Antiepilepsy Service in Kazakhstan and Role of "SVSNevro" Public Union – Movement of Physicians

and Patients Against Epilepsy.

• Savinov Sergey Viktorovich – Chairman of the Board of "SVSNevro" Public Union (Movement of Physicians and Patients Against Epilepsy 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).

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Eight years ago, before the V.M. Savinov SVS Clinics was established, epileptology practically has not been

developed in the country• Over recent years Kazakhstan has made great

advances in controlling epilepsy. As is known, 0.5 to 2% of the populations suffer under this disease in various countries. So, if to take average statistics, in our country there are at least 160,000 patients with epilepsy.

• • Although, according to the Ministry of Public Health

of Kazakhstan this figure is much lower, just 31,000!

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Epileptology in Kazakhstan

• As of today, thanks to methodical efforts of many structures, including SVSNevro" Public Union, V.M. Savinov SVS Laboratory for Epilepsy and Seizure Disorders, Departments of Children's and Adult Neurology under Almaty State Medical Refresher Institute, Neurology Departments of Medical Universities and Institutes of the Republic of Kazakhstan, Kazakhstan Association of Neurophysiologists and Epileptologists as well as Kazakhstan Neurosurgeons Association have practically completed the structuring of the antiepileptic service in compliance with the ILAE requirements.

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Stage-by-stage approach to treat patients with epilepsy

• It means that there is the stage-by-stage approach comprising of four basic stages.• • Also, Public Unions and Associations

supporting both patients and physicians

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Stage 1 Primary general medical selection

Stage 2Special neurology-related selection and examination

protocol preparation

Dedicated imaging rooms and centers provided with diagnostic equipment

Stage 3Special epileptology-

related treatment

Stage 4Special pre-

and surgical epileptology-related treatment

Stages of epileptology treatment

• First stage involves a primary identification of a disease to be performed by district neurologists who have undertaken refresher courses organized by Departments of Children's and Adult Neurology and pediatricians, therapists, ambulance physicians and other medical officers.

• • At first stage, patients suspected of paroxysmal states

and epilepsy are identified. Persons identified so pass to second stage.

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Stages of epileptology treatment

• Second stage is represented by special assistance provided by both national and private institutions.

• • The objective at this stage is to complete a patient's

examination protocol, to checkup using the high-tech devices, to make a primary diagnosis and to put on treatment. All major towns and regional centers have departments of children's neurology provided with bed spaces for patients with seizures and epilepsy, which make up on average up to 10% of the total neurology profile capacity.

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Second stage of epileptology treatment

• Besides, the Republican Aksai Clinic exists to treat sufferers coming from all regions of the Republic. The video EEG-monitoring system is slated for 2012 to be installed there.

• All in-patient hospitals, beds are equipped with EEG devices to carry out routine electroencephalography.

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Equipment Status

• The video EEG-monitoring stations operate in the psychoneurology ward at the Mother and Child Center in Astana, in children's municipal hospital № 2 in Almaty and the Kostanai railway hospital.

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Equipment Status

• Also, the video EEG-monitoring facilities have already been installed in clinics and policlinics of Almaty, Astana, Karaganda, Taldykurgan, Talgar, Kaskelen, Petropavlovsk, Issyk, Kapchagai and other places, where some stations function without any allocated hospital stock. During next year the same systems will be mounted in Aktau, Aktobe, Taraz and Pavlodar. Almost all these cities are provided with MRT machines, and Astana has the Positron Emission Apparatus as well.

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Stage Three. Specialized Medical Care• Stage Three is a specialized expert epileptology-related

care. The objective of this stage is to specify diagnoses made at first two stages, differential diagnostics of difficult and disputable cases, concrete types of examinations (transport, stress and the like). Moreover, objectives of stage-three clinics include the determination of pharmacoresistent cases and preparation of patients for a fourth, surgical stage. I.e. Stage Three is in-deep specialized care to be provided by highly-proficient personnel represented by epileptologists, while using sophisticated devices.

•

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Community of private and state-run epileptology structures

• For instance, in Almaty (V.M. Savinov SVS Clinic), Karaganda (Hippocrates Clinic), Shymkent (Sunkar Clinic), Astana and Kokshetau (Clinic headed by Doctor Elubayeva A.M.) function complete-profile private epileptology centers fitted with video EEG monitors, continuous Holter monitoring unit, MRT and KT equipment, and devices to define a concentration of drugs in blood.

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Stage Three • In Astana, at the Mother and Child Center also

equipped with the video EEG monitor, Dsc Mrs. Dzhaksybayeva A.H. has started treating children with epileptic encephalopathy.

• • Besides, in a number of cities separate video

EEG monitoring offices exist: in Almaty - 3, Petropavlovsk - 1, Astana - 1. In 2012, 5 private EEG monitoring offices are scheduled to be installed in various cities.

