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 23rd July 2021 at executive.director@eufami.org.

This is an important project and your help and involvement will be greatly appreciated.

 

 

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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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EUFAMI Celebrates International Day Of Families – Saturday 15th May

The International Day of Families celebrates the importance of families, societies and cultures around the world. It was first observed on 15th May 1994 after the UN General Assembly recognised the value of the basic family system in 1993. This day has become a source to attract the attention of, not just policy-makers, but also the public, and increase awareness of the economic and social issues related to families, and most critically, of the mental health issues family members are affected by.

The day calls for worldwide celebration, especially this year, as the ongoing pandemic has prompted societies to realise the importance of safeguarding the well-being of families. These times can be especially tough on people’s mental health and in turn, on their extended family members who have unconditionally taken up the role of carers for their loved ones.

The representation of family members of persons affected by severe mental ill health has been EUFAMI’s mission since 1992. Our vision is these families receive the understanding and support they need to participate in their community as they choose, and share in the social, economic and political rights of that community, without exclusion or discrimination.

EUFAMI, as an advocate of family carers across Europe, has become the voice of those families by building networks and enhancing communication with other European institutions and international mental health organisations, by dissemination of the institutions’ activities and campaigns and furthermore, by leading the fight against stigma and emphasising the importance of protecting the human rights of people affected by mental ill health and their families.

In all countries and cultures families are the pillar of every functional community. They come in all shapes and sizes and each and every one of them consist of unique individual members. Family members are there to support each other and grow together. More often than not, this bond comes with a number of challenges, especially challenges related to mental health issues. EUFAMI has answered the call for help and aims, in all ways, to defend the rights of people with mental ill health and their families.

 

 

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Survey Report – The Impact of COVID-19 Pandemic on Patients & Patient Organisations

EPF is happy to publish the results of its survey on the impact of the COVID-19 pandemic on patients and patient organisations. The aim of this survey was to gather more information on the lived experience and impact of the COVID-19 pandemic on patients with chronic conditions, their communities and on patient organisations.

Conducted from 18 September to 18 October 2020, the results of this survey provide EPF with evidence for our policy and advocacy work. The results will support us in providing the patient perspective to several European initiatives relating to COVID-19, the strengthening of health systems and the digital transformation of healthcare. We hope that recommendations arising from this survey will ultimately inform European and national health policy.

This survey received a total of 125 responses, 46% were patient organisations and 54% were individual patients or carers. Individual patients or their carers answered questions related to the challenges they faced, access to healthcare, their concerns and the quality of information provided by governments and healthcare professionals during the pandemic. The results of this survey show that there is significant room for improvement for both healthcare providers and national authorities on the clarity of information, communication and public health guidance.

Overall, 57 patient organisations responded to the survey with 43% representing European or national organisations. They were asked a variety of questions revolving around their operations during the pandemic, opinions on protection measures and their involvement in the management of the pandemic. These survey results indicate that the pandemic had a huge impact not only on the financial stability of patient organisations, but also on the way they work.

Ultimately, this survey serves as the testimony that, even as funding opportunities decreased, and activities became more difficult due to the ongoing pandemic, patient organisations continued working at the forefront of advocacy to advance the interests of patients and their carers.

The results of this initial survey will be used by EPF to support its ongoing European initiatives and advocacy activities relating to COVID-19. Moreover, a second edition of this survey will follow.

For any questions related to the survey report or how to get involved in the next edition, please contact policy@eu-patient.eu.

RELATED INFORMATION

Survey Report – The Impact of COVID-19 Pandemic on Patients & Patient Organisations

Infographics on Impact of the Covid-19 Pandemic on Patients and Patient Organisations

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The “A Better Prospect” Virtual Event took place on Saturday, 17 April 2021

This event was put together for the EUFAMI member organisations who implement the Prospect Training Programmes and their Prospect Faciliators. There were over 45 participants consisting of National Prospect Coordinators, National Prospect Faciliators and invited external guest speakers 😊

The event aimed to:

  • celebrate
  • listen and learn from each other through sharing best practice
  • learn new skills

With a very intense one day programme of

  • presentations
  • workshops
  • Q&A (question and answer) sessions

A Celebration!

The event brings the Prospect Plus Project towards its final phase.

