Information

        OUR MAIN TASK IS TO GIVE JOYS of LIFE BACK TO STOMA PATIENTS

REPORT

Of the MoscowRegional Public Organization of Stoma Patients “ASTOM”

Mr. V. Sukhanov,  President

Dear friends and colleges!

First of all I would like to thank the  Organizing Committee of the 12th  World Congress for the kind invitation and opportunity to make  this report. I would like to thank our sponsors – Coloplast and ConvaTec.

This kind of conferences is of great importance for the exchange of experience, development of friendship and cooperation between people.

Russian Federation is the biggest country in the world, it occupies one fifth of the square land surface. It is situated both in Europeand in Asia. Thus it unites several great world cultures.

Russiaconsists of 87 regions. Each region is very different one to another. Regions vary because of geographical positions –it forms different  climate, distance from capital, density of population. For example region  Moscowhas population of 15 million people and square of 90 square km, and region Tyumenhas population of 3 million people and square of 1500 square km.

All regions have their own history – one were originally Russian, other were acquired by Russiain different centuries. Thus each group of regions has its own traditions, religion and culture.

Здесь мы говорим о том что Россия большая страна географически, включающая в себя 87 регионов с огромными культурными различиями, обусловленными различным уровнем развития, национальными традициями, религиями, расположением регионов

I represent the MoscowRegional Public Organization of Stoma Patients “ASTOM” and Coordination Council of Russian Regional Public Organizations of Ostomists.

  “ASTOM” was founded by stoma patients in 1993.  “ASTOM”  is the biggest Russian organization of stoma patients. It unites about 5000 members of all ages and different professions.

According to the age ASTOM members  can be divided into the  following groups:

• up to 16 years old – 0,3%;
• from 16 to 60 years old – 23%;
• over 60 years old – 76,3%.

According to the type of stoma  there are:

• 8% of patients with ileostomy ;
• 90% - with colostomy;
• 2% - with urostomy.

Some people have with two stomas – colostomy and urostomy.

Since 1993  we have been working in close contact with the Moscow   Ostomy Patients’ Rehabilitation Service, which is organized on the base of one of Moscowhospitals.

However we don’t confine our activities only to the development of medicine care for ostomists because rehabilitation of stoma patients includes several aspects: medical, psychological and social:

• all stoma patients in Moscoware supplied with stoma care productsvia the Moscow  Ostomy Patients’ Rehabilitation Service;
• stoma therapists select stoma care products individually for each patient;
• stoma patients and their relatives are trained  to use stoma care products;
• in order to register and keep records on ostomy patients a special computer program “Stoma Patients Register” was created. This program helps to monitor the flow of stoma care products, the availability of the products in the warehouse and delivery to the patients.
• ASTOM organized Delivery Service  for ostomists which cannot visit the Stoma Centre because of old age or health problems. The patients make their orders by phone and the Service delivers  products to their homes. Now this service is provided on the base of the Moscow  Ostomy Patients’ Rehabilitation Service.    

•  Psychological and social support is one of our most essential activities. Our Organization carries out this work neatly and consistently because stoma patients need psychological and social assistance constantly. Stoma patients are no longer left alone with their problems as it was in the past but are provided with necessary assistance both before and after the operation.
• One should not also underestimate importance of  our Information Service, which provides stoma patients with  consultations on medical, social and legal matters  and which helps to attract public attention to the needs and problems of stoma patients.

Participation in the realization of the social policy of Moscowis another example of partnership between ASTOM, Social Protection Department of Moscow, Public Relations Committee of Moscow and the City Charity Council.

ASTOM has implemented 3 socially important competitive and 8 charity programs and is still continuing work in this direction. Great assistance in this work is provided by the City Charity Council and Social Protection Department of Moscow, Public Relations Committee of the Government of Moscow.

In the framework of the city programs initiated and implemented by ASTOM ostomy patients of Moscoware offered a wide range of social services that have considerably improved the rehabilitation service and enabled to provide not only medical but  social rehabilitation as well.

ASTOM in cooperation with government authorities and state medical and social institutions  works out projects,  legal documents and recommendations on medical and social rehabilitation of ostomists and their integration into society.

