REPORT FROM THE WORD OSTOMY DAY CONFERENCE
REPORT FROM THE WORD OSTOMY DAY CONFERENCE
The conference’s first day was devoted to celebration of the WOD.
In 2009 World Ostomy Organization celebrated the World Ostomy Day on the 3rd of October.
The All-Russian conference of ostomy people devoted to the WOD was held by in the State Scientific Center of Coloproctology in Moscow on the 9th of October 2009.
On the 10th October 2009 the meeting of the Coordination Council of the Russian Regional Ostomy Patient’s organizations took place in the ASTOM’s office.
Organizers of the conference were: the Russian Public Organization of Ostomy Patients ASTOM and the State Scientific Center of Coloproctology.
The conference was held with the assistance of the Public Relations Committee of the Moscow Government, the Department of Healthcare and the Department of Social Protection of Moscow.
Coloplast A/S (Denmark), ConvaTec (Great Britain), Tena (Sweden), Palma Ltd. (Russia), Schering –Plough (Switzerland), BEKA –Hospitec (Germany) provided support and assistance in the preparation of the Conference.
98 ostomy patients, ASTOM members, officials from the Ministry of Healthcare and Social Development of Russia, the Federal Fund of Social Insurance, the State Scientific Center of Coloproctology, the Department of Social Protection of Moscow, the Public Relations Committee of the Moscow Government, the Moscow House of Public Organizations, producers of ostomy care products - Coloplast A/S (Denmark), ConvaTec (Great Britain), Palma Ltd. (Russia), producer of urology care products - Tena (Sweden), producer of rehabilitation products - BEKA –Hospitec (Germany); heads of regional public organizations of ostomy patients from Russia – ASSKOL, Saint-Petersburg, KUBSTOM, Krasnodar, URALSTOM, Perm, ASSTOM –VOLOGDA, Vologda; head of Belarus association of ostomy patients BELAS, Minsk; doctors and nurses from Moscow, Saint-Petersburg, Ulan-Ude, Angarsk, Vladivostok; representatives of the Russian State University of tourism and service, the “Russian Invalid” newspaper, “ASTOM. Guide on active life” magazine took part in the conference.
The conference was preceded by the exhibition of ostomy, continence care products.
President of ASTOM V. Sukhanov opened the conference and introduced the Conference Presidium:
- G. Vorobiev,M.D., Professor, Director of the State Scientific Center of Coloproctology, academician of the Russian Academy of Medical Sciences;
- I. Kalashnikova, M.D, Head of the Ostomy Patient Rehabilitation Center and Head of the Ooutpatients’ Clinic f of the State Scientific Center of Coloproctology;
- M. Suslova, M.D., Head of the Public Relations Committee Department of the Moscow City Government;
- V. Sukhanov. Ph.D., President of ASTOM.
President of ASTOM V. Sukhanov read complimentary addresses to the conference from the Minister of Healthcare and Social Development of Russia T. Golikova, Chairman of the Public Chamber Commission L. Bokeriya, president of the World Ostomy People Association Dr Harikesh Buch.
Then on behalf of the Public Relations Committee of the Moscow City Government M. Suslova, Head of the Department, read the greetings from the 1st Deputy Mayor of Moscow City Government L. Schvetcova and the Head of Public Relations Committee Department of the Moscow City Government A. Chistyakov.
V. Kotova, Deputy Chief of Rehabilitation Department of the Department of Social Protection of Moscow, read an address of the 1st Deputy Administrator of the Department of Social Protection of Moscow O. Gracheva.
Professor G. Vorobiev made a welcoming speech. He said that the conference was a vivid manifestation of a strong unity of medical specialists and ostomy people enabling to overcome barriers on the way to the development of high quality rehabilitation of ostomy people and their integration into full and active life.
Then V. Sukhanov, President of ASTOM, Chairman of the Coordination Council of the Russian Regional Ostomy Patients’ Public organizations, spoke of the role of the Ostomy Patients’ Public Organizations in the development of the ostomy patients’ rehabilitation process.
REPORT
First of all I would like to congratulate you with the World Ostomy Day! This year we celebrate it on the 3rd of October.
This is an important international event as it is celebrated in more than 80 countries and allows focus attention on the essential problems of ostomy people and to find most effective ways to solve them.
