Consumer, Family and Carer Support, Information and Participation

It is important that clients and their families and carers have access to appropriate information about mental health and drug and alcohol; and also support to navigate their way through the health system.

NSW Health provides a wide range of services for consumers, their families and carers accessing mental health and drug and alcohol services. Many of these programs are described on other pages on this website. There are many additional support and information services for consumers and their families and carers in NSW that are provided by the Non Government (NGO) sector and other government agencies.

MENTAL HEALTH

Mental Health Coordinating Council

The Mental Health Coordinating Council (MHCC) is the peak body for community mental health organisations in NSW. The MHCC provides leadership and representation to its membership, and seeks to improve, promote and develop quality mental health services to the community. Facilitating effective linkages between government, non - government and private sectors, MHCC participates extensively in public policy development.

The MHCC keeps a membership directory that sets out a summary of some of the services offered by NGOs in NSW for mental health consumers, their families and carers.

The MHCC can be contacted by phone on (02) 9555 8388 ext 0, or by email at info@mhcc.org.au.

Mental Health Association of NSW

NSW Health provides funding to the Mental Health Association NSW to provide information and support to mental health consumers, their families and carers, and the general public. The Mental Health Association runs a mental health information telephone line (1300 794 991) and a mental health resource centre in partnership (with NSW Consumer Advisory Group - Mental Health Inc and ARAFMI NSW).

Fact sheets on mental illness, support and maintaining wellbeing are available from the Mental Health Association (downloadable at http://www.mentalhealth.asn.au/information/fact-sheets.html), as is the Way Ahead directory. The directory is a comprehensive list of NSW mental health services, drug and alcohol services, law and justice services, education, practical care services, support employment or accommodation, and much more.

The Mental Health Association NSW coordinates Mental Health Week in NSW, the Workplace Health Promotion Network and conducts other mental health promotion activities.

The Mental Health Association also runs a number of support and self-help groups for people with anxiety disorders, as well as an anxiety specific information service (1300 794 992)

Mental Health Family and Carer Support Services

NSW Health funds four Non Government Organisations (NGOs) to provide Mental Health Family and Carer Support Services across NSW. There is one NGO service provider in each Area Health Service. It is the role of these NGOs to provide:

• Education and training packages which teach families and carers about mental illness and its management and help to build coping skills and resilience
• Individual support and advocacy services for families and carers of people with a mental illness
• Infrastructure support for peer support groups.

A key role for the NGOs delivering support services under this program is to provide support and information to families and carers during the early stages of diagnosis and treatment.

Support for the families and carers of people with a mental illness is available through the following organisations:

Contact each NGO directly for specific details of the specific education and training programs and individual support services they provide.

Primary Carers

The notion that families and carers of someone with a mental illness need greater access to information about the consumer has been recognised in the Mental Health Act 2007 (NSW). Based on the outcomes of consultations conducted during a review of the Mental Health Act 1990 (NSW), it was identified that many people believe it is important that carers, including family members, are given access to information that would assist them in providing care. However, there is also concern that a patient is given some control regarding who is to be provided with information about them.

The 2007 Act balances these views by:

• Enabling consumers to nominate a particular person to be their 'primary carer' so this person can receive information and be involved in treatment planning;
• Establishing a process for identifying who will be the primary carer when the consumer is not able to or does not nominate a particular person; and
• Enabling consumers to exclude a person or persons who they do not wish to receive information about them or their treatment.

For more information on the primary carer provisions of the Mental Health Act 2007 and information on other key changes in the Act, click here.

Other useful websites with relevant mental health information for consumers and carers include:

• Children of Parents with a Mental Illness (CoPMI)
• Auseinet
• Centre for Eating and Dieting Disorders
• Reachout
• Inspire Foundation
• Lifeline
• SANE Australia
• Camp Kookaburra
• Mental Illness Fellowship Australia
• Department of Health and Ageing

DRUG AND ALCOHOL

Network of Alcohol and Drug Agencies (NADA)

The Network of Alcohol and Drug Agencies (NADA) is the peak organisation for Alcohol and Other Drugs Non-Government Organisations throughout NSW.

NADA's activities focus on better positioning the non government drug and alcohol sector through capacity building and contribution to policy development. NADA provides strategic advice to government and advocates on behalf of the sector. The organisation also plays an integral role in the overall governance of the NSW drug and alcohol program through its involvement in specialist council and committee structures.

The organisation also undertakes numerous projects to support service providers and addresses key policy issues for members.

Life Education NSW

Life Education New South Wales is a community-based, independent organisation that provides preventative drug education in schools. The organisation aims to help young people make informed decisions about drugs and their health. Specialist educators utilise their experience and training work with schools to develop programs to support the provision of best-practice drug education.

