by Paul Fullerton 1 IEPCP - BSSG - IECHS partnership

My Stroke Story My stroke was in January 2002 Spent several days in Box Hill Hospital Transferred to Royal Talbot with right side hemiplegia and some speech difficulties but no damage to cognition Spent about 2 months in Royal Talbot Now able to walk unassisted but with degraded balance Was very lucky, and very appreciative of care received in public hospital system 2

stroke survivor of 10 years post-graduate training in biological sciences 40+ years in computer industry develop databases and software tools develop websites and eBooks My areas of expertise... 3

Joined Boroondara Stroke Support Group (BSSG) in 2004 BSSG has built productive relationships with... IECHS Uniting Aged Care - Elgin Street Hawthorn Other stroke support groups (e.g., in Bendigo) Involvement in Stroke Community... 4

I became very concerned about many issues... fragmented nature of community stroke support inadequacy of hospital - community transition process resistance of medical/hospital industry to building bridge to community care the ‘recovery black hole’ that trapped many stroke survivors the lack of affordable psychological support for survivors and carers ineffectiveness of state and national stroke bodies to promote community- based stroke support Involvement in Stroke Community... 5

Magnitude of problem in Boroondara... Boroondara is home to 168,000 people 2,800 stroke survivors living in Boroondara today about 500 stroke survivors discharged into Boroondara communities each year (or 9 survivors per week) Burden of Disease for stroke is $16.8 million per annum in Boroondara alone Involvement in Stroke Community... 6

Involvement with IEPCP... I sent to Christoph Foley-Jones in May I am a member of a community-based stroke support group, the Boroondara Stroke Support Group, and I am very concerned about the ineffectiveness of community care available to stroke survivors and their carers following their discharge from hospital back into the community.... much of the excellent rehabilitation work done in subacute facilities is wasted because there in no adequate follow up in the community sector. This means that stroke survivors are very likely to end up back in the hospital system with complaints that can be traced back to the indirect effects of their strokes, and the current fragmented and inadequate community health information systems. I find this situation to be entirely unacceptable, and am finding absolutely no support from within the medical profession to tackle this problem in any meaningful way. 7

Christoph invited me to talk at a Practitioners’ Resource Group meeting on June 20, 2011 decision made to set up a Working Party to discuss stroke related issues On July , first meeting of Stroke Survivors Initiative was held in Box Hill. Christoph Foley-Jones and Mandy Geary (IEPCP) Paul Fullerton (BSSG) Mark Silver (Uniting Aged Care) Helen Newman, Debbie Neill, Julie Cosgrove and Janet Akehurst (MEGPN) Involvement with IEPCP... 8

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During October, we linked up with Dr Harry Majewski, the CEO of IECHS, and decided... to partner with IECHS in applying for a DoHA Grant; to establish a Project Control Group to manage the Stroke Survivors’ Initiative project with IECHS as the lead entity to involve relevant organisations in the Project Control Group, including... IECHS and BSSG IEPCP, MEGPN/IEMML UACVT Royal Talbot, St. George’s and the Cairnmillar Institute Involvement with IEPCP... 10

IECHS played major role... Apply to DoHA for Grant to fund 2 part- time Consumer Consultant positions within IECHS for 3 years to address the hospital - community transition in Boroondara; The DoHA Grant application was... of exceptional quality, evidence-based well argued submitted on 24 December 2011 Involvement with IEPCP... 11

Consumer Consultant position... based on Mental Health Consumer Consultant role community-based, not hospital-based definitely NOT a medical role most effective way to reach target population meaningful role for stroke survivors and/or carers stroke survivors take responsibility for their own community support decrease pressures on primary health care and public hospitals Stroke Consumer Consultant 12

Service delivery aims... encourage and educate survivors and carers carers to take greater responsibility pre- and post- discharge survivors are too overwhelmed early post-discharge survivors and carers encouraged to rebuild lives deliver ‘Life After Stroke’ programs to survivors and carers provide information about available community services continually monitor ‘quality of life’ of survivor and carer pay particular attention to development of negative moods refer to primary care providers as necessary introduce survivors and carers to local support group collect survivor and carer stories build trust and cooperation with primary care providers Stroke Consumer Consultant 13

How will Stroke Consumer Consultant operate... in Community Health Service in Boroondara visit hospitals pre-discharge contact via local GPs post-discharge restricted to Boroondara residents only Stroke Consumer Consultant 14

Project will build effective partnerships that … help survivors and carers make hospital - community transition help survivors and carers to rebuild post-stroke lives help promote self management of chronic disease in communities reduce pressure on primary health care and hospital system Stroke Consumer Consultant 15