Promotion of empowerment indicators

Promotion of empowerment indicators for citizens and mental health services users

In 2009, the WHO and the European Commission launched “The WHO-EC Partnership Project on User Empowerment in Mental Health”, consisting of four components:
1. Supporting governments and local actors in creating an environment for user and carer participation;
2. Identifying indicators of user empowerment in mental health;
3. Collating good practices in user empowerment;
4. Promoting the mainstreaming of good practices in user empowerment in mental health.

The WHO Statement of Empowerment in Mental Health launched in 2010 entitled "User empowerment in mental health - a statement by the WHO Regional Office for Europe" gave a definition of empowerment[1] and proposed actions in 5 key areas:
· Protecting the human rights of service users and fighting against stigma and discrimination;
· Ensuring high-quality care and accountability of services;
· Having access to information and resources;
· Inclusion in decision-making
· Having local organizational capacity to make demands on institutions and governing structures.

The recommendations for action plans to be implemented apply at different levels: the societal/structural level, at the level of service provision and development, education and training of professionals, users, carers and society on the whole and finally, at the individual level.

On the basis of this Statement, the WHO Partnership Project developed 19 empowerment indicators which cover four main areas:
· Protecting the human rights of service users and fighting stigma and discrimination;
· Inclusion in decision-making
· Ensuring high-quality care and involvement in monitoring services;
· Having access to information and resources.

OBJECTIVES

This activity has several objectives, including to:
· Benefit from the point of view of users, families and carers, as well as all people participating in the health system (health professionals, social services professionals, elected officials, members of non-profit organizations, etc.)
· Survey all the European countries
· Test the empowerment indicators and target questions
· Collect examples of good practice for the empowerment of users and carers in mental health
· Formulate concrete and applicable recommendations
· Create an European observatory of empowerment in mental health

Localisation: International

Partners:

European representative organizations: ENUSP, EUFAMI
French national associations: Fnapsy, Argos 2001, France-Dépression, Advocacy-France, Unafam
Users and carers organizations: Greece (SOFPSI and EPAPSY), England and Wales (Hearing Voices Network), the Netherlands (Amsterdamse Vriendiensten, Mind Rights), Belgium (Psytoyens), Canada (Les porte-voix), Morocco (Association des usagers de la psychiatrie and AMALI), as well as umbrella organizations representing mental health associations in Belgium (AIGS) and the Netherlands (GGZ Nederland)
Non-governmental organizations: Mental Health Europe, the British Mental Health Foundation, the International Mental Health Collaborating Network (London) and the Association of mental health service users of Quebec
Representatives of universities: the University of Birmingham, the University of Brunel, the University of Cambridge, King’s College London and the Nottingham School of Nursing (England), Nova University of Lisbon (Portugal), the University of Stockholm (Sweden), the University of Montreal, the University of Sherbrooke and the Douglas Mental Health University Institute (Canada), Yale University (United States) and the Faculty of Medicine of Casablanca (Morocco)
Elected officials and representatives: the Tunisian Ministry of Health, the French Ministry of Social Affairs and Health, the Regional Health Authorities for the Nord-Pas-de-Calais Region and the Mayor's Office of the town of Hellemmes
Representatives and speakers from the World Health Organization Collaborating Centers: Geneva, Montreal, Trieste and Lille

ACTIVITIES

4th WHOCC International Congress: Mental health service users and carers empowerment
On 30 and 31 January 2014, the 4th WHOCC International Congress took place, which was an opportunity to stake out new orientations to support the empowerment of mental health service users and carers. Over 400 people, with a real participation of mental health service users and carers, from 16 European, African and American countries, discussed how to empower users and carers during this Congress

Test of the 19 indicators

During the preparation stage for the Lille Congress, the WHOCC rolled out an initial version of the survey with these 19 indicators. One or several target questions and an area for free comments were designed for each of the 19 indicators to allow a more detailed answer. The survey was reviewed by international and national mental health stakeholders. Then it was widely distributed in two versions: paper and web (see the link): http://enquetes.epsm-lille-metropole.fr/ccoms/empowermentccoms/questionnaire.htm

The initial results and limitations encountered were presented at a plenary session of the congress.

Recommendations for mental health service users and carers empowerment

This Congress was an opportunity to compare the different points of view of all of the stakeholders: mental health service users, carers, professionals and elected officials.
Recommendations for the empowerment of mental health service users and carers were proposed by the participants throughout all stages of the Congress - from the preparation stage (via the numerous offers for presentations received and from the Scientific Committees) up to the actual plenary sessions and workshops - not to mention on-going participation in the online Survey throughout this time. Ultimately, 200 recommendations were collected.

Initial work to classify and summarize the proposed recommendations led to the identification of 21 areas of work, grouped into 3 categories (please see report here):
· Protection of Human Rights
· Participation in the organization and evaluation of services
· Information and communication

Research on mental health empowerment

This research program aims at maintaining the momentum initiated during the Lille congress by promoting the recommendations and creating an european observatory of empowerment in mental health.
The main objective will be to realize a mapping of empowerment of mental health service users and carers in Europe, based on key-indicators.
The protocol is currently being drafted and fundings will be subsequently sought.

COMMUNICATIONS

VASSEUR-BACLE, S. & VAGLIO, A. Presentation of indicators and preliminary results. 4th WHOCC International Congress : Mental health service users and carers empowerment, Lille, January 2014.
VASSEUR-BACLE, S., VAGLIO, A, RAFAEL, F & ROELANDT, JL. Santé mentale en Europe :
21 recommandations en faveur de la Défense des Droits, de la Participation et de l’Information des personnes usagères des services de santé mentale et des aidants. Congrès Français de Psychiatrie, Nantes, November 2014.
VASSEUR-BACLE, S., VAGLIO, A, RAFAEL, F & ROELANDT, JL. Santé mentale en Europe: Recommandations en faveur de la Défense des Droits, de la Participation et de l’Information des personnes usagères des services de santé mentale et des aidants. Rapport du CCOMS (Lille, France), Décembre 2014.


[1] “Empowerment refers to the level of choice, influence and control that users of mental health services can exercise over events in their lives. The key to empowerment is the removal of formal or informal barriers and (...) the transformation of power relations between individuals, communities, services and governments.”