1. Consumer-centred Care: Consumer-centred Care: Implications for Service providers and Health Professionals 2011 Biennial Conference Stephen Leeder

2. Carers’ contribution to the coffers! Carers contribute 1.2 b hours of care a year in Australia This ‘saves’ $30.5 b in caring costs each year. The Australian Government Productivity Commission draft report Caring for Older Australians, published January 21, 2011 reveals the extent of informal care in the community – it is an excellent discussion document. (Informal carers receive about half the pages in the document!)

3. Care needs of chronically ill patients Chronic illness can require different approaches to care to that of patients with stable care needs Chronic conditions are complex often with co-morbidities Care needs change as illnesses progress.

4. SCIPPS* - fragmentation of services Chronic conditions often require multi-disciplinary care: –GP –Medical specialist –Community and allied health services –Social services This fragmentation was highlighted by the SCIPPS study, and identified by patients carers and service providers. *Serious and Continuing Illness Policy and Practice Study – NHMRC Program Grant five-year research project into the lives of people with chronic illness, their carers and professional support. Joint project between ANU and USyd.

5. Patient/Consumer Representation Over the past decade there has been an increase in patient/consumer representation on boards and committees (e.g., GP Networks); however this has been largely ad hoc. We are now at the stage where we are beginning to move toward patient/consumer- centred care.

6. Care Integration Groups such as Health One and the Care Navigation team are aiming to improve patient journeys Service providers are beginning to work closely to coordinate care Patient-centred rather than service-centred.

7. Challenges of Care Integration Case management, care planning and patient conferences all require high-level sharing of information eHealth has a growing role to play here and the challenges of sharing complex patient data are significant.

8. Impact on Carers Complex care needs of chronic illness and co-morbidities can create confusion for patients and their carers regarding symptoms and medications (SCIPPS) Fragmented service provision creates a high burden for carers.

9. Self-Management Partnership (Essue et al., 2010) Carers have multiple roles –Home helper –Lifestyle coach –Advocate –Technical care manager –Health information interpreter Negative impacts on carers –Difficulty juggling multiple roles –Carer self-neglect –Conflict with patient and other carers (formal and informal) –Economic burden of care.

10. Often it is hard for carers to obtain financial support because it comes through a puzzling array of agencies!

12. Responses to the challenge The role of carers should receive more attention in the education of doctors and other health professionals Training and support for carers should be expanded and targeted to specific conditions (in some instances) The arrangements for financial support for carers should focus on the carer and less on the person being cared for Success in informal caring should be rewarded and recognised.