This day is an indicator of the effectiveness of cooperation between government authorities and public organizations.
The World Ostomy Day was proclaimed by the UN in order to attract attention of the society and the state to the needs of ostomy people, to eliminate economic and social discrimination of ostomy people. It was for the first time celebrated on the 2nd of October, 1993.
The first public organization of ostomy patients was formed in Denmark in 1951. Then public associations of ostomy patients were established in Western Europe and the USA. The International Ostomy Association was founded at the First International Congress of Ostomy people which took place in London in October 1976.
In 1980s public associations of ostomy patients were organized in many countries worldwide. And today the International Ostomy Association (IOA) unites 80 national associations of ostomy patients and has a number of regional divisions:
European Ostomy Association
Asian Ostomy Association
Ostomy Association of the Caribbean Islands, North and Central America
Ostomy Association of the South America
Ostomy Association of the South Pacific
ASTOM joined the International Ostomy Associations at the 10th World Congress of Ostomy Associations in Amsterdam in April 2000.
ASTOM is taking an active part the activities of the International Ostomy Association: in congresses, conferences and meetings. It informs the world ostomy movement of the development of ostomy care and rehabilitation in Russia through the international magazine “Ostomy International”.
There are several regional public organizations of ostomy people in Russia. They are established in Saint-Petersburg, Krasnodar, Perm, Ulan-Ude, Novosibirsk, Krasnoyarsk, Orenburg, Rostov-on-Don, Kursk, Magnitogorsk, Armavir and Vologda.
ASTOM is maintaining friendly relations with ostomy organizations from the Ukraine, Latvia, Lithuania, Estonia and Belarus.
In order to promote the development of ostomy care service in Russia in September 2004 the Coordination Council of Russian Regional Public Organizations of Ostomy Patients was formed.
In 2007 at the 12th World Congress of Ostomy Associations in Puerto Rico, USA the Coordination Council of Russian Regional Public Organizations of Ostomy Patients became full member of the International Ostomy Association.
The Coordination Council of Russian Regional Public Organizations of Ostomy Patients is a coordinating, advisory and consultative body.
In February 2005 the Association of Russian Coloproctologists and the Coordination Council of Russian Regional Public Organizations of Ostomy people signed the “Protocol on cooperation in organization and development of ostomy care service in Russia”.
Mutual efforts of stoma care specialists, ostomy people and public organizations of ostomy people have enabled to solve many problems of medical, social and psychological rehabilitation.
The regional public organization of ostomy invalids ASTOM was founded on the 23rd of March 1993 by a small group of enthusiasts. Its activities proved that social partnership of the state, commercial and public organizations allows to solve an important task of reintegration of ostomy people into society.
ASTOM is taking an active part in the implementation of the social reform of the Russian Government. It proposed a number of legal amendments, which will allow to improve quality of life and social status of ostomy people. One of the main directions of cooperation with the Ministry of Healthcare is working out of the effective reimbursement system and standards of stoma care and rehabilitation.
The first ostomy rehabilitation centre was organized in Moscow in 1995. Since that time ASTOM in cooperation with the Social Protection Department, the Public Relations Committee and the Charity Council of Moscow has participated in implementation of many social programs for ostomy people.
Producers of ostomy care products ConvaTec, Coloplast, TENA, Palma provide valuable assistance and support to ASTOM in development of rehabilitation service in Russia.
ASTOM actively cooperates with mass media, is engaged in informational and educational activities. 16 articles on social topics were published in local and international newspapers and magazines. Booklets devoted to ASTOM’s activities were published 4 times in Russian and in English. ASTOM also published recommendations for ostomists: “Rehabilitation of ostomy patients. Problems and Solutions”, “Diet of ostomy patients”. Such educational materials as “Social rehabilitation of ostomy patients”, “Complex rehabilitation of ostomy patients in Moscow” were prepared for specialists in the sphere of rehabilitation of ostomy patients and social protection. The chapter “Social and medical rehabilitation of ostomy patients” was included into the students-book for students specializing in social work.
ASTOM published 35 scientific articles on social aspects of ostomy patients’ rehabilitation, 2 scientific booklets on social rehabilitation of ostomy patients and 4 issues of the new social magazine related to ostomy problems “Guide on active life”.
