Consumer Participation in planning, service provision, and evaluation

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

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

3. 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.

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

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

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

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

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

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

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

11. Let’s Get Real: • Download: Lets Get Real from MoH. 2007. Let’s Get Real: Real Skills for people (refer template for web address) • Refer notes for performance indicators regarding working with service users

12. 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 Recommendations: • developing national guidelines for 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; • 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.

13. THE POWER OFCONTACT, 2005 • 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. • 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.

14. Our lives in 2014 (2003) • 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. • It was prepared by 20 mental health service user leaders, in consultation with a larger number of service users.

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