Report from RUSSIA
Report from RUSSIA
A lot has changed during 20 years of our active work in the sphere of rehabilitation of ostomy patients in Russia and the last 3 years are no exception.
We would like to tell you of the most significant and spectacular events.
The Moscow ostomy patients’ association is the base of the Coordination Council of regional associations of ostomy patients of Russia and our activities cover not only Moscow but the whole Russia as well.
The Coordination Council of Russian regional associations of ostomy patients consists of 11 regional public organizations of ostomy patients and is a member of the EOA.
In 2011 ASTOM worked out a special program “Healthy diet – a way for healthy life”. The program was supported by the Moscow Healthcare department, Coloplast and Nestle. Within the framework of the program numerous educational seminars and meeting with dieticians, stoma care specialists and specialists of Coloplast and Nestle were organized.
These events took place in Moscow museums of healthy diets and cooking for example in the Museum of the art of cookery. These events started with excursions that were followed with meetings-seminars.
A book of dietary recommendations for ostomy patients “Tasty ideas for ostomy patients” by Dr. Vadim Pilipenko from the Diet Institute of the Academy of Medical Sciences and Darya Nazarova Vice-President of ASTOM was published. It is a collection of recipes with colourful illustrations and calorage.
Numerous seminars and trainings on ostomy and continence care for patients, their relatives and home care specialists were held at Moscow hospitals and social protections centres. Continence care is a new field of our activities.
The World Ostomy Day was celebrated in October 2012 in Moscow at the All-Russian conference of ostomy patients. Ostomy patients from Russia and Ukraine as well as specialists from medical institutions, healthcare officials and social protection specialists, representatives of world leading producers of ostomy, continence care, and hygiene and nutrition products took part in the conference. The participants had an opportunity to get acquainted with the latest developments in the sphere of rehabilitation of ostomy patients and with innovative products at the exhibition of the conference. The WOD’s celebration was closed with a concert. Report from the conference is placed on the ASTOM web-site (link: http://astom.ru/ru/videomaterialy).
Our internet resource ASTOM.RU has been functioning since 2009, and it was updated in 2011.
The first Russian internet portal for people with ostomies is very popular not only among ostomy patients but among IC and CC patients as well. The portal accommodates 14 interactive consultative resources, among them Stoma-room and Inco-room.
Interactive consultations are provided by medical specialists, social protection experts, specialists of producing companies. Any question to a specialist can be supplied with a patient’s case record and photos.
All essential stoma care materials and e-version of the “ASTOM. Guide to active life” magazine can be found on the portal as well (link: http://www.astom.ru/ru/zhurnal-%E2%80%9Castom%E2%80%9D).
Forum of patients with ostomies and incontinence problems is a popular source of interactive communication of patients and their relatives. Public sector of the forum is devoted to information exchange of patients’ public organizations. Over 2000 patients are registered at the Forum.
The above mentioned magazine “ASTOM. Guide to active life” (circulation of 1 500 pcs) is published 4 times a year and distributed throughout Russia free of charge.
ASTOM’s President and Chairman of the Coordination Council of public associations participated in the 3rdCongress of Russian coloproctologists in Belgorod in 2011, in the 4thGlobal Incontinence Forum in Copenhagen in 2012, in numerous regional conferences of public organizations of ostomy patients in 2013.
In 2012-13 ASTOM helped to found new regional public organizations of ostomy patients in Tambov and Astrakhan, active groups of patients were formed in Novorossisk and Samara.
ASTOM lobbied the Ministry of Healthcare of Astrakhan for 2 stoma care rooms that were officially established in 2 main hospitals. President of ASTOM and Chairman of the Coordination Council of Russian regional associations of ostomy patients Viacheslav Sukhanov participating in regional events, conferences of the rehabilitation solutions to the problems of ostomy patients in the cities of Astrakhan, Tambov, Vologda.
V. Sukhanov and the vice-president of ASTOM Darya Nazarova were at a friendly meeting of heads of public organizations of the ostomy patients from Russia, Serbia, Croatia, Slovenia, Bosnia and Herzegovina (Republika Srpska), which took place in Belgrad on April 23-26, 2013. This meeting also was dated for celebration to the 11 anniversary of active work of the Serbian association "Ilko".
ASTOM and Coordination Council maintain active cooperation with public organizations of ostomy patients of Ukraine (Odessa-ILCO) and Uzbekistan (UZSTOM). In January 2014, our organization ASTOM sent humanitarian aid in the form of funds for stoma care for ostomy patients Uzbek Association UZSTOM.
Participation of the ASTOM’s president and Chairman of the Coordination Council Viacheslav Sukhanov in different Committees and Councils of healthcare and social protection institutions enables to solve many problems related to rehabilitations of patients with ostomies and incontinence problems, reimbursement issues and helps to protect patients’ rights. The list of reimbursed stoma and continence care products has been enlarged. In 2012 Crohn’s disease and ulcerative colitis were included into the list of ‘rare diseases” and that will allow patients to be supplied with expensive medicines free of charge.
In December 2013 a book of the most frequently asked questions from Stoma-room and Inco-room of ASTOM.RU “100 questions - 100 answers” was published with the assistance of medical professionals and specialists of producers.
Information of the public is one of our main activities. Publishing of advisory information, publications and interviews in mass media, active scientific work provides support for patients and their relatives and advices on all related matters and policies. Vyacheslav Sukhanov is author of more than 60 scientific publications in the field of social rehabilitation of ostomy patients.
In April 2013 ASTOM celebrated its 20thanniversary. Report from the conference is placed on the EOA web-site (link: http://www.ostomyeurope.org/). And link: http://www.astom.ru/ru/20-let-kompanii-astom
With best wishes,
President of Moscow ostomy organization,
Chairman of the Coordination Council of Russian regional associations of ostomy patients
V. Sukhanov