Carers identified?

3.3 The rationale for carer identification and involvement

Page last updated: 2010

3.3.1 Carer rights
3.3.2 Impact of carer identification and participation in relapse prevention for consumers

3.3.1 Carer rights

Australian and international policy and legislation support carers as a partner in the delivery of services to improve outcomes for people with a mental illness.

The contribution that carers make to the support and care of people with mental illness was recognised by the Australian Government in the Mental Health Statement of Rights and Responsibilities (1991). This document, together with the National Mental Health Policy (1992, revised 2008), has been the cornerstone of the National Mental Health Strategy since its inception in 1992. The Mental Health Statement of Rights and Responsibilities,1991 acknowledges that caring and advocacy roles are complex and the relationship between carers and consumers can change frequently and may also vary according to the age of the consumer. The following statement, taken directly from the document, assumes identification but clearly states it as a right that:

"With the consent of the consumer, carers and advocates are entitled to:

  • have access to the consumer;
  • be consulted by service providers about measures under consideration for treatment of the consumer or for his or her welfare;
  • arrange support services such as respite care, counselling and community nursing facilities;
  • exchange information with those providing treatment concerning the consumer's lifestyles and their relationships with others."
[Page 17, Mental Health Statement of Rights and Responsibilities, 1991] Top of page

The document also acknowledges that there may be circumstances where the consumer is unable to give consent or may refuse consent because of their disturbed mental state. In such cases it may be appropriate for service providers and carers to initiate contact and involve those who may be able to assist with the consumer's diagnosis and care.

"Carers and advocates have the right to put information concerning family relationships and any matters relating to the mental state of the consumer to health service providers.

Carers and advocates have a right to help with their own difficulties which may be generated by the process of caring for or acting as an advocate for a person with a mental health problem or mental disorder."

[Page 17, Mental Health Rights and Responsibilities, 1991]

This Statement has been flagged for review as part of the Fourth National Mental Health Plan – An agenda for collaborative government action in mental health - 2009-2014.

A search of available literature continues to reiterate these rights. However, the reports of various projects undertaken over the last fifteen years highlight not only the extensive roles played by carers and their ongoing needs; but also the fact that services continue to ignore, and in some cases actively exclude, carers from assessment and care processes.

A study undertaken jointly by Carers Australia and The Mental Health Council of Australia (MHCA) in 2000 detailed the extensive role played by carers of people with a mental illness and comprehensively described their needs in relation to their caring role. This was subsequently reinforced by the extensive consultations undertaken nationally by the MHCA in 2009 resulting in the report 'Adversity to Advocacy'. It is tragic to read that in 2008 and 2009, more than 1500 carers consulted on a national basis at 116 locations, including those in rural and remote areas and carers as young as nine years old reported the same issues that were identified in the following reports. Top of page

  • The 1993 National Inquiry into the Human Rights of People with Mental Illness ('the Burdekin report').
  • The 2005 Not for Service Report, undertaken by the MHCA.
  • The report of the Senate Inquiry in Mental Health, From Crisis to Community, (2006).
  • The 2007 Identification of the Carer Report, undertaken by the Private Mental Health Sector Consumer and Carer Network.
  • The 2009 House of Representatives Inquiry into Better Support for Carers.
Only Australian reports have been specifically listed. The content of these reports is reflected in the international literature.

Carer rights have also been recognized both internationally and in Australia in the form of Carer Recognition Legislation.

The needs and rights of carers of people with a mental illness have been very comprehensively described over a number of years both in Australia and internationally. However, the literature indicates that the rhetoric far outweighs the action. In the UK, carers have been entitled to an assessment of their own needs since 1995. However, numerous reports indicate that in the majority of cases, carers are still not even offered this opportunity. Many would argue this relates to lack of processes to identify who carers actually are. Top of page

3.3.2 Impact of carer identification and participation in relapse prevention for consumers

The literature is clear that the support needs of consumers and carers are interdependent. There is now good evidence to demonstrate that providing support and education to families/carers provides direct health benefits to consumers.

Dr Margaret Leggatt, a key figure in carer issues, both in Australia and internationally, in 2009 summarised the current evidence for inclusion of families and other carers in delivery of care, in the following statement:

"We now have powerful evidence from over 40 randomized controlled trials carried out over 30 years that supports the inclusion of family and other carers in the treatment and care of their unwell relative, leading to better outcomes for consumers, their carers and for clinicians. These studies meet the 'gold standard' for research; meta–analyses of these studies are included in Pharoah et al (2006), Pitschel–Walz et al (2001) and Cuijpers.P (1999). Briefly summarised, the evidence reveals:

  • a reduction in relapse rates (up to 20%) – resulting in a reduced number of hospitalisations
  • better adherence to medication
  • reduced psychiatric symptoms.
Further research studies show other significant outcomes, such as:
  • improved social functioning of the consumer
  • increased employment rates
  • increased involvement in community
  • reduction in the burden experienced by family carers
  • improved relationships between family members, including improved relationships with the consumer
  • cost effectiveness. Top of page
Leggatt also reports that studies in China, Spain, Scandinavia and Britain have demonstrated that family interventions are effective across different cultures. This is important for consideration of our own culturally and linguistically diverse (CALD) communities in Australia.

All of the research studies utilised three important techniques not usually found in clinical settings. Consumers, family carers and clinicians met together and worked on plans of action that were mutually agreed by all parties. Working together was carried out over an extended period of time until effective communication styles and problem–solving techniques had been achieved. This process combined the experiential knowledge of the consumer and carers with the professional knowledge of the clinician/s. This method of working together overcame situations where fear of breaching confidentiality was used by clinicians to avoid communicating with family carers.

It is surprising then to find that these research findings are not generally known about, let alone implemented into routine clinical mental health care. The late Professor Ian Falloon (2001), a pioneer and international champion of 'integrated' mental health care, has commented:

'All recent authoritative reviews of this body of research have reached a consistent conclusion that further delays in implementing these methods in clinical practice can no longer be justified, either on the grounds of insufficient scientific evidence for their effectiveness, or on account of problems with securing additional manpower resources for implementation.'