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.

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

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

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

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

Ways to overcome barriers

creating opportunities for shared learning

support mechanisms (formal and informal)

effective and clear communication processes and protocols for guiding

participation

Service evaluation

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

In-house Advisors

Participation framework Recognition Job description Terms of Reference Paid Support Supervision Training

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

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.

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.

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.

REAL PARTICIPATION IS:

* Joint problem-solving* Joint decision-making

* Joint responsibility