The Life Education approach is based on national and international research, together with advice from government and professional bodies and is guided by the Principles for School Drug Education, 2004.

Aids Council of New South Wales (ACON)

As users of the services, mental health consumers, their families and carers have a lot of valuable information to share on improvements that can be made to mental health services, including service planning, policy development, setting priorities, training and evaluation, and addressing quality issues in the delivery of mental health services. The process of sharing this information with health services is called participation.

Participation also refers to the process of engaging consumers, their families and carers in decision making about their own care, or that of the person they are caring for.

MENTAL HEALTH

NSW Consumer Advisory Group - Mental Health

The NSW Consumer Advisory Group - Mental Health Inc (NSW CAG) is the peak body in NSW for mental health consumers. It is a state-wide, incorporated, non-government organisation that provides an ongoing mechanism for mental health consumer participation into policy and service development, implementation and evaluation.

It acts as a bridge between consumers in NSW and State and Federal Governments. An essential part of NSW CAG's role is to encourage consumer input in decision making at all levels, concerning mental health provision.

The activities of NSW CAG include:

• Representing consumers on various State and Federal committees;
• ;
• Providing information to consumers, carers and others via mail, E-mail, and website. This includes a free newsletter NSW CAG INFO_LINK and regular information by E-mail;
• Researching and gathering evidence about consumer service needs, best practice mental health consumer participation and quality mental health services;
• Facilitating consumer participation and representation;
• Holding and promoting conferences, seminars and forums of interest to consumers and carers.

ARAFMI NSW (ARAFMI)

ARAFMI NSW Inc has the peak body role for representing and advocating on behalf of the families and carers of people with a mental illness. It is a state-wide Non Government Organisation (NGO) that provides a range of support, education and advocacy services for families, relatives and friends of people with a mental illness. Currently these include:

• An Information and Support Line service;
• Information resources for family members, friends and carers;
• A network of support groups throughout NSW delivered through the four Branch Offices and several rural volunteer groups;
• Facilitation of a Family and Carer Mental Health Program in the NSCCAHS;
• Networking with other organisations especially in the mental health and carers sector
• A variety of other holistic services through their branch network including: Young ARAFMI, family support, meditation, individual advocacy, counselling, education and training and building community awareness.

ARAFMI NSW also undertakes lobbying and systemic advocacy on behalf of carers, family members and friends of people who experience a mental illness, including:

• Holding statewide consultations with families and carers;
• Representing families and carers on various State and Federal committees;
• Providing feedback and submissions during policy development on issues that relate to carers.

DRUG AND ALCOHOL

NSW Users & AIDS Association (NUAA)

NUAA is the NSW state-wide drug user organisation. NUAA's members, staff and supporters are either current or former drug users or are our allies and supporters.

The organisation's role is to be a voice for people who use drugs, with an emphasis on the issues relating to injecting drug use. Funded primarily by the NSW Health Department, NUAA provides education, practical support, information and advocacy to users of illicit drugs, their friends, and allies.

Other structures and processes for participation include the following:

MENTAL HEALTH

The NSW Government Action Plan, Partners in Health - Sharing information and making decisions together, sets out a framework for improving the consistency and coordination of consumer and community participation in Health across NSW. It builds on existing participation mechanisms, including Mental Health Community Consultative Committees. The Partners in Health model includes Area Health Advisory Councils and the state-level Health Care Advisory Council. Thirteen Health Priority Taskforces, including the Mental Health Priority Taskforce, advise the state-level Council.

Consumer Sub-Committee of the Mental Health Program Council

The Mental Health and Drug & Alcohol Office at NSW Health are currently convening a Consumer Sub-Committee of the NSW Mental Health Program Council. The NSW Mental Health Program Council is the peak governance body reporting to the Director, Mental Health and Drug & Alcohol Programs. The Consumer Sub-Committee will provide advice to the Mental Health Program Council on policy, planning and strategic issues related to mental health consumers in NSW. Membership of the Sub-Committee includes a position representing each of the following mental health consumers: young consumers, Aboriginal consumers, consumers from CALD backgrounds, consumers in the forensic mental health system, consumers in the NGO sector, consumers not currently employed in a permanent consumer position, consumer workers employed in an Area Health Service.

