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Open Research Online The Open University’s repository of research publications and other research outputs Carer empowerment Conference or Workshop Item How to cite: Larkin, Mary (2010). Carer empowerment. In: Driving Change In Welfare Services For The Aged Project, 2008-2010, 21 Sep 2010, Helsinki, Finland. For guidance on citations see FAQs . c [not recorded] Version: Accepted Manuscript Copyright and Moral Rights for the articles on this site are retained by the individual authors and/or other copyright owners. For more information on Open Research Online’s data policy on reuse of materials please consult the policies page. oro.open.ac.uk

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Page 1: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

Open Research OnlineThe Open University’s repository of research publicationsand other research outputs

Carer empowermentConference or Workshop ItemHow to cite:

Larkin, Mary (2010). Carer empowerment. In: Driving Change In Welfare Services For The Aged Project,2008-2010, 21 Sep 2010, Helsinki, Finland.

For guidance on citations see FAQs.

c© [not recorded]

Version: Accepted Manuscript

Copyright and Moral Rights for the articles on this site are retained by the individual authors and/or other copyrightowners. For more information on Open Research Online’s data policy on reuse of materials please consult the policiespage.

oro.open.ac.uk

Page 2: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore
Page 3: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

21st September 2010

Dr Mary Larkin

De Montfort University

Leicester, UK

Page 4: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

• definitions

• the context of carer empowerment

• the outcomes of carer

empowerment

• carer empowerment in the future?

Page 5: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

DEFINITIONS

CARER (UK) = CAREGIVER (FINLAND)

EMPOWERMENT “degrees of empowerment are

measured by the existence of choice, the use of choice and the achievement of choice” (Alsop and Heinsohn, 2005:4)

Page 6: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

CONTEXT

• carer empowerment has taken place in the context of empowerment of both service users and carers

• therefore carer empowerment cannot be undertood without a brief explanation of service user empowerment

Page 7: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

The journey to service user empowerment so far

..........

Page 8: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

User involvement

Page 9: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

•development of services

•professional training and social work education

•design and conduct research

•user-led organisations e.g. National Service User Network

•hold positions in national social care organisations

Page 10: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

User involvement

Self-management

Page 11: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

• service users manage their condition and their treatment themselves (self- manage) • Expert Patient Programme (EPP)

(http://www.expertpatients.co.uk/) • more control over their health • the ‘expert’ about their own

condition

Page 12: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

User involvement

Self-management

Personalised models of care

Page 13: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

•more choice and control over care

•enable service users to live life as they would wish

• increase independence at home, at work and as members of their communities

(http://www.dh.gov.uk/en/SocialCare/Socialcarereform/Personalisation)

Page 14: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

Personalised models of care 2

•central to these models is self directed support

•service users design their support to suit their own requirements

•receive resources which they control and manage. Examples are DIRECT PAYMENTS and INDIVIDUAL BUDGETS

Page 15: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

The journey to carer empowerment so far ..........

This has been facilitated

through: • legislation

• the carers movement

Page 16: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

National Strategy for Carers (1999)

Page 17: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

National Strategy for Carers (1999)

Employment Relations Act (1999)

Page 18: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

National Strategy

for Carers (1999)

Employment Relations Act (1999)

Carers and Disabled Children’s Act (2000)

Page 19: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

National Strategy

for Carers (1999)

Employment Relations Act (1999)

Carers and Disabled Children’s Act (2000)

The Child Support, Pensions and Social Security Act

(2000)

Page 20: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

National

Strategy for Carers (1999)

Employment

Relations Act (1999)

Carers and Disabled Children’s Act (2000)

The Child Support, Pensions and Social Security Act (2000)

Carers (Equal Opportunities) Act

(2004)

Page 21: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

National

Strategy for Carers (1999)

Employment

Relations Act (1999)

Carers and Disabled Children’s Act (2000)

The Child Support, Pensions and Social Security Act (2000)

Carers (Equal Opportunities) Act (2004)

National Carers Strategy (2008)

Page 22: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

Carers movement

• growth in the size and power of national and local carers organizations

• advocacy role increased

• government website for carers (http://www.carers.gov.uk)

• Carers UK – “the voice of carers” (http://www.carersuk.org)