In 2009 ASTOM participated in the unique joint project – preparation of the booklet ”Home care for patients”. This booklet describes main principles of home care for elderly and young patients. It is published in cooperation with ASTOM, TENA, Coloplast and ConvaTec.
Ostomy forum opened on ASTOM web-site provides ostomy people and their relatives with information, enables them to discuss urgent problems, to consult specialists and to find friends.
Social reform and social protection are priorities of the state policy of Russia. Interaction of government bodies and non-commercial organizations requires new approaches, which will enable to increase their involvement in solution of social problems.
Social partnership of the 3 main subjects of social work: governmental structures, commercial and public organizations allows to find effective solutions of many pressing problems of ostomy people invalids and contributes to their reintegration into society.
The state should encourage this cooperation and stimulate activity of public organizations by tax policy and improvement of the legislative base.
Public organizations have a unique resource - social initiative of people. Public organizations are closer to people and are more flexible, effective and “human” than state authorities. Public organizations clearly recognize problems and needs of socially vulnerable people and attract attention of society and the state to social problems.
Among the numerous constraints of the development of public organizations activity are: absence of constant financing, distrust of state authorities, misunderstanding of medical specialists.
It is important to understand that if the state creates for public associations of invalids favourable legal, organizational, financial and tax conditions they may be effectively used as the mechanism (providers) of the social policy of the state.
Public organizations are integral part of democratic society.
In conclusion of my report I once again would like to congratulate all ostomy patients of Russia and everyone who helps them to recover and to return to normal life with the World Ostomy Day.
Then Kalashnikova, Head of the Ostomy Patient Rehabilitation Center and the Outpatients’ Clinic of the State Scientific Center of Coloproctology shared with the audience her views on the problems of ostomy patients’ medical rehabilitation.
Head of Public Relations Committee Department of the Moscow City Government M. Suslova told the participants of the conference about social partnership of public and state structures in the process of decision making on important social problems.
President of the Public Organization of Ostomy Patients of Saint-Petersburg ASSKOL Z. Koltunenko and
President of the Public Organization of Ostomy Patients of Vologda ASTOM-VOLOGDA E. Vasilyuk informed the conference of the activities their respective organizations.
President of the Belarus Ostomy Patients’ Organization L. Chernyak shared her experience in the development of rehabilitation service in Belarus.
Head of the Rehabilitation Department of the Oncology Clinic, Saint-Petersburg, E. Balobina told the conference about activities of her Department.
Presentations were made by producing companies Coloplast A/S (Denmark), ConvaTec (Great Britain) and BEKA –Hospitec (Germany).
In the end of the conference I. Kalashnikova and V. Sukhanov answered the participants’ questions.
The Conference Resolution delivered by the President of ASTOM V. Sukhanov was adopted unanimously.
RESOLUTION
the World Ostomy Day Conference
09.10.2009 State Scientific Center of Coloproctology
1. Celebration of the World Ostomy Day enables to focus attention on the most vital problems of ostomy people in Russia and to find most effective ways to solve them. To hold regular All-Russian Conferences timed to the WOD and to invite there public authorities, officials from the Ministry of Healthcare and Social Development, the Federal Bureau of Medical and Social Expertise, producers of ostomy care products, public organizations, mass media.
2. To continue cooperation in the framework of social partnership with the State Scientific Center of Coloproctology in order to further develop ostomy patients’ rehabilitation service in Russia. To provide overall support to the ostomy patients’ rehabilitation service including social and psychological support.
3. In cooperation with the Association of Russian Coloproctologists to provide assistance and support to regional public organizations of ostomy patients in Russia and the CIS.
4. In cooperation with the Ministry of Healthcare and Social Development, the Federal Fund of Social Insurance, the Federal Bureau of Medical and Social Expertise, the State Scientific Center of Coloproctology and other healthcare and social protection organizations to develop legal base, which will enable to improve of quality of life and to raise social status of ostomy patients in Russia, to provide free access for each ostomy patient to modern high quality ostomy care products, to create adequate reimbursement and supply system, to develop complex ostomy rehabilitation service including social rehabilitation.
5. To develop partnership and cooperation with producers of ostomy care products. To support producing companies in organization of supply of ostomy care products.
6. To develop research and methodological work in the field of medical and social rehabilitation of ostomy patients. To issue methodological recommendations and other informational materials for specialists.
7. To co-operate actively with mass media, to carry out informational activities, to publish booklets and other informational materials for patients and specialists.
