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.

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:

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’.

Uppsala Health Summit – Pathways to Lifelong Mental Wellbeing 18-21 October 2021.

The Uppsala Health Summit – Pathways to Lifelong Mental Wellbeing, will take place from 18-21 October 2021.

The meeting will provide a unique interdisciplinary platform for researchers, experts and practitioners to present and discuss innovative ways to prevent and intervene for better mental health globally.