Carers identified?

5.5 Consumer consent

Page last updated: 2010

Participants also acknowledged that the process will be different in each setting depending on whether the consumer has given informed consent or not for identification and engagement. The following situations were described in the 2007 report. Participants in the 2010 consultations continued to agree with the groupings described. They also recognised the additional obligations that are potentially placed on clinicians charged with the responsibility for identifying and engaging with carers. It was also agreed that the processes developed by the Townsville Mental Health Service (see policies and protocols - section 6) provided a useful tool to guide clinicians through this process. The 2007 descriptions have been updated on the basis of information collected in 2010 and re-presented for completeness. They have been incorporated into the policies and protocols.

5.5.1 The consumer voluntarily identifies carers
5.5.2 The consumer refuses to identify carers with whom information can be shared
5.5.3 The consumer is unable to identify carers because of their mental state
5.5.4 The consumer is a child and their ability to consent is in question

5.5.1 The consumer voluntarily identifies carers

This continued to be seen as the ideal although it was felt that this could only be achieved under the following conditions:
  • Development of standardised lists of question prompts to identify who provides support in an ongoing way to the consumer;
  • A willingness to ask the questions and record the information when the consumer is well. Many consumers will need to develop a trusting relationship with service delivery staff if they are to reveal sensitive information, particularly if their carer is a child or young person;
  • A willingness to update the information regularly;
  • A recognition by clinicians of the value of seeking to obtain this information;
  • Staff possess the appropriate knowledge and skills to work with carers. This is particularly difficult when providing care to people whose carers may come from culturally and linguistically diverse backgrounds;
  • Mandatory requirements such as legislation and standards that would require this (now in place); and
  • Regular monitoring by way of accreditation surveys to examine compliance with the process of identification. Top of page

5.5.2 The consumer refuses to identify carers with whom information can be shared

Identification of carers in order to obtain information from them to assist with assessment and diagnosis and to refer them for support, continues to be seen as separate from identification in order to share personal information.

Participants continue to feel that it is a staff responsibility to identify people involved in supporting the consumer via a sensitive set of questions and then to initiate contact to obtain information that could assist with development of plans that would lead to a positive outcome for the consumer. It was also felt that this was a role that could be facilitated by Carer Consultants.

Staff should also clarify with the carers what information they would like shared with the consumer. Carers also have a right to respect for their privacy and confidentiality.

It was acknowledged that consumers have the right to refuse to identify carers, however, all participants felt that obtaining this information is part of a process, not a one off event. It is necessary to regularly review these views with consumers. It was also considered important to inform carers that consent for involvement would be reviewed on a regular basis and the consumer may change their view as the treatment progresses. Top of page

It was interesting to note that it was the experience of service providers who participated in this project, as in the previous one, that consumers rarely refused to identify people who supported them. Identification depended rather on when and how the questions were asked and the reasons provided for asking.

Consultation participants were also clear that even if consumers continue to refuse to identify 'carers' it does not prevent mental health staff from working with families who self identify via their presentation or continued relationship with the consumer. The family/carers are still entitled to information of a general nature, support and referral to carers support organisations. Many examples were provided of the support obtained by carers from being referred to NGOs.

Some mental health legislation requires that carers be notified regarding specific events or clinicians are required to show just cause as to why they have not done so. This is difficult to do until they have been identified. Even where this exists, participants felt that only minimal changes had occurred in practice. These changes were primarily seen as a result of greater carer empowerment.

In addition, it was felt that at any stage of the treatment process carers who self identify should be entitled to provide information to staff to assist with diagnosis and treatment. Top of page

5.5.3 The consumer is unable to identify carers because of their mental state

Participants felt that many such situations could be avoided if Advanced Directives, Relapse Prevention Plans or Ulysses Agreements identifying carers and the desired roles they are to play had been negotiated and documented at an appropriate earlier stage of the consumer's illness. Where this had not occurred participants suggested staff should make a decision in the best interests of the consumer. In such situations it is essential to obtain information to assist with diagnosis and the development of a treatment plan.

It was noted that in some cases if the consumer has no history with the service and they were transported to the hospital by the police it may be difficult to actually identify who the carers are unless they accompany the person. Information may be obtained from the GP if one can be identified. This issue is of particular concern in situations where the carer is a young person and there are no mechanisms in place to identify and inform them what has happened to their parent.

Participants felt that in situations where the consumer's mental state is not stable staff should err on the side of caution regarding sharing of information until the consumer becomes well enough to hold an informed discussion regarding this matter. However, the same conditions should apply as in 5.5.2 above regarding provision of support to carers. Top of page

5.5.4 The consumer is a child and their ability to consent is in question

Mechanisms have been in place for some time within child and adolescent services to address this issue. These situations are governed by a range of legislation. Issues arise, however, when the age of consent varies or when the child lives independently despite being considered a 'minor'. This issue is currently being addressed in some jurisdictions where legislation is being considered to introduce the concept of a mature minor i.e. a person aged 14 to 17 years who is deemed to be able to accept responsibility for their own welfare and presumably "identify" their carer who may not be their legal guardian. In this situation, a child is then defined as a person under the age of 14.

Participants suggest that the same principles contained in the report relating to adults identifying carers should be applied except where legislation specifically provides otherwise.