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Caring for those on the mental health front line

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By Dr Richard Newton, Medical Director, Mental Health CSU, Austin Health

Given October is mental health month, it is timely to remind ourselves of the importance of supporting family and friends who care for people with a serious mental illness. 

We have known for many years supporting carers can improve outcomes for patients with illnesses such as schizophrenia. 

Good quality family and carer support can help people understand and accept the effects of the illness on their loved ones, and help them support that person in a non-critical way.

Such support can reduce relapse rates and re-hospitalisation, improve quality of life and adherence to medication for the person with schizophrenia, and markedly improve the quality of life and reduce the stress of the carer. 

We were taught this as far back as the 1980s, yet even today there are still significant gaps in the provision of these services to families and carers of people with schizophrenia.

In my service, we now ask families and carers to complete a burden-of-care scale, so we can understand what they are experiencing in terms of the stresses of looking after someone. 

We have been able to see the enormous work done, and the emotional stress people experience, as part of caring for someone with psychosis. We also see the enormous impact of the illness on the carers and family members.

Caring for someone with schizophrenia is a long journey.

Often you can see carers pass through the five stages of grief, as set out in the Elisabeth Kubler-Ross model – denial, anger, bargaining, depression and acceptance – as they struggle to understand what is happening to someone they love who has this illness.

At different stages of their journey, carers have different needs and characteristics, but there are few services that are active and effective in flexibly and responsively meeting those differing needs.

All mental health services in Australia and New Zealand place a focus on engaging with families. In Victoria, for example, some years ago the Government passed the Carer Recognition Act, and the new Mental Health Act in that State also contains specific sections around working with families and carers.  

The National Standards for mental health services also include clear requirements for services to work collaboratively with families and carers.  To support this there are a books and web-based services aimed specifically at families or carers. 

However, in most cases, this could be improved by more personal support. Indeed, one of the stresses that families report is a sense of isolation, and this is best alleviated by interacting with other people in the same predicament as themselves.

There have been some positive developments.

One of the benefits of the ‘first episode psychosis service’ that has been pioneered in Australia is the strong focus on working with family and carers, and supporting them. 

Many services now have a carer with experience of helping someone with serious mental illness working in the unit, connecting with families who come in, and helping to put them into contact with an appropriate resource that can help support them in their journey. 

Some of the work these peer workers do has transformed the care experience for families under great stress.

We know there is a whole range of positive outcomes that come from working effectively with those who care for people with psychosis.

There has been some progress but we need to do better. The gap between unmet need and service provision is still wide.