Submission to the Queensland Mental Health Commission Advisory Committee March 2012
Submission was prepared by: Title Sarah Walbank (Policy and Research Officer) Approved by Debra Cottrell (Chief Executive Officer) Submission to Queensland Mental Health Commission Advisory Committee Date March 2012 15 Abbott Street Camp Hill QUEENSLAND 4152 Phone: (07) 3900 8100 Fax: (07) 3843 1403 Email: dcottrell@carersqld.asn.au Website: www.carersqld.asn.au 2012 Submission to the Queensland Mental Health Commission Advisory Committee 2
About Carers Queensland is the peak body representing the diversity of citizens who provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness or are frail aged. Carers Queensland believes that all carers, regardless of their age, disability, sexuality, religion, socioeconomic status, geographical location or their cultural and linguistic differences, should have the same rights, choices and opportunities as all Queenslanders. Our vision is that caring is accepted as a shared community responsibility and that all carers should be able to enjoy optimum health, social and economic wellbeing and participate in family and community life, employment and education like other Queenslanders. Carers Queensland advocates on behalf of carers to influence policies and funding and in doing so, raising awareness of carers needs and issues, enhancing the quality of life of those with caring responsibilities and supporting carers to participate fully in family, education, employment, social and community life. Introduction Carers Queensland welcomes the opportunity to make this submission to the Queensland Mental Health Commission Advisory Committee with regard to the establishment and implementation of the Queensland Mental Health Commission. As the peak representative organisation for carers we believe that we have an important responsibility and are in a unique position to consult, reflect and advocate with and on behalf of the carers living in Queensland, many of whom provide care and support for a person with mental health problems. Carers Queensland believes that carers have a key role to play in the transformation of the health and community care sector and as the peak representative organisation aspires to provide an independent forum in which to take forward the challenges of providing timely, personalised and high quality support to our State s carers and the people they support. Our ambition is to ensure that carers are active partners in the development of State social policy and service delivery. We trust that our knowledge and expertise in carer issues means that we are able to provide the Queensland Government with relevant and trusted information that will ensure that the needs of carers will be recognised, respected and acted upon. This submission has been informed by consultation with carers and Australian and international research. Submission to the Queensland Mental Health Commission Advisory Committee 3
Context One in seven or 494,200 citizens of Queensland identify as providing care and support to another person who has a disability, mental illness, chronic condition, terminal illness or is frail aged. This is considered to be a conservative figure as many individuals, and in particular children and young adults, will see their caring role as a familial obligation and therefore not necessarily identify as a carer i. Carers are central to the care and support of people with mental health problems and are the major providers of care in the community. Caring for a person with mental health problems can be more than a full time job and can literally last a lifetime. The mental health carer role however is not always well understood by others. The tasks undertaken may be different to those generally understood and accepted as caring such as personal care, meal preparation and cleaning. A carer of a person with mental health problems may do many of those tasks but other tasks may include reminding the individual to pay bills, attend appointments, work or rehabilitation, encouraging them to remain medication compliant, providing emotional, social, (and often) financial support and advocating for them in times of acute illness. Carer Legislation The Queensland Carers (Recognition) Act 2008 and the Carers Charter seeks to promote the increased recognition and awareness of carers. The Carers Charter outlines the principles for recognising carers and valuing their expertise and knowledge including: Principle 3 The views and needs of carers must be taken into account together with the views, needs and best interests of the people they care for when making policy decisions. Principle 4 The importance of carers work means that the role of carers should be recognised by including carers, or their representative bodies, in the assessment, planning, delivery and review of services affecting carers. Principle 6 Carers should be recognised a) For their unique knowledge and experience; and b) As individuals with their own needs Principle 7 The relationship between a carer and the person they care for should be respected and honoured. Submission to the Queensland Mental Health Commission Advisory Committee 4
