Mental Health Consumers and Carers

Last update: 5 December 2012,
by Maureen Bell

Consumer sites related to specific disorders will be found in the appropriate sections listed in the right hand column.

You will find general health information for consumers on my public health page

Lists of books and journal articles relating to consumer and carer issues can be found on my bibliographies and reading lists page.

Consumer and Carer Involvement

Active Outreach: An independent service user evaluation of a model of assertive outreach practice
By R Graley-Wetherall, and S Morgan. Sainsbury Centre for Mental Health, August 2005. This report examines the role of an assertive outreach team in Norwich, from the perspective of its users.

Adversity to Advocacy: Australia's first survey of mental health carers
Conducted by the Mental Health Council of Australia, this survey involved more than 1,500 mental health carers from across the nation coming together in small groups. Mental Health Council of Australia, 2009.

Alfred Psychiatry Consumer Participation (CAPPS) Project "Book of Procedures" Final Report
Jon Kroschel, Alfred Psychiatry Consumer Participation Group, June 2001. The report documents the development of a 'staff-consumer collaboration in treatment' workbook which is designed for collaborative use by case-managers and consumers within individual treatment settings, and aims to assist consumers to participate more fully within their own treatments.

Assessing the Promise: An Evaluation of the Work of the Consumer and Consumer Supporter National Technical Assistance Centers
The Center for Mental Health Services (CMHS) in the United States funds 5 national consumer and consumer-supporter Technical Assistance Centers (TACs) to accomplish the goals of assisting consumers in becoming independent, navigating services, developing self-help skills, communicating and supporting one another, and learning about resources. This 2002 Report is an evaluation of the five (5) consumer and consumer-supporter National Technical Assistance Centers (TACs).

Caring Together: An Action Plan for Carer Involvement in Victorian Public Mental Health Services
Victoria, Department of Human Services, Mental Health Branch, July 2005.

Connecting with Carers is Everybody's Business
By A. Bickerton, K. Hossack, and J. Nair, Working With Families Program, Sutherland Division of Mental Health, South Eastern
Sydney Illawarra Area Health Service.. NSW Health, Copyright 2007.

Consumer and Carer Participation
Resources from the Commonwealth Department of Health and Ageing.

Consumer-Operated Services Evidence-Based Practices (EBP) Kit
United States Substance Abuse and Mental Health Services Administration's (SAMHSA) June 2011.

Consumer/Survivor-Operated Self-Help Programs: A Technical Report, National Mental Health Information Center
Consumer/Survivor-Operated Self-help Programs, A Retrospective Review of the Mental Health Consumer/Survivor Movement and 13 Federally Funded Consumer/Survivor-Operated Service Programs in the 1980s. U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services. February 2001. This is the first comprehensive documentation of the experiences of consumers/survivors in designing and operating their own self-help programs.

COPMI - Children of Parents with a Mental Illness - Consumer and Carer Participation Strategies
Although COPMI's main focus is on children of parents with a mental illness, the resources on this page have a much broader focus.

Developing Services for Carers and Families of People with Mental Illness
Department of Health (U.K.) November 2002. The aim of this document is to help local mental health services develop support services for carers of people with mental health problems.

Experts by experience: strengthening the mental health consumer voice in Tasmania
By Teresa Hinton. Anglicare Tasmania, 15 June 2009.

Identifying the carer project: Final report and recommendations for the Commonwealth Department of Health and Ageing
The "Identifying the carer project" examined issues associated with identification of carers in the context of mental health service delivery. This included current practice, policy and legislation, and preferred processes. Project Manager Janne McMahon, Project Officer Judy Hardy, Project Assistant Ruth Carson. Private Mental Health Consumer Carer Network (Australia), 2007.

In Our Experience: User-Focused Monitoring of Mental Health Services
Sainsbury Centre for Mental Health, March 1998. Reviewing a groundbreaking partnership between Kensington & Chelsea and Westminster Health Authority (KCW) and The Sainsbury Centre for Mental Health, this pilot study demonstrated that people with severe and enduring mental illness can have a voice in decisions about the mental health services that they receive.

