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Our Consumer Place Clearinghouse

Websites

IWAMHS Consumer Participation(InnerWest Area Mental Health Service - Melbourne)
Facilitates improvement of the quality of the service by getting consumer feedback and suggestions for improvements, and by presenting the Consumer Perspective to clinical staff.

What are you?
Discusses the history of the term "consumer" and other terms describing a mental health service user in Australia and other countries.

Keepwell Ltd.
Arana Pearson, the director of Keepwell Ltd, has provided consumer consultancy, facilitation and training for mental health since 1993.

Borderlands website (Victoria)
Provides consultancy to service providers, government and community organisations in the form of program, service and organisational evaluation, social impact research and needs analysis.

The Joanna Briggs Institute
Aims to improve the health status of the global population through the delivery of health care that is based on the best available evidence.

National Perceptions Forum (UK)
A forum which gives an active voice to people who hear voices in the head, people who have perceptions which the normal people aren't able to observe, people with schizophrenia, psychosis, paranoia, mental illness, hebephrenia, mania, schizophrenic spectrum disorders, and other forms of madness.


Consumer / Survivor Stories

Portraying the Fears of Having a Mental Illness
Vicky, a consumer from Queensland discusses the feeling and fears of a person suffering from psychosis, depression, mania, delusions, hallucinations or paranoia.

Peter Beresford
As one of the first "out" mental health service user to become a professor in the US, Peter is endeavoring to improve the Social Work course structure to be more inclusive of people with mental health issues.

User Involvement in Research: Connecting lives, experience and theory - Peter Beresford
Peter discusses service user involvement in research, basing his message on his own and other people's experiences.

Sandy Watson
Sandy has worked within public mental health services in a variety of 'consumer' roles, and currently runs her own business creating training resources, and teaching.

Getting some action at a National level - the lament of a tired campaigner - Merinda Epstein
Merinda discusses the politics of mental health based on the stories of consumers, and describes some unintended consequences of the Mental Heath Act and actions of some mental health organisations.

C & C Project: Consumer and carer experiences of care Survey
Building on the recommendations of the Review of the 2003-2004 Victorian
Survey, the project, incorporates new ways of collecting information about experiences of care, feeding it back to staff and participants, and facilitating consumer and carer involvement in service quality improvement.

Views on Severe Mental Illness
Articles by survivors / National Perceptions Forum (UK)

What we Think about "The System"
Articles by survivors / National Perceptions Forum (UK)

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Consumer Support Sites

Consumers may find further relevant information on one of the following websites:

Ausienet (Australian Network for Promotion, Prevention and Early Intervention for Mental Health)
The key focus of Ausinet is to assist a range of sectors to implement mental health promotion and illness prevention approaches in various settings including mental health and health services, community organisations, schools, NGO's, educational institutions (such as TAFE and universities), and general practice.

Office of the Health Services Commissioner
Provides information to assist health consumers to understand their rights in regards to health information, and assists with conciliation and complaint resolution. Outcomes are used to recommend improvements to services.

Mental Health Foundation
Promotes mental health and positive attitudes towards mental health issues.

Mental Health Legal Centre
Provides a free and confidential legal service to anyone who has experienced mental illness in Victoria where their legal problem relates to their mental illness.

Mental Health Review Board of Victoria
Conducts reviews of, and hears appeals by psychiatric patients being treated involuntarily either as inpatients or on community treatment orders. Information is included on consumer rights, the Mental Health Act 1986 and other Australian mental health tribunals.

Mental Illness Fellowship of Australia
Runs programs to support and represent people with a severe mental illness and their carers.

Australian Mental Health Consumer Network
The peak, national non-government mental health consumer organisation representing the interests of Australian mental health consumers.

CAN Mental Health
An independent, consumer run organisation for people with a mental illness. Promotes and enhances mental health wellbeing and recovery.

The Inner West Consumer Advisory Group (Melbourne)
Provides an opportunity for consumers to meet and discuss common goals, particularly in relation to issues regarding the feedback, evaluation and improvement of services at Inner West AMHS.

SANE Australia
A national charity working for a better life for people affected by mental illness - through campaigning, education and research.

