4 th International meeting of the WHO Collaborating Centre for research and training in public health (Lille, France) January 2014 How to promote empowerment experiences of mental health service users and carers in Europe? Workshop: Protecting Human Rights and Tackling Stigma and Discrimination Tine Van Bortel* and the ASPEN/INDIGO study group *Department of Public Health and Primary Care Institute of Public Health, University of Cambridge or

INTRODUCING ASPEN & INDIGO ASPEN (20 sites in 18 EU countries) Anti Stigma Programme European Network GENERAL AIMS Investigate the nature and extent of experienced and anticipated discrimination of people with mental health problems in various areas of life Contribute towards the reduction of stigma and discrimination of people with mental health problems Promote social inclusion and civil society involvement in mental health policy making

Why is this important? Globally, one of the major obstacles reported is to address the serious issues of stigma and self-stigma about mental illness caused by other people’s knowledge, attitudes, and behaviours which can lead to: » Impoverishment and low quality of life » social marginalisation and social exclusion » hampers help-seeking, treatment adherence and recovery » results in loss of opportunity for individual and society » is disempowering

INTRODUCING ASPENASPEN 7 work packages (activities) WP1: Scientific Coordination WP2: Dissemination WP3: Evaluation WP4: Best Practice Anti-Stigma Toolkit WP5: Scale Creation (DISC12) WP6: Cross-sectional Surveys and Interviews WP7: Policy Making / Legislation 3-year project Sponsored by the E.C. Linking 20 E.U. sites CRPD  starting point and framework to the study

WP6: Cross-sectional surveys and interviews Enquiring about experienced and anticipated discrimination of people with mental health problems in 20 EU sites

ASPEN: Anti Stigma Programme European network Some key findings from the cross-sectional surveys and interviews with people with mental health problems: Both experienced and anticipated stigma and discrimination was reported in all areas of life Highest reported stigma and discrimination was - by family members - in intimate relationships (spouse/partner); - employment setting (colleagues, employers, and more); - health and care services (physical-, mental-, social health workers) - in terms of levels of privacy (  current debate on “big data” storage of health records and potential ethical/human rights issues) Reported Human Rights violations and unlawful practices

ASPEN: Anti Stigma Programme European network Some key findings from the cross-sectional surveys and interviews with people with mental health problems: (  empowerment) Importance of social capital/social networks for empowerment Importance of language, terminology, behaviour (health workers and wider civil society) Importance of taking into account the context (personal context and wider societal context) Importance of the meaning of ‘health’, ‘illness’, ‘normal’ and ‘abnormal’ (personal, family, wider societal context) Importance of cultural adaptation of care and services (both in institutions and communities) Need for being respected, being heard, taken seriously, and seen as a full member of society Need for abolishing forced treatments

WP7: Policy Making and Legislation Are people with mental health problems true citizens of society? Is civil society involved in the mental health policy making and legislation process?

Some key findings from policy making / legislation: Interviews with Civil Society Reps. (NGOs) and Government Reps. in 20 EU sites (  contrasting views) Key barriers to civil society participation in policy making: - lack of information about the planned reforms; - lack of financial resources to get involved; - lack of value ascribed to the lived experience of people with psycho- social disabilities compared to ‘professional’ knowledge; - lack of tradition of civil society consultation (particularly in former socialist countries) which manifests itself through lack of value given to civil society opinions and input; - lack of accessible and timely information about the reforms; - complicated and jargon of consultation.

Why involving civil society / Importance of involving civil society in the mental health policy making process (1) Human Right: UN CRPD [Convention on the Rights of Persons with Disabilities – in which People with psycho-social disabilities are included] clearly states in Article 29: Right to participation in political and public life. (2) Stigma of mental illness is both a cause and result of excluding people with psycho-social disabilities and lived experiences from political processes. (3) Not involving wider civil society and particularly the expertise of people with lived experiences results into policies, legislation and protocols that are not properly needs-based or congruent with grassroots reality for the people who need it, nor does civil society hold any ownership/co-ownership which works disempowering and counterproductive.  Much more needs to be done to engage civil society as an active and equal stakeholder in the entire mental health policy making and legislation process at local, national and international levels.

In conclusion: CRPD was used as a starting point and framework for the ASPEN study which also links in with the QR Initiative of WHO The QR Initiative is based on five main themes: (1) right to adequate standard of living (Article 28 of CRPD); (2) right to enjoy the highest attainable standard of physical and mental health (Article 25 of CRPD); (3) right to exercise legal capacity (Article 12 of CRPD); (4) right to personal liberty and the security of person (Article 14 of CRPD), freedom from torture or cruel, inhuman or degrading treatment or punishment and from exploitation, violence and abuse (Articles 15 and 16 of CRPD); (5) right to live independently and be included in the community (Article 19 of CRPD).

In Conclusion Central to the protection of human rights, tackling stigma and discrimination, and empowerment is article 12 of the CRPD: “…until legal capacity is accepted and promoted there will be no empowerment…”

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