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

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

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:

Introduction of the Call and list of endorsers:

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EPF COVID-19 Survey – Your Input is Needed!

Our friends at EPF (European Patients’ Forum), have released a call on a follow-up survey from one conducted by the organisation between September to October 2020 (the report is available here).
The report at the time aimed to gather more information on the lived experience and impact of the COVID 19 pandemic on patients and patients’ organisations. As the COVID-19 pandemic is not yet over, and it continues to impact the daily life of many patients and patients’ organisations, EPF decided to do a follow-up survey.

This time, the survey is presented as two separate questionnaires. One for patients’ organisations (i.e., for you to fill in) and another for individual patients. This latter survey, we will kindly ask you to disseminate it among your networks. It is available in five different languages.

Ø  The survey for patients’ organisations (in English only) is accessible here. We kindly ask that only one staff member per organisation completes the survey.

Ø  The survey for individual patients (available in English, French, German, Spanish and Italian) is accessible here. To change the language, simply select your preferred one in the top-right corner of the page. In there, the survey can also be switched to “screen reader mode”.

The deadline for this survey is 25 September at 23.59 (CEST).

For questions on the survey feel free to reach out to Juan Jose Fernandez Romero, EPF’s Policy Officer, at

Please note that the survey for individual patients is done within the scope of the Periscope project, of which consortium EPF is a member. For questions on the project, you may liaise with Lyudmil Ninov, EPF’s Senior Programme Officer, at

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