1. MAINTAINING ADVOCACY’S RADICAL EDGE
SEP 2017
brap, The Arch, First Floor, Floodgate Street, Birmingham, B5 5SL
| Telephone:
| Facebook: brap.human.rights

2. ABOUT US Transforming the way we think and do equality
Provide research, training, and organisational development support
Deliver grassroots projects
Worked with 50 NHS trusts last year

3. WHAT DO WE MEAN BY EQUALITY?
Equality of outcome
Equality of process (experience)
Equality of autonomy

4. WHAT DOES AUTONOMY MEAN?
Component
Barriers
Self -reflection
Conditioned expectations
Wide range of high quality options
Lack of resources
Lack of information
Active decision making
Passivity
Coercion

5. WHAT DOES AUTONOMY MEAN?
Component
Barriers
Self -reflection
Conditioned expectations
Voice
Wide range of high quality options
Lack of resources
Lack of information
Choice
Active decision making
Passivity
Coercion
Control

6. WHAT WE DID
Interviews across six COPA sites nationally (England and Wales)
56 interviews (patients, carers, advocates, CNSs, information and support managers)
15 focus groups

7. Balance between professional expertise and patient choice Case study 1
BARRIERS TO AUTONOMY
Power (control)
Balance between professional expertise and patient choice
Case study 1

8. BARRIERS TO AUTONOMY Conformity (voice) Self-esteem
Status of health professionals
Introjection
Appearing strong in front of family
‘Switching off’

9. Human capital/health literacy
BARRIERS TO AUTONOMY
Resources (choice)
Social capital
Human capital/health literacy

10. Human capital/health literacy
BARRIERS TO AUTONOMY
Resources (choice)
Social capital
Human capital/health literacy

11. SIGNS OF A LACK OF VOICE
Indications of low self-esteem (e.g. saying they are not ‘worthy’ of help or that they wouldn’t be able to do something)
Low expectations about the type of help and support they can receive
Repeated references to poor outcomes experienced by other people they know who have had cancer
Saying one thing to you about preferences or choices, but then acting in a different way around others
References to being worried about what others might think of them or wanting to please others

12. SIGNS OF A LACK OF CHOICE
Lack of communication, numerical or literacy skills which appear to prevent people from understanding and choosing options
Loneliness or lack of friends and family to support people to find out about or choose options
Lack of financial resources to choose particular options
Ways the local health and social care system works / lack of available local resources - that appear to prevent people from making choices they value
Lack of ability to research options or lack of questioning skills

13. SIGNS OF A LACK OF CONTROL
Descriptions of fear of others in their lives
Feeling pressured into making decisions or acting in a particular way
Family or friends making decisions for advocacy partners when they don’t appear to agree with them
People speaking over advocacy partners and preventing them from making active decisions

14. RESOURCES http://opaal.org.uk/copa-resources/ Research report
Autonomy toolkit
Presentation

15. TRANSFORMING THE WAY WE THINK AND DO EQUALITY