Victorian Mental Illness Awareness Council (VMIAC)
A Victorian not-for-profit organisation whose purpose is to provide support, advocacy and referrals to people who are experiencing, or have experienced in the past, emotional or mental distress. The VMIAC also provides information and education about mental health services to consumers of mental health services and the wider community.

The Queensland Alliance
Represents the Mental Health Community Sector, meeting the needs of people with mental illness or psychiatric disability, including consumer groups, family and carer groups and non-government community-based service providers across Queensland.

Pitane Recovery Centre
A consumer run recovery centre in metropolitan Sydney.

Spectrum: The Personality Disorder Service for Victoria
A service in Victoria that supports the treatment of people who have severe or borderline personality disorder. Spectrum provides a range of programs to support mental health clinicians and their clients.

Mental Health Coordinating Council
Aims to provide leadership and representation on mental health issues and to improve the mental health of the community by promoting and developing non-government organisations in NSW to provide strong quality services.

Mindfreedom.org (USA)
MFI is an independent nonprofit coalition defending human rights and promoting humane alternatives for mental and emotional well being.

Mind (UK)
Working to create a better life for everyone with experience of mental distress by advancing their views, needs and ambitions, influencing policy through campaigning and education, inspiring the development of quality services and achieving equal rights through campaigning and education.

Black Dog Institute
An educational, research, clinical and community-oriented centre dedicated to improving the understanding, diagnosis and treatment of mood disorders. Includes on-line learning programs.


Resource Centres

Where you can find further information

Psychiatric disability Services of Victoria - Resource Centre and Library Catalogue
Training, policy and research: subjects include psychiatric disabilities, mental illness, psychosocial rehabilitation, employment, supported housing, service management, recreation, mutual support and self help, gender issues, dual disabilities and government policy

National mental health consumer clearing house (U.S.)
News and alerts, training curricula, resources, publications, technical assistance

National Empowerment Centre (U.S.)
Recovery stories, consumer run organizations, publications, resources and links, articles

Sainsbury Centre for Mental Health (UK)
Criminal justice, mental health policy, removing barriers

The Brook Recovery, Empowerment & Development Centre - Mental Health Community Coalition ACT
Participation, peer support and recovery; news, photo gallery, links

Beyond Blue
Research, symptom checklist, information, resources, personal experiences in depression, anxiety, bipolar disorder and post natal depression,

Allan Pinches: Mental Health and our community
Community development-based education materials and articles highlighting mental health consumer perspectives.

Consumer outcomes in mental health - Western Australia
Supports the collection of consumer outcome measurements for the WA Public Mental Health sector. Information on outcome measures and rating mental health.

Participate in health publications
Resources to enable consumers to participate in health care and influence the development of health information. Organisation ceased in 2004.

Ausinet consumer and carer issues: Australian Network for Promotion Prevention and Early Intervention for Mental Health
Resources to enable consumer participation in health issues and policy development.

Ausinet - Links
Links to a range of comprehensive consumer resources relating to mental health issues in the community.

Consumer & Community Resource Centre: The Black Dog Institute
Resource Centre and Library in Randwick, NSW providing books, DVDs, audio tapes, activities and events to members Australia wide.

Health Issues Centre - Resources
A range of consumer, carer and community participation resources aimed at ensuring better outcomes in health management.

MIND (UK)
Information produced by Mind including factsheets, booklets, legal information, conferences and training, drug information and links to other organisations.

The Joanna Briggs Institute - Consumer links page
Links to Australian and overseas Internet resources related to community health issues.

Consumer & business directory - quick links
Privacy Victoria
Privacy Victoria is the Office of the Victorian Privacy Commissioner, an independent statutory office created by the Information Privacy Act 2000.

Psychiatric disability Services of Victoria (VICSERV) Resource Centre and Library Catalogue
Located in Elsternwick, Victoria. Provides Books, journals, journal articles, research reports, and audiotapes to members.

Psychiatric Disability Services of Victoria (VICSERV) Online Document Library
On-line full-text resources including Government documents and journals. Topics include mental health promotion, recovery, research and teenage health issues.

Mental Health Consumers and Carers - Adelaide University Library
This page contains links to sites which contain information about consumers and their involvement with mental health services, and information for consumers on various mental disorders and their treatment.