Keeping personal budgets personal: learning from the experiences of older people, people with mental health problems and their carers
By Liz Newbronner, Ruth Chamberlain, Kate Bosanquet, Chris Bartlett, Bernd Sass and Caroline Glendinning. This report presents findings from research into the experiences of using personal budgets for older people, people with mental health problems and their carers, with suggestions for good practice and future improvement. Social Care Institute for Excellence.
SCIE Report 40: February 2011.

Mental Health Peer Workforce Competency Development Project
A project of the Community Services and Health Industry Skills Council (CS&HISC) to develop competency standards for the Mental Health peer workforce (consumers and carers).

On Our Own Terms: Users and Survivors of Mental health Services Working Together for Support and Change
By Jan Wallcraft, Jim Read, and Angela Sweeney. Published on behalf of the User Survey Steering Group. London, Sainsbury Centre for Mental Health, 2003.

Our Choices in Mental Health: Improving choice for people who use mental health services and their carers
Sainsbury Centre for Mental Health, Briefing Paper 31, July 2006.
A literature review - Choice Literature Review: A Review of the Literature and Consultation on Choice and Decision-making for Users and Carers of Mental Health and Social Care Services is also available.

Our Voice in Our Future: Benefits
By Michael Turner. London, Shaping Our Lives/National Institute for Social Work, 2000. This booklet is part of the Our Voice In Our Future project which aims to give people who use services and receive benefits provided through the welfare state a say in their future.

Our Voice in Our Future: Mental Health Issues
By Peter Beresford. London, Shaping Our Lives/National Institute for Social Work, 2000.

Our Voice in Our Future: Services and Support
By Michael Turner. London, Shaping Our Lives/National Institute for Social Work, 2000.

Promoting Consumer Participation in Mental Health Research: A National Workshop
Depressiona & Anxiety Consumer Research Unit, Centre for mental Health Research, Australian National University, September 2004.

The Reforms to Mental Health and Their Impact on the Empowerment of Consumers and Carers
University of Melbourne ePrints Repository - Phd thesis by Arthur J Lammers, School of Postgraduate Nursing, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, 2002.

Service User Experience in Adult Mental Health: NICE Guideline
This clinical guidance offers evidence-based advice on ensuring a good experience of care for people who use adult NHS mental health services.
NICE Clinical Guideline CG136 December 2011
The National Institute for Health and Clinical Excellence has also published a Quality Standard describing high-quality care for adults using mental health services in the NHS in England.

Service Users and Carers. Centre for Mental Health
Policy papers and reports from the Centre for Mental Health in London (previously the Sainsbury Centre for Mental Health)

Strengthening consumer participation in Victoria’s public mental health services: Action plan
Melbourne, Portfolio Services and Strategic Projects, Department of Human Services, 2009.

Working Together With Families and Carers
Chief Psychiatrist's Guideline. Victoria, Department of Human Services, Mental Health Branch, April 2005.

Information For Consumers on Mental Disorders and Services

BBC - Health - Conditions - Mental health

CounsellingResource.com -- Counselling & Psychotherapy Resources
A well designed and informative site which will be of value to both clients and mental health practitioners. The site is the work of Greg Mulhauser who has a PhD in Philosophy of Mind.

Eating Disorder Referral and Information Center
The Eating Disorder Referral and Information Center is dedicated to the prevention and treatment of eating disorders. The site provides information about the treatment and prevention of eating disorders and aims to promote social attitudes that enhance a healthy body image and self-esteem.

e-couch: Free help for anxiety and depression
e-couch is a self-help interactive program with modules for depression, generalised anxiety and worry, social anxiety, relationship breakdown, and loss and grief. It provides evidence-based information and teaches strategies drawn from cognitive, behavioural and interpersonal therapies as well as relaxation and physical activity. The original version of e-couch was co-funded by Australia's beyondblue: the national depression initiative and the Centre for Mental Health Research at the Australian National University. e-couch has continued to be expanded and delivered by the Centre for Mental Health Research with funding from the Australian Commonwealth Department of Health & Ageing.