For over a year the Prospect Plus project partners have worked on revising and updating the 2006 original Prospect Training Programme for Family and Friends, and this work is now almost completed. The Prospect project member test training sessions, have all taken place. A formal review of the Training Programme content is pending. The design is of the training manual underway. Finally, the translation of the Training Programme from the English language into the Czech Republic, Finnish, French, Slovenian and Spanish languages will shortly take place. For all these reasons it is time for celebration!

The whole project process was very much influenced by the Covid-19 pandemic. The “Kick-Off” event was adapted at very short notice to the online environment. All further project meetings continued online. Still today, the project partners have not met face-to-face! This is also cause for celebration, as working online did not deter or discourage the project partners!

Although the original Prospect Training Programmes were produced in 2006, the work actually began in 2001.  Still today, now 20 years later in 2021, the training programmes still are considered a valuable experience because they encourage, improve quality of life, give hope, open new perspectives, understanding, help with better coping skills, motivate, and empower. This is a celebration in itself!

As a result of how the Prospect Training Programmes are considered such a valuable experience, there has been “next steps” for Prospect already developed in Finland and France. This way the participants have the opportunity to meet and reconsider the various topics covered and the lessons learnt.

Many Prospect participants have also wanted to continue with the spirit of Prospect and have become themselves Prospect Faciliators! EUFAMI member organisations who implement the Prospect Training Programmes have encouraged this spirit and teamwork by supporting this process.

In fact, the Prospect Family all-over Europe is much larger than we can ever imagine. Prospect has touched and influenced the lives of many family and friends over the years and will continue to do so 😊

Presentations and Workshops

Former EUFAMI President, Miia Männikkö opened and welcomed all to the event. Gwen Crawford, Prospect Project Manager outlined the programme for the day and indicated the needs for running a smooth online event with live interpretation in 4 languages.

The first workshop and presentation of the day was by Nelli Santala and Annika Forth from FinFami, Finland. They were pioneers in developing e-Prospect: taking the Prospect Training Programme content from face-to-face to the online environment! Firstly, they facilitated the “lifeline” exercise from Module 3 of the Prospect Training Programme with input from two other Prospect Faciliators from Finland, Marja-Leena and Marita. Then they shared their e-Prospect experiences and the lessons learnt with the other participants. The questions and answers were based on the advantages and disadvantages of the e-Prospect versus face-to-face. The conclusion was that e-Prospect is a positive step as Prospect needs to focus on and develop its outreach towards the generations to come.

To celebrate 20 years of Prospect, the next speaker group were a blast from the past! Former EUFAMI President Begone Ariño and Clinical Psychologist Simon Gelsthorpe were invited to speak. Both were involved in the content development for the Prospect Training Programmes for Family/Friends (Begone) and Health and Social Care Professionals (Simon).  Begone spoke about “Empowering Families/Carers in EUFAMI – When did it all begin?” and Simon talked about the “Types of power” – as an aid in planning empowerment. Missing from this speaker group was Jens Ibsen who sadly died last autumn. Jens was responsible for the content development of the People with Self-Experience Training Programme from 2006.

 

The questions and answer sessions raised the point that communication with professionals seems to be an issue shared by all and is not dependent upon what country you are from or language you speak. So, what should professionals do to empower families? The answer was “Stop taking away their Power” which is easier said than done and the advice was for family and friend carers to “change their attitude and act like a professional” when communicating with them.

 

                                       From this point on – due to the intense nature of the day programme – the question and answers were

sadly confined to the Chat function of ZOOM.

The next speakers were Vaula Ollonen and Mauno Kaartinen from FinFami, Finland. Their presentation was on the “Emotion Cards”. A facilitation tool designed and developed in Finland for the Prospect Faciliators. The workshop was interactive, and participants were able to experience first-hand the uses of these “Emotion Cards”. This generated much interest from the international group of Prospect Facilitators participating and the advice given was: “don’t overuse the cards! keep it novel and fresh”.

Next was a guest speaker, Edmund Carroll from a community arts group in Ireland that first undertook research into art and health. He gave a two-part workshop aimed at the Prospect Facilitators called “Imagining “Me” as facilitator”. The workshop focused on the idea that we are already working with creativity and art in the facilitation process. Working from ideas developed by Viktor Frankl, he illustrated 3 steps on how to feel comfortable doing this: (1) Discover our own unique expression as Prospect over thirty years; (2) Create an expression of our unique Prospect work; and (3) Share it with other Prospect facilitators; friends and family.

In advance of the workshop, participants had responded to a written exercise called imagine a good experience of facilitation. Participants had to also find an image to symbolize their writing.  It was clear from what was received, that Prospect facilitators had already discovered their unique story and were able to communicate it by creating a lovely poetic texts and images.  The message being “What community art brings to the work of the facilitator is, that we need to call upon not just our mind, but also our heart and our creative potential too”.

 

 

The final part of the workshop was to find a way to (3) share and this gave us much food for thought.  Edmund suggested that the various national Prospect Facilitators groups find an image(s) or item(s) of their Prospect Group which visualize and represents them. They could place these in a parcel or envelope and send it to another national Prospect Facilitator group – ideally in another country where language is a boundary.  The rules of the exchange such as the opening process, the creation process and the posting process, would have to be self-managed and suit local circumstances. The final message is “Art changes people and people change their own world”. Edmund planted the idea that the participants today were actually a Prospect Orchestra – because everyone has a part to play to form a harmonious and powerful energy.

 

The next speaker was Vaula Ollonen from FinFami, Finland. Vaula is the Prospect National Coordinator and part of her task is to support the Facilitators and Volunteers of FinFami. She shared best practice from Finland on “Peer to Peer Support and volunteer work management”.

 

Alfonso Serrano from Confederacion Salud Mental from Spain presented next. Alfonso presented the work of Ana Ochoa and Rocio Sauceda on the content development of additional materials focusing on well-being. The original idea was to run a workshop on self-compassion and self-care during the “A Better Prospect” event but due to technical limitations, it was not possible to give a presentation in the Spanish language. We do hope that at a future occasion, the workshop will be possible. The message from the presentation was “take care of yourself before taking care of someone else”.

The next speaker was Emmanuelle Remond from UNAFAM, France spoke next. Emmanuelle also presented in English the presentation on the work of the Prospect Facilitator Christiane Thomas. Christiane is not only an experienced Prospect Facilitator but also has the responsibility of following up evaluation and feedback materials with the various Prospect Faciliators. The presentation highlighted the importance of evaluation, and various types and stages of evaluation not only to improve the content and delivery, but also to be able to prove the efficiency of the training programme and in this way access national public health funds.

 

The final speaker of the day was Edo Belak from SENT, Slovenia. Edo is the Prospect national coordinator and a Prospect Facilitator. Edo spoke about the experience of implementing Prospect in Slovenia and how cultural identity, norms and values, influences opportunities and sustainability. For this reason, international support for the national Prospect Facilitators is essential in Slovenia.

 

The final session of the day was a question-and-answer session lead by Gwen Crawford and some conclusions to the event. Former EUFAMI President Miia Männikkö acknowledged the work of the Prospect National Coordinators and the Prospect Faciliators. The Prospect Facilitators who had taken part in the national test training sessions for the project were presented with an online digital certificate.

Miia also thanked the speakers, the participants, the interpreters, the interpretation tech HUB company and gave special thanks to the partnership with the Janssen EMEA Fund which has enabled EUFAMI and the Prospect members to review and improve the Prospect Family and Friends Training Programme and produce “A Better Prospect”

The “A Better Prospect” Event was then brought to a close.

 A Final Word:

Stay tuned!!!:   there will be an online taster workshop organized during the EUFAMI AGM this June!

 

 

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The EUFAMI Prospect Training Programmes

 

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:

  • Family and Friends
  • Health Care Professionals
  • People with Self-Experience

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:

  • Prospect Health Care Professionals Training Programme
  • Prospect People with Self-Experience Training Programme
  • and the Prospect Common Ground Module

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:

  • Provide the EUFAMI Prospect Members with the support they need to continue organising Prospect in their countries
  • support new EUFAMI Members to organise the Prospect Training Programmes in their Countries – especially in east and central Europe.
  • Enable and provide the EUFAMI Prospect Facilitators with the opportunity to be able to access continued support and training

 

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