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Epilepsy in Europe 26th of August 2010 Dr. Mat Muijen Regional Adviser Mental Health

Learn about epilepsy prevalence, treatment gaps, stigma, discrimination, and actions needed to improve care and societal integration. Address challenges in healthcare, promote wellbeing, and empower individuals with epilepsy through education and training.

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Epilepsy in Europe 26th of August 2010 Dr. Mat Muijen Regional Adviser Mental Health

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  1. Epilepsy in Europe • 26th of August 2010 • Dr. Mat Muijen • Regional Adviser Mental Health

  2. Epilepsy in the WHO European Region:Fostering Epilepsy Care in Europe Epilepsy Out of the Shadows

  3. Key facts • Prevalence 0.8% • Effective treatment possible for 70% • Estimated treatment gap 40% • Supply and demand varies greatly: • Drugs • Staff • Services

  4. Key factors • Idiopathic • Co-morbidity • Risk groups • Culture • Stigmatization • Social determinants

  5. Scope • Promotion of wellbeing; • Tackling stigma, discrimination and social exclusion; • Prevention of health problems; • Care for people with disorders; • Recovery and integration into society.

  6. Vision of integration

  7. Actions • Raise profile and reduce stigma • Implement effective health policy • Collect information about rights • Improve access to effective treatment • Establish rehab units • Promote research, incl. efficiency studies • Organize education

  8. Experiences of discrimination • 44% reported discrimination from GPs • 32% reported discrimination from other health services • 47% reported discrimination in workplace • 37% reported discrimination in finding employment • 56% reported discrimination within the family • 51% reported discrimination from friends • 40% reported discrimination within personal relationships Source: “Pull yourself together! A survey of the stigma and discrimination faced by people who experience mental distress”, Mental Health Foundation, 2000

  9. Service consequences of stigma • Treatments • Care conditions • Safety • Staff numbers and quality • Reimbursements (DRGs) • Salaries • Investment • Commitment

  10. Demonstration Project: Georgia Epidemiological phase • Prevalence of active epilepsy: 8.8 per 1000 • Treatment gap: 71.6% (almost 50% due to inadequate dosage) Public and professional education phase • General professionals • Teachers, parents • General public: hairdressing salon, obstetric clinic etc.... • Through radio and television Service delivery and intervention phase

  11. “More than 1.45 m people with disabilities in Europe live in residential care, 70% in services with over 30 places.” Residential services in Europe – findings from the DECLOC study Across the EU there are some 150,000 children living in residential care settings Report of the Ad Hoc Expert Group on Transition from Institutional to Community-based Care At least 317,000 children with disabilities in the region live in residential institutions, often for life. Innocenti Insight, Children and Disability in Transition in CEE/CIS and Baltic States

  12. Children with ID: WHO aim To ensure that all children and young people with ID are fully participating members of society, integrated in the community, receiving appropriate health care and support, proportional to their needs. Mental Health Programme

  13. Declaration Mental Health Programme Statement of vision and intent Responsibilities Member States and WHO Role partners Balance political and technical aspects Endorsed by signatories

  14. Determinants of wellbeing • Employment • Schools • Family Status • Ethnicity • Relative income (status) • Inequality • Country

  15. Social Determinants

  16. Systematic government funding for user and family associations

  17. Partnerships • Patient groups • Family groups • Professional Agencies • Experts • National Representatives • WHO and EC

  18. Knowledge • Resources • Leadership • Solidarity

  19. Mental Health Programme Lack of priority? Lack of power and influence!

  20. Empowerment at the societal level • Service user’s human rights are respected, protected and fulfilled • Legislation to prevent from discrimination because of epilepsy is introduced • Programmes are implemented to support the empowerment of users and carers • Nationally recognized user and carer associations exist

  21. Empowerment at the service level • Community-based specialist treatment and care is available • Independent review bodies are in place to review the effectiveness and lawfulness of treatment and services • Users are involved in all stages and levels of running, planning, delivering and evaluating services

  22. Empowerment through education and training • Training for GPs for better recognition of epilepsy problems • Stigma, discrimination, empowerment as topics in the curricula of staff • Trainings for users and carers in skills for committee work and leadership development

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