MAINTAINING ADVOCACY’S RADICAL EDGE SEP 2017 brap, The Arch, First Floor, 48-52 Floodgate Street, Birmingham, B5 5SL Email: brap@brap.org.uk | Telephone: 0121 272 8450 Twitter: @braphumanrights | Facebook: brap.human.rights WWW.BRAP.ORG.UK

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 www.brap.org.uk

WHAT DO WE MEAN BY EQUALITY? Equality of outcome Equality of process (experience) Equality of autonomy www.brap.org.uk

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 www.brap.org.uk

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 www.brap.org.uk

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 www.brap.org.uk

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 www.brap.org.uk

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

Human capital/health literacy BARRIERS TO AUTONOMY Resources (choice) Social capital Human capital/health literacy www.brap.org.uk

Human capital/health literacy BARRIERS TO AUTONOMY Resources (choice) Social capital Human capital/health literacy www.brap.org.uk

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 www.brap.org.uk

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 www.brap.org.uk

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 www.brap.org.uk

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

TRANSFORMING THE WAY WE THINK AND DO EQUALITY www.brap.org.uk