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Therapeutic Epileptology Development

• Construction and equipping of two epileptology departments started in Almaty. As a sample we introduce a clinic, which has become a founder of the systematic and scientific approach to epileptology in Kazakhstan. To-date, nearly all day-and-night clinics and centers apply the SVS Clinic experience.

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V.M. Savinov SVS Laboratory of Epilepsy and Seizure Disorders (Almaty, Tulebayev Street, 38,

www.svs.kz).

• The SVS Laboratory performed 21,000 video EEG monitoring sessions over April 2004 to April 2012! As well as Holter EEG and stress EEG monitoring.

• • Main units and procurement.

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Video - EEG and Holter EEG Monitoring Department.

• Goals and Objectives:• • To specify diagnoses made at Stage

Two, • Diagnostics of problematic patients,• To ascertain "Pharmacoresistent

Epilepsy" diagnosis,• To correct treatment of patients after

Stage Two,• To warrant treatment and to develop

protocols• To manage patients from Stage Four.

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Video - EEG and Holter EEG Monitoring Department of SVS Clinic

• Expert examination as to look into the opportunity to cancel treatment.

• Continuous, up to one month, EEG monitoring; preparation of patients for surgery treatment.

• Equipment: Four wards with video EEG monitoring and polysomnography.

• Two wards of ambulance – Holter EEG monitoring c/w video control.

• Examinations are carried out by physicians majoring in neurology, epileptology and neurophysiology only.

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Stress EEG – ECG Monitoring Department.

• Areas:• Stress loads for differential diagnostics

of syncopal states and epilepsy paroxysms.

• Transport and situation EEG expertise.• Identification of tolerance to loads

and sensibility to the concentration of antiepileptic drugs in blood during stresses and loads.

• Performance of loading tests to identify latent epileptic activity before canceling anticonvulsant therapy.

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Stress EEG – ECG Monitoring Departmen.

• Equipment: Bicycle ergometry apparatuses in combination with video EEG monitoring and ambulance – Holter EEG monitoring devices.

• • Loading tests are performed

by two teams: one of neurology epileptologists, second of cardiologist and therapists.

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Drug Monitoring• In the course 7 years of the work the laboratory involved

in determination of a drug (concentration) level in blood

has carried out over 40,000 studies! 20 articles have been written, and 1 dissertation has been defended.

• Laboratory determines:• Level of anticonvulsant drugs• Level of cardiac glycoside• Level of psychotropic drugs and anti-depressants• In addition, the laboratory runs general clinic and

immunology tests

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Department of Coma Monitoring and Brain Death Identification

• Department of coma monitoring and brain terminal condition identification

• • From 2008 onwards, the SVS Laboratory is engaged

in neurophysiology monitoring of patients in terminal conditions and comas.

• In 2011, after Kazakhstan has ratified the Transplantlogy Law, the SVS Laboratory joined the Republican Brain Death Expert Commission working at the Syzganov Surgery Institute.

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Follow-Up Study Department for children afflicted by CNS in neonatal period

• As epilepsy early identification is a prerequisite to rehabilitate patients with epilepsy, in 2009 a follow-up study department for children afflicted by CNS in neonatal period was set up.

• • Along with the SVS Laboratory, this department

comprises of Pediatry Institute (Almaty) and Almaty Municipal Perinatal Center.

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Follow-Up Study Department for Children Afflicted by CNS in Neonatal Period

• The department carries out neuro-physiology and neuro-visualization examinations of children afflicted by CNS in a neonatal period, and when paroxysmal states or EEG changes are identified it differentiates them and patronage further.

• • This department pursues the differentiated

approach to patients during treatment, while not applying drugs and methods contraindicated in convulsions and epilepsy.

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Follow-Up Study Department for Children Afflicted by CNS in Neonatal Period

• The department is headed by Akchurina Yana Evgenyevna, leading specialist of SVS Laboratory (picture above: with Ponyatishenyi A.E., Assistant Professor from St. Petersburg)

• • And curated by Degtyareva

M.G., Doctor of Medical Sciences, Professor of Neonatology Chair under Russia State Medical University (Russia, Moscow) (picture below)

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Appreciation by Professor Zenkov L.R.

• In its anniversary year of 2009 the SVS Laboratory invited Mr. Zenkov Leonid Rostislavovich, who is one of epileptology and neurophysiology patriarchs in the CIS and Europe, to assess activity of the personnel and the laboratory as a whole. Mr. Zenkov L.P. during his stay with our clinic left two records. First one in his book reads "To Dear Sergey Viktorovich, the winning follower from the conquered tutor with deepest respect from the author! 25.05.09", and second in the official expert review log is "To highly-regarded Savinov Sergey Viktorovich and all his fellows with grateful acknowledgment of making my dream – one of best clinical neurophysiology and epileptology laboratories - come true. My admirations touched with envy and congratulations. 25.05.09. Zenkov L.P."

