Breaking Depression – 1 in 4 people will be personally affected by mental health problems, such as depression, during their lives

About this project

Janssen, together with EUFAMI and GAMIAN are developing practical resources to help people living with depression and family carers to have productive conversations with their doctors. In order for these to be useful, we want to understand the real-life experiences of people living with depression.

To do this, we are interviewing people living with depression, family carers and healthcare professionals. The topics that will be discussed with people living with depression include:

  • The first time your loved one talked about depression with a doctor or specialist
  • Your experience of your loved one’s diagnosis
  • Treatment and symptom management
  • Advice you have for others in these situations

How would the interview work?

  • The virtual interview will be no longer than 1-hour and will take place w/c 19 July (exact date is still TBC). It will likely take place via phone, unless you have a specific preference for an alternative platform.
  • The interview questions will be shared ahead of the call.
  • You will be interviewed in English by a representative from Langland, a communications agency based in London supporting Janssen with the project roll-out. The call will be recorded for the purpose of insight gathering and notetaking. The recording will be deleted 6 weeks after the interview.
  • The insights gathered from the interview will inform the educational resources we will create. All responses you provide will be anonymised and will not be attached to identifiable factors, such as your name or profession.

If you are interested in participating in this project please read the invitation attached to this email carefully and contact EUFAMI Executive Director Mr John Saunders directly by Friday 17th September 2021 at executive.director@eufami.org.

This is an important project and your help and involvement will be greatly appreciated.

For further information please see here.

 

 

 

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EUFAMI will be virtually present at the upcoming ECNP congress

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GAMIAN-Europe calls for concrete action to empower those affected by mental ill health

Empowering people affected by mental ill health is beneficial to individuals and their carers. It is also crucial for developing more patient centered, efficient and cost-effective health systems.

This is the key message of a comprehensive Call to Action launched by GAMIAN-Europe today.
The Call, developed with the direct input from a variety of leading EU-level and national (mental) health stakeholders, addresses what can be undertaken concretely to overcome the current pervasive disempowering attitudes and behaviours towards people affected by mental ill health.

GAMIAN-Europe, a patient-driven organisation advocating the rights of those affected by mental ill health, developed this Call as one of its priorities as the huge prevalence and impact of mental health conditions cannot be overlooked: 11 % of the European population experience mental disorders every year. The proportion of national health budgets devoted to mental health ranges between 4% to 13% across the EU.

Mental health conditions go hand in hand with substantial costs and consequences impacting on individuals, families and carers, health and social systems, the economy and society as a whole. As a consequence, there is an obvious need to address these conditions in the most effective and appropriate way. Empowered patients, managing their own care and treatment, can help address this need.

While the notion of and need for patient empowerment has gained ground for physical health conditions in recent years, this is not generally the case for those affected by mental ill health. Likewise, when it comes to physical health, patients are generally viewed as sufficiently competent to self-manage their treatment and care – as opposed to those affected by mental health problems. The Call therefore underlines that most people with mental ill health, most of the time, do have the competence to self-manage their treatment and care.

Clearly, perceptions and services should be changed to reflect the need for more empowerment and patient involvement in the field of mental health. The Call to Action urges the various different categories of stakeholders involved to take appropriate action to effect progress in their specific areas of expertise.

The Call to Action has already been endorsed by some 25 EU-level and national (mental) health-related organisations as well as by a number of MEPs. GAMIAN-Europe is now warmly inviting all interested organisations to also endorse the Call, as widespread support for its principles and recommendations will stimulate and facilitate implementation across the EU.

The Call to Action is available here: https://www.gamian.eu/wp-content/uploads/GAMIAN_Call_to_action_Final.pdf

Introduction of the Call and list of endorsers: https://www.gamian.eu/call-to-action-2609/

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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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Listen to my thoughts – by Mahdia Hossaini, Afghan refugee, journalist, writer and interpreter living in Athens, Greece

“We all have to face difficulties at some point in our lives. In these situations we normally turn to family and friends and the help we can usually offer to someone whose mental health has been compromised, is to persuade them to speak to a psychotherapist.

Whenever someone hears the word “refugee” the first things that come to mind are war and terror, but there are also other aspects that need to be considered, such as the refugees’ wellbeing and mental health problems, anxiety, suicide, PTSD, lack of self-confidence, depression and also the mental deterioration of rape and torture victims.

These are some of the burdens we refugees carry on our shoulders. Many people believe that all refugees suffer from mental health issues and therefore pose a danger to society.  But this is an unfair viewpoint and it only applies to a very small number of refugees. In fact, we should try to prevent people from thinking this way by educating them further and moreover, by setting up a support system for refugees with mental health problems and their families. Indeed, refugees often suffer from mental health problems, due to the fact that the majority of them come from countries that have faced years of war and violence, so naturally their mental health is damaged.

