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The European voice for informal carers

The past

How did everything start?

“Two EU funded projects – including most EU countries in their networks- EUROFAMCARE (Family Carers of the Elderly in 6 European Countries: Similarities and Differences) and CARMEN (Care and Management of Services for Older People in Europe Network) – both in parallel formulated the necessity to have a European NGO working in the interest of carers. It was a real good opportunity to use the partnership of carers organisations as well as research and development organisations to bring all countries together for a common goal: EUROCARERS.” Hanneli Döhner, wir Pflegen, Germany (formerly Coordinator of the EUROFAMCARE Project)

“A meeting in Maastricht, convened by the Dutch Institute of Care and Welfare (now Vilans and Movisie), connected the groups of people from CARMEN and EUROFAMCARE with other interested parties, and the fledgling Eurocarers was born. We should acknowledge the exceptional work of Christine Marking, Nicoline Tamsma, and Geraldine Visser in convening and informing the meeting, and following up with such determination.” Madeleine Starr, Carers UK, UK (participant in the Eurofestation and involved in Eurocarers ever since)

“We were coming from various countries and backgrounds, we knew each other from a number of European projects, and we had one mission: to recognize the importance of informal care in Europe.” Henk Nies, VILANS, Netherlands (formerly coordinator of the CARMEN Project)

“The first meeting in Maastricht in 2004 – organised to set up Eurocarers – was a true success. The enthusiasm and will to cooperate were overwhelming. Work took place very effectively and in a great atmosphere, with lots of good humour. We put the structure and framework of the organisation together in two days and I remember leaving with a great sense of accomplishment and satisfaction, with a feeling of a concrete objective and purpose.” Christine Marking, Consultant

Why the idea to create a network representing informal carers at EU level?

“We noticed that the voice of carers – as a category in its own right- was not heard on the European level. That is why some of us, who participated in these projects, got together and decided to set up a European Carers’ Association”. Marja Pijl, Eurocarers observer member from the Netherlands (formerly member of both Carmen and Eurofamcare Networks)

“Inspired by the EUROFAMCARE project, we realized that there are several European countries with strong Carers Organizations with some kind of political influence. On the other hand several self-help organizations as e.g. the Alzheimer Associations had influential umbrella organizations on the European level. But there was no European Carers Organization.”  Susanne Kohler, HFH – Hamburger Fern-Hochschule, Germany (member of the EUROFAMCARE Project, in charge of developing the Eurocarers Guiding Principles)

The present

What in the current agenda can be considered as an opportunity that we could further exploit?

“The movement towards assets based care in the home and in the community, which sets out to recognize and value the care given by families and local communities. This approach respects the concept of parity of esteem and supports collaborative working between professional service providers, Family Carers and their communities.” Brigid Barron (formerly member of the CARMEN Network as representative of Caring for Carers Ireland)

“I think we should continue to exploit the employment agenda – it makes sense to policy makers and helps us build an economic and business case for supporting carers. It is an area of EU competence which means that we can really make a difference by campaigning on employment at European level”. Madeleine Starr

“I think we should try to better understand and support a so far neglected group, i.e. that of carers with a migration or ethnic background. They often have to bear an even heavier burden, as their families report more difficulties in accessing formal care provision (due to linguistic, cultural and socio-economic barriers), so that informal care is used (and sometimes possibly abused) to a larger extent”. Giovanni Lamura, INRCA, Italy (formerly member of the EUROFAMCARE project and Eurocarers Vice-President for Research in 2009).

What is the biggest success in relation to the cause of informal carers (at national or EU level), since 2006?

“In the UK, the Equality Act 2010 and the Care Act 2014. We would never have achieved the protection for carers against discrimination that is in the Equality Act 2010 if it had not been for the case of Sharon Coleman that was taken to the European Court of Justice, where she won her right not to be discriminated against as a carer for her disabled son. The campaign was so exciting, and Sharon has been a great advocate for carers rights ever since”. Madeleine Starr

“Rising awareness and recognition at all levels of government, also at EU level, of the indispensible and ever growing role of Carers in society”. Henk Bakkerode, Eurocarers observer rmember (formerly Board member)

 

Why do we need Eurocarers?

“The fundamental challenges around care and caring – and how we support carers- are, in many ways, the same across the world and need a global response. So there is much we can learn from our colleagues within Eurocarers (and more widely within IACO too). In the UK much of the workplace legislation that supports carers originates from Europe so we could not be where we are without that wider context. And, in a more general sense we can also achieve so much more when we all work together.” Katherine Wilson, Carers UK

“Because of the ageing of the population there will be an increasing need of long-term care. We can see how in several countries governments try to shift the responsibility for the provision of care to the informal sector. Caring breeds inequality because carers don’t have the same opportunities as non-carers. They are restricted in the choices they can make and often cannot realise their full potential. Eurocarers is needed to convince governments and civil societies that carers deserve equal opportunities and should not become disadvantaged while caring or in later life.” Marja Pijl

