BASIC INFORMATION

MAIN PROBLEMS OF THE GROUP OF PEOPLE SUFFERING FROM EPILEPSY IN POLAND

1. The initiating of legislative works regarding life conditions of people with epilepsy and of other disabled persons through conversations with parliamentary boards, ministries, international organisations, etc.

2. Ratification of Convention No. 159 MOP regarding vocational rehabilitation and employment of disabled persons by Poland

3. Legal regulation of the problem of work accidents with epileptics

4. The problem of treatment of persons suffering from epilepsy as an accompanying disease with health centres.

5. Formation of favourable conditions of learning and occupation choice by children and youth with epilepsy.

6. Organisation of therapeutic holiday camps and rehabilitation periods and kind of payment for them by PFRON (State Rehabilitation Fund), Ministry of Health, Ministry of Education, etc.

7. Forming of an organisation system of health care for people suffering from epilepsy, reactivation of epileptic consulting units with EEG rooms.

8. Widening of employment possibilities for epileptics at posts fulfilling their qualifications and psychophysical predispositions.

9. Acting for health education through the press, radio and TV to eliminate discriminating and false attitude of healthy part of the society towards people suffering from epilepsy.

10. Reformation of the system of disability certification, of the system of social security and the system of health security.

11. Continuation of the action "Apparatus EEG" supporting units of medical service treating people suffering from epilepsy by this medical equipment.

12. Admitting the law - "Card of Rights of Disabled Persons"

13. Appointment of a minister - a member of the Cabinet for affairs of disabled persons and of his representatives at new Voivodeship offices.

14. The full 100 % valorisation of pensions of disabled persons and raising of the lowest pensions.

15. Estimation of law regulations regarding disabled persons.

16. 16.Enabling the purchase of foreign antiepileptic medicines on principles regarding domestic medicines.

Employment and Vocational Rehabilitation

At the present time we have not got a proper and effective rehabilitation heading for limitation of disability in the population of people suffering from epilepsy. You know that the this group consists of people with different grade of disability - from small disability to inability to independent existence. The estimation of disability grade should be the final act being preceded by precise determination of the grade of limitation of possibility to employment and occupation choice, with maximal aiming to employment of as great as possible group of people suffering from epilepsy in normal conditions and not with sheltered workshops. Some consulting units and books give a list of vocations being easy to reach for people suffering from epilepsy. The lists have an information and auxiliary character exclusively because of a great variety of epilepsies, their course, time of appearance and kind of fits and results of treatment. It is clearly contraindicated execution of such vocations where even short-living disturbances of the consciousness may be dangerous for the this person or for other persons. There are for example: motor vehicle driver, operator of heavy duty machines, welder or surgeon. The people suffering from epilepsy may be fully valuable workers when the general fear before employment of them will be changed among the employer who are concerned about unexpected after-effects of work accidents that may come into being at epilepsy fits. In this connection the Association see an urgent necessity to state that the result of epilepsy fit that takes place at the normal conditions at the job being secured according to regulations of safety and hygiene of work may not be treated as a work accident. The work accident is such acting of external factor that leads to a body injury but in the case of epilepsy the cause of eventual fall and injury the internal factor is. According to the Polish Association of People Suffering from epilepsy only such statement can prevent the exaggerated fears of the employers.

EDUCATION AND PROFESSION CHOICE

The proper profession choice and the guarantee of proper education level that the child with epilepsy may have should be considered not only in humanistic but in economic categories as well. The proper education and proper professional guide of youth with epilepsy should secure in great grade economic base for them, thus it should counteract they become early pensioners and obtain benefits and subsistence allowances. The properly chosen profession and occupation are therapeutic factors. Unfortunately we see manifestation of intolerance towards people suffering from epilepsy in some schools where teachers, educators and school psychologists are responsible for this state. Epilepsy attack in the school room causes an unwell panic and anxiety but the epilepsy does not threaten the health of other students and does not disturb the life of the school in an essential way. We hear the often repeated opinion that the child with epilepsy should learn in a special school or has an individual curriculum. The opinions of such kind are very incorrect because the children and the youth suffering from epilepsy should learn in normal schools (with exception when they have intellect disturbances) and the presence of such children in the group of healthy pupils should be an important factor influencing moulding a proper relation of the society towards disabled persons. The organisation of common teaching, common rest in the form of holiday camps counteracts the filling of harm, isolation and alienation.