Multicultural mental health Australia
Builds greater awareness of mental health and suicide prevention amongst Australians from culturally and linguistically diverse backgrounds. Includes news, fact sheets (multi lingual), a newsletter, glossary and translation information.

Spectrum: The Personality Disorder Service for Victoria - Resources
Books and journal articles (full text) written on the subject of BPD and related topics.

Mental Health Review Board patient information
Information for involuntary patients in Victoria.

Safety and Quality in Victoria's Public mental health services - Resources
Links to State and Federal bodies dealing with health care standards and research.

National Resource Centre for Consumer Participation in Health - clearing house documents
A selection of publications relating to consumer participation in health.

National Resource Centre for Consumer Participation in Health - key resources
A selection of articles relating to consumer advocacy, some full text.

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Journals - full text

Newparadigm: the Australian journal on psychosocial rehabilitation
Table of Contents - some full text

The Australian e-Journal for the Advancement of Mental Health
A forum for advancing promotion, prevention and early intervention approaches to mental health


Journal Articles

'A very individual thing': Findings on drug therapy in psychiatry from the perspective of Australian consumers / Pam McGrath, Michael Bouwman and Vaidyanathan Kalyanasundaram /Australian e-Journal for the Advancement of Mental Health, 2007

Consumers as tutors - legitimate teachers? / Cathy Owen, Rebecca Reay / BMC Medical Education, 2004

Consumer-Driven Health Plans: Are They More Than Talk Now? / Jon R. Gabel, Anthony T. Lo Sasso, and Thomas Rice / Health Affairs, 2002

Divided loyalties/ Desley Casey / Australian e-Journal for the Advancement of Mental Health, 2006
The inherent issues surrounding employment, such as ethics, lines of responsibilities, code of conduct, confidentiality, integrity, loyalty (and to whom), and participation, are becoming increasingly blurred for the consumers, the consumer group and their actual employers.

What's in a name? Well, when it comes to that widely detested tag "consumer,"...quite a lot, actually / Allan Pinches / Consumer Voice, 1998
Discusses the effect of consumer labels on people living with mental illness.

Recovery in New Zealand: Lessons for Australia? / Mary O'Hagan / Australian e-Journal for the Advancement of Mental Health, 2004
Since 1998, all mental health services in New Zealand have been required by government policy to use a recovery approach. Can Australia learn from this?

Consumer Participation in Mental Health: We Want It! / CathRoper / Health Issues, 2003
Examines a published research paper to highlight the inherent dangers in excluding consumers' perspectives from the research agenda.

Learning from Experience: community participation in the transcultural education of mental health professionals / Mark Loughhead / Synergy magazine, 2003
Consumers from culturally and linguistically diverse backgrounds have a strong role to play in influencing training content and worker education processes.

Thinking about a drug-free future for mental health services / Jim Read book
Discusses the effectiveness of alternative treatments to drug use in treating mental illness from a consumer's perspective.

target="new:>Can recovery be measured? New Paradigm, 2004/
A panel discussion held at the VICSERV conference in April 2004

Recovery in Australia: Slowly but surely / Debra Rickwood / Australian e-Journal for the Advancement of Mental Health, 2004
Australia is slowly but surely moving toward a mental health service system that empowers and
promotes the well-being of people with mental illness.

Consumer perspective employment in the psychiatric service system: a Victorian view on safety issues / Cath Roper / Australian e-Journal for the Advancement of Mental Health, 2003
Opportunities for consumers to explore our employment within the psychiatric service system are urgently needed. This article raises issues and dilemmas concerning un/safety and consumer perspective employment.

Consumer Participation in Australian Health Care / Kate Silburn and Anne Johnson / Health Issues, 2000
As part of establishing the National Resource Centre for Consumer Participation in Health, a national needs assessment was conducted to identify current consumer participation initiatives at different levels in the system, the barriers and issues for consumer participation and an appropriate role for the NRCCPH. This article draws on the findings from this needs assessment.

