EUFAMI will be virtually present at the upcoming ECNP congress
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New ways of defining economic and societal goals are emerging. The old GDP-centric model is giving way to approaches that place human and environmental well-being at the heart of government policy. The Sustainable Development Goals are a crucial example of this, as is the growing emphasis on the need to ensure ‘inclusive growth’ and reduced inequalities. If the EU is to respond to the needs and concerns of its citizens, it is vital that the new European institutions should embrace the paradigm shift. Citizens’ well-being must be at the centre of EU policies.
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/
EUFAMI supports EBC’s Statement calling on the European Commission, European Parliament, and the Council of the EU to increase the future budget of “Horizon Europe” to a minimum of €120 billion. The call also emphasises that it is essential that a much higher proportion of the research budget is allocated to the “health” cluster.
The Work Programme 2018 will focus resources on European Reference Networks for rare diseases, health promotion, mitigating cross-border health threats and medical devices. The deadline for submitting proposals is 26 April 2018.
Read more here
EUFAMI’s Prospect Training Programmes
The European Federation of Families of People with Mental Illness (EUFAMI) is an international non-profit organisation which represents all family members of persons affected by severe mental ill health at European level so that their rights and interests are recognised and protected.
The Prospect Training programmes were originally developed in a project lasting 3 years between 2001 and 2004. The project successfully obtained funding obtained from the European Commission under the Leonardo da Vinci programme and from an educational grant from Eli Lilly and Company.
EUFAMI managed and coordinated the project with 14 member organisations and the project produced 3 training programmes and a common ground module for:
The Prospect Training Programmes are considered unique because they are not based on “information giving” rather on the participants’ own personal experiences. The facilitators have first-hand experience from the group they facilitate. It is for example a family carer who facilitates the Prospect Family and Friends training programme. This peer to peer communication encourages the participants to share their own experiences in order to open up to new ways of thinking and perspectives. Prospect does not provide the answers but looks at the possible solutions. By way of a structured group process, the participants are presented with ideas based on models of best practice and interactive exercises.
The global philosophy of the Prospect Training Programmes is to break the cycle of social isolation, limitation and discrimination and enable participants to embark upon their own a path towards “recovery”.
Since 2006 the Prospect Training Programmes have continued to be provided in various EUFAMI member countries. In 2019 EUFAMI successfully developed a new partnership with the Janssen EMEA Fund (Johnson & Johnson Foundation) which has enabled EUFAMI to work with the active Prospect members and update the Family and Friends Training Programme.
There are six EUFAMI member organisations taking part in the updating process:
|FinFami||Mielenterveysomaisten keskusliitto ry (Finland)|
|SALUD MENTAL ESPAÑA||Confederación Salud Mental España (Spain)|
|Schizofreniförbundet||Schizophrenia Association (Sweden)|
|ŠENT||Slovensko Združenje za Duševno Zdravje (Slovenia)|
|SYMPATHEA||Celonárodní Organizace P?íbuzných Duševn? Nemocných (Czech Republic)|
|UNAFAM||Union Nationale de Familles et Amis de Personnes Malades et/ou handicapées psychiques (France)|
In March 2020, a Kick-Off Event was planned for the Prospect Plus Project.
Due to the Covid19 pandemic, this meeting could not take place face to face as was originally planned. The meeting adapted to the new circumstances and was held online.
There was initial reluctance to the idea of using an online virtual meeting platform as this was first-time experience for nearly all the participants. However, after daily sessions, spread over 3 days, the meeting proved to be very successful and created an initial concept for the updating process of the EUFAMI Family and Friends Prospect Training Programme.
Since the “Kick Off Event” there have now been a total 11 virtual online project meetings. A concept version of the updated training programme has been produced and is being now tested in the various project partner countries.
Once all the National Test Training Sessions have taken place and all evaluative feedback has been collected. The Project Partners will take part in an Evaluation Event where the updated version will be finalised. The Evaluation Event will take place in the first quarter of 2021.The platform for this meeting, due to the Covid19 measures and restrictions, has not yet been decided.
Once the updated version of the Prospect Family & Friends Training Programme is finalised, EUFAMI aims to continue the updating process for the:
During this process EUFAMI intends to continue providing a central coordination and management basis to raise the profile of Prospect activities in Europe and to:
Brussels, 23 March 2021
In a meeting of the MEP Alliance for Mental Health, held today, some 100 representatives of interested EU and national level organisations and MEPs underlined the need and voiced their support for a dedicated European Year for Mental Health, to be instigated in the short term. EUFAMI attended as the European voice of family organisations in mental health.
Background to this event, organised by GAMIAN-Europe, is the fact that mental health and related policy still are a relatively low policy priority, despite its huge prevalence, cost and impact – on individuals, families and carers, health and social systems, employers, communities and the economy as a whole.
In addition, the EU level is not following through its previous ‘specific’ mental health approach and is now treating mental health as part of its general actions on chronic conditions.
The meeting was the follow up to a smaller event, held in November, in which the idea for a European Year was explored by leading EU-wide mental health-related organisations. This led to the elaboration of a discussion paper which served as the background for today’s discussions.