EUROPEAN DECLARATION ON EPILEPSY

On 19 June 1997 the World Health Organisation (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) published the international campaign entitled "Out of the Shadows". On 24-25 October 1998 it took place in Heidelberg in Germany the meeting of representatives of European epilepsy organisations with specialists of health preservation - representatives of governments and universities, regional representatives of WHO, ILAE and IBE behind the facade of the world epilepsy campaign. This body took the above recommendations unanimously that should be presented and put into effect in all European countries.

 Recommendations:

1. Procedures making possible diagnosing of epilepsy attacks and their causes should be available.

2. Epileptic medicines should be available for all and against affordable prices.

3. Prevention methods should be elaborated.

4. Schooling of specialists in epilepsy, in epilepsy research and needs of individual groups, for example women, older persons, etc. should be promoted.

5. The specialists and public opinion should be educated on epilepsy, treatment methods and social consequences.

6. The general public should be told that persons suffering from epilepsy may attend normal schools and are able to work in the most professions.

7. The patients (both children and adults) should be educated.

8. Associations of patients should be supported.

9. Research projects should be supported and promoted with special consideration of research conducted in co-operation with other countries. It should be elaborated recommendations basing of facts and algorithm of care of persons suffering from epilepsy heading for example towards improvement of life quality. It should be elaborated estimation hints of effectiveness of examined epilepsy medicines.

10. Epilepsy White Book should be elaborated in co-operation with European epilepsy organisations.

PARTICIPATION IN PUBLIC LIFE

The epilepsy is very often treated in different offices as a psychic disease. I Poland, on the contrary to Western countries, the visit with a psychiatrist is treated pejoratively by other people. A change of mentality and culture of the society will last years. Because of these reasons the people suffering from epilepsy are deprived of social and professional promotions and possibility of active participation in public life, for example: to stand for parliament or self-government, to perform functions or position by choice, contrary to their qualifications. The institutions being appointed for service for disabled persons, for example PFRON, National Consulting Board for Disabled Persons, do not represent persons suffering from epilepsy because none representative of our group is in their composition. It is why the documents of international organisations: a. UN - Standard Principles of Evening out the Chances of Disabled Persons, b. WHO-ILAE-IBE - European Epilepsy Declaration Have got a great legal and educational importance. The people suffering from epilepsy must not be citizens of the second category in the own country, they should have the same development chances. Extreme opinions on epilepsy and people suffering from this disease come from some doctors. They may be said about individual cases but they are often treated as regarding the whole population. Such opinion being taken into consideration by representatives of other vocational groups cause great damages if the social consciousness and deform the real image of the disease and the patient. The status of the person suffering from epilepsy in Poland must be legally regulated. We are sorry but ministers of proper departments acting in the past were indifferent to this problem so important socially and politically.

THE QUALITY OF MEDICAL SERVICE IN DOMAIN OF EPILEPSY

The basic factor in the life of the person suffering from epilepsy and in consequence of his family the quality of medical service is. The quality of services in domain of epilepsy treatment has the direct influence on the quality and level of the life of the person suffering from epilepsy in Poland. Unfortunately, in spite of achievements of the world medicine in this domain, the level of medical service regarding epilepsy: diagnosing, examination and treatment is in Poland very low. The special problem in access to institution of epileptic treatment is in Polish villages, communes and small towns where the person suffering from epilepsy is treated by doctors with other specialities. A very important shortcoming in domain of epilepsy treatment is the lack of information and a low interest of doctors in treatment of this kind. The cause of this condition is probably the fact that the people suffering from epilepsy are one of the poorest social groups in Poland, where the only source of existence the lowest disability, agricultural or social pension is. Some patients have not got the own source of existence and are in care of their families or charitable organisations. The structure of medical institutions and their poor equipment have the influence on quality of service. Till the present time, though applications were lodged to Ministry of Health, a National Consultant for Epilepsy has not been appointed , there is none central program in the domain of epilepsy treatment and none elaborated standards of treating of this disease. There is a urgent need to elaborate and introduce the program of care of people suffering from epilepsy with an interdisciplinary character. A false diagnosing of the epilepsy entails high costs of an useless treatment and an incorrect treatment with even correct diagnosis of the epilepsy leads to polytherapy and is very expensive. The visible growth of scientific publications, organised seminaries and conferences have according to the people suffering from epilepsy and their families the great influence on the quality of medical service and on the level of service in basic medical service. The causes there are staff shortage and improper system of education of physicians and students and old organisation structures. We see the situation of institutions of the public health service being busy in treatment of the epilepsy and our organisation initiated the Whole-Polish action of support of medical institutions with medical equipment entitled "Apparatus EEG". The value of purchased apparatus EEG and of other medical equipment amounted to over 2.000.000 zlotych.