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Awareness Support The Australian Lung Foundation Supporting people affected by chronic lung disease Peter Frith Education Chair, COPD National Program The Australian Lung Foundation Professor and Head of Respiratory Services Southern Adelaide Health Service First World Conference of COPD Patients Rome, June 2009 Research www.lungfoundation.com.au Who are we? Not-for-profit organisation, without on-going government funding Established in 1990 by professional society (TSANZ) Autonomous, with representative National Council Brisbane-based with national representation 12 staff (admin, support, projects) awareness support education research www.lungfoundation.com.au Mission P promote lung health R raise funds to encourage research into lung disease I influence public policy S support people living with lung disease E educate the community on impacts of lung disease “2009 Strategic focus to develop partnerships with industry/corporates & governments, evolve lung disease programs, grow LungNet”. CEO ALF awareness support education research www.lungfoundation.com.au Programs LungNet Information & Resource Centre Chronic Obstructive Pulmonary Disease Lung Cancer Lung Cancer Clinical Research (ALTG) Interstitial Lung Disease Multi-Centre Trials Network (MCTN) Research Awards awareness support education research www.lungfoundation.com.au COPD in Australia awareness support education research www.lungfoundation.com.au Burden of COPD in Australia The sixth biggest killer in Australia (AIHW) The third leading burden of disease (Mathers) Affects up to one in five over age 40 (BOLD) Three out of five don’t know they have COPD 52,000 hospitalisations/year (AIHW) The second leading cause of avoidable admissions to hospital (AIHW) Average hospital stay 7.5 days (AIHW) awareness support education research www.lungfoundation.com.au Burden of COPD in Australia Economic Impact of COPD $97 billion $8.8 billion financial costs • Productivity • Direct health expenditure • Welfare payments and taxation foregone $89.4 billion • Lost wellbeing due to disability and premature death awareness support education research www.lungfoundation.com.au Who bears the (financial) costs? Society/ Other 12.2% Employers 4.2% State Govt 3.0% Individuals 45.6% Federal Govt 32.9% Family/ Friends 1.6% Access Economics 2008 awareness support education research www.lungfoundation.com.au Australian Lung Foundation’s COPD National Program awareness support education research www.lungfoundation.com.au COPD National Program Clinical Support Community Awareness Patient Support Research Government Advocacy awareness support education research www.lungfoundation.com.au COPD Committee Structure COPD-X Guidelines General Practice Advisory Group LungNet Support National Council Coordinating Committee Nurse Educator Research Pulmonary Rehab Patient Taskforce awareness support education research www.lungfoundation.com.au COPD Coordinating Committee COPD-X Evaluation Committee awareness support education research www.lungfoundation.com.au Clinical Support - Guidelines Resources to help clinicians COPD-X Guidelines 2.25 million hits in 2008 Action Plans COPD-X Checklist Pulmonary Rehab Toolkits “Check” program through RACGP Resource kit (slides etc) awareness support education research www.lungfoundation.com.au Community Awareness Purpose Early diagnosis Seek test from GP Activities • Annual World COPD Day • Winter Campaign – ‘Clinical Winter’ June 1 • Patient stories • ‘Breath of Life’ music festival • Advocacy campaigns / ongoing awareness support education research www.lungfoundation.com.au World COPD Day 2008 Patient TaskForce awareness support education research www.lungfoundation.com.au Pulmonary Rehabilitation Hospitalisations reduced by 46% total bed days down by 62% 1% have access in Australia ALF role ALF data base Pulmonary Rehab Toolkit and Evidence Guidelines on dedicated website www.pulmonaryrehab.com.au Indigenous Train-the-trainer Advocacy awareness support education research www.lungfoundation.com.au Support for Self-Management Patient handbook 114 support groups 58 rural/remote Educational resources Use of oxygen Better Living with COPD What is COPD Web-site 25,000 – 40,000 visitors/month www.lungfoundation.com.au awareness support education research www.lungfoundation.com.au Self-Management Supporting well-being in the community Pilot low-cost community-based exercise maintenance following pulmonary rehab Targeting fitness industry Fitness instructors trained in pilot areas First classes in July awareness support education research www.lungfoundation.com.au LungNet Freecall number - 1800 654 301 - 4,594 help calls 2008 Education brochures Quarterly LungNet News 12,400 households Self-help support groups Pulmonary rehab database Education days in all States Dedicated website www.lungfoundation.com.au awareness support education research www.lungfoundation.com.au Research Webster Award for Higher Degree Study $100,000 BI COPD Fellowship $120,000 “Pathways to Lung Health: Enhancing self-efficacy in COPD”. Dr Julia Walters Australasian COPD Research Network (ACORN) awareness support education research www.lungfoundation.com.au The ALF’s strategy for the Future Indigenous Lung Health Increase early diagnosis through: Increased access to Spirometry Greater use of guidelines at primary care Equitable access to Oxygen through National Registry Wider access to Pulmonary Rehabilitation Greater awareness by public and government Self-management awareness support education research www.lungfoundation.com.au Acknowledgements • • • • • • • The ALF COPD Coordinating Committee – Director of COPD National Program: Heather Allan – Executive: A/Prof Christine McDonald, A/Prof Ian Yang, Prof David McKenzie The ALF LungNet Team – Program Development Manager: Juliet Brown The COPD Patient TaskForce – Chairs: Dr Bill Scowcroft (d), Bryan Clift, Caroline Scowcroft The ALF National Council – National President: Dr Bob Edwards – Chief Executive Officer: William Darbishire – Director of Development: Margaret Goody COPD-X Guidelines Evaluation Committee – Executive Officer: Juliet Brown – Chair: Prof Michael Abramson Pulmonary Rehab Committee – Executive Support: Juliet Brown, Heather Allen – Chair: Dr Jenny Alison My patients and colleagues at Repatriation General Hospital and Flinders Medical Centre awareness support education research www.lungfoundation.com.au