Have we given any thought on how we can actually help those refugees with mental health problems and their supporting families? Or, like many other people, do we believe that a psychoanalyst is the only person qualified to help those in need? There is more that can be done and should be done. I believe that all people can help one another, regardless of the situation or environment in which they find themselves. I am someone who believes that a single smile can change the life and destiny of another person. I don’t think this happens only in fairy tales.

I reckon that, what a refugee with mental health problems, and who is seeing a psychiatrist, needs above all else is a dedicated support system for themselves, a training programme for their caring families and last but not least, a responsible interpreter, as someone who can be the voice of the refugee in order to communicate his pain and suffering to a psychotherapist.  The latter could be considered as the first step towards a better understanding of how the refugee feels.

The psychological problems of a European citizen and a refugee may come from a very different place due to the much diverse backgrounds of each.  By creating a separate branch of specialist training that is geared towards helping psychoanalysts understand the refugee patient and their families better could be another solution to reducing the cultural chasm between them.  I think the training should include lessons in culture, education, beliefs and traditions of refugees in different countries.

In order for refugees to become fully integrated into society, they need to be accepted and we must give them all the support we can. We have to realise that refugees don’t need pity or compassion. Pity and compassion as forms of aid is not the solution to the problem. What people need is to be listened to, understood and acknowledged. Sometimes all it takes is a bit of time, the right words and the right form of aid to solve a problem. Other times, we can show our respect for the mental and psychological state of our fellow humans by simply being there for them and gently supporting them through their journey of recovery.”

 

– Artwork by Shamsia Hassani

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EUFAMI Press Statement to mark World Mental Health Day 2021

Family Carers provide on average 43 hours per week caring for someone with a mental health problem.

To mark World Mental Health Day 2021, EUFAMI is releasing the full report on its study of the activities of carers of persons with mental health problems. The survey report was conducted in collaboration with the London School of Economics and Political Science.

Our survey of more than 700 caregivers across Europe and Canada highlights the tremendous, and too often hidden, value of caregiving. Potentially without the input of these, mainly close family, carers, undoubtedly some support would need to be provided instead by health and social care systems. In short, informal carers are fundamental to the functioning of any health and social care system.

Our report provides key findings such as:

The average length of the caring week exceeds the length of the working week.

On average informal carers provide more than 43 hours of care every week, well in excess of the average working week. Average caring times did not differ significantly for different mental health problems. 41% of all carers have to balance caring with employment.

Carers who live with the person they support have much longer ‘caring weeks’.

Carers who live with the person they support provide significantly higher levels of care than carers who live apart from the person they support; on average more than 65 hours a week compared to less than 26 hours per week.

The estimated economic value of informal care time is substantial.

Across all countries, the average weekly value of caring time, as well as travel time and travel expenses, would be up to €1,441. Overall, if the weekly value of caring is extrapolated over an entire year then the average value of caring hours would range between €74,907 or €61,026 depending on the costs measured.

Speaking at the publication of the report, the Acting President of EUFAMI, Mr André Decraene, said:

 ‘We believe that this report can act as a catalyst for action. This is even more important now than when this study was commissioned. The reliance on family carers will probably have increased, while challenges faced by caregivers and the risks of isolation may well be heightened during the ongoing COVID-19 pandemic’.

John Saunders, Executive Director of EUFAMI commented:

 ‘It is critical to invest in measures to support caregivers and identify potential risk factors that might lead to a breakdown in caregiving support.  This must include payments for carers and professional advice, support and training’.

For the full report on the Value of Caring, key links on the findings and recommendations of the survey in five different languages (English, French, Spanish, Dutch and Finnish), please see here.

For information on World Mental Health Day please visit: www.wfmh.global/

Contact Executive Director John Saunders via email at executive.director@eufami.org  or by phone at 00353 879271292.

 

About EUFAMI

EUFAMI was founded in 1992 in Belgium after a congress where carers from all over Europe shared their experiences of helplessness and frustration when living with severe mental illness. They resolved to work together to help both themselves and the people they cared for.

EUFAMI’s mission is to represent all family members of persons affected by severe mental ill health at European level so that their rights and interests are recognised and protected.

About World Mental Health Day

World Mental Health Day was first celebrated in 1992 at the initiative taken by the World Federation of Mental Health. The overall objective of World Mental Health Day is to raise awareness of mental health issues around the world, to educate and to advocate against social stigma and to mobilise efforts in support of mental health.

The theme for WMHD 2021 is “Mental Health in an Unequal World”. This theme was chosen by a global vote including WFMH members, stakeholders and supporters because the world is increasingly polarized due to highlighted inequalities on account of one’s race and/or ethnicity, sexual orientation, gender identity and people living with mental health issues. Such inequalities have an impact on people’s mental health – WFMH

 

 

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