The first day of the conference finished with the concert and friendly dinner.
THE SECOND DAY OF THE CONFERENCE
The meeting of the Coordination Council of the Russian regional ostomy patient’s organizations took place in the ASTOM’s office (Moscow, Kovrov pereulok, 28/1) on the 10th of October 2009.
Agenda of the meeting of the Coordination Council
- Report of V. Sukhanov, President of ASTOM
- Problems of rehabilitation process and development of stomy public movement in the regions. - Reports of the members of the Coordination Council.
- Cooperation with producing companies.
- Introduction of new members of the Coordination Council.
- Organizational issues.
Participants: Heads of public organizations of Ostomy people : ASTOM- Moscow, ASSKOL- Saint –Petersburg, KUBSTOM – Krasnodar, URALSTOM – Perm, ASSTOM –VOLOGDA, Vologda; representatives of Coloplast A/S (Denmark) as observers.
President of ASTOM, Chief of the Coordination Council of the Russian regional Ostomy Patients’ Public Organizations V. Sukhanov made the report.
REPORT
Of the President of ASTOM, Chairman of the Coordination Council of the Russian regional Ostomy Patients’ Public Organizations V. Sukhanov
Moscow, October 10, 2209
Participation in the working out of the tender documentation of the Federal Insurance Fund for 2008 federal tenders on the supply of ostomy care products. All proposals, recommendations and amendments to tender requirements made by ASTOM were taken into account.
ASTOM members took part in the XII European Congress of Ostomy Patients’ Associations in Brno, Check Republic in September 2008. Chairman of the Coordination Council of the Russian regional Ostomy Patients’ Public Organizations V. Sukhanov made the report on the main activities of stomy patients’ associations and problems of ostomy people. Upon the suggestion of V. Sukhanov the European Congress made an appeal to the President of Russian D. Medvedev with the request to solve problems with supplies of ostomy care products of foreign producers.
In 2008 Coordination Council launched an active campaign against Order #321 of the Ministry of Healthcare of 07.05.07 regulating norms and standards of the supply of ostomy care products which deprived the ostomy patients of the right to be provided with skin care products and accessories (creams, protective films, belts and etc.) As a result in March 2008 the Federal Insurance Fund in the letter to its regional departments officially confirmed that Ostomy patients along with Ostomy care products should be supplied with skin care products and incontinent patients should be provided with urine collecting systems and catheters.
Problems of Ostomy patients were widely covered in Sukhanov’s reports and articles:
- Development of ostomy care products supply mechanism (article)
- Improving quality of life of ostomy patients (article)
- Report at the 2nd International forum on incontinence problems (France, 2008)
- Report at the 2nd All- Ukrainian Congress of Ostomy patients (Ukraine, 2008)
- Report at the 12th European Congress of Ostomy Association on ostomy patients rehabilitation service in Russia (Czech Republic, 2008)
- “Social barriers of reintegration of ostomy patients into society” – Report
- “Social and legal policy of the government in reintegration of ostomy invalids” – Article
- “Our main task is to give joys of life back to ostomy patients” –Report (Japan, 2008- 6th Asian Congress)
- Participation in 2 conferences of Russian stoma care specialists (oral presentations, December 2008, September 2009)
- Participation in the international conference on “Problems of quality of life in healthcare” – Report (Turkey)
- “ Problems of physical and social limitations of ostomy patients” –Article
- “Analysis of adaptive potential of ostomy patients” – Article
- Articles in “STOM-info” (Ostomy people’s newspaper)
- “Problems of social life of ostomy patients” – Article
- In 2008 a new magazine devoted to ostomy people’s problems -“Guide on active life” was established. 4 issues have been published since.
- In 2009 ASTOM participated in the unique joint project – preparation of the booklet ”Home care for patients”. This book describes main principles of home care for elderly and young patients. It was published in cooperation with ASTOM, TENA, Coloplast and ConvaTec.
The ASTOM site hosts a forum where ostomy patients, their relative as well as specialists can get a lot of useful information, to talk, to discuss urgent problems, to consult specialists, to find friends.
