In Memoriam – Hildegunt Schütt

The relatives’ movement in Germany mourns Hildegunt Schütt, who died on November 1, 2021, at the age of 95 in Bonn.

Ms Schütt, who actually studied music and later worked in nursing, first came into contact with mental health in the 1970s. As an EEG assistant in a neurologist’s practice, she had an insight into the inadequacies of psychiatric care. When one of her children fell ill, she experienced a brutal reality as a relative. German mental health of this time – as the psychiatrist Heinz Häfner puts it – was “morally, professionally and materially bankrupt”. In 1970 the federal government convened a commission of experts on the state of psychiatry under the leadership of Professors Häfner and Caspar Kulenkampff. The reform that was introduced was slow to get underway and against much opposition. And the reform was a project by psychiatry professionals. Those affected – the sick themselves and their relatives – had no voice in it.

Hildegunt Schütt was one of the first who refused to accept this, who was not intimidated by real or supposed expertise, who countered the alleged professional necessities with a critical understanding and philanthropy. She was encouraged by the spirit of awakening in society that had been felt since the student revolt in 1968. What should prevent the relatives from speaking up and contributing their interests to the reform process?

In 1980 the association “Help for the mentally ill” was founded, one of the first relatives’ associations in the Federal Republic of Germany. This gave the relatives a forum for mutual support and advice. At the same time, the association wanted to act as a motor for the concrete improvement of assistance on site. Therefore, it was necessary to initiate new offers of care in self-help to remedy the deficiencies of mental health. Hildegunt Schütt herself took on the organisational and professional responsibility for setting up an “external work training”, a completely new idea, because the needs of mentally ill people were unknown to the welfare authorities as they were all sent to workshops for mentally handicapped people. This offer nowadays has 48 publicly funded training places. The “external work training” did not only have a positive effect on the participants but by personally addressing employers from a wide variety of industries, a network of help for the mentally ill emerged, which has proven to be highly effective in the fight against prejudice and stigmatisation.

In 1982 the book “Acquittal of the Family” by Klaus Dörner, Albrecht Egetmeyer and Konstanze Koenning was published, which gave the relatives movement in the FRG an enormous boost. Hildegunt Schütt played an essential part in the endeavor to bring together the relatives’ initiatives and associations that had arisen in various places in the FRG. So, it is not surprising that when the Federal Association of Members of Mentally Ill People was founded (today: Bundesverband der Angehörigen psychisch erkrankter Menschen – BapK – e.V.) she was elected first chairwoman in 1985 and held this office for eight years. Then she accepted the proposed office of honorary chairman.

Typical of Hildegunt Schütt was her ability to bring people from different areas together and to motivate them to act together. Consequently, in 1992 she took part in the founding meeting of the European Association of Families of Mentally Ill People – EUFAMI – in Leuven / Belgium and signed the founding document for the BApK.

Hildegunt Schütt has received numerous awards for her voluntary work, including the Rotary Club Bonn Prize (2004), the Rhenanian Prize for Social Commitment from the Rhineland Regional Association (2007), the Else Mayer Foundation Prize (2011), the honorary prize of the Christian democrats in Bonn in recognition for her committed voluntary work (2011) and the Sebastian Dani Medal of the social democratic parliamentary group in the Bonn City Council (2014).

Hildegunt Schütt took part in the activities of the associations she founded or initiated until her old age. She had an open ear for everyone, was able to give advice and encourage people. It was only the restrictions on public life caused by the Covid-19 pandemic that set limits to their work.

The importance of Hildegunt Schütt’s work for family self-help in German mental health can hardly be over-estimated. With her alert attention, her courage, her tireless creativity and warm, compassionate humanity, she has stood up for the cause of the weakest in our society. Anyone who was lucky enough to meet her personally will keep her winning smile in their memory forever. She has created an enormous work that will give protection and help to generations of people in distress.

Hildegunt Schütt leaves behind 8 children, 18 grandchildren and 13 great-grandchildren.

Friedrich Leidinger

EUFAMI Secretary

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The Value of Caring Survey – Findings and Recommendations

EUFAMI and the Department of Health Policy of the London School of Economics and Political Science (LSE) are pleased to inform that the 2-year research study on the Value of Caring is completed and the resources are publicly available.

EUFAMI’s ‘Caring4Carers’ survey found that the majority of informal caregivers are women, caring for a son or daughter and spending an average of 22 hours a week in caregiving activities. The stress placed in informal caregivers can be significant. Approximately 40 per cent report worrying about their own physical health, with nearly 1/3 fearing that their role as a caregiver detrimentally impacts their physical health. The caregiver’s mental health may also be at risk: nearly 1 in 3 feel depressed. In addition to health stress comes financial stress and social isolation. This culminates in a sizeable tie investment, equivalent to a job, however often without adequate support structures.

The Value of Caring is a project which builds on our Caring4Carers survey by looking at how unpaid (informal) care provided by family members and other unpaid carers is an important element of any mental health system, yet too often these contributions are not fully recognised or appreciated. Policy-makers are unlikely to be aware of the extent of the cost if they had to replace all of this ‘informal’ care with formal mental health services and support.

EUFAMI, in collaboration with the London School of Economics, is looking to obtain credible evidence on the economic contribution of family/informal carers of persons with severe mental ill health (in particular schizophrenia, bipolar disorder and major depression) in order to share with policy-makers at European and national level and encourage investment in caring for carers, i.e investment in policies and services which support family/informal carers and strengthen joint advocacy activities EUFAMI undertakes with other NGOs.

Please, find here the resource documents relevant to the research study in English, German, French, Spanish, Finnish and Dutch:

Value of Caring – Full Report

Cost of Caring – Background Information

Cost of Caring – Background Information – Spreads

Cost of Caring – Research Study – Findings -English

Cost of Caring – Research Study – Recommendations – English

Cost of Caring – Research Study – Findings – German

Cost of Caring – Research Study – Recommendations – German

Cost of Caring – Research Study – Findings – French

Cost of Caring – Research Study – Recommendations – French

Cost of Caring – Research Study – Findings – Spanish

Cost of Caring – Research Study – Recommendations – Spanish

Cost of Caring – Research Study – Findings- Finnish

Cost of Caring – Research Study – Recommendations – Finnish

Cost of Caring – Research Study – Findings – Dutch

Cost of Caring – Research Study – Recommendations – Dutch

Cost of Caring – Calculator

Calculator – Guide

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