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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Economic Case Spanish

Estudio de caso económico

This research survey has been commissioned and is being conducted by at EUFAMI, the European Federation of Associations of Families of People with Mental Illness, Leuven, Belgium. The London School of Economics and Political Science, in London, UK are working with EUFAMI to analyse and summarise the findings from this survey.

Please read the information provided below carefully. If you have any questions or concerns at this point or in the future, please feel free to contact Margaret Walker, Executive Director at EUFAMI. Email: executive.director@eufami.org or by telephone: + 32 468 17 71 48

Purpose of survey

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. Policymakers 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.

The results of this survey will be used to help estimate all of the value to society of informal caring for people with mental health needs to inform national and local policymaking, strengthen public awareness of the contribution of informal carers and advocate for greater recognition of mental health carers and their support needs. To do this we are inviting you to participate in this online survey of your experiences of caring for a person with poor mental health.

Your participation

To be eligible to participate in the survey you should:

  1. Be 18 years or older;
  2. Care for someone aged 18 years or older;
  3. Care for someone with at least one severe mental health condition (other than dementia and learning difficulties). You do not have to be their main carer or live at the same address.
  4. Not be employed to provide your caring role (i.e. formally paid a wage for caring). You can still participate in the study if you receive a government benefit such as the Carer’s Allowance.

The survey should take no more than 20 minutes to complete and includes multiple choice and open-ended questions about you and the person you care for, your caring role, any support and services you receive, as well as the impact caring has had on your life. Please note that you do not have to finish the survey in one go; you can save your responses and come back to it at a later time. You can also go back and change any of your answers at any time until you submit the questionnaire, but once this is submitted it will no longer be possible to change your responses.

All responses will be downloaded onto a secure computer server. All information you provide will be treated in a confidential manner and will be kept securely by EUFAMI for up to 10 years. We are not asking for any personal identifiers such as your name or address in order that survey responses are anonymous and all identities protected. The information will only be shared by EUFAMI with researchers at the London School of Economics and Political Science (LSE) in the UK so that they can use it in their research on the value of caring. It will also be securely stored by the LSE for up to 10 years. This will give EUFAMI and the LSE time to undertake further analysis and to publicise the results of the survey with decision makers and through academic publications.

Further information

For further information on this survey please go to the EUFAMI website http://eufami.org/ where there is a list of frequently asked questions. You can also anonymously post additional questions about the survey which EUFAMI will then respond to. If you are having technical issues with the online questionnaire – please follow this link to print a paper-based version of the document. This can be posted to EUFAMI, Diestsevest 100,B – 3000 Leuven, Belgium.  . If you want to find out about the final results of this study without any obligation to participate in the survey you can also subscribe to a mailing list: info@eufami.org. You will be notified when survey results are published in a report written by the LSE team and EUFAMI in 2019 as well as in other papers and reports.

This study has received ethical clearance from the London School of Economics and Political Science.

Read more >

Economic Case French

Étude de cas économique

This research survey has been commissioned and is being conducted by at EUFAMI, the European Federation of Associations of Families of People with Mental Illness, Leuven, Belgium. The London School of Economics and Political Science, in London, UK are working with EUFAMI to analyse and summarise the findings from this survey.

Please read the information provided below carefully. If you have any questions or concerns at this point or in the future, please feel free to contact Margaret Walker, Executive Director at EUFAMI. Email: executive.director@eufami.org or by telephone: + 32 468 17 71 48

Purpose of survey

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. Policymakers 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.

The results of this survey will be used to help estimate all of the value to society of informal caring for people with mental health needs to inform national and local policymaking, strengthen public awareness of the contribution of informal carers and advocate for greater recognition of mental health carers and their support needs. To do this we are inviting you to participate in this online survey of your experiences of caring for a person with poor mental health.

