How to increase carers’ participation in supporting treatment decisions

Victoria’s Mental Health Act 2014 recognises the role of carers in the ‘assessment, treatment and recovery of persons who have mental illness’ (section 10(h)). One of the main objectives of the act is to enable and support persons diagnosed with ‘mental illness’ ‘to make, or participate in, decisions about their assessment, treatment and recovery’ (section 10(d)), as well as advance statements and nominated persons (see Carers’ views on advance statements and nominated persons).

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Communication
Receiving information
Providing information
Continuity of care
Continuity of care after a hospital stay
Collaborative practices for supported decision making mechanisms


While Rowan thought the Victorian Mental Health Act 2014 clarified issues about privacy and confidentiality that would encourage practitioners to ‘trust carers’ more, he said carers still needed to make an effort to ‘build rapport’ with psychiatrists.

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Communication

Most of the carers interviewed identified communication with practitioners as one of the main factors that helped them to have a greater role in supporting decision making around the treatment the person being cared for received. Carers distinguished between receiving information from and giving information to practitioners, which they described as separate (sometimes overlapping) processes of communication that had helped them to participate more in supporting treatment decisions for the person cared for.

Receiving information

Lack of communication with practitioners was a key factor many carers said had posed a challenge to their having more of a role in supporting decision making about treatment, particularly when the person cared for first became ‘unwell’. Many described feeling like ‘passive observers’, in Elizabeth’s words, unable to provide support for treatment-related decision making. Lisa said this was a result of being informed or ‘told’ about treatment decisions by practitioners, rather than ‘consulted’.

Elizabeth described how she received information about the treatments her son received when he was made a compulsory patient, but only if she asked for it.

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Some carers who said they had not received much treatment information initially described how practitioners eventually did share more information. As a result, they felt they had more of a role as time passed in supporting treatment decisions. Receiving more treatment information was often dependent, they said, on the quality of the relationship between family carers and practitioners, and on carers taking the initiative to ask practitioners questions. One carer, Rosemary, talked about how her son’s psychiatrist had initiated contact with her, and she said the fact he ‘took the time just to ring’ about her son came as a ‘relief’ to her.

Julie found it helpful when her daughter’s psychologist ‘listened’ when Julie offered ‘feedback’ about what she saw ‘happening for her daughter’ on a daily basis.

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Providing information

Many carers talked about how they had been able to have more of a role in supporting decisions around treatment when they had been able to give practitioners information about treatment their loved ones had received, details of their responses to medication, and ‘feedback’, as Bev put it, about their everyday experiences of spending time with their loved ones. A factor many carers said had restricted their ability to participate more in supporting treatment decisions was their sense that practitioners did not recognise their accumulated experience, knowledge and what Rosemary termed ‘a very big untapped expertise’ gained from caring for their loved ones as being valuable for decision making in relation to treatment. As Christene said, carers ‘know more than what we are given credit for’. Elizabeth thought that carers needed to be ‘in the loop from the start… if the carer and the system can’t communicate, then practitioners are missing out on a lot of valuable information'(see also Advice for mental health practitioners and Advice for other carers).

Rowan described an occasion when his knowledge of his wife’s medical problem was not ‘listened’ to by practitioners. He said this led to her unnecessarily being made a compulsory patient.

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Continuity of care

Consistency of professional care for their loved ones was a factor most carers said had a significant impact on their ability to have more of a role in supporting decisions around their family members’ treatment. Some carers, like Bev and Elizabeth, talked about how they had established relationships with practitioners who had treated their loved ones over many years. They said this provided a context of familiarity in which carers found practitioners were more receptive to listening to their feedback. However, many other carers said the fact their loved ones did not consistently receive treatment from the same practitioners had restricted their ability to have more of a role in supporting treatment-related decision making. Descriptions people used for this included a ‘high turnover of staff’ (George), frequent ‘personnel change’ (Sasha), ‘doctors rotating so often’ (Dianne), ‘lack of continuity’ (Rowan) of care and the ‘rotisserie style of student psychiatrists’ (Lisa). Many, including Dianne, described how they and their loved ones felt they were ‘repeating’ their ‘story over and over again’ to different practitioners.

