Alleviating suffering and distress, protecting families and enabling disabled people to participate in life and the community - these are the standards that are anchored in our constitution, laws and society's consciousness. They also apply to mentally ill people.
Their numbers are not small: in Germany, there are around half a million people with chronic mental health problems, most of them living with their families. These families are often left alone with their problems and burdens and overtaxed by them.
Against this backdrop, self-help groups and State associations formed in all Federal States many years ago in order to provide mutual support and better represent the interests of families. In 1985, the Federal Association of Families of People with Mental Illness was founded.
Families with mentally ill members are organised on three levels:
The individual State associations are members of the Federal Association. The highest body is the general assembly which meets once a year. It makes all the important substantive, personnel and financial decisions. The Committee consists of seven members who – as with the committees of the State associations – work as volunteers.
The national business office is based in Bonn.
The national Association is funded from the subscription fees of its members, public grants, funding assistance and donations. The funds are used in accordance with the principles of charitable status, accountability, cost minimisation and transparency; their use is documented in an annual report.
We base our work on Article 3 of the constitution. This states: nobody may be disadvantaged on account of their disability. This principle must also be put into practice for the mentally ill. These people and their families still suffer from exclusion and stigmatisation. Treating them tolerantly as a matter of course is prevented by a lack of knowledge, particularly of schizophrenia and depression, and by clichés and prejudice. We fight against this stigmatisation and discrimination on all social and political levels.
We want enlightened, supportive and self-confident families that know their rights and request the help they need to cope with their difficult situation. We use the term of family to mean all members of one family – whether ill or healthy. This is what we mean by the term "Family Self-Help Psychiatry". The whole family is affected by mental illness. From this, we derive the legitimisation for our desire to represent the interests of sick family members in public discussions.
Mental suffering and emotional disabilities are part of human existence, and they cannot be ignored or denied. We regard serious mental disorders as an illness and work to ensure that they are treated as such. Just as with somatic illnesses, they can be successfully treated in most cases. The mentally ill must not be put in a worse position or taken less seriously than those with somatic illnesses. They have a right to treatment in accordance with the latest scientific insights, to the deployment of effective drugs with the lowest possible side-effects and to the best possible rehabilitation.
We work to ensure a discussion on an equal footing between patients, families and the experts of psychiatric care. In addition, the Association advocates dialogue and working with institutions whose social mission is to support self-help such as health insurance companies and executive organs of the government.
We pursue the following detailed objectives with authorities, insurers and those with political responsibility:
The experience of families can be very useful for others in a similar position. An essential part of the Association's work consists in promoting this exchange of experience. It comprises mutual support in the sense of providing help for self-help, information and advice.
On a local level, this takes place in the self-help groups. The State associations can be helpful in forming and supporting these groups. These provide information on disciplinary and State-specific issues in their own events. The Federal Association also organises informational events on therapeutic, social and other questions. In this way, a network is created which rescues families from isolation and gives them support in crises.
If people who are ill are not able to sufficiently represent their own interests, the families must perform this task in their place. The Federal Association and State associations support them in the process with their own publications, free advice, the provision of partners or contacts, addresses and references.
One source of information with internal and external effects is the magazine "Psychosoziale Umschau" of which the Federal Association is the co-publisher. Its website is provided through the psychiatric network www.psychiatrie.de.
The work of State associations and the State Association is also aimed at improving the social environment in favour of the mentally ill and their families. Among other things, this includes enlightening the public about mental illness in order to remove false ideas and stigmatisation.
The task of the Federal Association remains to represent the political demands of the State associations on a national level and to provide them with information from its sphere of work. In the process, the Association collaborates with all people and institutions who/which support its objectives in their entirety or in certain areas.
We convey the experience and knowledge of the families to the decision-makers and multipliers, point out shortcomings, defects and injustices and work for their correction. As the point of contact, we are always available when the subject turns to mental illness and its effect on families.
Representatives of the Federal Association work in international family associations such as EUFAMI (European Union of Families Organizations) and WFSAD (World Fellowship for Schizophrenia and Allied Disorders).
Volunteers are working with great commitment on all levels of family self-help psychiatry. Family self-help psychiatry has now become a voice which can no longer be overheard. Families with mentally ill members are taking their fate in their own hands and following the motto:
Living with the mentally ill – with self-confidence and in solidarity.
Bonn, November 2012