Carers NSW submission to the inquiry into health policy, administration and expenditure

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1 18 September 2014 Senate Select Committee on Health PO Box 6100 Parliament House Canberra ACT 2600 Carers NSW submission to the inquiry into health policy, administration and expenditure Carers NSW would like to thank the Committee for the opportunity to submit to this Inquiry. This submission will briefly address key items within the terms of reference highlighting considerations for the 2.7 million Australians who provide unpaid care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Carers NSW would like the Committee to note that the sustainability of Australia s healthcare system depends on the contribution of unpaid carers. Carers have been described by the National Health and Hospital Reform Commission as the invisible health workforce in acknowledgement of their critical and often unrecognised role as the major providers of care in the community. i In 2010 Access Economics estimated that carers provided 1.32 billion hours of unpaid care each year, and that it would cost $40.9 billion to the Australian economy to replace their care with formal care services. ii Despite their essential contribution to our communities, carers are a socially disadvantaged group who are particularly vulnerable to poor health. It is well established that carers are more likely than non-carers to experience reduced physical, mental and emotional health. Australian studies have demonstrated that carers are 40 per cent more likely to suffer from at least one chronic health condition when compared to the rest of the community, and commonly experience depression. iii Carers are more likely to report high blood pressure, high cholesterol, be categorised as overweight or obese, and are more likely to be experiencing chronic pain or carrying an injury associated with caring. iv Inquiries into health policy, administration and expenditure must therefore explicitly recognise the impact of reforms on the 12% of Australians who are carers. Carers NSW is very concerned about the direct and indirect impact of the Federal Budget on carers. As well as facing additional costs when seeking health treatments, Carers NSW is concerned that the scale of cuts within the Federal Budget may compromise the standard of health services that carers receive in NSW. Carers NSW urges the Committee to consider how health policy and the allocation of resources can be optimised to promote carers health and wellbeing and sustain carers important role in our community.

2 About Carers NSW Carers NSW is an association for carers in NSW. We are a member of the national Network of Carers Associations and have an exclusive focus on supporting and advocating for all carers across the state. The vision of Carers NSW is that all carers in NSW are recognised, valued and supported by the community and by governments. Additional costs and the sustainability of Medicare Carers NSW and other Carer Associations across Australia v have drawn attention to the considerable evidence that existing healthcare costs, in addition to the pre-existing costs associated with caring, represent a significant financial burden for carers and their families. Carers NSW believes additional costs, particularly increased Medicare co-payments and pharmaceutical costs, will further compromise access to affordable healthcare and will have a negative impact on the health of some of Australia s most socially disadvantaged groups, including carers. The impact of illness on family members and friends who provide care is significant- many carers are unable to maintain full-time employment, and carers are more likely than non-carers to be living in low income households. 1,vi Carers report that the high costs of health care result in stressful decisions to go without. For some families this may mean going without family leisure, sport and other social activities, or this may mean making drastic and stressful financial decisions such as selling the family home. For many families the cost of health care simply means going without health care, and it is often the carer who avoids their own health treatment due to cost pressures. We regularly hear from carers who place the health needs of the person they care for ahead of their own, and can neglect their own health in the process. I always make sure my mother has her tablets, I will miss out on my own tablets, but mum will have hers I need to the specialist for my thyroid but I have put it off- I can t afford it Carer of elderly mother (September 2014) Although research conducted with carers on co-payments is very limited, consumers and carers across Australia report missing prescriptions and appointments (particularly with specialists) because they are unable to pay for them at the time. vii The Griffith Health Institute recently found that people with chronic illness and their carers in Australia thought that the financial cost of treatment- particularly the cost of medication and consultations with healthcare professionals- was the most concerning aspect of treatment burden. viii 1 In 2012, almost two thirds (65 per cent) of primary carers resided in a household with equivalised gross household income in the lowest two quintiles, compared with 36 per cent of non-carers.

