The true value of care

Professor Allan Fels, Chairman of the National Mental Health Commission, launched ‘The Economic Value of Informal Mental Health Caring in Australia Report’¹ (Carer’s Report) at Parliament House in Canberra earlier this year. This is the first time an attempt has been made to put a ‘value’ on informal caring for those with mental illness.

The Carer’s Report was commissioned by community mental health service provider Mind Australia (Mind), in collaboration with researchers from the University of Queensland (UQ) school of public health.

The economic value of carers

Researchers confirm that it would cost governments a staggering $13.2bn annually to offset the unpaid informal care provided by around 240,000 families and friends of people with a mental illness. This is 1.7 times more than Australian governments invest in mental health services each year.

Professor Harvey Whiteford, from the University of Queensland, told The Australian Hospital & Healthcare Bulletin (AHHB) that Mind commissioned this research to understand the size of the population providing caring services in Australia and to look at the types of services provided, how many carers are not being supported and what the replacement cost of family carers would be using an economic model.

“The pure economic cost would require a massive commitment from government to replace that care. That’s not meaning that we would want that to happen but it does show carers need to be supported to continue to provide that role which is a much more cost-effective way to have that care delivered, and it’s something that the patients or consumers prefer,” he said.

Mind Australia Chief Executive Dr Gerry Naughtin said, “This important report firms up what many of us already knew — that mental health carers carry a heavy load supporting people with mental ill-health.”

How can carers be better supported?

Professor Whiteford believes strongly that, “Carers need financial assistance and very importantly, to feel they have the support and information they need from the clinician who is treating the mental illness of their friend or family member.”

The report highlights the need for carers to feel more included when dealing with the hospital process, particularly when the person they are caring for is being discharged.

Judy Burke is a carer and founder of Sanctuary, a support group in South Australia for carers of people with a mental illness and borderline personality disorder (BPD).

Burke spoke with AHHB about how not being included in the hospitalisation and discharge process can impact a carer.

“It makes us angry, we feel let down, and being ignored during the discharge process is strange because the patient, our loved one, is nearly always being sent back home to us,” she said.

“Carers have so much information to give. We are with our loved one most of the time so we know them intimately and we can recognise when they are becoming unwell. We also know the factors that will make their condition worse. So it makes sense to me that we, the carers, should be involved as much as possible in the conversation,” Burke explained.

Burke continued, “There will be factors that arise around confidentiality and disclosure that sometimes make it hard for hospitals to have that conversation with a carer. However, nursing staff and clinicians need to understand that keeping a careful, considered line of communication open is vital to supporting the carer who is desperate with worry about their loved one in hospital.”

This is a view shared by Professor Allan Fels. “I am a carer myself and my daughter has schizophrenia. In most cases, carers have a deep, lifelong knowledge of the person they are caring for and anything professionals can do to harness the support of carers is likely to be very productive,” he said.

He goes on to explain, “Professional services are highly valued and essential but professionals are not available 168 hours per week. Carers are typically available all the time. Carers who are close to the person they are caring for can do an excellent job managing their emotional needs.

“When a person is discharged, they need help getting access to the right services and their carer is usually the one to facilitate this. Their carer is also typically alert to signs that the person may require further treatment. If hospitals discharge a patient without considering where they are going, this can lead to the good work of the hospital being quickly undone. The best way to ensure that discharge planning is done well is to involve carers,” said Professor Fels.

Young carers

The Carer’s Report highlights the largely unrecognised number of young people caring for a person with mental illness. Professor Whiteford feels the impact of these statistics is not yet fully understood.

“We often think about carers as being the spouse or the parents of an individual. There are a significant number of young people, even teenagers, caring for a single parent with mental illness,” he said.

“The size of this group is unrecognised and these children and young adults are not being adequately supported. Safety nets are in place through the education system to support children with a parent who has a physical illness or if a child is at risk of abuse but these safeguards do not currently exist for a young person caring for a parent with a mental illness,” he shared.

“One of the young men who spoke at the launch of the report at Parliament House said his mother had schizophrenia and he would have to come home from school because something had happened to his mum. His educational trajectory was interrupted because of this.

“While we know that young people who are caring for a person with mental illness face increased risk of mental illness themselves, we have not addressed the size of the problem in relation to the impact it can have on a young person’s future,” he said.

Dr Naughtin from Mind agrees, “Too many of these dedicated people (carers) have to give up jobs, social connections and sacrifice their own lives to care for their loved one, and while this should be acknowledged and respected, it takes a great toll on their own lives.”

What will be the outcome?

Professor Whiteford believes more must be done to care for the carers. “Carers want to continue providing support to their loved ones and most of the consumers receiving the care say ‘we want care from our family and not a paid employee’.

“For carers to continue to provide this level of support we need to acknowledge their value by providing enough financial and emotional assistance to allow them to continue to do so long-term and special consideration needs to be given to young people caring for a person with mental illness,” he said.

Professor Fels shared his hope that “… this report will see universal recognition in Australia of the economic value of carers and government translation of that recognition into stronger support”.

Reference

1. Diminic S, Hielscher E, Lee Y Y, Harris M, Schess J, Kealton J, Whiteford H. The economic value of informal mental health caring in Australia. 2017. https://www.mindaustralia.org.au/assets/docs/Mind_value_of_informal_caring_full_report.pdf

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