Carers identified?

5.2 Changes in carer experience since 2007

Page last updated: 2010

The majority of participants from the public sector reported that they were generally unaware of any existing policies regarding identification of carers and that current practice continues to vary significantly from one location to another. Some exceptions to this were identified and followed up during the project. A description of these services can be found in the State and Territory Practice Section 4.

A number of carers and staff from private hospitals reported they have implemented one of the recommendations from the 2007 Identifying The Carer report related to the inclusion of a colour coded form as part of formal admission procedures that asks consumers, at an appropriate time to identify their carers/people they would like involved in their care and specifies the level of that involvement. We were unable to find any examples of public services implementing this process however service providers from the public sector who participated in consultations supported this process.

Many participants were unaware of the 2007 report and its availability on the DoHA web site. All felt that this information is only used by people specifically researching particular topics and that other mechanisms are necessary if the content of such reports is to be brought to the attention of service delivery staff in both public and private settings. The production of hard copies together with an implementation plan was suggested to accompany the placement of the report on the web site.

In general, participants acknowledged that there is evidence at the policy and legislative level of increased acknowledgement of carers rights for participation however, with a few exceptions, these policies are not being implemented.

In fact, the overwhelming experience of participants was that they felt 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.

Changes to Mental Health Legislation in the Northern Territory (2006) and NSW (2007) do appear to have had some impact on clinician practice.

Some changes were also reported in locations where Carer Consultants/Family Liaison Workers have been appointed. Unfortunately, it was reported to us that these appointments have been hampered by the following:

  • Part-time nature of the appointments.
  • Lack of training and support for the individuals appointed to these positions.
  • Attitudes within units they have been appointed to; for example:
    • You are not a clinician - how can we trust you with confidential information?
    • Thank goodness you are here - we wont have to deal with those difficult relatives anymore.
  • Exclusion from team meetings.
  • Organisational structures that prohibit the person actually doing their job.
  • Burnout leading to high turnover in people in these positions.
Use of the term 'carer' is not well understood by either consumers or the people who care for them. Alternative terms were discussed however all acknowledged the need to continue using the term 'carer' because of its common usage within government. The similarities that mental health carers share with 'general carers' is not well understood by people early in their experience of being the carer of a person with a mental illness. At the same time, the differences that apply to people who care for a person with a mental illness (e.g. the episodic nature of the tasks) continues to be poorly understood by government departments responsible for developing funding criteria to facilitate access to the supports required. Top of page

Participants also continued to express the view that asking consumers to identify their carers was frequently counter productive as, if they were to do this, it would be an admission that they were unable to care for themselves. Consumers' identifying their children as their carers was also considered to be problematic as some believed that by revealing this it may lead to the involvement of child protection agencies.

Organisational systems are not conducive to ongoing education and whilst attitudes of staff to consumer participation are very slowly changing this change has been at the expense of carer engagement. Existing staffing practice and systems do not facilitate young clinicians practicing in the manner in which they have been trained.

Substance abuse is increasingly pervasive and it was felt that this may further complicate family relationships and impact on the level to which people wish to be identified as caring for a consumer who may have the double stigma of mental illness, and substance abuse. This was particularly noted in situations where the consumer's behaviour has resulted in contact with the law. It was also mentioned that significant numbers of young children are the 'hidden carers' of people, in particular single mothers, who have substance abuse problems. The issue of co-morbidity also impacts on access to services for consumers thus potentially increasing the burden of care for family and carers.

Participants noted that stigma and discrimination towards both consumers and carers is reducing in the general community and within government departments outside health at a greater rate than it is within mental health services.

Some participants mentioned the carer inclusive delivery of some of the FaHCSIA services supporting people with long-term mental illnesses to live in the community. Top of page

All participants were of the view that identification and engagement of carers is crucial in any recovery based approach to care. They also agreed that change in clinical practice will only occur if it is mandated by legislation, well grounded in policy and protocols, compliance is audited on a regular basis and incentives are associated with positive changes in practice.

Participants in the consultations also queried why there continues to be such reluctance within the mental health sector to identify carers when research clearly demonstrates that better outcomes are achieved for consumers, carers and mental health clinicians by informing and engaging carers early in the planning and on-going delivery of service.

They felt that this research that recognises that carers play a critical role in the process of recovery and relapse prevention is continuing to be largely ignored by both public and private specialist mental health services.