Maria Walsh MEP, co-chair of the MEP Alliance for Mental Health already stated her intention to campaign for such a Year during and after the 2019 European elections; in today’s meeting she underlined that ‘ there is an urgent need to ensure awareness – with policymakers, service providers, the general public – of the importance of mental health in all its aspects, ranging from prevention, to diagnosis, treatment, care and cure. She stated that ‘the time is now to make mental health everybody’s business as the current COVID-19 pandemic truly puts the spotlight on the huge importance of mental health and well-being’.
The Year would have a general, population mental health focus as well as well as aim to increase the understanding of the specific needs of patients and groups at risk.
MEPs Estrella Dura Ferrandis, Radka Maxova, Alex Agius Saliba, Tomas Zdechovsky, Juozas Olekas, Luisa Regimenti, Josiane Cutajar and Alviina Alametsa all expressed their commitment to advocating for a European Year, ensuring that it becomes a reality.
‘We need a better and wider understanding of the importance and impact of mental health as wellas effective policy, practice and services in this area’, Maria Walsh MEP said. ‘We can improve people’s well-being while ultimately saving resources. The time is now to make mental health everybody’s business as the current COVID-19 pandemic truly puts the spotlight on the huge importance of mental health and well-being’.
The results of today’s discussion will feed into the development of a comprehensive campaign plan and decisions on aims, potential themes, activities and structure of a European Year for Mental Health.
Notes for editors
1 Some more information on the MEP Alliance for Mental Health:
The MEP Alliance for Mental Health (established in 2009 as the European Parliament Interest Group on Mental Health, Wellbeing and Brain Disorders) aims to bring together MEPs and relevant stakeholders advocate the development of sound EU policies which contribute to the prevention of mental ill health and ensure appropriate and high quality services and person-centred care, empowering those affected.
The Group meets 2-3 times a year; these meetings provide an opportunity to underline the need for and propose EU-level activities to take the field of mental health into account in a variety of areas and plan advocacy activities. The secretariat for this Group is being provided by GAMIAN-Europe.
|Agius Saliba||Alex||Malta||S&D (co-chair)|
2 Some information on GAMIAN-Europe
GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe), a patient-driven pan-European organisation, represents the interests of persons affected by mental illness and advocates for their rights. Its main activities relate to advocacy, information and education, developing partnerships and capacity building.
Nigel Olisa firstname.lastname@example.org
3 Discussion paper on a European Year of Mental Health
Leuven, 1st March 2021
Dear Friends of EUFAMI,
I am writing formally to announce the results of EUFAMI officer’s election which was held on the 5th of February 2021.
Today 1st March 2021, following a transition period, the new officers will commence their positions.
The new officers are:
Now follows a brief message from the new President Urs Würsch:
“For over 20 years, I have worked for the Swiss family members organization (VASK) and I am well aware of the situation that carers are confronted with in their daily life. I have worked successfully for many years as CEO for my own company. I speak fluent German, English and French and I have knowledge of Italian. I am convinced that EUFAMI can continue to take a very active role in supporting EUFAMI family member organizations. With great respect, I take the responsibility to serve EUFAMI. Our voices will be heard!”
With kind regards
With sad regret, EUFAMI would like to inform you about the death of Gusta Frooninckx.
Gusta is well known and respected by many EUFAMI member organisations.
Gusta was not only the founder of EUFAMI and of our member Similes in Belgium, she was also an artist.
EUFAMI would like to offer our deepest sympathy to the family and friends of Gusta Frooninckx.
In 2017, Gusta gave an interview for EUFAMI and if you would like you can use the following link to re-read this.
EUFAMI (European Federation of Associations of Families affected by mental illness) and LSE (The London School of Economics and Political Science/Policy and Evaluation Centre) are pleased to inform that the 2-year research study on the ‘Value of Caring’ is now completed and the resources are publicly available.
The project is a collaboration between EUFAMI (European Federation of Family Associations of people affected by mental illness) and the London School of Economics and Political Science (LSE). The main project researchers are David McDaid and A-La Park, Associate and Assistant Professorial Research Fellow respectively in Health Policy and Health Economics within the Care Policy and Evaluation Centre at LSE.
This survey of more than 700 informal caregivers across Europe and Canada highlights the tremendous and too often hidden value of caregiving. Potentially without the input of these carers (mainly close family) some of the support would need to be provided instead by national health and social care systems.
The aims of the research are firstly to better understand components of the economic impact of informal care in specific country contexts. Secondly, to make an estimate the economic value of informal caring, and separately provide a simple tool that can be used to help refine estimates of the value of informal caring.
Key findings from the research study indicate that it is critical to invest in support measures for these informal caregivers and identify potential risk factors that might lead to a breakdown in the informal care they provide. Family members and other informal carers who support people with mental health problems, are an essential part of mental health support systems. However, usually their contributions are not fully recognised, and this results in insufficient support for their own health and welfare needs.
An example from the key findings would be that 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. Also, each hour of caring time is valued by carers to be between €23.62 and €28.75. This indicates that the economic value of informal care is substantial: on a year basis between €61,026 and €74,907.
Please find here a link to the relevant webpage to download resources: