Executive summary

In 2007 the Australian Government funded the Private Mental Health Consumer Carer Network (Australia), (hereafter the Network) to undertake a project Identifying the Carer, examining issues associated with identification of carers as a precursor to the future development of a burden of care measures for carers.

In addition, a number of other activities at national, state and territory levels have occurred in recent years that mandate carer engagement in all levels of service delivery. These changes include the following.

• Development in some states of state–based Carers Recognition Legislation.
• Development of the national Carer Recognition Act 2010.
• Development of a specific Carer Standard in the revised National Standards for Mental Health Services, 2010.
• Revision of mental health legislation in some States and Territories to mandate identification in a variety of forms.
• Revision of the National Mental Health Policy [2009] and funding of the Fourth National Mental Health Plan, an agenda for collaborative government action in mental health 2009–2014.
• Publication of the Royals Australian and New Zealand College of Psychiatrists (RANZCP) Guidance Notes, Involving Families, 2000.

The needs and rights of carers of people with a mental illness have now been very comprehensively described in both legislation and policies. Following such comprehensive description one would expect a plethora of information and activities designed to meet these needs. This does not appear to be the case and while some States and Territories have developed guidelines for consumers, family carers and mental health professionals to work together in collaboration and partnership few changes have occurred at a practical level. Many have argued this relates to lack of processes to identify who carers actually are. Top of page

In an attempt to progress these issues the Australian Government in 2009 funded the Network to undertake a further short term project with the following deliverables.

• Development of draft nationally consistent identification policies and good practice protocols.
• Development of draft nationally consistent information packages for carers.
• A search of the international literature revealed a continued focus on carer needs and rights for engagement. Increased evidence is available that substantiates the benefits of carer engagement in all processes of care and treatment. However information related to managing the complexities associated with carer identification is limited with the Network's Report of the Identifying the Carer Project, 2007 prepared by the same author appearing as the primary new work in this area. Some literature is also available regarding identification of general carers in GP practice in the National Health Service in the United Kingdom that has relevance to the carers of people with a mental illness.

For completeness the literature search has been updated and re–describes the following.

• The rationale for carer identification and engagement, including:
  • Carer rights; and
  • Impact of carer identification and engagement in relapse prevention for consumers.
• Impediments to identification, including:
  • Use of the term carer;
  • Privacy and confidentiality;
  • Workforce education and training; and
  • Organisational and cultural issues.
• Advance Directives. Top of page

Consultation was undertaken nationally by way of face to face focus groups in Melbourne, Adelaide, Brisbane and Launceston. Specific invitations were provided to carers identified as having interest and expertise in pursuing this topic as well as carer focused non–government organisations. Service providers and consumers from both public and private services were also invited to participate in this process to achieve balanced views. Telephone consultation was undertaken with Carer groups in other States and Territories and specifically identified individuals with a long history of working with carers. In recognition of their time and expertise, participants were paid a per diem rate for their participation in the focus groups.

In addition, individual meetings were held with representatives from the Royal Australian College of General Practitioners, Medicare Australia, Australian Council of Health Care Standards (ACHS), senior staff from MIND in the United Kingdom and representatives from relevant professional and non–government organisations such as the RANZCP and the Association of Relatives and Friends of the Mentally Ill.

The input of the many carers, consumers and health professionals who gave us their time and wisdom during the consultation phase of the project has been invaluable in exploring the issues.

The overwhelming experience of consultation participants was that, despite the existence of legislation and policies, health services continue to make little or no effort to identify or involve carers. Some stated they felt that the majority of clinicians did not seem to know how to go about this process. Organisational structures and culture were also reported to be counter productive to the processes of identification and engagement. Top of page

In addition, in situations where consumers voluntarily identified their carers or carers self identified there continues to be significant reluctance by many clinicians to include them in care processes. 'Consumer confidentiality or privacy legislation' continues to be cited as reasons for non engagement. It was the experience of participants that individual clinician attitudes and practices prevail in contravention of existing service policies.

This report presents the findings of the project. The literature search, summary of Australian mental health and carer recognition policy and legislation, and report of the consultations provide the evidence base for the following.

• The draft policies and protocols regarding carer identification.
• The content of the information brochure for families and other carers.

Both products are contained within this report and with minimal editing can be re– produced as stand alone documents suitable for further consultation on a national basis with service providers, carers and consumers.

This report presents the findings of the project and summarises these into a series of recommendations for consideration by governments, professional organisations and public and private services. The recommendations are designed to strengthen the identification of, and support for, the important group of people who provide significant and sustained contribution to the care of people with a mental illness.