The report about the helding the Interregional Conference of the Authorized Public Experts (APEs) of the AROMS of the Southern and North-Caucasian Federal Districts (SFD and NCFD).

“The Work of the Institution of the Authorized Public Experts in 2012,” the 5-7th of June 22012 in Krasnodar.

The first Interregional Conference of the AROMS APEs of the South of Russia took place on the 5-7th of June in the hotel “Moskva” in Krasnodar. In this Conference there participated the APEs from the Rostov Region – Sugonyayeva A.V., the Volgograd Region – Yedigarova G.A., the Region of Kalmykia and the Astrahan Region – Vasilchenko E.A., the Territory of Stavropol – Petrova N.V., the representative of the Initiative Group of Patients from the Astrahan Region – Svistunova Z.P., the APE assistants: Chernov I.S., Popova U.O., Vasilchenko O.A.

And there were the representatives of the AROMS Directorate: the Director of the AROMS APE Service - Shishlyannikov F.V., the IT-Director - Ipatov O.Y., the APE at the SFD and NCFD – Kichigina N.F.; the lawyer of the AROMS – Dohnova E.D.; and our host was the APE of the Krasnodar Territory and the Adygeya Region – Kodgaeva Irina Leonidovna.

Krasnodar was not occasionally chosen as the venue of the first Interregional Conference of the APE of the AROMS and the NCO representatives PwMS in the South of Russia. It suits very well as the example for the solution of two important tasks, facing the NCO now:

• The arrangement and the activity in the Public Council (PC) at the Ministry of the Subjects of the Russian Federation (RF);
• The organization of the NCO work coalitions for the activity coordination on patients’ rights protection in the Subjects of the RF.

Our delegation was invited to the Public Council (PC) at the Department of the Healthcare Service of the Krasnodar Territory, where, besides the general questions of the agenda, our experts were interested with the question: what for, by whom and how the Public Council was organized. The APEs from several regions reported that the ministries of the Healthcare Service don’t understand, what the PC is for, if the work with the concrete NCO in any case is being done. The Deputy Chief of the Healthcare Service Department of the Krasnodar Territory - Gubrieva, Nadeghda Aleksandrovna, answered our question “What for” this way. She said that patients always have complaints, often equal in different cases, and it is needed to work with them a lot. That’s why it is better to concentrate the NCO, whose members can formulate their requests to the PC where it is possible at the beginning, to see whether the complaints are of the systemic character and it is necessary to make some systemic decisions or the complaint is the individual case, which can be solved quickly.

The questions “Who is the initiator” and “Who was the organizer of the PC” received answers from Snaksaryov Pavel Borisovich, the Chairman of the Territorial Public Movement for the Defense of Rights and Interests of Disabled People “Sodrughestvo” (the commonwealth), the secretary of the PC at the ДЗКК. He said that he himself before the Department was the initiator of the creation of the PC and when received the firm consent he gathered the base of NCOs of patients and disabled people and achieved the beginning of the work of the PC.

The documents on the creation and the contents of the PC can be found at

http://www.dzkk.ru .

The information about the meetng at the ДЗ КК is situated at

http://www.kubanzdrav.ru .

Then there was the meeting with pharmaceutical companies and the Main Neurologist of the Krasnodar Territory, Tsukurova Larisa Alexandrovna, with the topic “The organization of the quality pharmaceutical provision. The social responsibility of the pharmaceutical companies. The cooperation with the AROMS” where many questions were faced about the interaction between the AROMS and the pharmcompanies in the patronage and the organization of training schools and several problems of pharmaceutical provision for PwMS.

The second day was devoted to the Southern Federal District (SFD) and the NCFD experts’ answers. The problems of the regions can be seen in the experts’ presentations:

• the Krasnoar Territory and the Adygea Republic – Kodgaeve Irina Leonidovna:Краснодарский край,республика Адыгея;
• the Volgograd Region – Yedigarova Galina Alexeevna:Волгоградская область;
• the Rostov Region – Sugonyaeva Alla Vladimirovna:Ростовская область;
• the Republic of Kalmykia and the Region of Astrahan – Vasilchenko Elena Anatolyevna:Республика Калмыкия andАстраханская область;
• the Stavroppol Territory – Petrova Natalya Vlaadimirovna:Ставропольский край.

