ADVOCACY, NETWORKING AND MOTIVATION OF CIVIL SOCIETY: AN INTERVENTION PLAN FOR MENTAL HEALTH AND HUMAN RIGHTS PROMOTION

4th East European Psychiatric Congress & 3rd Preventive Psychiatry International Congress

 FITSIOU P., M. MOUSMOUTI,  DARMOGIANNI N., MALAKOZI A., 

R. AGATSA

SOCIETY OF SOCIAL PSYCHIATRY AND MENTAL HEALTH  

This project  is funded by Iceland, Liechtenstein and Norway under the EEA Grants Greek NGO Programme “We are all Citizens”. The Bodossaki Foundation is the Fund Operator of this  Programme.  The  Programme  aims  to  strengthen  civil  society  and  enhance  the contribution of NGOs to social justice, democracy and sustainable development. 

Introduction• The burden of mental illness: Neuropsychiatric disorders are the third leading

cause of disability-adjusted life years (DALYs) in Europe and account for 15.2%. • Effects are disproportionate for vulnerable groups: not equal access to health 

services, lack of community services, stigma, and corresponding barriers to education, work, home, leisure activities, social relationships, active citizenship and community involvement

• People with mental health problems express unfamiliarity with the term human rights and advocacy, reflecting the lack of awareness and information.

• The transition from the medical model of disability to the rights based or social model, that views people with disabilities as subjects of rights rather than beneficiaries of charity, relies on two central concepts that aim to reverse the disabling environments: respect for autonomy and individualised support as a path to empowerment, and targeted interventions to remove barriers in information, access to services and representation. 

The reality for people with mental health problems in Greece: FACTS and FIGURES

• According to the European Disability Forum (2015) persons with disabilities, in particular persons with intellectual and psychosocial disabilities are at high risk of human rights abuse, including violations of the right to life. 

• 60,2 % involuntary admissions in the biggest  mental health hospital in Athens. 97% of patients were transferred by the police and not by the First Aid Centre Emergency Ambulance Service.  It is not certain that patients were properly informed of their rights and more specifically of their right to file an appeal, as is required by law. (Stylianidis, Peppou, Drakonakis, 2012). 

• More than 84% of all the admitted were not  referred to Community Services (Stylianidis, Peppou, Drakonakis, 2012)

• Restraint  may be used as punishment or counterbalance staff shortages in overcrowded  facilities. More precisely, deaths recorded annual  as a  consequence of restrictive practices (Stylianidis 2014) 

• 75% of the population with at least one common mental disorder does not receive any treatment at all for its condition. (Skapinakis et al, 2013)

The landscape regarding services According to Maudsley International and CMT Prooptiki, 2015:• Many areas in Greece still lack basic mental health units especially primary care 

services. The existing system is centralized. Sectorization is not implemented (despite the fact that it was provided for in law 2716/99 on mental health reform) and the continuity of care is not achieved. 

• The participation of users of mental health services and family associations in sector committees has not been implemented yet in the active committees

• And while general issues regarding the protection of  the patients' rights, their social rehabilitation and the reduction of  stigma connected  with mental illness, have been addressed through legislation, through the establishment of special committees (Special  Committee for the Monitoring of the  Protection of  Rights of People with Mental Health Problems) and through specialized reports and interventions of  independent authorities (eg NCHR, Ombudsman),  the obsolete institutional framework in place requires immediate change on sensitive issues such as involuntary hospitalization, legal capacity, detention and treatment of mentally ill prisoners. 

The challenge• Based on the data presented above 2 of the most acute

challenges for the rights of people with mental health problems concern their limited access to adequate community services due to fragmentation and lack of coordination and networking of  existing services and the limited ability to react to abuses of rights due to lack of information and limited access to legal services and representation.  The case studies that follow aimed to address these barriers. 

Case studies: Targeted interventions to address barriers in mental health

• The 2 case studies we will present refer to 2 new projects implemented by the Society of Social Psychiatry and Mental Health. These projects are funded by Iceland, Liechtenstein and Norway under the EEA Grants Greek NGO Programme “We are all Citizens”. The Bodossaki Foundation is the Fund Operator of this Programme. The Programme aims to strengthen civil society and enhance the contribution of NGOs to social justice, democracy and sustainable development.

• We have to say that the Society of Social Psychiatry and Mental Health, in the framework of the work done in the Mobile Mental Health Units and in the Rehabilitation Services since 1981, has been fighting for the rights in mental health and self advocacy promotion, through the systematic networking, community awareness raising and empowerment of people with mental health problems.

Case study 1: Facilitating access to community services through networking and a single entry point to the mental health system

• The project titled "BONDS: Strengthening and Networking of Mental Health Organizations to Improve Services to the Community" aimed to strengthen networking between mental health services in order to facilitate equal access to services for people with mental health problems through the development of Citizens' Information Points for Mental Health and Rehabilitation Services

• This project built on the experience gained through the local Health Care Network "Akeso" in the rural area of Fokida Prefecture that was established by the Society of Social Psychiatry and Mental Health since 2007 to respond to gaps and discontinuity in the treatment of health services users and irregularities in the referral processes.

Aims of Network “Akeso”• The network aimed to: To inform and facilitate access to health services for 

citizens that live in remote areas; Foster collaboration between health care entities/services; Empower and support each health care entity; Record health care needs and gaps in the region; Reinforce solidarity, trust, human rights and inclusion perspective in local community.

