello to all our IOA family and friends. Please be aware that our “new-look” Ostomy In-ternational Yearbook 2005 has now been printed and is on its way to all Member and Associate Member Associations and interested parties. We have some very interesting personal stories as well as regional and country reports, including a report from one of our newest members, Mongolia. Please take the time to read all the exciting news from around the world and I would love to hear from more of you for the next edition. Best wishes

Anne

If you are looking to ask an Ostomy related question please visit the

International Ostomy Association Discussion Forum:

http://ostomyinternational.org/cgi-bin/dcforum/dcboard.cgi. This is a GREAT place to ask your

Ostomy related questions.

http://ostomyinternational.org/cgi-bin/dcforum/dcboard.cgi


www.fajardoinn.com

FOR MORE INFORMATION Please visit the IOA Website www.ostomyinternational.org Information may also be found in the IOA Today Newsletter that comes out four times a year. Sign up via www.ostomyinternational.org/back.htm Have other questions? Please contact: Martha Velez – Congress Organizer [email protected] IOA President: [email protected]

http://www.fajardoinn.com/

http://www.ostomyinternational.org

http://www.ostomyinternational.org/back.htm

CONGRESS REGISTRATION FORM and HOTEL BOOKING AUGUST 7TH – AUGUST 12TH, 2007

Congress Registration: The Fajardo Inn Tel: +787 860- 6000 P.O. Box 4309 Fax: +787 860- 5063 Puerto Real, P.R. 00740 Email: [email protected] Puerto Rico www.fajardoinn.com

Please complete and return this form together with payment to the above address BEFORE June 15th, 2007 We can not guarantee accommodation after this date

Title: Mr. / Ms. / Mrs. / Dr. _______________ ____Last Name: _______________________________

First Name: ________________________________Middle Initial: ____________________________________

Are you attending 20/40 Focus? □Yes □No Age_______ years (Must be between 20-40 years)

Association: _______________________________ ________________________________________________

Mailing Address: _____________________________ ______________________________________________

City: _____________ _____ State/Province: ______ _____________ZIP/ Postal Code: ____________________

Country: _______________________________Telephone: ____________________________________ _ ___

Telefax: ___________________________Email Address: _________________________________________ _

Accompanying Person: ___________________________________________________________________ _ _

Arrival date: # of nights: Flight Carrier & No: Arrival Time: _

It is very important to give your arrival information which can be provided at a later date

Registration Fee: Delegates & Attendees - US$150.00 Accompanying Person - US$100.00 (Each delegate to fill out individual form except for accompanying persons) Registration Fee Total US$________ Hotel Registration: (per night) Single Room - Queen Bed 1/Per. $ 83.95 2/Per. $ 92.90…… Total US$____ _ ___

Single Room - w/Balcony, Queen Bed 1/Per. $ 92.50 2Per. $ 102.45…… Total US$_____ ___

Double Room - King Bed or 2 Beds 2/Per. $105.10 …………………… Total US$_____ ___

Triple Room 3/Per. $135.85 ………………………….. Total US$______ __

Grand Total US$_________________________

All Rooms are on a Bed & Breakfast basis – complete stay must be paid in advance (Four nights before or after the Congress, available at the same price)

Payment Method: Credit Card: Visa / MasterCard / American Express / Discovery Card / Money Order (made out to Fajardo Inn) Credit Card No: ……………………………………...……………Expiry Date …………………………………… Card Holder’s Name: …………………………………………………………………………………….....

Forms sent without full payment of the Registration Fee and Hotel Booking Fee will not be accepted. Applicant’s Signature ______________________ Date___________________________

Information regarding transportation to the Fajardo Inn to follow.

http://www.fajardoinn.com/

LAST CALL FOR BIDS FOR THE IOA WORLD CONGRESS 2010 If you enjoy promoting your country and working with different peoples from around the world, you might be interested in hosting the next IOA World Congress in 2010. There are some special rules that a member country hosting a Congress has to follow so I have set out the major ones for you here WORLD CONGRESS THESE RULES HAVE BEEN APPROVED BYTHE IOA EXECUTIVE COUNCIL IN ORDER TO HELP FULL MEMBER ASSOCIATIONS TO FULLY UNDERSTAND WHAT IS REQUIRED OF ANY ASSOCIATION WISHING TO OFFER TO HOST A CONGRESS. REQUIREMENTS 1. The Association must be a Full Member Association of IOA and have been so for a minimum of six years. 2. At least one official of the Association shall have attended a minimum of two previous IOA World Congresses. 3. The Association shall have read, and agrees to accept, the Guidelines for the organization of an IOA World Congress. 4. The Association must make a full and proper presentation to the World Congress of its proposed plans to host a World Congress and must demonstrate its experience and ability to organize such an event. This means that the member country must be prepared to present its proposal to the Business meeting at the World Con-gress to be held in Puerto Rico, in August 2007. 5. It is a requirement that the following conditions are met before an Association will be permitted to make a presentation to theWorld Council:

• A preliminary detailed budget and an estimate of costs must be prepared using the checklist drawn up by the IOA Executive Council.

• A floor plan of the proposed meeting room, together with details of facilities for delegates and speakers, must be prepared.

• A floor plan of the proposed exhibition space must be prepared together with details of access to the space and logistical facilities for exhibitors.

• Details of banqueting facilities and seminar rooms. • A projected cost of hotel accommodation in close proximity to the Congress venue.(It is preferable to have all fa-

cilities in B, C,D, and E under one roof, provided the venue meets the requirements.) • Information is given on nearest International airport and transport facilities. • The final presentation must be evaluated in accordance with the Assessment Procedure set down by the Execu-

tive Council. 6. The Association must have at least one person on its organizing Committee who is fluent in reading, writing and speaking English. 7. The Association must confirm at the time of its notification to the Executive Council of its proposal to host a World Congress that it has as a member of its organizing Committee a person who is competent to keep proper financial ac-counts as required in the official Congress Guidelines. If your organization is interested and needs further information, please get in touch with the secretary Ann Favreau at: [email protected]


Greetings to our friends in IOA - ostomy - International · niversary and Future of the Japanese...

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