3 These reports are substantiated by a significant body of Australian and international research which highlights the negative impacts that co-payments have on access to essential health services. ix This evidence also highlights that out-of-pocket health expenses adversely affect population groups already experiencing difficulties accessing care, including people on low incomes, the elderly and those with chronic illnesses. Carers NSW is very concerned about the inequitable impact of copayments, as carers are more likely to be represented in all of these population groups. Carers NSW joins the chorus of health experts who have warned that rather than promote sustainability, additional costs will result in Australians delaying preventative health treatment, which will increase in costly emergency department visits and hospital admissions. Carers NSW endorses the findings of the Community Affairs References Committee s inquiry into out-of-pocket costs in Australian healthcare, which amongst other recommendations, considered that the Government should not proceed with further co-payments. x Other costs associated with accessing health care services in regional and rural areas Transport costs associated with accessing healthcare are generally not included in the standard calculations of out-of-pocket costs. This is an important consideration for consumers and their carers in rural and regional areas when travel to any more specialised care is regularly required. Carers living in regional and rural areas identify a lack of transport to health and specialist care services as a main concern. Carers often need to travel long distances to access the health services in regional centres due to the absence of local health services. Australia wide, 45.3 per cent of carers in outer regional and rural areas have difficulty accessing services, compared to 29.4 per cent in inner regional areas and 25.7 per cent in urban areas. xi Almost 40 per cent of carers in remote areas named distance as the main reason for not being able to access services, compared to 17.1 per cent of carers in urban areas. xii Also, consumers and carers often have to relocate to metropolitan areas for lengthy periods of specialist treatment. This can lead to severe financial pressure as families struggle to meet the costs of accommodation, travel and treatment while also facing the loss of paid employment. xiii Travel and accommodation costs associated with healthcare contribute much more to a rural household's total health care costs than for households in the major cities. Better transport to health services will improve health outcomes for many, especially rural and regional carers. Use of health care services declines as the individuals distance from the facility increases. xiv Carers NSW is aware of and promotes the Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) providing subsidies in assisting care recipients and their carers living in rural and regional areas to travel long distances to access specialist medical treatment not available locally. However, based on feedback Carers NSW receives regularly from carers, we believe that the support available certainly does not reflect the real costs of having to travel to large centres for care and being away from one's own work and community. Therefore, Carers NSW agrees with the National Rural Health Alliance s view that these state funded schemes are insufficiently funded, often poorly promoted and imperfectly understood. xv

4 Interaction between elements of the health system Carers NSW is an advocate for integrated care, which aims to improve the quality of care for consumers and carers by ensuring services are well-coordinated around their needs. An integrated health care system needs to provide continuity of care not only within the health system, but also more broadly. Lack of communication and disconnection in health care provision is particularly challenging for carers who are navigating the health system in addition to other service structures, including aged care and disability services. We often hear from carers who are lost in a service maze and are overwhelmed by the different service providers who are involved in their loved one s care. It is these family members who are left to take on the role of care coordinators and advocates for their loved ones, and they often communicate information between health professionals who do not communicate with each other. xvi Even though I felt like I knew the system possibly better than others, I was still intimidated by it. so what happens to an elderly carer or spouse who may be battling their own physical or cognitive limitations? Carer of elderly father (March 2014) Alzheimer s Australia in-depth research has highlighted the experiences of people with dementia and their carers interacting with the health system and community based services. xvii They found services to assist the person with dementia and their carer during the transition from hospital to home were complex and difficult to navigate, and noted that a better, person-centred, transition process from hospital to home is urgently required. xviii Alzheimer s Australia emphasised the need for consultation between health professionals, carers and community-based services in order to help carers navigate the service options available to them. There are also significant challenges for people with a disability and their carer in interactions with the health system. National Disability Services report Creating Inclusive NSW Hospitals, released in July this year, drew attention to these challenges and called for NSW Health to employ specialist workers trained to coordinate the support of people with disability in hospital. xix Carers NSW believes these workers would be well placed to manage interactions between the hospital, people with disability, their families and carers, mainstream health and disability support systems. Carers NSW is particularly keen to see initiatives which support inter-sectoral integration advanced in NSW, and NSW Health s Integrated Care Strategy has committed NSW to innovative models of integrated care. However complex funding arrangements and lack of collaboration between state and federal governments represent barriers to the delivery of integrated care, xx and Carers NSW is keen to see our two governments work in partnership to prioritise and resource the delivery of integrated care.