Page 23: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

“carers and their caring role are inextricably linked to the people they care for. If the support and services are not right for the person being supported then both the individual and the family are affected’ (National Carers Strategy, 2008:5)

Page 24: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore
Page 25: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

CARERS ORGANISATIONS ARE CONSULTED ABOUT POLICY

Page 26: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

1. CARERS ORGANISATIONS ARE CONSULTED ABOUT

POLICY • consulted before strategies

published, and involved in changes • National carers organisations

conferences address policy issues • local carer groups are involved in

consultations about social care in their areas

Page 27: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

CARERS INVOLVED IN DESIGN & DELIVERY OF EDUCATION & TRAINING

CARERS ORGANISATIONS ARE CONSULTED ABOUT POLICY

Page 28: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

2. CARERS INVOLVED IN DESIGN AND DELIVERY OF EDUCATION AND TRAINING

• carers knowledge and experience recognised as being central to staff training programmes

• recognition this knowledge is equal to professional and academic knowledge

• provision of support and training to carers to maximize their input

Page 29: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

CARERS RESPECTED AS “EXPERT CARE PARTNERS”

CARERS INVOLVED IN DESIGN & DELIVERY OF EDUCATION & TRAINING

CARERS ORGANISATIONS ARE CONSULTED ABOUT POLICY

Page 30: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

3. CARERS RESPECTED AS ‘EXPERT CARE PARTNERS’

• acknowledgement of their role and expertise

• dignity, treatment with respect and partnership working in care

• personalised models mean more choice and control for carers

• involved in design and planning of services

Page 31: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

EMPHASIS ON SUPPORTING CARERS

CARERS RESPECTED AS “EXPERT CARE PARTNERS”

CARERS INVOLVED IN DESIGN & DELIVERY OF EDUCATION & TRAINING

CARERS ORGANISATIONS ARE CONSULTED ABOUT POLICY

Page 32: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

4. EMPHASIS ON SUPPORTING CARERS 1

• right to have needs assessed • development of the right care

package so they can ‘lead a life outside their caring role’

• personalised model of care mean that carers now have more chocie and control over their support sevices

Page 33: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

EMPHASIS ON SUPPORTING CARERS 2

• better co-ordinated and culturally competent services

• support groups • support so that they are not

forced into financial hardship by their caring role

• more support for carers to stay mentally and physically well

Page 34: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

INFORMATION AND TRAINING FOR CARERS

EMPHASIS ON SUPPORTING CARERS

CARERS RESPECTED AS “EXPERT CARE PARTNERS”

CARERS INVOLVED IN DESIGN

DELIVERY OF EDUCATION & TRAINING

CARERS ORGANISATIONS ARE CONSULTED ABOUT POLICY

Page 35: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

5. INFORMATION AND TRAINING FOR CARERS

• Department of Health “Caring with confidence” programme

• local training schemes e.g. relaxation, communication skills

• information services and helplines

• advice about welfare and finance

Page 36: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

SPECIFIC TRAINING FOR PROFESSIONALS

INFORMATION AND TRAINING FOR CARERS

EMPHASIS ON SUPPORTING CARERS

CARERS RESPECTED AS “EXPERT CARE PARTNERS”

CARERS INVOLVED IN DESIGN & DELIVERY OF EDUCATION &

TRAINING

CARERS ORGANISATIONS ARE CONSULTED ABOUT POLICY

Page 37: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

6. SPECIFIC TRAINING FOR PROFESSIONALS 1

• now provided for professionals across the board, from health to housing

• emphasis is on increase staff awareness of carers’ needs

• involves shared education and working in carers’ organizations

Page 38: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

SPECIFIC TRAINING FOR PROFESSIONALS 2

The aim of this training is to : • provide better services and

support for carers which recognizes diversity

• build and maintain relationships with carers

• work in partnership with carers

Page 39: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

CARER EMPOWERMENT IN THE FUTURE

• there is evidence efforts to empower carers will continue (www.dh.gov.uk and www.sdo.lshtm.ac.uk)

• BUT the economic climate in the UK could thwart these efforts

• continuing importance of learning from others

Page 40: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore

CONTACT ME !

[email protected]

Page 41: Open Research Onlineoro.open.ac.uk/41110/2/Presentation2.pdf · CONTEXT •carer empowerment has taken place in the context of empowerment of both service users and carers •therefore