The myth of representation: The case for consumer leadership / Brenda Happell and Cath Roper / Australian e-Journal for the Advancement of Mental Health, 2006
Australian government policy now embodies a clear expectation that consumers should be participants in all aspects of mental health services. However, a number of barriers have been identified as inhibiting the realisation of this goal.

Enacting policy in mental health promotion and consumer participation / Kathleen Stacey and Sandy Herron / Australian e-Journal for the Advancement of Mental Health Vol. 1, Issue 1, 2002


Books

The following publications are available in full text via the link provided.
The Kit - a guide to the advocacy we choose to do: a resource kit for consumers of mental health services and family carers / Mental Health Council of Australia, 1998

Learning Together: Education and Training Partnerships in Mental Health / Deakin Human Services Australia, 1999
Details a wide range of issues germane to the continuing reform of mental health services in Australia.

Consumer Participation And Carer Participation Across Mental Health Act: A Framework For Action / Produced for Research Centre for Nursing and Midwifery Practice by ACT Health, 2007
Sets out the principles for participation and the structures required for continuous improvements to the quality of relationships between consumers, carers and staff of Mental Health ACT, and the quality of services. Integral to participation is growth of individuals, groups and organisations.

Pathways to Policy / Edited by Jonathan Bureau and Jane Shears, 2007
This toolkit enables NGOs and user groups to promote the voice of service users in the development of mental health policy.

Making Recovery a Reality / Geoff Shepherd, Jed Boardman & Mike Slade, 2008
Mental health services need to change radically to focus on recovery. They need to demonstrate success in helping service users to get their lives back and giving service users the chance to make their own decisions about how they live their lives.

Consumer participation and culturally and linguistically diverse communities / Centre for Culture, Ethnicity & Health, 2005

The Clearinghouse Toolkit and Technical Assistance Catalog / National Mental Health Consumer Self-Help Clearinghouse/Project
These guides are designed to meet the needs of individual consumers and consumer-run businesses and services. Each in-depth guide contains detailed and useful information and is based on extensive research. Basic guides provide concise introductions to topics of importance to consumers.

Self-Help Toolkit / National Mental Health Consumer Self-Help Clearinghouse/Project
A set of materials that can be used to build a self-help group. The Toolkit includes two technical assistance guides: Starting A Self-Help/Advocacy Group and Raising Money for your Self-Help/Advocacy Group.


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Books Available for Sale

These books may also be available in Australian Libraries - http://librariesaustralia.nla.gov.au/apps/kss

target="new">Psychiatric Disability Services of Victoria VICSERV Booklist & order form

Users and Abusers of Psychiatry: A Critical Look at Psychiatric Practice / Lucy Johnston, 2000
A critical account of the day-to-day practice of psychiatry; the author argues that the traditional way of treating mental illness can often exacerbate people's original difficulties leaving them powerless, disabled and distressed.

Mental Health Matters: A Reader / Tom Heller, 2000
A collection of texts which challenge traditional understandings of mental health, emphasising the perspectives of mental health service-users.

In the same boat : the self help kit Collective of Self Help and Social Action Groups, 1998.
A book about self help and social change; ways to start groups and keep them going well.

Working Alongside People With Long Term Mental Health Problems / Rachel Perkins, Julie Repper, 1999
Concentrates specifically on working as allies with individuals who are seriously disabled by mental health problems on a day-to-day basis, enabling the user to gain control of their own destiny as far as possible.

Social Inclusion and Recovery: A Model for Mental Health Practice / Julie Repper, Rachel
Perkins, 2003
Takes as its starting point the lived experience of recovery which is the process whereby individuals can be helped to understand and come to terms with their illness. The role and actions of mental health professionals is explored as part of the process of recovery.

Dilemmas in Community Mental Health Practice: Choice Or Control / Rachel Perkins, Julie Repper, 1998
Links policy, theory and research with the expertise of service providers and users to explore the major debates concerning the provision of mental health services.

Theory and practice of service involvement in research: making the connection with public policy and practice / Lesley Lowes, Ian Hulatt, 2005
What is the purpose of service user involvement in health and social care research? Can service users be involved beyond tokenism to making a valued and full contribution?

Multicultural Mental Health Australia - list of publications

Mental health consumer participation in a culturally diverse society / Andrew Sozomenou [et al.], 2000
Examines participation models and strategies that have successfully engaged consumers, carers and community members to develop, manage and evaluate services.

