The Voice of Carers

The Voice of Carers

• The Voice of Carers

• Developing carer organisations across Europe

• Sebastian Fischer

• VOCAL - Voice of Carers Across Lothian

• Coalition of Carers in Scotland

• Eurocarers Executive Committee

• Brussels, 16 November 2009

EUROCARERS aims to advance the issue of informal care at national and EU levels through:

• EUROCARERS aims to advance the issue of informal care at national and EU levels through:

• Supporting the development of carers organisations
• Providing a united voice at European level
• Influencing policy at national and EU levels
• Promoting awareness of carers issues
• Dissemination of experience and good practice
• Developing an informed research agenda
• Providing information on relevant EU policy developments

Context - health and social care environment

• Context - health and social care environment

• Benefits of independent carer organisations

• Status quo & developments in Europe

• Role of Eurocarers: Action Points

• 2010 Conference

100 million people in Europe care for a family member, partner, relative or friend

• 100 million people in Europe care for a family member, partner, relative or friend

• Demographic change (population change) increases demand for care - across all ages

• Expectations of quality of care increase

• BUT: Public services unable to meet demand

• RESULT: many more people will be cared for in their homes rather than in institutional settings such as hospitals and care homes

In the face of new realities, we create a new language

• In the face of new realities, we create a new language

• ‘independent living’
• ‘shifting the balance of care’
• ‘self care + self management’
• ‘patients' autonomy and self-steering’
• ‘personalisation of care’

• They all have the same impact

• A shift of caring responsibility from the state, health services and local authorities to families and volunteers

Collective advocacy & representation rather than sectional representation of interests

• Collective advocacy & representation rather than sectional representation of interests

• The largest social care force in Europe
• Interests of carers not the same as those of patients

• Key partners in development of national policy

• Key partners in planning of services

• Providers of information and advice, mutual support, infra-structure for networking

• Key partners in monitoring and evaluating the impact of social and health policy

Britain (England, Scotland & Wales)

• Britain (England, Scotland & Wales)

• Strong lobbies with all parliaments & L.A.s

• National carer strategies, and recognition of carers in all health and care policy

• Access to independent advice, information, training and support (150 carer centres)

• Strong partnerships for better patient care (GP’s)

• Rights: independent carer assessments, direct payments, carer benefits

• More equality: less discrimination

Highlight the impact of care on families

• Highlight the impact of care on families

• Political lobbying & inclusion in policy

• Gain wider recognition of carers - their role, support needs and economic contribution

• Secure rights and entitlements to support

• Improve care services and carer support

• The arguments for independent carer organisations are overwhelming

Only 8 EU member states have independent carer organisations

• Only 8 EU member states have independent carer organisations

• Sweden
• Finland
• Netherlands
• Belgium
• France
• Germany
• Republic of Ireland
• UK (England, Scotland, Wales, Northern Ireland)

Germany: little carer recognition, no national or regional carer strategies, no carer helplines, no networks of local or regional carer support groups, no political lobbying

• Germany: little carer recognition, no national or regional carer strategies, no carer helplines, no networks of local or regional carer support groups, no political lobbying

• Carer organisation only recently founded - Welcome to ‘wir pflegen’ !!! - still too young to be effective, but beginning to attract attention

In some countries, carer representation through patient /disability organisations - e.g. Lithuania, Estonia, Greece

• In some countries, carer representation through patient /disability organisations - e.g. Lithuania, Estonia, Greece

• For many countries, we have no contacts or information - e.g. Poland? Bulgaria? Denmark? Portugal?

• We need the help of everyone to build up a database of contacts and partners!

Short term

• Short term

• Contacts & membership

• Establish comprehensive list of national contacts and European partners

• Build Eurocarers membership

• Systematic work with selected Eastern & Southern European partners to help develop carer organisations

Short term

• Short term

• Finance

• Identify core funding from EU sources

• Identify development funding for partnership initiatives

Medium term

• Medium term

• Carer Recognition

• Launch EU Petition for 1 million signatures to develop carer policy (Lisbon Treaty)

• Campaign for 2013 or 2014 to become European Year to Support Family Carers

• Lead the development of a European Carers Manifesto

2010 European Carers Conference

• 2010 European Carers Conference

• Edinburgh, Scotland – 17-19 May 2010

• Three main themes:

• Strengthening the focus on carers in European policy

• Exploring caring on the margins

• Strengthening carer organisations in Europe

Conference Participation

• Conference Participation

• 120 delegates - from up to 25 national and regional delegations

• New countries - not just the usual suspects!

• Aim for delegations of 1 government, 1 professional, 1 academic, 2 carers

• Carers are free

Outcomes of conference

• Outcomes of conference

• Sharing best practice

• Learning from experiences

• Developing a long term vision

• Increasing Eurocarers membership

• Consulting on the development of a European Carers Manifesto

We hope to welcome you in Edinburgh

• We hope to welcome you in Edinburgh

• Thank you