Consumers' Perceptions and Experiences of Mental Health Services (MH-CoPES) Project

This project is funded by the Mental Health and Drug & Alcohol Office and managed by NSW CAG. It provides a consumer survey tool integrated with a quality improvement process that strengthens consumer participation to the assessment of service delivery and planning in order to develop better services for the future. Phase One of the project developed a framework and questionnaire to gather and collate consumers' views of the quality and delivery of the NSW public mental health services. Measuring and reporting consumer satisfaction with services is a NSW Government priority. The second phase of MH-CoPES trialled the questionnaire and framework that was developed in the first phase. Training resources, guidelines and promotional materials are currently being developed to enable implementation of MH-CoPES across NSW mental health services.

A report on stage one of the development of the MH-CoPES framework and questionnaires is available here.

A report on stage two of the project will be available over the coming months.

Consumer and Carer Workers in Area Health Services

Mental health consumer workers are employed in various capacities in all Area Health Services throughout NSW. They are seen as key workers in the support and advice they offer to Area Mental Health Services on a range of issues, including consumer advocacy on an individual and on a systemic level and in providing peer support. This includes providing input into supported accommodation options for people living with a mental illness and rehabilitation programs. Some Area Health Services also employ carer workers in a similar role.

Consumer Worker Forum

This Forum was established by consumers in 1998 and is funded by the MHDAO, under the auspice of Sydney West AHS. The Forum comprises paid consumer workers employed by AHSs.

Community Consultative Committees (CCCs)

CCCs have been in place in many Area mental health services since 1994. They aim to facilitate meaningful participation in the planning, delivery and evaluation of mental health services in NSW by consumers, carers, NGOs and the community. Developing the advocacy, negotiation and communication skills of consumers and carers participating in consultative liaison with AHSs was considered an important function of CCCs when they were originally conceived.

National Mental Health Consumer and Carer Forum

The National Mental Health Consumer and Carer Forum (NMHCCF) was established by the Australian Health Ministers Advisory Council (AHMAC) in 2002 in recognition of the need for mental health consumer and carer involvement at the highest level of policy development. It aims to provide a mechanism for mental health consumers and carers to come together to foster partnerships and to ensure the input of consumers and carers into the activities of the mental health sector including the reform of mental health policy and service delivery in Australia.

The NMHCCF is auspiced by the Mental Health Council of Australia and is funded by contributions from each state and territory and from the Australian Government. Membership of the NMHCCF is comprised of one mental health consumer and one carer of someone with a mental illness, from each state and territory.

My Health Record (MHR)

My Health Record is a patient-held health record that aims to facilitate the flow of information between all health service providers, including public allied health services and GPs. A new version of My Health Record, with amendments to make it user-friendly for people with a mental illness or disorder, has been piloted with mental health consumers, families, carers and service providers.

In April 2007, an evaluation of the pilot found that:

• Consumers and service providers reported that those using it well felt more empowered and were able to be more proactive with service providers, including general practitioners;
• While initially service providers had helped consumers to use the Mental Health Record, this changed over time with consumers embracing the document; and
• Consumers who also had chronic diseases were most suited to the Mental Health Record.

Contact your health care provider to obtain a copy of My Health Record.

DRUG AND ALCOHOL

A Guide to Consumer Participation in NSW Drug and Alcohol Services

http://www.health.nsw.gov.au/policies/gl/2005/pdf/GL2005_075.pdf

In 2005, MHDAO developed a guide to assist health staff facilitate consumer access to Drug and Alcohol Services in NSW. This piece of work was developed in response to a decision by the NSW Drug and Alcohol Council to provide assistance to Drug and Alcohol services to implement appropriate consumer participation initiatives at the local level.

The guide includes:

• A framework for consumer participation that complements and aligns with the existing NSW Health policy framework;
• A set of principles that underpin consumer participation in Drug and Alcohol services; and
• Practical advice and strategies suitable for the Drug and Alcohol field.

The intent of this Guide is not to deliver the ultimate guide to consumer participation, but rather to sit alongside and compliment the structures and processes that are in place in each Area Health Service. They are intended to act as an additional resource within the context of Drug and Alcohol.

AFACT NSW -No Shame, No Blame!

AFACT NSW- No Shame, No Blame!- Workers Guide

http://www.health.nsw.gov.au/pubs/2007/pdf/afact_workers_guide.pdf

AFACT NSW - No Shame, No Blame! - Family Comic

www.health.nsw.gov.au/pubs/2007/afact_comic.html

AFACT NSW - No Shame, No Blame. - Family Comic

www.health.nsw.gov.au/topics/alcohol.asp

A set of resources have been developed at MHDAO under the Aboriginal Families and Carers Training (AFACT) project titled 'No Shame, No Blame!'. These resources are designed to assist Aboriginal families and carers cope better with the drug or alcohol problem of a loved one. The resources consist of a workers guide, a family comic and a promotional poster.