The Consumer Perspective in Mental Health Policy

PHOTO: “Larissa” by Alexandra Crosby is licensed under CC BY-NC-SA 2.0

Dr. Peri O’Shea

Acknowledgements

• The Traditional Owners of the land on which we meet

• People with a lived experience of mental illness and the people who love us

Who am I

Academic and advocate

Lived experience of mental ill health

Childhood & Intergenerational Trauma

Lover, Mother, Nana, Sister, Daughter, Boss, Colleague

and Friend

A ‘carer’

CEO of consumer peak

NSW Consumer Advisory Group – Mental Health Inc. trading as

BEING is the independent, state-wide organisation for people

with a lived experience of mental illness (consumers).

We work with consumers to achieve and support systemic

change.

Vision

For all people with a lived experience of mental illness to

participate as valued citizens in the communities they

choose.

BEING’s ValuesThe lived experience of people is fundamental to all that we do and our work is underpinned by a commitment to upholding international human rights.

We hold the following values:

• Respect and dignity for all to enable inclusion

• Valuing the worth of each individual without judgement

• Social justice and equity to ensure participation

• Promoting equity of access and opportunity in all areas of life

• Belief in recovery to make it possible for every individual to recover

• Integrity to ensure transparency and accountability

• Fidelity to ensure the legitimate representation of the views of consumers

What do consumers want and

need as part of mental health

policy reform?

• to ‘drive’ own recovery • people to work with them; not for or on them

• choice – informed, supported and fair

• to feel safe

• being related to as a person

• belief in recovery, belief in them

• recovery orientated services

• environments conducive to recovery

• access to assistance when required

What people want

to facilitate their recovery

Participation

Participation is a fundamental human right as enshrined in Article 25

of the International Covenant on Civil and Political Rights

(ICCPR)

Participation of mental health consumers results in more effective

public policy and facilitates individual recovery

Levels of Participation

• Participation at all levels

• “Nothing about us without us”

• Consumers should be supported to effectively participate in all

decisions that affect them.

• Participation in our their Recovery

• Participation in Service Quality Improvement

• Participation in Service Planning & Governance

• Participation in Social & Legislative Systems change

Consumer Representation

• Improves the quality of peoples’ lives

• Improves service delivery

• Increases the satisfaction of consumers using mental health and other services

• Creates more equity in the relationships between mental health services and consumers

• Improves public policy, guidelines, laws and community attitudes

Being treated as a person

• Holistic services

• Equity of access to all health services

• Wellbeing

• Inclusion

• Understanding – not discrimination

• Whole of health

• Whole of life

• Services not just treatments

What mental health reforms

mean at the consumer level?

The Mental Health Consumer Movement

• Is a social justice movement,

• Founded upon principles of social justice

• Made up of people with a lived experience of mental illness.

• Exists around the world

• Is known in different countries as:

• the Survivor Movement (USA),

• the User Movement (UK), or

• the Consumer Movement (Australia)

• The people within the movement reflect the diversity of the peoples

around the world

Origins

The consumer movement is thought to have its beginnings at

Bethlem Royal Hospital in London UK which is also known as

Bedlam.

History of MH Reform

• Broader historical and social context – liberal, humanistic, less paternalistic

• Backlash from institutionalisation, loss of basic rights, mistreatment

• 1993 National Inquiry into the Human Rights of People with Mental Illness (Burdekin Report)

• 1994 Creation of CAGs in all States and Territories

• First National and State MH policies and plans

• First National Mental Health Standards

National Recovery Framework

Principles of Recovery

1. Promoting a culture and language of hope and

optimism

2. Person first and holistic

3. Supporting personal recovery

4. Organisational commitment and workforce development

5. Action on social inclusion and the social determinants

of health, mental health and wellbeing

Participation and Policy

The National Standards for Mental Health Services (2010, p. 11) …

Standard 3 – Consumer and Carer Participation

Consumers and carers are actively involved in the

development, planning, delivery and evaluation of

services.

Mental Health Statement of Rights• Examples of access rights mentioned include the following equal

opportunities to access and maintain:

• Health and mental health care

• Housing

• Education and training

• Work and employment

• Legal services

• Income maintenance

• Insurance

• Mental Health consumers have the right to social inclusion and

participation in social life on an equal basis with others without

discrimination of any kind

“Contributing Life” framework

National MH Commission

**Recognition that society generally is not mentally healthy

How these policies affect

consumer access to mental

health services?

The Implementation Challenge

• Culture change at the top does not necessarily translate to change at the frontline

• Must have a plan and resources for implementation

• Mental Health Policy is so far ahead of implementation that the challenge of implementation is perpetuated

• Policies are often seen as rhetoric only

Hospital Culture

Hospitals are machines

Not very human Moving people through

Emptying beds

Keeping order

Not set up to be holistic Wards segregated by illness

Medical specialisations

Will more Choice = Less Choices?

• Policy reform such as ABF and NDIS could potentially

jeopardise good services, programs and practice

• Impact on NGOs

• Limited rural services

Activity Based Funding (ABF)

• Important not to price out:

• Consumer focus

• Flexibility

• Diversity and complexity of needs

• Non-traditional practices that might just work

• Difficulty putting Mental Health services in neat

boxes

Opportunities and Threats

• Recognition that mental illness can be disabling

• Consumer Choice (maybe)

• Self driven (maybe)

• Potential to access non-traditional services

• Issues designing for complexities of mental illness

• Criteria could undermine Recovery

• Potential discontinuity of services

Case Study example:

NSW Mental Health

Strategic Plan

Why we like it and why it just might work

Holistic

Prevention focused

Community focused

Values lived experience

Has buy-in / ownership

Ongoing collaboration - “Champions for Change”

Lived Experience Framework

Role of Peer Workers

Engender hope

‘Fast forward’ relations of trust and recognition

Roles include:

• peer support and mentoring

• individual and systemic advocacy

• service delivery

• participation in service evaluation, research

• input into education and training programs

Informing cultural and structural change in service delivery and

workforce development

Being in AWE of Lived

Experience

• Respect

• Esteem

• High Regard

• Admiration

• AWE

Consumer’s are people

We all have our bad days

Cleveland Clinic Empathy Projecthttps://www.youtube.com/watch?v=cDDWvj_q-o8

THANK YOU

Dr Peri O’Shea

peri@being.org.au

Phone: 02 9332 0200

Website: www.being.org.au

Being receives core and project funding from the Mental Health Commission of NSW