• The network intervened to address the problems identified through awareness and information, the recording and evaluation of health care requests, needs and gaps, the empowerment of health entities and the development of collaboration initiatives.  

Methods• Citizens’ information involved an extended awareness campaign to citizens through the use of 

posters, brochures, local mass media, social media, personal meetings with officials and influential people in the community, visits at schools in the region even the most remote ones. 

• Development of collaboration involved communication and meetings with local entities, development of communication and referral protocols, assignment of contact persons in the network, regular managerial meetings, feedback meetings, co-organization of public speeches, cultural and thematic events in the community, monthly letters on news and scientific topics, use of blog. 

• Recording and evaluation of health care requests, needs and gaps involved a telephone line that accepts, records, refers and keeps truck of health requests, maps of all health services available in the region, develops a pool with all possible health needs – encoding in 8 categories of 65 needs, construction of rating tool to evaluate requests’ processing every six months.

• Empowerment of health entities through statistical recording of health needs and gaps, raising of the issues in the community, update the Prefecture of Fokida and Ministry of Health, mobilisation of volunteers)

 

Results

• The “Akeso” network dealt with over 450 requests for health or social needs. 47% of the requests came directly from citizens, 42% of which had been informed from some public non psychiatric health entity. Most of the times (82%) some “other” society member called in the name of the patient, in 61% of the cases it  was a female. The project  resulted in increased referrals to the network, reduced response time, a notable reduction of unmet needs/demands, a strengthening of people's trust/confidence in the existing services and a feeling of security  and coordinated actions to address the existing gaps.  

Case study 2: Advocacy for people with mental health problems

• The  project titled "Action Platform for the Rights in Mental Health" aimed to intervene in a dynamic manner to address the systemic lack of awareness and information of people with mental health problems on their rights which are often associated to stigma and the barriers in accessing legal services and representation. . 

• The project combined the establishment of the first Advocacy Office in the country with community awareness activities and targeted capacity building for professionals involved with the rights of people with mental health problems (lawyers, judges, mental health professionals, police). The ultimate aim of the Advocacy office is to  support the shift from advocacy to self advocacy, from "clinical recovery" to social recovery and self- determination.  

The Advocacy Office • The Advocacy Office offers individualized support jointly by lawyers and clinicians. The main services include information, consultation,  guidance and referral to other services and institutional bodies to users of mental health services. It works closely with representative users' and families' associations, trying to empower people to claim their rights. 

• After 5 months the Advocacy office has offered services to approximately 110 people and there is an increasing number of  requests. 

Common cases

• The most common cases recorded concern issues of legal capacity, the right to manage one's own assets, access to social security benefits and entitlements, involuntary admissions, discrimination, bullying or violence against people with severe mental health problems. 

• In practice, all issues derive from a chronic neglect and abuse of the interests and the needs of people with mental health problems 

Challenges

• The  biggest challenges that the Advocacy office has identified concern the lack of an adequate network of health and support services, the lack of continuity in care, the lack of cooperation between services and institutional bodies involved with the rights of people with mental health problems, the lack of data and evidence based interventions and the complete lack of a rights based approach in mental health services. 

Interventions

• To overcome the fragmentation of the system effort is made to invest in a  systematic collaboration with existing  services and institutional bodies. However, the fact that the role of this advocacy office is not officially statutory/institutionalized limits the potential of interventions.   

• Through this pilot project our vision is to record and elaborate the data and information received and conclude to a comprehensive and evidence based proposal for the establishment of advocacy offices as an institution, in order to mainstream the human rights perspective in mental health

Conclusion• The ‘paradigm shift’ from the medical model of disability to the social or 

rights-based model entails that the burden shifts from individual limitation and impairments to societal and bahavioral constraints that inhibit full participation and inclusion of persons with disabilities in society. Since the adoption of the UN Convention on the Rights of People with Disabilities, this is not only an ethical or ideological stance, but a legal obligation. The UN CRPD is the first international human rights treaty to embrace the social model of disability and acknowledge disability as a condition arising from the interaction between individual limitations and other barriers that hinder  full and effective participation in society on an equal basis with others

Conclusion 2

• As shown from the data presented above these barriers include legal,  structural, organizational, financial and behavioral barriers which often result in a qualitatively different level of enjoyment of rights by people with disabilities. In Greece, the ‘disabling environment’ in which people with mental health problems live, includes fragmented and poorly coordinated services, a chronic lack of information and neglect for their specific needs, persisting stigma and discrimination in society but also in professionals who often interact with them.

• The case studies presented are innovative and successful examples of targeted interventions to address these barriers through improved referral and networking, the provision of information and legal support, the provision of targeted capacity building and community awareness and information.

• These experiments prove that eliminating barriers, facilitating  equal access to services set the foundation for meaningful participation and engagement for people with mental health problems in society. 

Thank You 

      This project is funded by Iceland, Liechtenstein and Norway under the EEA Grants Greek NGO Programme “We are all Citizens”.  The Bodossaki Foundation  is  the Fund Operator of  this  Programme.  The  Programme  aims  to  strengthen  civil  society  and  enhance  the contribution of NGOs to social justice, democracy and sustainable development.