5 Better integration and co-ordination of Medicare services Carers NSW would like to report our positive experiences in working with Medicare Locals (MLs), and Carers NSW considers that MLs currently have a critical function in better integrating and coordinating primary health care. Carers NSW has engaged with Medicare Locals across the state, including through representation at Board level as well as collaboration on new projects and programs. Some of Carers NSW most active engagement with MLs has occurred through Partners in Recovery (PIR). Our positive experience working with MLs through Partners in Recovery has demonstrated that MLs have significant potential to facilitate integration by collaborating with diverse sectors of the community. PIR does not provide clinical services but instead builds partnerships with a range of stakeholders which includes, but is not limited to, the traditional primary medical system. Carers NSW has seen how MLs can bring together health providers and clinicians, consumer and carer representatives, government agencies (such as the NSW Police Force), and not-for-profit organisations who support consumers and carers, to increase local knowledge of available supports, identify local needs and address service gaps. Whilst it is still early days for MLs, Carers NSW believes that these models of care co-ordination promote efficiency by building the capacity of existing providers in the area to support consumers and carers, whilst avoiding the duplication of services. As a smaller number of Primary Health Networks (PHNs) are set to replace MLs, Carers NSW is concerned that this may impact the ability of these bodies to engage with a diverse range of local stakeholders, and co-ordinate services at a truly local level. Carers NSW supports NCOSS calls for PHN s to at least align with the 15 Local Health Districts in NSW in order to ensure that links between the health systems can be maintained and fostered. Carers NSW also insists that an increased focus on engaging GP s in PHN s does not come at the expense of collaboration with stakeholders from community and health sectors. Improving the capacity of PHNs to engage with diverse stakeholders will assist PHNs to improve the patient and carer journey, support clinicians and providers, identify local health needs, facilitate primary health care initiatives, and be efficient and accountable. Carers NSW recommends that PHNs are resourced appropriately to be able to continue working with the full range service providers who are contributing to the health of our communities. Carers NSW thanks the Committee for the opportunity to contribute to this inquiry. For further information regarding this submission, please contact Carolina Simpson, Policy and Development Officer, on (02) or Yours sincerely, Elena Katrakis CEO Carers NSW

6 i National Health and Hospital Reform Commission (2009) A Healthier Future for all Australians Final Report of the National Health and Hospitals Reform Commission. ii Access Economics (2010) The economic value of informal care in 2010, Report for Carers Australia. iii Carers SA and SA Department of Health (2008) The Health and Wellbeing of Adult Family Carers in South Australia ; Carers Australia, Australian Unity, and Deakin University (2007) The Wellbeing of Australians: Carer Health and Wellbeing, Australian Wellbeing Index Survey 17.1, Melbourne. iv Carers Australia, Australian Unity, and Deakin University, The Wellbeing of Australians: Carer Health and Wellbeing, Australian Wellbeing Index Survey 17.1, Melbourne, 2007 v Carers NSW (2014) ) Submission to the Senate Community Affairs Committee inquiry into out-of-pocket costs in Australian health care; Carers Queensland (2014) Submission to the Senate Community Affairs Committee inquiry into out-of-pocket costs in Australian health care. vi Defined as the bottom 40% of equivalised gross household income. Australian Bureau of Statistics (2012) Disability, Ageing and Carers, Australia: Summary of Findings. vii Sav, A. et. al, Griffith Health Institute, (2013) You say treatment, I say hard work : treatment burden among people with chronic illness and their carers in Australia, Health and Social Care in the Community 21:6, pp viii Sav, A. et. al, Griffith Health Institute, (2013) You say treatment, I say hard work : treatment burden among people with chronic illness and their carers in Australia, Health and Social Care in the Community 21:6, pp ix CHF (2014) Empty Pockets: Why Co-payments are not the solution, report by Jennifer Doggett. x Community Affairs References Committee (2014) Out-of-pocket costs in Australian healthcare, August 2014 xi B Edwards, M Gray, J Baxter, H Boyd (2009) Tyranny of Distance: Carers in Regional and Remote Areas of Australia, Australian Institute of Family Studies, Canberra. xii Ibid. xiii Palliative Care Australia (2004) The Hardest Thing We Have Ever Done - The Social Impact of Caring for Terminally Ill People in Australia, p. 23. xiv The Cancer Council of NSW, Council of Social Services NSW, Community Transport Organisation (2007) No Transport No Treatment, Woolloomooloo: NSW. xv National Rural Health Alliance (2014): Submission to the Senate Standing Committee Community Affairs References Committee Inquiry into the out-of-pocket costs in Australian healthcare, accessed at pdf (17 September 2014) xvi R Olson (2012), Is cancer care dependant on informal carers? Australian Health Review 36(3): xvii Grealish, L., Jamieson, M., Brown, J., Draper, B., Moore, B., Proctor, M., Gibson, D. (2013). The Interaction between Hospital and Community-based Services for People with Dementia and their Carers. Alzheimer s Australia NSW: Sydney. xviii ibid, p. 7. xix NDS (2014) Creating Inclusive Hospitals in NSW. xx ACI (2013) Integrated care for older people with complex health needs, Final Diagnostic Report, Sydney, p

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