Consumer Participation in planning, service provision, and evaluation K. Honnor, NDSA May 2008

“Tell me, I’ll forget. Show me I may remember. But involve me and I will understand.” Chinese Proverb

Consumer Participation - a definition The process of involving consumers in decision- making about their own health care, health service planning, policy development, setting priorities and addressing quality issues in the delivery of health services. The process of involving consumers in decision- making about their own health care, health service planning, policy development, setting priorities and addressing quality issues in the delivery of health services.

What does it mean? Empowering Empowering Two way respect Two way respect Voice of consumers at all stages Voice of consumers at all stages An ongoing process An ongoing process Multi layered Multi layered Looking outside the box Looking outside the box Consumers as part of the solution Consumers as part of the solution

Why is it important? A right A right Focal point of service/ direction Focal point of service/ direction Quality assurance Quality assurance Accountability Accountability Making sure policy reflects real life Making sure policy reflects real life Provides “expert” feedback and advice Provides “expert” feedback and advice Better use of resources Better use of resources Helps build capacity Helps build capacity

Type of Barriers Service User Service User Uncertainty about skills, ability, stigma Uncertainty about skills, ability, stigma Confidentiality issues Confidentiality issues Discrimination and distrust Discrimination and distrust Energy levels; illness/ disability Energy levels; illness/ disability Fear of not being valued and isolated Fear of not being valued and isolated Apathy, lack of interest, disinterest Apathy, lack of interest, disinterest Not knowing how to participate Not knowing how to participate

Types of Barriers (2) Providers: Providers: Who to involve Who to involve Confidentiality Confidentiality Distrust/ fear of exposure (of making need known) Distrust/ fear of exposure (of making need known) Funding and resource limitations Funding and resource limitations Unknown territory, stepping on toes Unknown territory, stepping on toes Fear of conflict between consumers and providers Fear of conflict between consumers and providers Fear of change, more protocols Fear of change, more protocols Balance between providing supportive role and doing too much Balance between providing supportive role and doing too much

Ways to overcome barriers creating opportunities for shared learning creating opportunities for shared learning support mechanisms (formal and informal) support mechanisms (formal and informal) effective and clear communication effective and clear communication processes and protocols for guiding participation processes and protocols for guiding participation

Service evaluation Forums, hui Forums, hui In-house Consumer advisors/reps In-house Consumer advisors/reps Consumer Forum or Advisory groups Consumer Forum or Advisory groups Support groups Support groups Surveys, interviews Surveys, interviews Thinking outside the box Thinking outside the box

In-house Advisors Participation framework Participation framework Recognition Recognition Job description Job description Terms of Reference Terms of Reference Paid Paid Support Support Supervision Supervision Training Training

Let’s Get Real: Download: Lets Get Real from MoH Let’s Get Real: Real Skills for people (refer template for web address) Download: Lets Get Real from MoH Let’s Get Real: Real Skills for people (refer template for web address) Refer notes for performance indicators regarding working with service users Refer notes for performance indicators regarding working with service users

Strengthening Our Foundations (2004) Aim: to promote the value of service users in roles within the mental health sector : to find out what is needed to strengthen those roles : to find out what is needed to strengthen those rolesRecommendations: developing national guidelines for service user roles; developing national guidelines for service user roles; implementing a training programme for people in service user roles; implementing a training programme for people in service user roles; developing an educational package of reasonable accommodations to assist employers cater for the needs of those who experience mental illness; developing an educational package of reasonable accommodations to assist employers cater for the needs of those who experience mental illness; implementing affirmative action programmes to increase the participation of people who experience mental illness in broader roles in the mental health workforce; implementing affirmative action programmes to increase the participation of people who experience mental illness in broader roles in the mental health workforce; requiring recovery/strengths based training to be part of the curriculum for all people training for a career in mental health. requiring recovery/strengths based training to be part of the curriculum for all people training for a career in mental health.

THE POWER OF CONTACT, 2005 THE POWER OF CONTACT, 2005 Studies have found that ‘contact’ is the most effective strategy in countering stigma and discrimination associated with mental illness. Studies have found that ‘contact’ is the most effective strategy in countering stigma and discrimination associated with mental illness. However, mental health professionals, often still exhibit discriminatory attitudes and behaviours. However, mental health professionals, often still exhibit discriminatory attitudes and behaviours. In order for ‘contact’ to be effective, several conditions must be associated with it. These are: In order for ‘contact’ to be effective, several conditions must be associated with it. These are:  Equal status  The opportunity for individuals to get to know each other  Information which challenges negative stereotypes  Active co-operation  Pursuit of a mutual goal.

Our lives in 2014 (2003) This vision describes what ‘being there’ will look like in 2014; This vision describes what ‘being there’ will look like in 2014; the second mental health plan will describe how ‘getting there’ will happen over the next 10 years. the second mental health plan will describe how ‘getting there’ will happen over the next 10 years. It was prepared by 20 mental health service user leaders, in consultation with a larger number of service users. It was prepared by 20 mental health service user leaders, in consultation with a larger number of service users.

REAL PARTICIPATION IS: * Joint problem-solving * Joint decision-making * Joint responsibility