Service user organisations in Germany

In Germany, with only a few exceptions, there aren’t any specialized organizations which aim exclusively at representing service user interests (e.g. comparable to “shaping our lives” in the UK) in policy, research, practice and education. The interests of service user in Germany are represented mainly by self-help groups and organizations. Therefore this text focuses on self-help in Germany. In Germany, at the end of the 19th century, the first regional associations for people with disabilities were founded, e.g. charities for people with hearing, speech or visual disabilities (“Deutscher Blindenverband“ 1912). After the end of the Nazi regime and Second World War, people with disabilities or chronic conditions made new efforts to establish self-helporganizations. In a couple of cases, the foundations were initiated by experts, e.g. in 1951 the “Deutsche Diabetiker Bund“, in 1952 the “Deutsche Multiple Sklerose Gesellschaft“ and in 1955 the “Selbsthilfe Körperbehinderter“ (Borgetto 2004). In 1953, the first German group of Alcoholics Anonymous was established and, later on, comparable groups for other psychosocial problems were founded (Lisofsky 2013). In the first years of the 1970’s a radical self-help movement developed in West Berlin which was considered to be an alternative to the traditional social work services (e.g. anti-authoritarian kindergartens).

At the end of the 1970’s the self-help movement extended rapidly nationwide to almost every field of social work and health (e.g. woman, elderly people, culture). Many cities developed funding to support self-help initiatives and furthermore built special counseling services (Selbsthilfekontaktstellen, e.g. SEKIS in Berlin). Networks of self-help groups and organizations were established on different levels: regional, federal state and nationwide (Mielenz 2013). Nowadays self-help groups and organizations are anchored in society on different levels, in different fields and with different degrees of involvement. In Germany almost 100.000 self-help-groups exist (Matzat 2007); the majority of them are concerned with psychosocial problems (Lisofsky 2013). They mainly aim to improve their members’ personal circumstances and practical skills for dealing with life’s challenge – and this includes dealing with professional social work. The counseling services for self-help groups provide information and coordination for people who want to found a self-help group and for self-help groups which already exist. In addition, their public relations work promotes a positive climate regarding self-help activities and helps reduce the stigmatization of being a social services user in the community. Unfortunately there aren’t any binding and obligatory standards for promoting these counseling services in the municipalities and federal states in Germany. Therefore the situation for counseling services in Germany’s regions is inconsistent (Thiel 2007). In 2004 there were 278 counseling services in Germany, only 72 of which were in the federal states of the former GDR (NAKOS 2004). Many self-help groups and organizations are organized at the level of the federal states and also nationwide.

As shown below in detail, on this level, service users participate in and influence policy, research and education. Self-help-organizations in the field of addiction and psychiatry have a long tradition and have achieved a high degree of organization so that their ways of interactiing with policy and their research activities are described exemplarily. The big five self-help/service user organizations in the field of addiction, (Blaues Kreuz Deutschland, Blaues Kreuz in der Evangelischen Kirche, Freundeskreis für Suchtkrankenhilfe, Guttempler, Kreuzbund) have intensified their collaboration during the last two decades (Schneider 2013). They have initiated several projects, (co-)funded with the Federal Ministry for Health, on issues like “young addicts”, “self-help health promotion in the area of addiction” and liaisewith the professional system and the self-help sector. Lobbyism in this area is thought to be making good headway, e.g. representatives of these organizations are members of the Governmental Commission on Drugs and Dependency The organizations concerned with psychiatric issues are numerous. One of them, the Bundesverband Psychiatrieerfahrener e.V, that was founded in 1991, tries on one the hand to influence the treatment that is usually offered in psychiatry and, on the other hand, to instigate improvements in living conditions in general. They make a case, amongst other things, for more psychotherapy and fewer psychotropic drugs, and propagate the development of an alternative care philosophy in traditional psychiatry. To this end they issue statements on psychiatric topics; a current topic is the provision of a new law in the federal state of Rhineland-Palatinate on the involuntary treatment of people in psychiatric hospitals.

A more regional organization, the “Trialog”, focuses more on immediate communication with professionals. They organize courses in which service users, their relatives and professionals meet. The Society for Bipolar Disorders also works in this way and in this context, service users participated in the development of the clinical guidelines for bipolar disorder. To foster the rights of people with mental disorders, another self-help organization for families in psychiatry has organized an internet-based platform with a research grant from the Federal Ministry for Health, where the organizations and groups concerned with mental health can coordinate their activities. Additionally, they (up to now over 300 groups and organizations) have formulated a list of demands which they have called “Agenda 2020”. These demands focus on a stronger solidarity, and a structured and lasting linking up of actors (Schliebener 2013). Education that is undertaken by service user organizations includes, for example, the EX-IN Training (experienced involvement). It is offered in 14 of the 16 federal states of Germany. This training program is addressed to people with psychiatric experience. The program’s goal is to educate these people so that they are able to work in education (e.g. social work, nursing, medicine) or to work as a peer counselor in social/psychiatric facilities like homes and day care centers. In the field of somatic conditions, self-help-organizations are involved in treatment issues. So, for example, in a national program by the government to improve care delivery for people with cancer that was initiated in 2008, patient representatives have participated in all working groups. These groups have worked on topics like the further development of early cancer diagnosis, strengthening patient orientation and conceptualizing patient information and so on. (Dierks, Schwartz 2012)

Because the importance of self-helpactivities for people’s health and well-being has been recognized by political institutions, public health insurance companies are obliged to sponsor self-help activities. This sponsoring consists of grants for projects and the sponsoring of nationwide organizations. Representatives of the self-help/service user organizations participate in the decisions on funding. Additionally, organizations get fees from their members, donations and public spending. Their limited financial resources are one major challenge of the organizations (Lisofsky 2013) The concept of “users” was first mentioned prominently in the document „Der Sachverständigenrat zur Begutachtung der Entwicklung in Gesundheitswesen (SVR)“ in 2000/2001. According to their definition, a user is anyone who has or has had access to the health system. This document has stimulated several activities, amongst others, the re- or new formulation of the rights of health service users. In 2003, a new health law regulating principles for the public health insurance companies (GKV Modernisierungsgesetz), also stipulated that patient and consumer associations have to be involved in decisions made by the committee that approves medical treatments (“ Gemeinsamer Bundesausschuss”). At the moment these participating organizations are: der Deutsche Behindertenrat, der Bundesverband Verbraucherzentrale, die Bundesarbeitsgemeinschaft der Patientenstellen und die Deutsche Arbeitsgemeinschaft Selbsthilfegruppen e.V. (DAG SHG e.V.) (Dierks, Schwartz, 2012). This committee (Gemeinsamer Bundesausschuss) is one of the most important ones in the German healthcare system, it consists of representatives for physicians and the public health insurance companies. In general, the self-help movement and self-organized projects have changed the theory and practice of social work within the last decades a great deal: besides professional social work and volunteers, a new kind of help has been established, whose members meet as equals. In competing for clients, traditional social work services have opened and changed and developed a considerable amount of self-analysis. Especially in the field of health care, self-help groups and organizations have gained great importance. They are seen as a necessary and useful addition and sometimes even as a “corrective factor” to treatment, assistance and support. Furthermore they are credible actors in the field of prevention (Mielenz 2013). Within theories of social work, the notion that service user play an important role in the success of the helping process, has gained more and more importance (Oelerich & Schaarschuch 2005).