Report of IV Workshop of Global Campaign – Epilepsy Out Of The Shadows: Brazilian Demonstration Project

Report of IV Workshop of Global Campaign – Epilepsy Out Of The Shadows: Brazilian Demonstration Project

Paula T. Fernandes; Ana Lúcia A. Noronha; Ley Sander; Carlos Acevedo; Li M. Li

ASPE (Assistência à Saúde de Pacientes com Epilepsia)

Since 2002 ASPE (Assistência à Saúde de Pacientes com Epilepsia) has carried out Demonstration Project (PD) in Brazil, as a part of the Global Campaign “Epilepsy out of the Shadows”, led by WHO, ILAE and IBE The main aim of the PD is to develop a treatment model for people with epilepsy in primary health care settings. This project has targeted regions in Campinas and São Jose do Rio Preto, both in Sao Paulo State. A task force has been established to assess strategies to expand this nationwide. The PD was carried out in six phases.

“Epilepsy out of the Shadows”, held on May 4-5th of 2006, in Campinas. Over 40 people attended, including Prof. Li Li Min, PD coordinator; Prof. Ley Sander, Scientific Coordinator of the Global Campaign; Dr. Carlos Acevedo, chair of the Latin American Epilepsy Commission and the team that carried the PD. The workshop had two parts, the first reviewed the results of the project and the second, discussed the establishment of a National Epilepsy Policy.

The workshop was opened by Paula Fernandes, president of ASPE. This was followed by Prof. Li Li Min discussing the main objective of the workshop and by Prof. Ley Sander reviewing Demonstration from other countries and the general the objective of the Global Campaign. After this introduction, the results of phases of Brazilian PD were presented and the conclusions of each phase were presented here:

• Phase 1 – Epidemiological survey: The prevalence of epilepsy in Brazil is similar to other resource-poor countries, and the treatment gap is high. Epilepsy is more prevalent amongst less wealthy people and elderly people (over 59 years old) are those mostly affected by active epilepsy. Nevertheless treatment gap is similar amongst different social classes. Furthermore, commitment of the Brazilian health system towards improvement of the quality of health management for people with epilepsy and consistent and regular AED supply is urgently needed.
• Phase 2 – Capacitation courses: The capacitation courses were divided in three parts: health professional; replicators and teachers. The health professional capacitation courses promote security to deal with patients with epilepsy, better knowledge about the condition, less beliefs and myths about epilepsy, more knowledge about how to deal with AEDs and less neurologist referral. The replicators’ course promotes low cost and highly effective actions in the management about epilepsy and can quickly expand capacitation program nationwide. The teacher’s capacitation course is effective and has a long term effect on knowledge, attitude and perception to teachers of fundamental school.
• Phase 3 – Stigma identification: The research performed with 1,850 people of the community showed that the negative social attitudes and feelings observed in certain segments of the community can create inadequate behavior, difficulties in social relationships, work, school and consequently perpetuate stigma in society. The magnitude of stigma is different within different segments of local society (gender, social class, school level and religion) and for this reason, mass media campaigns should target these social segments in order to fight prejudice and improve the social acceptance of people with epilepsy.
• Phase 4 – Mass media: We observed that the language expression influences the imaginary perception and has consequence in the stigma perception about epilepsy. In this context, we should consider the proper usage of language as it matters for bringing epilepsy out of the shadows. Furthermore, effective mass media campaigns should consider specific language of the different segments of the society to take out labels and improve social acceptance and reduce stigma.
• Phase 5-6 - Data analysis: With this PD, we developed a model of epilepsy treatment for primary health level based on existing health system articulated on strategic actions centered on the health care providers and the community. We demonstrated that using our model, people with epilepsy can be effectively treated at the primary health level, with important reduction in seizure frequency, as well on general well being. This model can be applied nationwide, as the key elements do exist provided that the strategic measures are put forward in accordance with local health providers and managers
• National phase: The modules created and developed in this PD (capacitation, de-stigmatization, social network) can be implanted easily and tailored to the necessities of each region of the country.

The achievements of the four years of activities were discussed particularly the hurdles and pitfalls but as well as the positive lessons. This was an excellent opportunity to review critically the whole exercise, exchange experiences and plan for the future. After the presentation of the results, Prof. Ley Sander presented future activities of the Global Campaign. He also used the occasion to congratulate the successful completion of Brazilian PD.

In the second part of the workshop the implementation of a National Public Policy for Epilepsy was discussed. Firstly Valquíria Gonçalves, chairperson of Epi-Brasil, the National Federation of Epilepsy Associations, presented the patient’s perspective of epilepsy, emphasizing the need of qualified health professionals, the need for free antiepileptic drugs and the importance of psychological management. Prof. Fernando Cendes, representing the Brazilian League of Epilepsy, exposed the perspective of health professionals, highlighting the common effort of the professionals in the area, in primary and secondary health care and the associations of patients with epilepsy. Dr Juarez Furtado, representing the Health Ministry, presented the governmental perspective and emphasizing the importance of all society segments to be organized if they are to reach their objectives. The main goals of the national epilepsy policy are to reduce stigma and improve the quality of life of people with epilepsy. Improving the qualifications of health workers and implementing a national Epilepsy Programme will be part of this effort. Hopefully soon the regulations to formalize the programme will be approved by the Ministry of Health. Therefore, Brazil will have a will have a National Epilepsy Programme and a major objective of Brazilian PD will have been achieved.