Carers identified?

5.3 Summary of discussions of consultations

Page last updated: 2010

  • Carers have an important role to play in all situations where a person has an illness. However, specific identification of carers is most important in situations where their role is likely to be ongoing over a long period of time such as when they are caring for a person with a long term mental illness.
  • The professional judgement of clinicians is recognised however no single clinician or carer can meet all the needs of all consumers. A partnership and recovery approach to care will improve consumer outcomes and decrease the burden on services and carers.
  • The ideal process for identification is by the consumer. These discussions together with the degree of involvement should be negotiated, documented and regularly reviewed at times when the consumer is well. The experience of staff currently working in a carer inclusive manner is that if approached in this manner then the majority of consumers recognise and welcome the involvement of their support network.
  • Some carers who self identify are not necessarily the best people to be involved in the ongoing care and recovery of consumers either because of their past history with the consumer or their own particular needs. However, these carers continue to have rights and mechanisms need to be developed to ensure their needs are met.
  • Some consumers will, from time to time, because of the nature of their illness refuse to identify or to involve carers. All professional interactions with them and written information provided to them needs to reinforce the importance of their support network being actively involved in their care.
  • Consumer refusal to identify does not lesson the burden on carers. It may in some cases increase the burden of care. Top of page
  • Consumer refusal to identify carers and Privacy Legislation is not a basis for preventing clinical staff across a range of settings from having a working relationship with the family/carer. Carers still have a right to give information to clinical staff to assist in assessment, treatment and ongoing care.
  • Identification is not a one-off process. Service providers at all levels, on the basis of existing policies, Carer Recognition Legislation, Mental Health Legislation and National Standards for Mental Health Services have responsibilities to identify and support carers. Cultural and organisational change, policies, protocols, education and support will be necessary to encourage changes in clinical practice.
  • Changes need to occur in all settings however specific opportunities for identification of carers exist in the following circumstances.
5.3.1 Primary care – general practitioners
5.3.2 Referral to specialist MH care
5.3.3 Assessment / admission
5.3.4 Discharge process
5.3.5 Continuing community contact
5.3.6 Relapse prevention plans
5.3.7 Advance directives for treatment / Ulysses agreements

5.3.1 Primary care – general practitioners (GPs)

  • Participants identified the need for a poster that facilitates generic identification of all carers, including mental health carers. These could be placed in waiting rooms/locations where people are already congregating. Development of a form such as that developed by the Princess Trust in the UK was supported.
  • It was suggested that similar messages could be used for TV and hard print ads with information for a single point of contact such as Carers Australia.
  • The UK Greenwich Primary Care Trust protocols for carer identification were supported as important for discussion with the College of GPs to determine if they could be included as part of the Standards for General Practice in Australia. It was acknowledged that this would require incentives to be attached. Modification of the Better Outcomes and Better Access Programs was suggested as one option to further the process of identification. Top of page

5.3.2 Referral to specialist MH care

The GP referral to specialist mental health care, with the approval of the consumer, could specifically include carer identification including a request for contact.

5.3.3 Assessment / admission

  • Emergency Departments may be the first point of contact with the mental health system. While many Departments have introduced specific responses to concerns regarding the appropriateness of this environment to manage people who are distressed and agitated, participants indicated that little has been done to date to use this as an opportunity to identify carers.
  • Participants reported that people referred, or being brought on an involuntary basis to an Emergency Department, are frequently accompanied by family members or friends. This exercise mostly involves long waiting periods and provides an ideal opportunity for identification of carers and initiation of a partnership approach to the care of the person with mental illness.
  • It was considered that the same opportunities exist in first and subsequent presentations to private psychiatrists.
  • Service providers consulted stated that the paperwork associated with the formal admission of a person with a mental illness to a public or private mental health service also provides an opportunity for identification of carers. The use of colour coded forms, as recommended in 2007, requesting permission from the consumer to identify carers via a structured set of questions was supported. They noted however that it may take some days for the consumer to be well enough to answer the questions.
  • Consultation participants felt the completion and review of this form should be an ongoing process that is used as the basis of discussion between all parties. The form should highlight the benefits of involvement of a wider range of people in the care and support of the consumer and seek to clarify the level of involvement that the consumer feels comfortable with each person having. It was acknowledged that these levels may change over time. Top of page

5.3.4 Discharge process

  • All participants agreed that decisions and discussions regarding discharge of a consumer from an inpatient service should ideally focus on practical issues regarding availability of ongoing care and support, accommodation, future appointments and linkages to other services. They indicated that this discussion presents a further opportunity to remind service providers to ensure that carers have been identified and to emphasise to consumers the importance of continued support for their recovery.
  • Carer participants strongly agreed that in undertaking these discussions staff need to be aware that carers may not view themselves as carers, but as partners, parents, sons, daughters etc.
  • It was agreed that it is important that carers feel fully involved at all stages of care, including the decision to discharge the consumer. This is a process of handing over care and carers are critical partners in this process. Ideally, time should be allowed for carers to make choices about:
    • Taking on, or continuing to fulfil, the role of carer; and
    • How much and what type of care they are prepared to provide, taking into consideration family and caring commitments, work, education and social activities.
  • Participants felt that some people feel they have no choice but to continue to provide care even when their personal and physical resources have been exhausted, where they are afraid of the consumer, or where the consumer continues to refuse to acknowledge the role they play. This is an untenable situation for carers who self identify, and the National Standards for Mental Health 2010 and Carer Recognition Legislation now require services to listen to concerns and refer for support to meet the needs identified. Top of page

5.3.5 Continuing community contact

Participants felt that this was the most important time for service providers to discuss with consumers the importance of ongoing support and to work with them to identify who provides support to them and to seek permission for these people to be actively involved in future care. This should be recorded in the notes and updated on a regular basis. The following processes were also noted as possible times to specifically identify carers.

5.3.6 Relapse prevention plans

It was agreed that more emphasis needs to be placed on the development of Relapse Prevention Plans when the consumer is functioning at the best possible level. Ideally this would involve discussion with case managers and clinicians including private psychiatrists and would involve the identification of carers, including the level of involvement the consumer would like them to have. Participants stated that the majority of people with a long term mental illness know they need to have varying levels of support at different stages of their illness and are mostly happy to acknowledge this when they are well. Relapse Prevention Plans could ensure that both consumers and carers could have more say in what happens during acute episodes of illness. Top of page

5.3.7 Advance directives for treatment / Ulysses agreements

  • It was acknowledged that some states also have legislation in place that allows the development of Advance Directives. Historically these have been used primarily for specific instructions regarding treatment for physical illnesses and ageing, however, participants felt they could also be used by people with ongoing mental illnesses to identify who their carers are and the role the consumer wants them to play in any crisis situations and in their ongoing care.
  • Ulysses Agreements were proposed by participants representing children as carers of people with a mental illness as a clear mechanism for identifying carers. A draft for such a document has been included in the appendix. Ensuring such agreements are maintained within all casenotes and kept up to date is particularly important when the caring role has been taken on by children.