The Right to be Heard: advocacy and empowerment Dr Karen Newbigging, University of Birmingham and Laura Able, University of Central Lancashire with Stephanie De la Haye, Karen Machin, Dr Julie Ridley and June Sadd, University of Central Lancashire

Background A presumption of irrationality effectively silences people experiencing mental health problems People’s voices are not heard judged irrelevant, ignored or discounted (testimonial injustice) People’s knowledge and testimonies are downgraded or denigrated on the basis of prejudice (hermeneutic injustice)

Contribution of advocacy to empowerment Enabling people who feel unable to speak for themselves by having their views represented Enabling shared decision-making As a safeguard to prevent abuse of rights e.g. in relation to compulsion under the Mental Health Act As an appropriate adjustment - enabling service users to have the same access to the same quality of services as non-disabled people

Advocacy Promoting voice Self-advocacy Voice Citizen Advocacy IMHA Solutions Power Options IMCA Independent Mental Capacity Advocacy Communicate Complaints advocacy Community advocacy Educate Legal advocacy Link Convey Self-determination Talk Citizen Advocacy Results Imagine Peer advocacy Relationship Voice Advocacy Learn Explore Facilitate Personalisation Support IMHA Independent Mental Health Advocacy Trust Choices Time Represent Different forms of advocacy with their roots in the service user movement and with the potential to forge new understandings and strategies both individually and collectively. In this presentation we are going to draw on our experience of undertaking research into Independent Mental health Advocacy in England. Self-advocacy Decisions Confidence Connection Feel Collective advocacy 4

Review of Independent Mental Health Advocacy (IMHA) in England Specific form of advocacy for people subject to compulsion under the Mental Health Act In England Introduced in 2009 as a consequence of 2007 Mental Health Act reform 289 people participated in our study: 75 in focus groups and 214 people were interviewed 108 service users participated including 98 people eligible to use IMHA services

Impacts for service users Reported outcomes included: Greater understanding of rights and rights under the MH Act protected Changes in individual care and treatment Resolution of complaints User-defined outcomes achieved Increased capacity to self-advocate Greater voice and equalising power Changes in ward environment and wider changes at a system level And sometimes maintaining the status quo! +ve experiences linked to utility of the advocacy & quality of relationship -ve experiences linked to uncertainty, not achieving desired outcomes, aspects of delivery

Advocacy as a strategy for social justice Promoting the right to be heard (Testimonial justice) Ensuring service users have a voice Increasing service users’ confidence to self-advocate Providing information to increase understanding Increasing participation in decisions affecting care and treatment Safeguarding rights Advocate presence alters professional behaviour: more respectful and empowering stance Opens up clinical environments to external scrutiny Diversion to less restrictive care Creating the space for different understandings (Hermeneutic justice) Facilitates a more holistic appreciation of the service user as a person Challenging assumptions based on gender, ethnicity, sexuality, disability, faith Appreciation of personal assets, strengths and resources Appreciation of outcomes valued by service users Increased understanding of a social model Some staff unable to name local IMHA or service Community-based professionals most likely to confuse with IMCA role Not all mental health professionals understood their obligation to promote IMHA Fewer professionals understood that IMHAs can access records Training on IMHA generally superficial, with exception of AMHPs 7

Empowerment Indicators for advocacy Universal access to high quality advocacy – opting out Accessibility of IMHA services to the diversity of service users Involvement/coproduction of service users in commissioning process, planning, delivery and monitoring of IMHA services Independence and person-centred nature of provision Ability to support people who are at greater risk of exclusion – availability of non-instructed advocacy Support of the role by mental health services Impact on decisions and care and treatment

Thank You Karen Newbigging and Laura Able k.v.newbigging@bham.ac.uk Study reports available at: http://www.uclan.ac.uk/research/environment/projects/the_right_to_be_heard.php More information about the implementation project: www.IMHApractice.co.uk