*Role of SVSNevro Public Union Movement of Physicians and Patients Against Serious Nervous System Disorders and Epilepsy in Development of NeurologySavinov Chairman of the Board of SVSNevro Public Union (Movement of Physicians and Patients Against Serious Brain Disorders and Epilepsy - International Bureau for Epilepsy in Kazakhstan. (www.svsnevro.kz), Director of V.M. Savinov SVS Laboratory for Epilepsy, Seizure Disorders and Family Monitoring (www.svs.kz), Director of the Project "Postgraduate Education Division for Neurophysiology and Epileptology(www.eeg.kz), Member of Kazakhstan Association of Children's Neurologists, Member of the Board of Kazakhstan Association of Neurophysiologists and Epileptologists (www.nsi.kz), Chief Editor of Kazakhstan Medical Internet Portal SVS Medical (www.svsmedical.kz ).

Nothing is so valuable as information.If a man suffering from thirst is not aware that the river is behind the bushes he will die a stone's throw away from water!!! Confucius.*

This is not a physician who treats, but a patient who is treated!In developing medicine we place much emphasis on pharmacology, surgery, therapy, diagnostic equipment and other referrals.And almost always we miss the most important thing, which are a reaction and an attitude of a patient himself! As well as the relation between a patient and a physician.Not less are important things of common of a doctor with a doctor between whom a patient moves! *

But even we reflect on these concepts, we cannot do anything as there was no tool to realize our wishes. My presentation aims to share experience as how to use mechanisms that enable more effective involving patient in a treatment process and to provide physicians with the opportunity to communicate between themselves and with patients.*

So, such a mechanism for 10 years on end is SVS Nevro Public Union Movement of Physicians and Patients Against Serious Nervous System Disorders and Epilepsy International Bureau for Epilepsy in Kazakhstan.*

Information recedes in memory of a patient*SVS Nevro Public Union interviewed 1000 patients after an initial consultation by a physician in order to determine a content of information learnt.We identified that immediately upon the consultation a patient cannot tell 50% of information. In 7 days even the very attentive patient remembers only 20% of data. In a half a year this figure drops to 15%!!!And that is upon a consultation that lasts an HOUR!!!

An objective need to send patients to Public Union.However, a physician in a polyclinic or in any other patient care institution has not such much time!This is precisely why cooperation with commissioners of our Public Union yields tremendous benefit!!They help patients adopt information presented by a physician much better! They also assist in social adaptation and caution against doubtful behavior and folk medicine prescriptions. *

Psychological, legal, financial and organizational aids provided by SVS Nevro are definite arguments for physicians to work with patients to join SVS Nevro Public Union Movement of Physicians and Patients Against Serious Nervous System Disorders and Epilepsy. *

*SVS Nevro Public Union Movement of Physicians and Patients Against Epilepsy.Based on a need to register and unite patients, physicians and others who bear relationship to neurology and epileptology, and to disseminate true information on epilepsy diagnostics and treatment, in 2003 an organization was formed to affiliate patients and physicians. It is SVS Nevro Public Union Movement of Physicians and Patients Against Serious Nervous System Disorders and Epilepsy.

Primary objectives of SVS Nevro Movement of Physicians and Patients Against Epilepsy.SVS Nevro Public Union carries out its tactical objective primarily aimed to protect rights of patients and physicians admitted to the Union that largely works according to the principle of trade unions. Besides, subject to a purpose of a division (fraction) actions are initiated to meet functional objectives of the given business entity. *

SVS Nevro Movement of Physicians and Patients Against Epilepsy.Currently, SVS Nevro Public Union has over 7 thousand registered members, both patients and physicians. Practically, in every city of Kazakhstan there are a Public Union branch and a Commissioner who represents SVS Nevro.*

*Supervisory Board Management Board Fraction of Medical Officers (www.svsnevro.kz) Fraction of Patients (www.svsnevro.kz)V.M. Savinov SVS Laboratory for Epilepsy, Seizure Disorders Study (www.svs.kz) Information Service of Kazakhstan Medical Portal, "SVS Medical" (www.svsmedical.kz) Postgraduate Education Faculty for Neurophysiology and Epileptology (www.eeg.kz) Epileptology School for Patients and Their Relatives. Clinics and associations in Shymkent, Karaganda, Astana, Bishkek, Aktau, Kostanai, etc.Hi Tech Global Technical Support Structure (www.hitech.kz)Association of neurophysiologists and epileptologists of Kazakhstan www.nsi.kz

Extended consultationWe have organized the Extended Republican consultation to consult patients and read lectures for physicians and patients once a month with the use of Internet TV-bridges. The TV-bridge covers cities and towns of Kazakhstan. To it also cities in Kyrgyzstan and Uzbekistan have a connection.*

*TV-Medicine international consultations.On top of that, once a month we conduct Internet online TV-Medicine consultations with leading neurologists of the world.

Medical Internet Portal - SVS Medical (www.svsmedical.kz ) Medical Internet Portal - SVS Medical (www.svsmedical.kz), the largest in the CIS, was opened in 2004 in Kazakhstan and works until now. It contains tens of web sites dedicated to epileptology, neurology and neurophysiology. *

Promotion of epileptology informationSVS Nevro Public Union together with the Sanofi Aventis Representative Office has issued a brochure for patients which contains a lot of information about how to go with epilepsy.We distribute more than 8,000 copies in Kazakh and Russian among patients and physicians. *Tips and recommendations for epilepsy patients.

SVS Nevro Library. We have organized and continue supplementing a special library on neurology and epileptology.For the day, it counts over 1300 monographs, hundreds of articles and resources.30% of printed and electronic works in English.Members of the Public Union use the library free of charge. Not-locals can order a required article, and technical division will prepare it in the electronic forma.*

Telephone hot lines: +7 701 912 52 49 and +7 701 725 52 03Public Union has opened the hot line for epilepsy patients and physicians who treat them.24 hours a day we are willing to give answers to any question, regarding compatibility of preparations to addresses of clinics and physicians.*

It is impossible to cover all things over a short period of allocated time.On a continuous basis we hold conferences, master classes and other campaigns, whether independently or along with key chairs and engaging foreign specialists.Some more events have been and are conducted to support patients and develop epileptology as a whole.

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SVS Nevro a Member of the International Bureau for Epilepsy (IBE)In 2012, SVS Public Union Movement of Physicians and Patients Against Serious Nervous System Disorders and Epilepsy filed an application to join the International Bureau for Epilepsy.Upon a detailed inspection, our SVS Nevro Union has become a full member of the IBE.*

*Republic of Kazakhstan, Almaty, Tulebayev Street, 38TelephoneFax

IBE International Bureau for EpilepsyThe International Bureau for Epilepsy was established in 1961.At present, it includes 96 countries, 126 members.The International Bureau comprises of patients, epileptology physicians, neurophysiologists, average citizens who care of destinies of patients and epileptology as a whole.*

Main goals and objectives of the IBEGoals of the IBE:1. The primary goal of the International Bureau for Epilepsy is to improve quality of epilepsy people and those who care of them.2. Propagate the epilepsy facts, the IBE vision and its mission, and also to promote studies concerning epilepsy. 4. Enhance understanding and knowledge of epilepsy, how to meet needs of epilepsy people and those who care of them.5. Ensure the international and global platform to present epilepsy with national, international organizations and the government.

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Methods to achieve goals:6. Promote epilepsy education and learning.7. Stage epilepsy international and regional conferences, congresses, meetings and seminars.8. Raise a level of epilepsy understanding and knowledge among relevant international agencies.9. Cooperate with the International League Against Epilepsy and other similar organizations.10. Undertake any other legal activity that according to the International Executive Committee will contribute to improving quality of life of epilepsy persons and those who care of them.

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Commissioners, the SVS Nevro representatives, work in regions to achieve these and many other goals Virtually, every region is represented by the commissioners of SVS Nevro Public Union.Commissioner is a voluntary RoK citizen or a citizen of any other country residing in the RoK who cooperates with the Union o a gratis basis. Commissioner actively represents the Union with all state public and private organizations and mass media.Commissioner is obligated:To accept an application of a patient, physician or any other member of the Union, and if needed, to help them draw a text of the application and promptly communicate the application to the central office in Almaty.

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Code of the Commissioner SVS CommissionerActively disseminate information on activities of the Union, while using every possible means.Read popular science lectures on activities of the Union with public organizations, at enterprises and educational institutions.Be an assistant of physicians on spots and be a focal point to inform patients as how to control a disease and adapt socially.*

Work of SVS Nevro IBE.kz with mass media and popularize epileptology over the period elapsed.

114 articles clarifying epileptology prepared and published in newspapers and journals. 21 programs prepared and broadcasted at various channels of Kazakhstan, and also implemented a TV-Project of 7 casts What epilepsy is.Our commissioners and physicians arranged over 120 meetings and round tables with a total coverage of up to 30,000 listeners.

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Elimination of illiteracy is a first step to crackdown on havoc - V.I. Lenin.To enhance literacy of the community, we read popular science lectures and arrange "elimination of illiteracy" courses for physicians of various trades (over 5 years covered 28 cities and towns) and also for a wide range of citizens of Kazakhstan (over 5 years 42 campaigns in schools, at enterprises and in higher educational institutions).

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Members of the fraction of always know they are not alone!!Even healthy people are not easy in our world! And the physically challenged least of all! Therefore, a patient seeks any support! And our Public Union endeavors to support them in every possible way!8 concerts and 12 charity events organized to raise funds to treat patients abroad and provide financial aid.

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Epilepsy should not make children unhappy! Our children are extremely gifted!!! And Public Union is supportive of them doing its best and organizing exhibitions and competitions! In the course of 8 years, in total we conducted 16 exhibitions and charity bazars.*

*Patient is not socially adapted Unfortunately, we have no legislative base that defines rights of patients. And as a result epilepsy patients are not socially adapted. There not special centers for temporary stay, special kindergartens and schools, where patients suffering from seizures are not allowed to usual institutions!!Therefore we started preparing the project "Organization of a development center for epilepsy diagnosed children.

SVS Nevro conducted more than 40 international charity consultations and congresses. Over 3,000 patients have been consulted!!*

The chair and faculty of functional diagnostics, neurophysiology and epileptology.5 years ago the Faculty of Post-Graduate Neurophysiology and Epileptology Education was created. The faculty is involved in base and extensive teaching to the EEG, EMG and video EEG monitoring with attraction of foreign specialists. 162 physicians underwent trainings in the past 5 years. This year we opened one chair, and a government order for 45 seats has already been fulfilled.

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Over 8 years, the Public Union addressed 4,500 applications from patients who got legal, psychological and organizational assistance to improve quality of their life.Over 10 years, about 2,700,000 US Dollars were allocated to develop, support and outreach epileptology. The share of financial assistance by pharmaceutical companies amount to just 4%. That was, primarily, the aid from enterprises and private investors.

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More than 435 patients and their parents have been placed in a job.Public Union facilitated an opening of a medicine monitoring laboratory to determine a concentration of epilepsy preparations in all cities of Kazakhstan.

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V.M.Savinov SVS Laboratory for Study of Epilepsy and Convulsive States.www.svs.kzIn 2003, the V.M. Savinov full-profile clinic to study epilepsy and convulsions and for family monitoring, the first in Kazakhstan, was formed. From April 2004 to April 2012, the SVS Laboratory conducted 21,000 video EEG monitorings!!! As well as the Holte EEG and stress EEG monitorings.

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Many follow us Based on the huge experience, we provided informational, technical and financial aids to open nine rooms and centers of video EEG monitorings. The staff of such rooms and centers were trained at our post-graduate neurophysiology and epileptology faculty.

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Development of Surgery Epileptology in Kazakhstan.This year of 2013, the National Neurosurgery Center with the informational and organizational support of the V.M. Savinov Laboratory and SVS Nevro Public Union staged a master class in pre-surgical diagnostics of epilepsy patients. Within 7 days the specialists from Russia and Kazakhstan practiced logistics of selection for urgent epilepsy treatment*

SVS Nevro is a right-hand and reliable assistant to physicians!The resources available enable our member to keep abreast of the events, communicate with each other and key neurology specialists.All members of SVS Nevro also get legal and social support!That is why we offer doctor to join SVS Nevro Movement of Physicians and Patients Against Serious Brain Disorders and Epilepsy, the International Bureau for Epilepsy in Kazakhstan, and advocate patients with neurological and chronic pathologies for joining it.*

Cherished memory of the friends and teachers!!

We hold the memory of those who have passed away, and effort to transfer their knowledge to those who follow us.*

Some of our employees with Professor Karlov V.A. and Professor Karlova-Mikhailovskaya I would like to remind once again that our country succeeded to achieve very much! And the great merit goes to the personnel from the V.M.Savinov SVS Laboratory for Study of Epilepsy and SVS Nevro Public Union Movement of Physicians and Patients against Epilepsy! I thank you them very much! I am proud to have my honor to work with these professionals!!

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SVS Nevro movement of Physicians and Patients Against Serious Brain Disorders and EpilepsyThank you for your attention!!!Number of my personal phone: + 7 701 717 0003e-mail: director@svsmedical.kzAvailable to respond to any question!We are always willing to cooperate.Public Union welcomes new members. *

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