Carers’ experiences of hospitals and mental health units

This Talking Point is about carers’ experiences of times the person being cared for was in hospital or mental health units. It includes carers’ perspectives on the quality of care the person cared for received from the staff of hospitals and mental health units. It looks in particular at the experiences of carers of people with severe mental health problems who also experienced substance use issues, and the experiences of carers living in regional areas. Finally, carers’ experiences of when the person cared for left hospitals and mental health units are also discussed.

Quick Links

Supportive environments and staff
Unsupportive environments and staff
Experiences of carers where person being cared for had a ‘dual diagnosis’
Experiences of carers living in regional areas
Carers’ perspectives on when the person being cared for left hospitals and mental health units

Mike talked about the importance for patient wellbeing of hospital staff having ‘good skills’ and ‘a passion’ for the job. In his experience, public hospital staff rarely displayed these qualities, and so he preferred his wife to stay in private facilities.

Supportive environments and staff

Some carers we talked to described hospitals and mental health units where the person being cared for received treatment as environments that had been supportive of carers and where staff had provided good care for the person cared for. Elizabeth said she was made to feel ‘really welcome’ by staff at the public hospital where her son stayed when he first became ‘unwell’, and George said his son ‘enjoyed’ going into a private hospital where he stayed at times for ‘a month or so’: ‘it gets him into a routine and he gets meals, he’s got company’. Others such as Marta and Elizabeth felt supported just knowing the person cared for was in hospital; Marta said, ‘I was always glad when [daughter] was in hospital because I knew she was in a safe place’.

Sue described her experience of her son’s nine month stay in an adolescent unit when he first became ‘unwell’ as the ‘most horrific’ and yet also the most ‘supportive’ of her life.

Tracey said she was ‘unbelievably happy’ with the care her partner had received in a unit at a private hospital. She described the psychologists and nurses who worked there as ’empathetic’.

Unsupportive environments and staff

Many carers described how in their experience some hospitals and mental health units were not ‘welcoming’ environments for carers, and felt staff regarded carers with suspicion. Lisa said hospitals and mental health units were ‘pretty disturbing places’ to visit. Some carers said they understood the challenging nature of working in hospitals and mental health units and the lack of funding, but nonetheless thought the attitudes of some staff were ‘below par’, as Rowan put it. Rowan described being treated by staff at one public hospital as though he was the ‘local drug supplier that was coming in for a junkie’.

Mike said he wanted to ‘shield’ his children from ‘bad experiences’ they had had when he had taken them to the private ward where his wife sometimes stayed as a voluntary patient.

Katherine thought there needed to be a ‘better relationship’ between staff at the ‘enquiry desk’ and visitors in both public and private hospitals.

Many carers described occasions when they thought the quality of care their loved ones received in some hospitals and mental health units in both the public and private systems had been below an acceptable standard. These carers linked this to an overly rule-bound bureaucratic culture, and treatment practices that seemed like those one might find, as George put it, in a ‘prison’. Some carers talked about what they saw as a bureaucratic mentality of some staff who they said seemed primarily concerned with following their institution’s ‘strict rules’, as Ballagh put it. Rowan recalled when his wife was first admitted to a psychiatric unit that ‘they had a dozen boxes that needed to be ticked and they couldn’t venture past those questions’. Lisa recounted how doctors had automatically wanted to put her brother on a Community Treatment Order after he stopped taking his medication without supervision: ‘they must have boxes that they have to tick or something. It really didn’t fit our narrative’. Sue described how she felt she and her son became a ‘statistic’ to the staff of one public hospital.

Rowan described a psychiatric ward of a public hospital where his wife received treatment after an accidental overdose as an ‘inhumane’ environment for patients and their carers.

Experiences of carers where person being cared for had a ‘dual diagnosis’

The experiences of the several carers we spoke to who supported loved ones diagnosed with ‘mental illness’ who were also experiencing substance use problems (often referred to as ‘dual diagnosis‘), was an example of how an overly bureaucratic approach could cause problems. They described ‘cracks’, as Alexia put it, in the mental health system due to the lack of clear rules specifying the extent to which the person cared for’s mental health treating team could provide support to address their substance use problems. Ballagh said she thought the community mental health service only paid ‘lip service’ to the principle that ‘you can’t attack one problem’ (mental health) ‘without the other’ (substance use).

