National Carers Week 2023

Insights from Lived Experience Carer Commissioner Jacqueline Gibson

National Carers Week 2023

Jacqueline Gibson image

National Carers Week runs from Sunday 15 to Saturday 21 October 2023. It is a time to recognise and honour the more than 700,00 Victorians who provide care and support to a family member, friend, or loved one.

As Lived Experience Carer Commissioner at the Mental Health and Wellbeing Commission (MHWC), I've found my role as a carer for a family member with mental illness and psychological distress has profoundly shaped my journey and perspective. It has enriched my life with lessons in compassion, resilience, and advocacy. And it has deepened my commitment to making a difference not only in the life of the person I care for, but also in the broader mental health sector.

Furthermore, it has driven my passion to be involved in work that involves system reform and process improvements, particularly when these improvements contribute to the structural and cultural shifts necessary to foster a more compassionate, individualised and inclusive approach towards mental illness, trauma and distress.

The creation of my designated role as Lived Experience Carer Commissioner, underscores the Commission’s unwavering commitment to ensuring that the voices of carers, supporters, and families are acknowledged, valued, respected and uplifted across every aspect of Victoria's mental health and wellbeing initiatives.

This marks an opportunity to harness the potential of the newly enacted legislation stemming from the recommendations of the Royal Commission into Mental Health.

Carers, families and supporters under the Mental Health and Wellbeing Act 2022

Victoria’s Mental Health and Wellbeing Act of 2022 (the Act), effective since 1 September 2023, has already begun reshaping the landscape of Victoria's mental health system, enshrining many of the recommendations of the Royal Commission into law.

The Act recognises the vital role played by families, carers and supporters of people experiencing mental illness and psychological distress and supports the involvement of carers, families and young people in the assessment, treatment, care, support and recovery of people receiving mental health and wellbeing services. The Act includes two key principles that recognise the important role of families, carers and supporters:

  • Family and carer principle — Families, carers and supporters (including children) of a person receiving mental health and wellbeing services are to be supported in their role in decisions about the person’s assessment, treatment and recovery.
  • Lived experience principle — The lived experience of a person with mental illness or psychological distress and their families, carers and supporters is to be recognised and valued as experience that makes them valuable leaders and active partners in the mental health and wellbeing service system.

Compared to the previous Mental Health Act of 2014, the new Act sets a higher standard of accountability to embed the principles into daily practice. Rather than simply ‘having regard’ mental health and wellbeing service providers must make ‘all reasonable efforts to comply’ with and give ‘proper consideration’ to the mental health and wellbeing principles. This requirement extends to principles related to carer's rights as well.

The Act clarifies the role of the nominated support person (formerly nominated person) to focus on advocating for the views and preferences of the consumer and supporting them to communicate and make their own decisions. Read more here.

The Act serves as a cornerstone of our work at the Commission, which will be to dedicate ourselves to upholding and safeguarding the principles enshrined in the Act including the rights of carers.

Complaints from carers, families and supporters

The MHWC will work to ensure that carers are included in the care process, be aware of their rights, have access to information and support, and be treated with the dignity and respect they deserve. This includes continuing to work constructively with public mental health and wellbeing services to ensure compliance with the requirements of the Act and safeguarding rights and principles, including carers’ rights and principles.

Our work is already underway in taking complaints from carers, families and supporters wanting to make a complaint about a public mental health and wellbeing service in relation to their own experience or on behalf of a consumer who has provided their consent. We generally seek consent from the consumer if the complaint is about their experiences.

Caring for someone with mental illness and psychological distress can be a long-term commitment, which is why it is important to access support and know the resources that are available for carers, families and supporters. We have recently compiled a list of resources you can access on our website.

Recognising the role of carers, families and supporters

The significance of carers, families and supporters in the process of mental health recovery cannot be overstated. According to an Australian Burden of Disease study, mental illness in Australia stands as one of the primary contributors to disability. Carers and families exert a profound influence on the lives and daily functioning of the people they care for, dedicating an astounding 106 million hours annually to offer invaluable, often unpaid, mental health support, care, and assistance.

In order to achieve a better system that is driven by the needs, perspectives and requirements of those who rely on it, consumers, as well as carers, families and supporters must be at the helm of all decisions and have a sovereign right to have their voices heard.

For me, carer sovereignty is about the right and agency of carers to be heard, recognised and respected by services when supporting someone with mental illness and psychological distress. Their voices shape and enable the treatment and recovery of the person that they care for. It is imperative to integrate and amplify the perspective of lived experience of carers, families and supporters across all policies. Carers, families are pivotal supporters of individuals living with a mental illness and psychological distress and are deeply intertwined with the person they support.

Their journey grants them a unique lens on the mental health system. Their voices are fundamental to implementing the change as we undergo the reform to Victoria’s mental health and wellbeing system.

As we commemorate National Carers Week 2023, we celebrate the resilience and dedication of carers, families, and supporters while reaffirming our commitment to a more compassionate, inclusive, and individualised approach to mental health and wellbeing in Victoria. Together, we are driving transformative change and ensuring that the rights and voices of those who care for others are upheld and elevated.