Epilepsy in EuropeEpilepsy in Europe

26th of August 201026th of August 2010

-Dr. Mat MuijenDr. Mat Muijen

-Regional Adviser Mental HealthRegional Adviser Mental Health

Epilepsy in the WHO European Region:Fostering Epilepsy Care in Europe

EpilepsyOut of the Shadows

Key facts

Prevalence 0.8%

Effective treatment possible for 70%

Estimated treatment gap 40%

Supply and demand varies greatly:1. Drugs2. Staff3. Services

Key factors

IdiopathicCo-morbidityRisk groupsCultureStigmatizationSocial 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.

Well beingPrevention InterventionsInclusion

Vision of integrationVision of integration

Actions

Raise profile and reduce stigmaImplement effective health policyCollect information about rightsImprove access to effective treatmentEstablish rehab unitsPromote research, incl. efficiency studiesOrganize 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

TreatmentsCare conditionsSafetyStaff numbers and qualityReimbursements (DRGs)SalariesInvestment 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 aimChildren 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.

DeclarationDeclaration

Statement of vision and intentResponsibilities Member States and WHORole partnersBalance political and technical aspectsEndorsed by signatories

Mental Health Programme

Determinants of wellbeing

EmploymentSchoolsFamily StatusEthnicityRelative income (status)InequalityCountry

Social Determinants

Exposures vulnerabilities

Differential status

Social stratification

Systematic government funding for user Systematic government funding for user and family associationsand family associations

Partnerships

Patient groupsFamily groupsProfessional AgenciesExpertsNational RepresentativesWHO and EC

KnowledgeResourcesLeadershipSolidarity

Lack of priority?

Lack of power and influence!

Mental Health Programme

Empowerment at the societal level

• Service user’s human rights are respected, Service user’s human rights are respected, protected and fulfilled protected and fulfilled

• Legislation to prevent from discrimination Legislation to prevent from discrimination because of epilepsy is introduced because of epilepsy is introduced

• Programmes are implemented to supportProgrammes are implemented to support the empowerment of users and carers the empowerment of users and carers

• Nationally recognized user and carer Nationally recognized user and carer associations exist associations exist

Empowerment at the service level

• Community-based specialist treatment and care is Community-based specialist treatment and care is availableavailable

• Independent review bodies are in place to reviewIndependent review bodies are in place to review the effectiveness and lawfulness of treatment and the effectiveness and lawfulness of treatment and servicesservices

• Users are involved in all stages and levels of Users are involved in all stages and levels of running, planning, delivering and evaluating running, planning, delivering and evaluating services services

Empowerment through education and training

• Training for GPs for better recognition of epilepsy Training for GPs for better recognition of epilepsy problemsproblems

• Stigma, discrimination, empowerment as topics in Stigma, discrimination, empowerment as topics in the curricula of staff the curricula of staff

• Trainings for users and carers in skills for Trainings for users and carers in skills for committee work and leadership development committee work and leadership development