On Our Own, Together: Peer Programs for People with Mental Illness / edited by Sally Clay, 2005
Describes the inner workings of eight successful peer-run services for mental health consumers, including drop-in centers, educational programs, and peer support/mentoring programs.

The following books are available in Australian libraries. You can look them up on the Libraries Australia web catalogue to see if your local library holds them. You can also request a loan through your local library even if they do not hold them. Go to: http://librariesaustralia.nla.gov.au/apps/kss


Beyond the divide : women's experiences in rural Victorian psychiatric rehabilitation services / Marg Brooks., 2000

Mental health consumer participation in a culturally diverse society / Andrew Sozomenou [et al.], 2000

Building quality : a report of the quality assurance project for self help & mutual support programs / VICSERV, 1997.

Can I call this home?: an evaluation of the Victorian Housing and Support Program for people with psychiatric disabilities / Belinda Robson, 1995

Pathfinders - Consumer participation in mental health and other services: evidence based strategies for the ways ahead / Allan Pinches, 2004

The essential U & I: a one-volume presentation of the findings of a lengthy grounded study of whole systems change towards staff-consumer collaboration for enhancing mental health services / edited by Yoland Wadsworth, 2001

Understanding and involvement (U&I): consumer evaluation of acute psychiatric hospital practice: A project's beginnings / Merinda Epstein, Yoland Wadsworth, 1994

A Model for CALD consumer participation in mental health: a report on the multicultural consumer and community participation in mental health project / Marina Chand, 2005

Consumer participation: an action plan for consumer involvement in Victoria's public mental health services. / Metropolitan Health & Aged Care Services Division, Dept of Human Services, 2007.

Victorian strategy for safety and quality in public mental health services : 2004-2008 / Metropolitan Health and Aged Care Services, 2004

Consumer and carer participation policy: a framework for the mental health sector / National Consumer and Carer Forum , 2004

Speaking from experience: the work of consumer and carer advocates in educating mental health professionals / Mark J. Loughhead, 2005

An evaluation of the consumer participation in staff selection strategy at Northern Area Mental Health Service : final report / prepared by Lyndall Grimshaw, 2004

Journeys to wellness : a consumer and carer perspective on mental health issues : stories of the mentally ill of Tenterfield, New South Wales in their own words. / 2005

Measuring and Responding to Consumer Perceptions and Experiences of Adult Mental Health Services: Stage One - Final Report and Recommendations / Gillian Malins, David (Photgr), 2005


Newsletters

Mental Illness Fellowship of Australia

Network News - Australian Mental Health Consumer Network (AMHCN)

Victorian Mental Illness Awareness Council Newsletter

Voices and echos: The Consumer Newsletter of the Inner West Area Mental Health Service (IWAMHS)

Australian Mental Health Consumer Network Newsletters

SNAP Gippsland: Working together for better mental health Newsletter

Reach out Newsletter - Southern Mental Health

IWAMHS Consumer Newsletters and Bulletins

The Key Update Newsletter - National Mental Health Consumers' Self-Help Clearinghouse Newsletter


Reports / Publications / Conference Papers

Consumer self-rated outcome measures in mental health: A report to the Mental Health Branch, Department of Human Services / Oct 2003
A comparative analysis of the consumer self-rating outcome measures now in use in mental health services throughout Australia, identifying international best practice, and making recommendations towards a uniform national approach.

Enhancing consumer participation within psychiatric nursing academia / Centre for Psychiatric Nursing Research and Practice and Melbourne Consumer Consultants' Group Inc, / Brenda Happell and Cath Roper, Aug 2001
The primary aim of this project was to promote consumer participation in mental health services through the implementation of a role for a consumer of mental health services as an academic staff member of the Centre for Psychiatric Nursing Research and Practice.