We Cherish the Memory of the Master and Great Scientist!

• We regret to say that on 26 February 2012 the great scientist and doer Zenkov Leonid Rostislavovich passed away. But his comments will always call us for new victories!

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Stage Four. Surgical Epileptology

• On account of works of Akshulakov Serik Kuandykovich, the outstanding surgeon and organizer, since 2008 surgical epileptology develops rapidly in Kazakhstan. The state-of-the-art Neurosurgery Institute in Astana opened a surgical epileptology department, the fourth stage to treat epilepsy!

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Stage Four. Surgical Epileptology

• Over the past period the Neurosurgery Institute has purchased equipment to perform continuous EEG monitoring with both scalp electrodes and intracranial application of electrodes to bare brain.

• Staff of the surgical epileptology and neurophysiology department was trained at clinics of Russia, Germany, the USA and Israel. Prominent neurosurgery epileptologists from Russia, Germany and Israel held international master classes for them.

• • and 10 operations to remove the epileptic focus

were success. 28

"SVS Nevro" Public Union – Movement of Physicians and Patients Against Epilepsy.

www.svsnevro.kz

• As there is a need to register and unify patients, and to disseminate authentic information on epilepsy diagnostics and treatment, we created an organization uniting patients and physicians, which is the "SVS Nevro" Public Union. Today, it numbers over 7 thousand members who are patients and physicians. The Public Union has its representations practically in each town of Kazakhstan.

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Structure of "SVSNevro" Public Union BOARD

Fraction of Medical Officerswww.svsnevro.kz

Kazakhstan Association of Neurophysiology Epileptologistswww.nsi.kz

Fraction of Patients www.svsnevro.kz

V.M. Savinov SVS Laboratory for Epilepsy and Seizure Disorders www.svs.kz

Technical Support ServiceHi – Tech Globalwww.hitech.kz

Information Service of Kazakhstan Medical Portal "SVS Medical"www. svsmedical.kz

Postgraduate Education Division for Neurophysiology and Epileptologywww.eeg.kz

Clinics and unions in Shymkent, Karaganda, Astana, Bishkek, Aktau, Kostanai, etc.

Epileptology School for of Patients and Their Relatives

Kazakhstan Association of Neurophysiology Epileptologists

• Due to tremendous upgrowth of neurophysiology and epileptology under management by SVSNevro Public Union, Kazakhstan Association of Neurophysiology Epileptologists was formed. The goal of this organization is to prevent chaotic and non-professional development of neurophysiology and epileptology in Kazakhstan. The Association comprehensively integrates with international associations of neurophysiologists and epileptologists.

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Expert Board of Kazakhstan Association of Neurophysiology Epileptologists

• The Expert Board has become one of structures of the Association from the moment of its creation. The Board members are both local specialists and known foreign professors and assistant professors.

• • When any disputable moments arise we go to

the Board to seek advices to resolve situations.

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Expert Board of Kazakhstan Association of Neurophysiology Epileptologists

• This year the Expert Board was joined by leading psychiatrists, professors from Almaty State Medical Refresher Institute, Asfendiyarov University, Astana Medical Institution and key specialists from all regions. The Expert Board is headed by Elubayeva Altynai Mukashevna, chief freelance epileptologist of Kazakhstan.

• • The Association has its own web-site www.nsi.kz, which

we use to communicate and coordinate our activities throughout the country and abroad.

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Extended Councils • One of innovative methodologies

applied to treat patients and retrain physicians are extended councils introduced in 2009 to support the work of the Public Union.

• • The extended republican council is

held once a month via Internet tele-bridges and covers cities and towns of Kazakhstan. Councils are designed to consider complex and disputable cases that are used by the Expert Board for its day-to-day activity.

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Tele-Medicine International Consultations.

• Besides, once a month we conduct Global Online Tele-Medicine Internet Consultations with top neurologists. During such consultations also our members who stay in other cities and even nations join them, and thus sometimes the consultations overflow into master-classes and mini-seminars.

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Online Consultation with Professor Mukhin K.Y. (Moscow)

• Owing to such consultations, patients residing in Kazakhstan may get consulted by foreign specialists, and findings of their examinations are completely analyzed by them online.

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Succession of Third and Forth Stages

• Mechanisms of extended councils and tele-bridges are used to select patients to the forth, surgical stage of epilepsy treatment as well as when patients pass from the forth stage to the therapeutic follow-up care. In doing so, the therapy succession is maintained, and patients may freely travel across the country, but within of eyeshot of their doctors in charge or physicians who attend them in any settlement of Kazakhstan.