Go Ask Alice!: Emotional Health
Go Ask Alice! is the health question and answer Internet site produced by Alice!, Columbia University's Health Education Program division of the Columbia University Health Service. "Alice" answers questions about relationships; sexuality; sexual health; emotional health; fitness; nutrition; alcohol, nicotine, and other drugs; and, general health. This link is to the section on emotional health.

HealthInsite: A-Z Health Topics
HealthInsite is an Australian Government initiative, funded by the Department of Health and Ageing. It aims to improve the health of Australians by providing easy access to quality information about human health.

Healthy minds. Healthy lives.
Public information from the American Psychiatric Association.

Internet Mental Health
Mental health encyclopaedia for professionals, consumers. Includes extensive descriptions of the symptoms, diagnoses, and treatments of the most common mental health disorders, as well as detailed histories of the most frequently prescribed medications. Online research articles, information booklets, and book reviews are also available.

MEDLINEplus: Mental Health and Behavior Topics These mental health resources have been provided by the National Library of Medicine specifically for consumers. They include ready-made searches of the Medline database, as well as links to reports and pamphlets which can be downloaded. Drawing on the resources of both the National Library of Medicine, and the National Institutes of Health, with additional material from other sources carefully selected and evaluated, this site can be relied upon for high quality, accurate, and authoritative health information.

Mental Health Care
Mental health information from the Institute of Psychiatry, King's College London, South London and Maudsley NHS Trust, and Rethink. This web site is aimed at anyone providing support to someone experiencing mental illness.

Mental Health First Aid for South Australians
By Karin Myhill and Margaret Tobin, developed in collaboration with Social Justice and Country Division, Department of Human Services, Mental Health Unit, 2001.

Mental Health Foundation Publications
A large collection of reports and information booklets for consumers and carers from the Mental Health Foundation in the U.K. Most can be downloaded free of charge.

Mental Health in Multicultural Australia - Translations
From the mental health in Multicultural Australia web site, consumer information in a wide range of languages.

Mental Health Information for All
From the Royal College of Psychiatrists in the U.K. Readable and well-researched information for the public.

Mental Health Wiki
Mental Health Wiki is a guide to mental health problems. It aims to provide high quality and up-to-date information by allowing contributors to edit and improve each other’s material and incorporates material from professional journals, textbooks and websites run by government organisations. Mental Health Wiki is run by a team of researchers at the University of Melbourne in Australia. This team is headed by Professor Tony Jorm whose research focuses on public knowledge and beliefs about mental disorders.

Mentalwellness.com
A site, described as "the online resource for bipolar disorder schizophrenia and general mental health information", is owned by Janssen Pharmaceutical Products. It is well designed and contains personal stories, help leaflets, a small list of videos and books, and a variety of links to information on mental health topics.

Mind > Information > Booklets by series > Understanding...
A series of online booklets on individual mental disorders, from Mind, the leading mental health charity in England and Wales.

Mind & Mood - Healthy Living - Health & Wellbeing
From ABC Health & Wellbeing, the Australian Broadcasting Corporation's online health gateway.

National Institute for Mental Health Publications

National Mental Health Information Center
This web site is a component of the SAMHSA Health Information Network in the United States.

NOAH (New York Online Access to Health) - Mental Health
New York Online Access to Health (NOAH) is a joint project of four New York partners who have worked together on a variety of projects for 26 years: The City University of New York, The Metropolitan New York Library Council, The New York Academy of Medicine and The New York Public Library.

Psych Central
Consumer information on a wide range of topics from a team of mental health professionals, headed by Dr John Grohol.

Psychological Self-Help - Table of Contents
This online book is written by Clayton E. Tucker-Ladd, a clinical psychologist who lives and practices in Illinois. It can be downloaded in its entirety, or chapter by chapter.

PubMed Central
PMC is a free full-text archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health's National Library of Medicine (NIH/NLM). You can search for free journal articles on any mental health topic. This resource is suited to more sophisticated enquiries rather than general information about a mental health problem.

SANE Australia
SANE is a national charity devoted to helping people with a mental illness. Their web site includes downloadable fact sheets on a variety of disorders and their treatment.

Self-help Magazine
I've included this site here rather than on my journals page, as it's more interactive than a traditional journal. It hosts a large number of discussion forums, and offers a free email newsletter.