The survey of reports has shown that with the certain movement forward during the period of experts’ activity in the South (the provision with MS Modifying Drugs, the decrease of the number or the disappearance of waiting lists, free-of-charge MRI diagnostics, MS Centres foundation, etc.) in spite of all there is a lot of problems in all the regions. The problems must be solved and then it is necessary to raise the quality of the given medical and social help, the problems with the quickly modification of bioanalogues, the lack of means of the regional budget for the address purchase of drugs for the treatment of MS, hospitalization in relapses and the availability of drugs in hospitals, the rehabilitation of patients with MS, employment, life without barriers, the appearing of the professional system of psychological help, etc.

The discussion of best practice of the APEs of the SFD was one of the most interesting and debatable themes.

Kodgaeva Irina Leonidovna told about the work of the PC in the Krasnodar Territory.

Galina Alexeevna Yedigaova, the Chairwoman of the PC in the Volgograd Region since 2010 and the active member of the council, told how to form the Public Council in the Subject of Federation and showed the example of preparation to the next session of the PC.

The theses of her statement are presented in the following applications:

The document: “Methodological recommendations for the organization of the work of the Public Council of patients’ organizations”: "Методические рекомендации по организации  работы общественного совета пациентских организаций";

The document: “The perfecting of the quality and the availability of the out-patient and polyclinic help in the framework of the National Project “Zdorovye” (the Health) and the program of the modernization of the healthcare service of the Volgograd Region”: "Совершенствование качества и доступности амбулаторно-поликлинической помощи в рамках нацпроекта «Здоровье» и программы модернизации здравоохранения Волгоградской области.".

The big discussion was arisen by the AROMS lawyer, Dohnova Elena Dmitrievna, report with the theme “The order of personal data review, its defense and the responsibility for the law Infringement during the data processing.” This theme is the actual one both for the Experts’ Service and for the patronage service of the AROMS.

The report presentation can be seen here: здесь.

Then the Director of the APE Service, Shishlyannikov F.V., summarized the work of experts of the South and has put the new tasks for the next period.

The third day of the work was devoted to the discussion of the conception of the creation of APE coalitions in regions (video) - (видео). There were the representatives of different NCOs working together in different areas:

• Snaksaryov Pavel Borisovich – the Chairman of the Krasnodar Territorial Social Movement on the Protection of the Rights and Interests of Disabled People “Sodrughestvo” (the commonwealth);
• Tkachenko Ekaterina – the Chairwoman of the Krasnodar Regional Public Organization “The help for patients with mucoviscidosis”;
• Lifosherstova Svetlana – the regional representative in the Krasnodar Territory of the All-Russia Public Organization of patients with mucoviscidosis;
• Lihovitskaya Irina - the representative of the Krasnodar Society of Haemophilia;
• Pogoryelova Tatyana – the Chairwoman of the patients with mucoviscidosis in Adygeya.

The employee of the service “The Centre of the Social Help” of the Samara city was Svetlana Sergeyeva. The work appeared to be fruitful: there were discussed the difficulties of the building of the coalition and there was decided, in spite of all, to support the close relationship and to decide together the difficult questions not only of the subjects but also to go to the interregional level.

In general, the Conference was very fruitful and without any doubt it must influence the quality of the work of experts in future. We liked Krasnodar for its goodwill and hospitality!

Thanks to everybody who took part in the preparation of the Conference: the representatives of the Department of the Healthcare Service of the Krasnodar Territory, the Main Neurologist Tsukurova L.A., to all pharmcompanies who helped to prepare the action, our partner NCOs.

Kichigina N.F.

The Vice-President of the AROMS at the SFD.

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translated by Anna Bogolyubova, the ARMSS' Information-Analitical Services employee.

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translated by Anna Bogolyubova, the ARMSS' Information-Analitical Services employee.