Patient Advocacy – CPAG

COPD and Patient Advocates Group – CPAG

The Australian COPD and Patient Advocate Group (CPAG) is an independent group that seeks to raise awareness of COPD and advocate for patients and carers affected by COPD and other lung diseases at a local level.

The Group is comprised of members representing each State and Territory in Australia (we are currently seeking new members).

Members can be either a COPD patient or be a carer for a COPD patient or a person who has been personally impacted by a family member or friend with COPD and therefore has an appreciation and understanding for the challenges faced by patients.  Full Terms of Reference can be provided upon request, please contact enquiries@lungfoundation.com.au

The Group meets regularly via telephone conference to exchange ideas and work together to raise awareness of COPD and lung disease.

CPAG Group members help Lung Foundation Australia to raise awareness of the disease by:

  • working within their local community to utilize community group newsletters, noticeboards and other media to distribute articles about lung disease.  Examples may include church pew bulletins, school newsletters, community noticeboards, etc.
  • promoting consistent messages developed by Lung Foundation Australia about lung disease and best practice management.
  • promoting the patient services offered by Lung Foundation Australia, e.g the 1800 number, LungNet patient support groups, online resources and website.
  • acting as a patient advocate to answer media questions (with support from a health professional or a Lung Foundation representative) during specific promotional campaigns such as World COPD Day.  (optional)
  • seeking opportunities to discuss the impact of COPD and lung disease with their local members of Parliament, local members of State Government, local Council members etc.  Lung Foundation can provide information pages to help guide your conversation to raise awareness of COPD.  Members can ask their local parliamentary representatives to place articles in their constituency newsletters and on their websites etc.
  • promoting Lung Foundation and its resources to their own GP and health professionals that they have contact with.

 

CPAG Projects

  • Patient Online Training – the CPAG group is participating in the development of this exciting new online training for patients and carers.
  • Consultative group for Lung Foundation
    • CPAG provide patient perspective on Lung Foundation’s fact sheet and brochures
    • CPAG is contributing to the development of the Palliative and Supportive Care program and accompanying resource
  • Advocacy Issues
  • Air Pollution concerns
  • Oxygen – equitable access; traveling with oxygen
  • Electricity – overcoming issues with unplanned outages
  • Connecting with LungNet Patient Support Groups around Australia.  CPAG members are aiming to connect with other support groups to hear about what they are doing and ensure that patient concerns are on their agenda.  If you are interested in connecting your group, please contact us on enquiries@lungfoundation.com.au or 1800 654 301

 

Meet the CPAG Members

 

Wyn Thomas (IPF)

I was born in 1944 which makes me 72 years of age this year (2016).  I have six children and, as a result, have had plenty of exciting times in my life. My work background is quite diverse and varied.  I was a primary school teacher in remote communities in the Northern Territory and also…

John Ruttle (COPD)

For as long as I can remember, I have had Asthma.  I am now 70 years old and living with COPD.  I was first diagnosed with Bronchitis 15 years ago.  Then three years later I was diagnosed with Emphysema and two years later, further diagnosed with COPD.   At the time I was given two years…

Caroline Polak Scowcroft

Deputy Chair   Coming soon!

Megan Rushton

Past Chair CPAG (Sep 2012 – Apr 2014) A Sydneysider, I have had a career in management of several law firms and international banking as well as establishing my own practice management business before being diagnosed with Interstitial Lung Disease in late 2010. This diagnosis was made only four months after losing my dear friend…

Ian Venamore (COPD)

Whether you are a patient, carer, clinician or interested bystander, my hope is that you will find interest and relevance in my story about living with COPD.  Whether just diagnosed or living with COPD, these are the most important points as I see them: If you have not done pulmonary rehabilitation – DO IT! Educate…

 

For more COPD patient stories, please click here.

 

Sponsors

The COPD National Program receives unrestricted sponsorship towards the development of training and resources from the following companies:

Foundation Partners:
Principal Partners:

Novartis Pharmaceuticals

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Supporting Partners: GlaxoSmithKline.

GlaxoSmithKline sponsorship is specific to the following activities:  $7,000 CPAG (website, patient stories, support group); $8,800 Review, redesign and reprinting of patient resources (COPD DL brochure; Oxygen Booklet and Save Your Breath booklet); $44,200 Lungs in Action program.