ASTOM is an active participant of specialized international exhibitions devoted to rehabilitation technologies.

ASTOM  maintains close contacts with mass media, and is engaged in informational and educational activities. 16 articles on social topics were published in local and international newspapers and magazines. Booklets on ASTOM’s activities recommendations for ostomists on rehabilitation, social  adaptation and diet of ostomy patients are very popular among patients and specialists.

ASTOM together with the Moscow State University of Service, Sub-faculty of medical and psychological rehabilitology and Sub-faculty of sociology and social work is involved in educational,  scientific and research work in the sphere of medical and social rehabilitation  of ostomists, prepares and publishes educational literature for specialists of social sphere.

The chapter “ Social and medical rehabilitation of ostomy patients” was included into the students-book “Aspects and  methods of social work” for students specializing in social work. Our specialists published over 20 scientific articles on social aspects of ostomy patients’ rehabilitation and the Ph.D. thesis “Social rehabilitation of ostomists in present-day Russia: sociology aspect” was defended.

Мoreover 2 scientific books on different aspects of rehabilitation of invalids came out within the last 2 years.

The two scientific books: “Social Rehabilitation of Ostomy Patients” and “Rehabilitation Service of Disabled Patients” are published by a well known in Russian scientific circles “Nauka” (“Science”) Publishing House of the RussianAcademyof Sciences in 2006 and 2007. Among the reviewers of the books are Academicians and Doctors of Science of the RussianAcademyof Sciences.

These books are the first to represent scientific concept and methodological base of the development of the rehabilitation service in Russia.

These books are included into the library of the RussianAcademyof Sciences and provide valuable  information and theoretical support for the Ministry of Healthcare and Social Development, the Federal Social Insurance Fund, the Federal Bureau of Medical and Social Expertise, and also for university students specializing in medical and social work.

Within the framework of cooperation between the MoscowStateUniversityof service and KoreanMedicalUniversitythe book on a theme of a social accomplishment of the Russian society is issued
This book contains the large partition on problems of the  ostomy patients of Russia. The author of this unit is the President Moscow ostomy Organization ASTOM Ph.d. V.Sukhanov

ASTOM organizes and takes part in conferences and meetings with well known medical experts, with government officials responsible for health care and social policy and other events such as  celebration of the World Ostomy Day. This celebration gives a new impulse to the development of the stoma patients medical and social rehabilitation process; it gives us an  opportunity to attract  attention of mass media, government and health care officials to the problems of stoma patients. 

ASTOM has been actively working not only in Moscowbut in the whole Russiaas well.

As you probably know, Russiais a big country.

The Russian Federationconsists of 87 regions and two federal cities – Moscowand Saint Petersburg. Its population is over 140 millions people.

There are approximately 50 thousand  registered ostomists, those who have invalidity status and are registered in the Social Insurance Fund and  receive ostomy care products free of charge.

Number of registered stoma patients in some regions of Russiais as follows:

Moscow– about 7000; Moscowregion – about 3000;

Saint-Petersburg – about 5000;

Permand Permregion – about 2500;

Krasnodarand Krasnodarregion – about 3500;

Krasnoyarsk– about3000.

Whereas according to different data total number of stoma patients in Russiavaries from  80 000 to 120 000 people.

Though the number of ostomists in Russiais big, unfortunately we don’t have an All-Russian organization of stoma patients. However there are 11 regional  organizations in Russia.  

Russian regional public organizations of stoma patients:

I should mention that foundation of public organizations of ostomists in the Russian regions is a complicated procedure accompanied by numerous difficulties.

But ASTOM is taking an active part in the foundation of regional public organizations of ostomists in Russiaproviding informational  and methodological support.

According to the law it is necessary to unite  at least 50 regional organizations to form an all-Russian organization. And now “ASTOM”, as a leading and most numerous organization, actually represents the interests of all Russian stoma patients and coordinates its activities with other regional organizations. 

ASTOM is maintaining friendly and business relations with public organizations of ostomists of Ukraine, Latvia, Lithuania, Estoniaand  Belarus. Ukraineis experiencing active development of ostomy patients organizations and ASTOM provides informational and analytical assistance to ostomists’ organizations in Lviv, Odessaand Kiev, actively participates in their conferences and meetings.