Your participation

To be eligible to participate in the survey you should:

  1. Be 18 years or older;
  2. Care for someone aged 18 years or older;
  3. Care for someone with at least one severe mental health condition (other than dementia and learning difficulties). You do not have to be their main carer or live at the same address.
  4. Not be employed to provide your caring role (i.e. formally paid a wage for caring). You can still participate in the study if you receive a government benefit such as the Carer’s Allowance.

The survey should take no more than 20 minutes to complete and includes multiple choice and open-ended questions about you and the person you care for, your caring role, any support and services you receive, as well as the impact caring has had on your life. Please note that you do not have to finish the survey in one go; you can save your responses and come back to it at a later time. You can also go back and change any of your answers at any time until you submit the questionnaire, but once this is submitted it will no longer be possible to change your responses.

All responses will be downloaded onto a secure computer server. All information you provide will be treated in a confidential manner and will be kept securely by EUFAMI for up to 10 years. We are not asking for any personal identifiers such as your name or address in order that survey responses are anonymous and all identities protected. The information will only be shared by EUFAMI with researchers at the London School of Economics and Political Science (LSE) in the UK so that they can use it in their research on the value of caring. It will also be securely stored by the LSE for up to 10 years. This will give EUFAMI and the LSE time to undertake further analysis and to publicise the results of the survey with decision makers and through academic publications.

Further information

For further information on this survey please go to the EUFAMI website http://eufami.org/ where there is a list of frequently asked questions. You can also anonymously post additional questions about the survey which EUFAMI will then respond to. If you are having technical issues with the online questionnaire – please follow this link to print a paper-based version of the document. This can be posted to EUFAMI, Diestsevest 100,B – 3000 Leuven, Belgium.  . If you want to find out about the final results of this study without any obligation to participate in the survey you can also subscribe to a mailing list: info@eufami.org. You will be notified when survey results are published in a report written by the LSE team and EUFAMI in 2019 as well as in other papers and reports.

This study has received ethical clearance from the London School of Economics and Political Science.

Read more >

Economic Case Survey

Economic Case Study

This research survey has been commissioned and is being conducted by at EUFAMI, the European Federation of Associations of Families of People with Mental Illness, Leuven, Belgium. The London School of Economics and Political Science, in London, UK are working with EUFAMI to analyse and summarise the findings from this survey.

Please read the information provided below carefully. If you have any questions or concerns at this point or in the future, please feel free to contact Margaret Walker, Executive Director at EUFAMI. Email: executive.director@eufami.org or by telephone: + 32 468 17 71 48

Purpose of survey

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. Policymakers 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.

The results of this survey will be used to help estimate all of the value to society of informal caring for people with mental health needs to inform national and local policymaking, strengthen public awareness of the contribution of informal carers and advocate for greater recognition of mental health carers and their support needs. To do this we are inviting you to participate in this online survey of your experiences of caring for a person with poor mental health.

Your participation

To be eligible to participate in the survey you should:

  1. Be 18 years or older;
  2. Care for someone aged 18 years or older;
  3. Care for someone with at least one severe mental health condition (other than dementia and learning difficulties). You do not have to be their main carer or live at the same address.
  4. Not be employed to provide your caring role (i.e. formally paid a wage for caring). You can still participate in the study if you receive a government benefit such as the Carer’s Allowance.

The survey should take no more than 20 minutes to complete and includes multiple choice and open-ended questions about you and the person you care for, your caring role, any support and services you receive, as well as the impact caring has had on your life. Please note that you do not have to finish the survey in one go; you can save your responses and come back to it at a later time. You can also go back and change any of your answers at any time until you submit the questionnaire, but once this is submitted it will no longer be possible to change your responses.

All responses will be downloaded onto a secure computer server. All information you provide will be treated in a confidential manner and will be kept securely by EUFAMI for up to 10 years. We are not asking for any personal identifiers such as your name or address in order that survey responses are anonymous and all identities protected. The information will only be shared by EUFAMI with researchers at the London School of Economics and Political Science (LSE) in the UK so that they can use it in their research on the value of caring. It will also be securely stored by the LSE for up to 10 years. This will give EUFAMI and the LSE time to undertake further analysis and to publicise the results of the survey with decision makers and through academic publications.

