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

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

Key facts Prevalence 0.8% Effective treatment possible for 70% Estimated treatment gap 40% Supply and demand varies greatly: 1.Drugs 2.Staff 3.Services

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

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

Vision of integration

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

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

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

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

“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

Mental Health Programme 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.

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

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

Social Determinants

Systematic government funding for user and family associations

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

Knowledge Resources Leadership Solidarity

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

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

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

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