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:

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.

All Policies for a Healthy Europe – Improving citizen’s well-being

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.

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.

EUFAMI supports EBC’s Statement calling on the European Commission

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.

Third EU Health Programme – 2018 call for proposals open

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.

Priorities for Future Research on Reducing and Stopping Psychiatric Medicines (PROTECT) study – Survey deadline December 31st 2022

Dear Reader,

Please see below for an important message from our respectful EUFAMI Board Director, Senior Lecturer and Associate Professor in Pharmacology at Uppsala University, Sweden, Dr Åsa Konradsson-Geuken.

“We are trying to increase responses of health practitioners to the Priorities for Future Research on Reducing and Stopping Psychiatric Medicines (PROTECT) study.  If you haven’t participated please do consider participating  or passing the link to you network. The survey will close on the  31^st December.

There are many unanswered questions about the process of reducing and stopping psychiatric medicines (commonly referred to as ‘tapering’) and how best to do it. It is important that future research focuses on the questions that are important to people with lived experience of taking and/or stopping any of these medicines, family members, carers/supporters and healthcare professionals.
The PROTECT study team, in partnership with the James Lind Alliance, has set up this priority setting partnership to identify the Top 10 priorities for future research about reducing and stopping psychiatric medicines. This study could help to change the research agenda which will allow future research to focus on the most important questions. The survey will take you about 5  minutes to complete.

EUFAMI Position Paper on Coercive Practice in Mental Health Services

Coercive practice, such as involuntary admission and coercive measures, such as seclusion, restraints and forced medication, are used in mental health services in all European countries. Compulsory treatment in the community is used in some countries. The rates of involuntary hospitalisations in Europe differ between countries[1].

EUFAMI believes that coercive practice, even when used as a necessary last resort based on national law, is essentially the failure of mental health services to respond with non-coercive alternatives.

In order to minimize coercive practice in mental health, training should be mandatory on topics of de-escalation skills, human rights, medical ethics, mental health legislation, alternatives to involuntary admission and use of coercive measure as well as on recovery culture.

Coercive practice should only occur as a last resort in circumstances when no less restrictive alternative will respond adequately to the risk of physical harm to the person themselves or others.

1] Marie Chieze1, Samia Hurst2, Stefan Kaiser1 and Othman Sentissi1, “Effects of Seclusion and Restraint in Adult Psychiatry: A Systematic Review”

Strategic Plan 2022-2024 – Involving Families & Carers

Since its founding in 1992, EUFAMI has dedicated itself to supporting and advocating on behalf of family members and carers in mental health across Europe. We continue to support the rights of involved families and carers to be part of the process of service delivery. We believe family members have a significant role to play in the recovery of people with mental illness.

Over the thirty years of our existence, EUFAMI has witnessed many positive changes in the quantity and quality of mental health services across Europe. We are proud to have played our part in this progress.

There is more to be done, however, including the delivery of family and carer support and training by mental health services, the continued reduction of stigma as it affects family members and the strengthening of the family voice in many countries.

EUFAMI’s new Strategic Plan builds on previous documents and renews our commitment to more focused activities in support of national member organisations and to espouse the need for advocacy and research, which is aimed specifically on the issues that affect families as carers of persons with mental illness.