Further information

For further information on this survey please go to the EUFAMI website http://eufami.org/ where there is a list of frequently asked questions. You can also anonymously post additional questions about the survey which EUFAMI will then respond to. If you are having technical issues with the online questionnaire – please follow this link to print a paper-based version of the document. This can be posted to EUFAMI, Diestsevest 100,B – 3000 Leuven, Belgium.  . If you want to find out about the final results of this study without any obligation to participate in the survey you can also subscribe to a mailing list: info@eufami.org. You will be notified when survey results are published in a report written by the LSE team and EUFAMI in 2019 as well as in other papers and reports.

This study has received ethical clearance from the London School of Economics and Political Science.

Read more >

Interactive playbook launched to help support carers of people with schizophrenia

EUFAMI is excited to launch the ‘Schizophrenia – Carer Playbook’, a project supported by Janssen Pharmaceutica NV to provide guidance and advice to carers of those living with schizophrenia, helping them to navigate the struggles they may face. We understand and appreciate that being a carer is often far from easy, and can feel overwhelming at times. The internet provides a lot of information, and whilst this is good, the sheer volume available can be confusing and not all of it is reliable. In response to this, we decided to develop the ‘Schizophrenia – Carer Playbook’.

The content of this interactive PDF has been informed from the experiences of patients, carers and healthcare professionals, to offer tips and tricks covering a variety of topics. The playbook itself focuses around four patient/carer stories; we follow Marie, Álvaro, Klaus and Anna, as they share their experiences of preparing for appointments, deciding on treatment options, looking after their own wellbeing and tackling the stigma which is unfortunately so prevalent around schizophrenia.

At EUFAMI, we want to empower carers, giving them the tools they need to make the positive and profound impact they have on the person they care for, day in and day out. While schizophrenia is a chronic and long-lasting illness, we know that it is possible to live a good and fulfilling life with proper treatment and management. The role of carers is critical; with nine out of ten involved in reminding the people they care for to take their medication, over half making treatment decisions, and half regularly helping with the more practical parts of life, such as transportation and providing meals.

Research tells us that the health and wellbeing of carers can be negatively impacted by their role as a carer, however it doesn’t have to be this way. Knowing your limits and setting boundaries is key to stay well, and we hope that the advice contained within the playbook will help with this.

It is our hope that through the ‘Schizophrenia – Carer Playbook’, we can support those caring for the 21 million people worldwide who face schizophrenia.

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About us 1

EUFAMI was founded in 1992 after a congress, which took place in 1990 in De Haan, Belgium, where carers from all over Europe shared their experiences of helplessness and frustration when living with severe mental illness. They resolved to work together to help both themselves and the people they cared for.

EUFAMI is a democratic organisation, registered in Belgium as an international non-profit organisation. We have an ongoing commitment to improving care and welfare for people affected by mental ill health. We also enable our member organisations to act jointly at a European Level, combining their efforts and sharing experience.

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World Mental Health Day 2018 – Young People and Mental Health In a Changing World

Caring for a young person when they are affected by mental ill health in their late teens or early twenties carries with it some specific worries.

Will they be able to finish their education? How will their financial position be affected? Will they find it difficult to form healthy relationships? What will happen when I am too old to care for them?

Leaving school, leaving home, starting university and entering the world of work are major life changes which could trigger mental ill health in young people.

More than 75% of the caregivers who took part in our Caring4Carers survey were looking after their son or daughter.

Meanwhile, young carers are too often hidden, forgotten and ignored.

There is a huge risk that young people caring for a relative with mental ill health could become ill themselves.

We believe young carers must be given special attention because support has been found to dramatically improve their lives.

Supporting carers of young people, and strengthening their position is a key part of our mission at EUFAMI.

We are pleased to support World Mental Health Day 2018, which is highlighting young people and mental health in a changing world.

More information on this year’s theme can be found here: http://www.who.int/mental_health/world-mental-health-day/2018/en/

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