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Postgraduate Education Division www.eeg.kz

• Three years ago we founded Postgraduate Education Division for Neurophysiology and Epileptology that every year arranges for video EEG, EMG/IP monitoring and epileptology courses. Some cycles go with the participation of leading specialists from Russia, Germany, Italy, Israel and other states.

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Medical Internet Portal "SVS Medical" (www.svsmedical.kz).

• The structure of this Internet portal includes tens of web-sites covering activity of neurology departments, epileptology events, web-sites of patients suffering seizure disorders and web-sites for EEG and neurophysiology specialists.

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Медицинский Интернет Портал SVS Medical (www.svsmedical.kz )

• On the basis of the said above, the epilepsy identification rates and correct diagnostics have improved several times. So, according to these facts we can say that Kazakhstan ranks among nations with improved antiepileptic care to communities within the CIS territory. However, alongside with achievements concerns exist as well.

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Epileptology Develops

• On the basis of the said above, the epilepsy identification rates and correct diagnostics have improved several times. So, according to these facts we can say that Kazakhstan ranks among nations with improved antiepileptic care to communities within the CIS territory. However, alongside with achievements concerns exist as well.

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Negative Moments in Epileptology

• The foremost is that anyone who feels like it takes on to treat epilepsy! It was not until 29 December 2011 that our country introduced a position of a non-staff chief epileptologist! And almost all epileptologists of our Union undertook advance training abroad. But, doors of many offices in Kazakhstan bear a plate "epileptologist"! Very often so-called epileptologists have not even taken neurology training!The same situation is with EEG and EMG specialists as well.

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Negative Moments in Epileptology

• Examinations are carried out not by neurology neurophysiologists, but by functional diagnostics physicians. Uncertainties and numerous reforms in postgraduate education resulted in that adult neurologists treat children with epilepsy.The lack of a single coordination regulatory authority renders therapy isolated and disconnected.

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Late identification is a consequence of low qualification of neurophysiologists

• According to our data, that is why merely 1,200

patients with epilepsy out of 6,400 were identified during the first year!

• • Where 5,100 patients were prescribed and passed

routine EEG! And after it neither has shown signs nor a low-qualified functionalist has identified "distention of cortical sulci" a neurologist diagnosticates a hypertension syndrome.

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Causes of poor epilepsy identification

• But it has long been known that usual routine EEG is informative only in 10% of cases! That is what on this subject told one of recognized doctors:

• • Routine intercritical electroencephalography is one of

the most frequently misused methods of researches in clinical medicine, and undoubtedly is responsible for huge human sufferings (D. Chadwick)

• (cited by Zenkov L.P. in his monograph "Clinical Epileptology", Issue 2, 2010)

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Free Provision With Medications

• The Policy of the Government of Kazakhstan, the Public Union, municipal and regional health care departments provide that 80 % of medications for epilepsy treatment are on the free register.

• • But, because local hospitals practically do not maintain

statistics, and patients not always are assisted by a district physician, annually hundreds of patients do not get this help! And the Government is unaware of a true number of persons in need of drugs.

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Try not to shift from one medicine to another without clear justification!

• The drug market has no idea about the availability of all medicines on the free provision list. As a result, a patient is sometimes shifted from one drug to another, which gives rise to aggravated seizures. Very often the transition from one drug to another even from the same pharmaceutical line leads to deterioration of a state.

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Patient is not adapted socially

• Another thing that is contrary to our patients is the lack of a legislative background to define rights of patients, and as a consequence, no social adaptation of patients with epilepsy is ensured. There are no special temporary stay centers, dedicated kindergartens and schools. Patients with convulsions are not taken to usual institutions! There are cases when seizures are arrested, the disability commissions reduces a level of disability or rejects it at all.

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We can overcome everything when together !

• These main and many other factors prevent faster and efficient development of epileptology in Kazakhstan.

• • Nevertheless I am confident that we together

can solve these concerns! Because we live in a great country, and common accord is a mainstay of our society!

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Representatives of our team with Professor Karlov V.A.

• Let me remind once again that all achievements I listed have been attained in the course of the last 8 years! And its bigger part is a merit of the V.M. Savinov SVS Epilepsy Laboratory and "SVS Nevro"Public Union - Movement of Physicians and Patients Against Epilepsy.

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One Soldier Does Not Make A Battle

• Dear Fellows!• Thank you for your attention.• I wish to recite a poem of the proletarian poet

Mayakovskiy

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We can overcome everything when together !

• It is bad to be alone• One cannot conquer alone• He who is powerful is a master to him • And even the weak, if they are two!• • The today's congress already proves

that we are not alone!

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