EUSEM Call for patient representatives with an interest in Emergency Medicine

Our friends at the European Patients’ Forum (EPF) have kindly asked to assist in their quest in search for patient representatives with a particular interest or experience in Emergency Medicine and who would be interested in participating in the following project:

“The European Society for Emergency Medicine (EUSEM) is currently working on a project to define an initial set of Quality Indicators for Emergency Departments in Europe. They will soon conduct a Delphi process that aims to define European wide quality standards for Emergency Care in the Emergency Departments. 

They are currently looking for patient representatives with a particular interest or experience in Emergency Medicine who can therefore provide an informed perspective.

The expected workload will not be onerous. The selected participant will receive a list of the items (50, in total) and will be asked to choose those quality markers which she/he regards as most important for the Emergency Departments. Every participant will have the possibility to select the 20 most important markers and to grade those for importance by rating them. This selection will be sent to the EUSEM office where it will be anonymized for further analysis”.  

If you know a patient representative with a particular interest or experience in Emergency Medicine who could be interested in participating, please don’t hesitate to contact policy@eu-patient.eu.

Thank you

 

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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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The Prospect Plus Project Phase II – Press Statement

The Prospect Project is a peer-to-peer training programme designed by EUFAMI to empower families in mental health.

EUFAMI is very pleased to announce that the collaborative partnership with Johnson & Johnson Foundation formed in 2019, will continue.

Earlier this year, the Prospect Plus project successfully completed the first phase and produced the revised Prospect Family and Friends Training Programme. This was accomplished with a project partnership of 6 EUFAMI member organisations who worked on, and invaluably contributed to, updating and revising the original content and materials from 2004.

The EUFAMI Acting President, André Decraene has commented that:

“Prospect is a growing European community and with our collaborative partnership with the Johnson & Johnson Foundation, EUFAMI hopes to support its growth and outreach to all family and friend carers”

The second phase of the Prospect Plus project is more ambitious. Over the next 2 years, EUFAMI will lead the updating process of the Prospect Training Program for People with Self-Experience, the Prospect training for Health and Social Care Professional and the Common Ground Module. This is an essential step for the Prospect Training Programmes as a whole.

The second phase of the Prospect Plus project will also develop and create a digital platform to support present and future EUFAMI members who implement Prospect.

For this ambitious phase, EUFAMI is very happy to have once again, Gwen Crawford, as the project leader. Commenting on the launch, Gwen said:

 “I am delighted to form part of the EUFAMI team, and it is a privilege to take on this next phase of the Prospect Plus project”

The work on this phase has already commenced. Updates on the process will be posted on the EUFAMI website and social media.

For further information on Prospect and Prospect Plus, please see here.

For background information, please feel free to contact Gwen Crawford via email: projects@eufami.org

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OECD- Well-being and Mental Health – Towards an integrated policy approach 6-9 December 2021

We are pleased to inform you that the Organisation for Economic Co-operation and Development (OECD) will be hosting a series of online events on Well-being and Mental Health – Towards an integrated policy approach.

This four-day virtual conference will take place from 6-9 December 2021 and follow the recent OECD publication of A New Benchmark for Mental Health Systems: Tackling the Social and Economic Costs of Mental Ill-Health. The events will explore the interrelationships between mental health and people’s economic, social, environmental and relational well-being. Experts and key stakeholders will take stock of existing work on the social determinants of population mental health, consider measurement challenges and examine lessons learned from integrated policy approaches so far.

These events mark the start of a new OECD project applying a well-being lens to population mental health, drawing on the different economic, social, environmental and relational dimensions of people’s lives highlighted by the OECD’s Well-being Framework, and building on synergies with the whole-of-government approaches to well-being now under development in a number of countries. The events will take stock of existing work that considers the multidimensional drivers and social determinants of mental health; further develop measures of population mental health status; and examine what lessons can be learned from the integrated policy approaches to mental health promotion that have been put into practice so far. It is organised by the OECD Centre for Well-Being, Inclusion, Sustainability and Equal Opportunity (WISE) together with the Directorate for Employment, Labour and Social Affairs (ELS).

The agenda of the online events can be found here and you are invited to register and attend, if you are interested, by clicking here.

 

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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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