“ASTOM” is also an associate member of I.O.A.

In order to promote development of ostomy care service in Russiaand to attract attention of different government bodies and regional authorities to the needs of ostomy patients in 2004 ASTOM initiated foundation of the Coordination Council of Russian Regional Public Organizations of Ostomists. The main purpose of this Council is to give support to stoma patients in all regions of Russiaand to develop regional organizations and create new ones.

The Coordination Council of Russian Regional Public Organizations of Ostomists is a coordinating and advisory as well as informational and consultative body. There are 9 members in the Coordination Council.

I’m proud to say that social reform and social protection are becoming 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

ASTOM is taking an active part in the social reform of the Russian Government working out proposals aimed at perfection of the legislative base related to improvement of quality of life and social status of ostomists. One of the main directions of cooperation with the Ministry of Healthcare and Social Development is working out of the legislative base providing free access for each ostomist to ostomy care products, psychological support and social services.

In  2005 the Association of Russian Coloproctologists and the Coordination Council of Russian Regional Public Organizations of Ostomists signed  the “Protocol on cooperation in organization and development of ostomy care service in Russia”.

The State Scientific Centre of Coloproctology and ASTOM worked out recommendations on rehabilitation measures and supply of invalids with ostomy care products and rehabilitation services for the Federal Government.

In different regions the amount of  state monthly allocations for ostomy care products  for an ostomist varies from 25 to 50 USD. In Moscowostomy patients receive products for the approx. amount of 50 USD per month.  

As a result of the social policy of the Russian Government ostomy care products have become available for almost each registered ostomy patient in any region of Russia.

Now high quality ostomy care products of the world leading producers Coloplast A/S (Denmark) and ConvaTec (Great Britain) and also products of the Russian producers Palma, Ltd. and JSC  Khronotron are offered in the Russian market.

Producers of ostomy care products ConvaTec, Coloplast, Palmaprovide valuable assistance and support to all ASTOM’s undertakings directed at the development of the rehabilitation process in Moscowand in Russia.

Though substantial financial resources for reimbursement of ostomy care products are available since 2008, the problem of supply of all ostomates with ostomy care products hasn’t been solved. The Russian budget has allocated the amount of 1,2 bln RUB (approximately 50 mln USD) but only 60% of this sum have been spent.

The main problems hindering development of the rehabilitation service in Russiaare as follows.

1. Undeveloped legal base (imperfect legal base).
2. Legal nihilism: subjective interpretation of legal acts by state officials and other functionaries of the rehabilitation services, their unpunished loose observance of legal acts.
3. Lack of statistical data on ostomy patients, only 50% of them are officially registered.
4. Lack of ostomy rehabilitation service: stoma centres’ network is undeveloped; there are few trained ET nurses/stoma care specialists.
5. Complex reimbursement procedure, constant supply problems.
6. Customs duties and taxes on imported ostomy care products of 30%.
7. Lack of information exchange between all the participants of the rehabilitation process.
8. No access to reimbursement of ostomy patients without invalidity status. So ostomates who are not registered as invalids are not included into the reimbursement system. According to the law only ostomy invalids can have ostomy care products reimbursed.

Developing stoma care and ostomy rehabilitation service ASTOM is dealing with other problems of ostomates such as incontinence and  chronic wounds, pressure sores, leg ulcers. Solving these problems we have encountered a large group of patients, which are not ostomy patients, but which suffer from the same   health problems. These patients: incontinent patients and chronic wound patients don’t have their public organizations and thus they lack public attention and possibilities of ostomates related to their integration into society.  Nobody is dealing with their problems though they are similar to those of ostomates. That’s why ASTOM  and Coordination Council of regional ostomates’ public organizations  have started an active work to develop legal base  for rehabilitation of a vast socially unprotected layer of the Russian population including people requiring urine collecting devices, absorbing linen and diapers and wound care products.

I strongly believe that our meetings and our  joint activities set a good example for other people to unite, to stand upon their interests and successfully solve their problems.