The Voice of Carers Developing carer organisations across Europe Sebastian Fischer

1. 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

2. Eurocarers Aims 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

3. Presentation: The Voice of Carers • Context - health and social care environment • Benefits of independent carer organisations • Status quo & developments in Europe • Role of Eurocarers: Action Points • 2010 Conference

4. Health & social care environment • 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

5. Health & social care environment (2) 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

6. Benefits of independent carer organisations • 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

7. Example of benefits 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

8. Why we need independent carer organisations • 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

9. The Status Quo in Europe • Only 8 EU member states have independent carer organisations • Sweden • Finland • Netherlands • Belgium • France • Germany • Republic of Ireland • UK (England, Scotland, Wales, Northern Ireland)

10. EUROCARERS – 31 Members

11. New developments: Germany 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

12. Other developments? 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!

13. Eurocarers - Action Points 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

14. Eurocarers - Action Points Short term Finance Identify core funding from EU sources Identify development funding for partnership initiatives

15. Eurocarers - Action Points 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

16. 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

17. 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

18. 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

19. We hope to welcome you in Edinburgh Thank you