Carer Issues and Concerns The 2010 Mental Health Carers Survey ii found that: 81% of the respondents were female 61.8% of respondents are over 55 years of age 77% of respondents organised the majority of care 20.8% of the respondents care for more than one person with mental health problems 31% of respondents have been providing care for between 11 and 20 years, the median length of time providing care was 10 years and the maximum was 54 years 58% of respondents said that they felt alone and many fear for the future when they can no longer provide care and support The issues and concerns of carers of people with mental health problems have been captured by the Mental Health Council Carer Engagement Project iii. The survey identified 15 issues for carers including: Listening to and respecting carers Stigmatization, discrimination and isolation of carers Education for all professional groups and agencies on carer recognition Recognition of the effect of caring can have on carer physical and mental health Contemporary Social Policy Contemporary Australian social policy is underpinned by the assumption that families and community should and will care for their relatives who have a chronic medical condition or disability including mental ill health. Data provided by the Mental Health Council of Australia and other respected peak agencies indicates that carers are the principal providers of support for people with mental health problems. For some, caring for a person with mental health problems is more than a full time job; with some carers spend as much as 100 hours per week providing support and care iv. Caring is for many people both an activity and an identity. Carers can, and do, develop a strong sense of responsibility for the person they support and over the course of their caring journey develop a considerable expertise in understanding how the individual responds to their illness and treatments, what works well and what doesn t. Submission to the Queensland Mental Health Commission Advisory Committee 5
Whilst current medical and nursing ideology acknowledges the contribution of carers and emphasises the involvement of carers in the clinical setting v anecdotal evidence from carers suggest that the reality is far from the ideology and policy. Anecdotal evidence from carers supported by Carers Queensland vi suggests that carers continue to experience difficulties in accessing appropriate clinical and community support services, that they are frequently not consulted in critical decision making processes and are frequently stigmatised and marginalised as just the carer. Carers have recounted stories of being ignored by clinical staff that refuse to acknowledge the carers role, knowledge and expertise. This personal evidence supports the finding of the Mental Health Council of Australia research of injustice vii and stigma viii which suggests that more than half of carers believed that they are not listened to by clinicians and allied staff. Recommendations The current reform agenda affords an opportunity to improve the way in which Queensland s mental health system recognises and supports carers (including younger carers), to embed best practice models of carer engagement and the principles of the Carers (Recognition) Act 2008 to significantly improve the lives of carers of people with mental health problems. Carers Queensland commends the commitment of the Queensland Mental Health Commission Advisory Committee to actively engage with and champion carer concerns and issues including reducing the stigmatisation and marginalisation they encounter in both the community and clinical settings. Carers Queensland welcomes any opportunity to have input into and work collaboratively with others in the development of strategies and/or programs that promote the role, expertise and knowledge of carers and as genuine partners in care in line with the Carers (Recognition) Act 2008 and the Carers Charter. i Ethnic Communities Council of Victoria, the Centre for Multicultural Youth, Carers Victoria, Refugee and Migrant Young People with Caring Responsibilities: What do we know? Victoria 2011. ii Mental Health Council of Australia, Mental Health Carers Report 2010, Canberra 2010. Downloaded from http://mhca.or.au/index.php/components/rsfiles/download?path=publications/mhca%20carersurv%2 0Layout%2015-11.pdf iii Mental Health Council of Australia, Adversity to Advocacy: The Lives and Hopes of Mental Health Carers, Canberra 2009. Downloaded from http://mhca.or.au/index.php/components/rsfiles/download?path=publications/mhca%20cep%20web LR.pdf iv Mental Health Council of Australia and Carers Australia, Carers of people with mental illness project report. Canberra, 2000. v Allen, D. (2000) Negotiating the role of expert carers on an adult hospital ward. Sociology of Health and Illness, Vol. 2 No.2, 149-171 vi Data obtained from the Family Support and Advocacy Service and Carer Services Officers of Carers Queensland Submission to the Queensland Mental Health Commission Advisory Committee 6
vii Mental Health Council of Australia, Not for Service: Experiences of Injustice and Despair in Mental Health Care in Australia. Canberra, 2005 viii Mental Health Council of Australia 2011, Consumer and carer experiences of stigma from mental health and other health professionals. Canberra. Downloaded from http://www.mhca.org.au/index.php/information-and-publication/159-stigma Submission to the Queensland Mental Health Commission Advisory Committee 7