Alexia recalled witnessing her son experience a ‘horrendous’ withdrawal when his case manager failed to follow up Alexia and her son’s request for support to stop using ice (crystalline methamphetamine).

Ballagh said she felt ‘abandoned’ by doctors who told her they could not give her son medication for his mental health while he was using drugs.

Some carers described what Alexia referred to as ‘dehumanising’ treatment practices that the person cared for had experienced in hospitals and mental health units, including being placed in seclusion or being sedated. George said his son was made a compulsory patient in a hospital that could almost have been ‘a prison’ where ‘he had no freedom’. Alexia said she thought her son and other patients in some public hospitals were at times treated like ‘animals’ not people: ‘The hospitals unfortunately now – it goes by the bed, by the room number – from this number to this number room they see this psychiatrist… It’s like animals [on] the farm where they gave them numbers and they are known by the number not a name or as a person’.

Staff of a public hospital placed Saskia’s sister in a high dependency unit for five days with other women and men some of whom threatened her with violence.

Bev described different occasions when she thought staff of public hospitals had roughly handled or neglected her son and other patients in their care.

Experiences of carers living in regional areas

The main challenges faced by the seven carers we spoke to from regional areas centred on their difficulty in accessing services (hospitals and mental health units) and mental health practitioners. Bev, Bronwyn, Elizabeth and Sasha described having to drive long distances to take the person being cared for to (or pick them up from) the nearest town with a mental health service. Christene, Jeannie and Laura described how in regional areas in recent years, publicity about mental health had raised awareness in the community about the importance of people experiencing severe mental health problems asking for help. However, in regional areas support for people with mental health conditions was not always, as Jeannie put it, ‘available’ when people with mental health conditions and their carers asked for it. Jeannie described trying to support her son to get treatment as a ‘nightmare’ because she said the mental heath unit in her town was ‘more appropriately described as a crisis management unit’. As she explained: ‘It does not provide assessment, diagnosis or treatment for any mental health issues … the only way you can get into the mental health unit is if you are exhibiting signs of suicide or self-harm’. Laura said a key change she wished to see in regional areas was the ability ‘to see a psychiatrist within a short amount of time, so not six months later after you see the first signs … Lives can be lost within the six month period’.

Christene’s husband waited five months for an appointment with a psychiatrist in their regional town after he asked for help when he started experiencing suicidal thoughts.

Jeannie described how regional areas like her country town lacked ‘hospital type environments’ in the public system where people like her son could be properly cared for.

Carers’ perspectives on when the person being cared for left hospitals and mental health units

Carers had mixed experiences of the person cared for leaving hospital. Many carers described how staff of hospitals and mental health units allowed the person cared for to leave hospital under circumstances they felt were not supportive either of their loved one’s wellbeing or of carers’ wellbeing. Unsupportive circumstances included the person cared for leaving hospital when he or she was still ‘unwell’, without an ongoing treatment plan, without communication of a treatment plan to carers, without consideration of their loved one’s living arrangements, and without consideration of carers’ need for time to recuperate. A few carers discussed different supported accommodation services that they described as offering a more positive transition out of hospital. (See also Supporting quality of life of person cared for, and Supporting treatment decisions.)

Bev described how she had to ask the police to find her son after a nurse at a public hospital discharged her son into a town where he knew no one and had nowhere to stay.

Other carers talked about the need for the person being cared for to be supported when they left hospital with what Lisa described as a ‘graduated discharge’. A few carers talked in positive terms about various supported accommodation services that were available. Prevention and Recovery Care (PARC) services (short-term supported accommodation) were seen as particularly valuable for supporting the person cared for when he or she left hospital and for offering carers time to recuperate (supported residential services and community care units were also mentioned). Ballagh said the PARC service was ‘wonderful’: ‘It’s an alternative between hospital and home. Even though [son] doesn’t want to go to begin with, he makes a new friend there when he goes there and it’s useful for us’.

Elena talked about the different types of accommodation that were available for people with severe mental health problems when they left hospital.