Bev said she had built a ‘good long-term relationship’ with her son’s GP and psychiatrist over many years. This meant he could ‘pick up’ if she was ‘subtly’ trying to convey something relevant for treatment during sessions with her son.

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Continuity of care after a hospital stay

Many family carers said the lack of continual care when their loved ones left hospital or the failure of practitioners to provide a post-discharge plan particularly restricted the ability of carers to participate in supporting treatment decisions. Something that was often lacking, Bronwyn said, was ‘some sort of direction, planning, goals’ detailing the professional support the people cared for and their carers will receive so they ‘understand that this is what we’re going to do to make sure that you continue to get well’. Kate talked about how when her brother had left hospital there had been little ongoing support offered by his treating team to keep Kate and her mother ‘in the loop’. Lack of continual professional care for carers and their loved ones meant they were not supported to ‘make any headway’, as Rowan put it, once they left hospital. For Rowan, this was problematic not only for the wellbeing of the person being discharged from hospital, but also for the mental health system. As he explained, ‘you’ve got a patient [who] goes to a psych hospital, gets discharged, ‘Okay, you’ve had your holiday, we’ll see you in 12 months’ time or six months’ time, because it’s a revolving door’.

Practitioners needed to ‘involve’ family carers more in decision making about treatment after their loved ones left hospital, Alexia said. This could help ‘prevent’ carers’ loved ones from becoming ‘unwell’ again.

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Collaborative practices for supported decision making mechanisms

Some carers proposed the need for ‘collaborative’ practices, as Lisa said, that could address the challenges carers faced around communication and continuity of care, and also support carers to participate more in implementing the advance statement and nominated person mechanisms. Lisa said she thought that, while supported decision making mechanisms like the advance statement were ‘a great start’, they also needed to be supported by inclusive practices that ‘involved the primary support person in the decision making, if the consumer consents to that’.

Most of the collaborative practices that carers proposed centred on enabling family carers to work with their loved ones and practitioners on what Rowan called ‘early intervention’ strategies. They said this could prevent their loved ones from becoming so ‘unwell’ that they become subject to compulsory treatment, whilst at the same time supporting the agency of the person being cared for.

Rowan took part in a working group with consumer team leaders on ‘early intervention’ practices. Their aim was to avoid the ‘end result’ of hospitalisation and thereby prevent the advance statement from ‘kicking in’.

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Kate said she and her mother were going to make in advance a plan they could ‘refer to in the future’. This would support them to ‘get clear’ on who they would contact to support them and Kate’s brother if he became ‘unwell’ again.

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A main focus of the collaborative practices that carers proposed was identification of early signs or ‘triggers’, in Rowan’s words, that could be taken to indicate the person cared for was becoming ‘unwell’. Carers felt that identifying these signs could help them to then respond by encouraging the person cared for to seek or receive preventive treatment. All carers emphasised the need for their loved ones to have a say when they were ‘well’ in identifying the signs of their becoming ‘unwell’. A few, such as Rosemary, suggested their loved ones could advise in the advance statement what signs they wanted carers to look out for. By contrast, Kate suggested carers could identify what some ‘warning signs’ were and then consult the person cared for about them for confirmation. (The next section includes people describing their experiences of caring for loved ones who self-harmed, which some people might find upsetting or distressing to hear and read. All the material on this website is intended to support carers to develop a better understanding of these behaviours, and how to get help for the person cared for. If you need help, visit our resources section Resources for carers of people with a mental health problem for confidential helpline numbers.)

Christene said she thought carers should have the right if they were designated as their loved ones’ nominated person to represent them when they were becoming ‘unwell’.

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Kate thought it was important for her to collaborate with her brother’s case manager on preparing an advance ‘robust plan’. This would give her an ‘external’ perspective on what to do if she observed ‘early signs’ her brother was becoming ‘unwell’.
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