Since 2008 we have been facing a critical situation with delivery of ostomy care products, related to imposition of customs duties and VAT on ostomy care products. Thus cost of products increased 30-40%. To solve the problem the Coordination Council applied to the Russian Government, Ministry of Healthcare, the Federal Social Insurance Fund, Federal Customs Service, the Public Chamber of Russia, the Federation Council of the Russian Federal Assembly.
As a result the Ministry of Healthcare is involved in working out of a new customs duties and VAT regulation of the Russian Government. And meanwhile the Ministry of Healthcare issues special letters confirming that ostomy care products imported to Russia are used for rehabilitation purposes and are VAT and customs duties exempt.
ASTOM in cooperation with the Ministry of Healthcare, the Federal Fund of Social Insurance, the Federal Bureau of Medical and Social Expertise is constantly working on improvement of the Russian rehabilitation service.
We have very strong ties and enjoy multifold support of the Social Insurance Fund that enables us to solve any problems related to reimbursement or supply of ostomy invalids with ostomy care products.
This year in spite of the difficult financial situation in Moscow with support of the Moscow coloproctology centre, Department of Healthcare of Moscow we managed to keep budget allocations for ostomy care products on the same level as before.
ASTOM spares no efforts to provide help and assistance not only to ostomy people but to other categories of disabled people as well.
ASTOM maintains fruitful cooperation with producers helping them to overcome obstacles created by official circumlocution and defects of legislation.
ASTOM has strong contacts and provides constant support to other regional associations of ostomy patients.
In the report V. Sukhanov pointed out main problems of the development of rehabilitation process in Russia. Representatives of regional public organizations of ostomy patients and Coloplast representatives discussed and worked out main directions of cooperation.
- Specialists of Medical and Social Expertise responsible for the development of individual rehabilitation programs for ostomy patients have not yet worked out instructions and standards of rehabilitation services provided to ostomy invalids. The Federal Bureau of Medical and Social Expertise and the Ministry of Healthcare in cooperation with medical specialists, producers and ostomy patients should develop recommendations and standards of rehabilitation of ostomy patients.
- In view of reorganization of the existing reimbursement and supply system and taking into account failure of this experiment in Moscow in 2009 to appeal to the Russian Government, the President, the Federation Council, the State Duma, the Public Chamber, the Ministry of Healthcare and Social Development with the demand to guarantee regular supply of invalids including ostomy people with technical means of rehabilitation.
- There is lack of information on the rights of ostomy people, rehabilitation measures, reimbursement and supply of products as well as other matters related to restoration of the social status of ostomy people and their reintegration into society. Therefore it is necessary to facilitate educational activities and extend information coverage among ostomy patients, specialists and the state, to draw public’s attention to these problems through mass media, magazines, newspapers, booklets, leaflets seminars and conferences.
- Development of regional public organizations of ostomy patients encounters a lot of legal and organizational problems. It is essential to provide legal support to ostomy people in the regions in establishing public organizations.
- Undeveloped system of home care doesn’t allow to provide adequate help and care for seriously ill bedridden people or lonely elderly people which are unable to take care of themselves. Proper home care should be organized and provided to this group of people.
A new member - Public organization of ostomy patients of Armavir – was admitted to the Coordination Council. Thus, the Coordination Council consists of 11 regional public organizations of ostomy patients.
The meeting of the Coordination Council was fruitful and effective. Moreover, it was an educational seminar for all its members. Many urgent problems in the sphere of rehabilitation of ostomy patients and supply of modern ostomy care products were discussed.
The meeting was followed by the dinner party for the guests of the meeting.
RESOLUTION
of the Coordination Council
10.10.2009
1. To apply to the Federal Bureau of Medical and Social Expertise and the Ministry of Healthcare with the request to develop in cooperation with medical specialists, producers and ostomy patients recommendations and standards of rehabilitation of ostomy patients.
2. To appeal to the Russian Government, the President, the Federation Council, the State Duma, the Public Chamber, the Ministry of Healthcare and Social Development with the demand to guarantee regular supply of ostomy people with ostomy care products. In view of reorganization of the existing reimbursement and supply system to work out legal base which will protect the rights of invalids including the ostomy people.
3. To facilitate educational activities and extend information coverage among ostomy patients, specialists and government authorities, to draw public’s attention to these problems through mass media, magazines, newspapers, booklets, leaflets, seminars and conferences.
4. To provide legal support to ostomy people in the regions in establishing public organizations.
5. To organize home care service for ostomy people.