“The existence of Eurocarers is like a seal of proof for national organisations advancing the issues of informal care and trying to improve the quality of life for informal carers.” NGO Estonian Carers

“The variation of supporting family caregivers is huge between different countries. That why it’s good to have organisations that create recommendations and strategies of supporting family carers as well as can collect good practices and share them.” Tiina Autio, Eurocarers observer member (formerly member of the Carmen Project)

“Informal care is a care issue, a social issue, an issue of pensions, a work issue, a migrant issue and a prevention issue. These all require legislation, funding and support to people to fulfil their often heavy, but also often rewarding tasks. However, informal care has not been fully accepted as an issue on all policy agenda’s, both of the European Union and its member states. In addition, integration of the different policy domains is still limited. We need Eurocarers to address the integrated nature of the topic of informal care and to address informal care on all different agenda’s.” Henk Nies

The future

What is the main challenge in relation to the cause of informal carers?

“It will be important to make sure that not only professionals working with or for carers but carers themselves participate in the development of Eurocarers. This should prevent Eurocarers from becoming part of the European bureaucracy and ensure that Eurocarers keeps working in the direct interest of those on whose behalf the association was founded”. Marja Pijl

“In a continuously changing society, with growing pressure on informal carers, the challenge for Eurocarers is to address the topics that matter the most for informal carers themselves. Informal carers are very well able to express their concerns and needs, most relevant in their daily lives. Involvement of and collaboration with informal carers might support Eurocarers in addressing this challenge.” Henk Nies

“Governments and budget setting is often short-term and there is a risk with cut backs in budgets across many member states that there won’t be sufficient long-term investments to support carers. This will lead to increased ill-health and poverty for many carers across Europe.” Elizabeth Hanson, The Swedish Family Care Competence Centre

“Firstly, recognition (including self-recognition as a carer) as caring can take so many different forms and happen in so many different ways. And secondly, the sheer scale of the issue as our population – and our working population – ages at the same time as funding for public services is shrinking” Katherine Wilson

“The main challenge is to make a great many more informal carers aware of the importance of the work they do and to make them understand that they need to speak up and organise themselves in order to be heard”.  Marja Pijl

“Mainstreaming the implication of informal care across all life sectors (education, employment, health and social care, housing, technology etc.), and not limiting this issue to the one or the other single sector only”. Giovanni Lamura

“To promote and realise for all Carers in Europe a full life: full quality of life for themselves and for their loved ones. Carers have already general sympathy, but that is not enough: they should become everybody’s real concern, in politics and in society!” Henk Bakkerode

“A continued lack of awareness amongst policy makers and (health and social) stakeholders, rather than the lack of political will. Once policy makers are aware they totally see the need to address this issue”. Christine Marking

“The inception of the national or EU level organizations. Change can start only then when an issue is identified in society, main concerns are voiced and there is willingness to advance such cause on national and better yet on EU level. With exchange comes deeper understanding of the social issue at hand.” NGO Estonian Carers

 

What do you want to wish to Eurocarers for this anniversary and for the future?

“My wish is twofold, one that Eurocarers will continue to develop the engagement with carers at EU and national level in those member states where there is the greatest deficit in the recognition and support of informal carers and two, that Eurocarers will form an umbrella council at EU level of all those organizations with an interest in carers issues, NGO, private sector, statutory sector via an annual or biannual conference, focus on policy and constructive advocacy.” Frank Goodwin, Family Carers Ireland (former Eurocarers President)

“We wish for Eurocarers and for all carers in Europe a recognition of the importance of carers’ contribution to society and an understanding of the necessity to support carers in their efforts.” Carers Denmark

“To become stronger and stronger, meaning to represent national and regional/local contexts to a larger scale, continuing to give the rhythm and facilitate the different members in working on common basis.” C’entro

“We hope that Eurocarers continues its support for the new and smaller members of the organisation as well as new potential members. Countries are quite heterogeneous as regards the state and level of support for carers and for many, Eurocarers can play a vitally important role in encouraging, coaching and also financially supporting its members.” The Central Association of Carers in Finland

“As a ten year old, Eurocarers is still very young and in the full process of developing and growing. One of the advantages of this young age is curiosity, open-mindedness, being energy-driven and eager to learn. But at the same time, Eurocarers is old enough to implement and put into practice the skills and competences that have been learned so far, always in the scope of self-improvement and self-development. We thus wish Eurocarers to keep this spirit alive and to stay on track – even when the challenges of puberty might show up.” RBS Luxembourg

“Happy 10th anniversary, and the strength and determination it has always shown to fight the carers cause”. Madeleine Starr

“Now, ten years after Eurocarers became a legal entity, it is great to see how it has impacted EU policy, how exchange between countries takes place, how some significant studies have been carried out and how Eurocarers has become a significant player. Many thanks to everyone, for the arduous work over the past ten years. A sound basis has been established to continue for many more years in the interest of the many million informal carers in Europe!” Henk Nies

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