Learning Together: Education and Training Partnerships in Mental Health (pamphlet - National Mental Health Strategy)

Force in mental health services: international user / survivor perspectives / Keynote Address Australian and New Zealand College of Mental Health Nurses 29th International Conference Rotorua, 2003 / Mary O'Hagan

Voice, identity and coercion: the consumer/survivor movement in acute public psychiatric services / Julie Johnstone / PHD Thesis - The University of Melbourne, 2002

Promoting Consumer Participation in Mental Health Research: A National Workshop / Centre for Mental Health research / The Australian National University, September, 2004 / Kathleen Griffiths et. al

Education and support mental health consumer participation project - final report June 2007 / Health Issues Centre, La Trobe University, June 2007
This report documents development and implementation of the project. It is intended to provide information for policy development around consumer participation in mental health services.

The challenge to change / Peter Beresford
This session will seek to explore some of the issues and tensions that can currently be identified in developing user, patient and public involvement in research and evaluation. It will be offered from a
service user's perspective drawing on the growing range of developments and initiatives in this area.

Principles for effective housing and associated support for people with mental illness or psychiatric disability / UNSW Consortium, March 2008
This document summarizes principles for effective housing and associated support, aiming to seek feedback, comment and further suggestions from people with an interest in mental health, housing and support in Queensland.

The evidence supporting consumer participation in health / Consumer Focus Collaboration, May 2001
The Collaboration is a national body with representatives from consumer, professional and private sector organisations, and all health departments. Its aim is to strengthen the focus on consumers in health service planning, delivery, monitoring and evaluation in Australia.

Suicide - Mental Illness or Spiritual Crisis? / Conference Paper / "Exclusion and Embrace -
Conversations about Spirituality and Disability" in Melbourne, Australia, 18-21
October 2001 / David Webb

Force in mental health services: international user / survivor perspectives
/ Keynote Address Australian and New Zealand College of Mental Health Nurses 29th International Conference Rotorua, 2003 / Mary O'Hagan

Participatory Action Research in a Psychiatric Unit / PHD Thesis, Victoria University / Robyn Anne Mills, 2006
The experiences of working in an acute psychiatric unit were investigated in this research, undertaken in an acute psychiatric unit of a major public hospital in Melbourne. The design focused on bringing staff and consumers of psychiatric services together with an aim to develop new work practices for mental health practitioners.

Organisational Self-Assessment and Planning Tool for Consumer and Community Participation: A tool for organisations involved in health policy and education/ National Resource Centre for Consumer Participation in Health, April 2003
Designed to assist organisations to determine their commitment and capacity regarding consumer and community participation, and to identify areas of practice that could benefit from consumer participation.

Consumer and Community Participation Self-Assessment Tool for Hospitals / National Resource Centre for Consumer Participation in Health, May 2004
Designed to help hospitals and units within hospitals to assess commitment to and capacity for consumer (patient), carer and community participation.

Involving consumers in improving hospital care: lessons from Australian hospitals
/ Royal Melbourne Institute of Technology / Mary Draper, 1997

Improving health services through consumer participation a resource guide for organisations / Produced by the Department of Public Health, Flinders University, and the South Australian Community Health Research Unit, June, 2000
This guide is for people working in health care organisations who want to increase consumer participation in the planning, management and evaluation of those organisations.

Improvements in rhetoric, but the practice still lags a long way behind: Consumer participation, the most significant change in mental health practice since Burdekin. / Merinda Epstein / Mental Health Legal Centre , 2005
It is imperative at this time of growing public critique that consumers continue to remind society that what is in the best interest of healthy consumer participation is also in the best interest of healthy mental health consumers.

"Let's face it! She's just too f*****d" - the politics of borderline personality disorder. / Mental Health Legal Centre / Merinda Epstein,
Explores some of the central issues that compound the situation for women labeled as having borderline in the judicial and forensic systems in which mental health services are interwoven.

Principles for the protection of persons with mental illness and the improvement of mental health care - Adopted by General Assembly resolution 46/119 of 17 December 1991


Audio / Radio Programs

Social inclusion and mental health - Australia talks Back / Radio National 7/5/08
The Mental Health Coordinating Council in NSW has recently released a document which 'brings together the evidence linking mental health, recovery from mental illness, and the principles of social inclusion.' If social inclusion is relevant to recovering from mental health, how can it be supported?

Deep listening: working with Indigenous mental distress - Transcript from radio program - All in the Mind 7 July 2007