February 23, 2015

Australian COPD Patient Advocate Group Report (CPAG)

Ross Lloyd, Chair

We have had a busy few months since the last LungNet news. November was Lung Health Awareness month and this included World COPD Day held on 19 November.

There were events throughout the country and COPD Patient Advocate Group (CPAG) members and other patients were called upon to speak to the media to help raise awareness of the impact of COPD. With the assistance of a PR company, our stories reached an audience in excess of 1,031,325 through articles in newspapers and on TV, 680,900 listeners who tuned into the radio in addition to those who attended events. A full report of the day is being compiled and will be available late February on the World COPD Day website.

World COPD Day for 2015 is 18 November and we are hoping for continued support from all those who have been involved in the past as well as new participants. Please mark this date in your diaries.

Helen Reynolds, our ACT representative for CPAG, attended the November Parliamentary Friends of the Lung Foundation function. Professor Jennifer Alison spoke about the importance of pulmonary rehabilitation and Helen spoke from a patient perspective. Helen was accompanied by Canberra-based patient (“William”), Helen Cotter from the LungLife support group and health professionals from the Canberra Hospital. While some Parliamentarians had prior knowledge of lung disease, those in attendance definitely had a better understanding after speaking with the patients and health professionals. Due to many competing functions at the end of the year there is not much capacity for politicians to attend, so numbers were low. However, the House of Representatives politicians who attended did speak about lung disease and the work of the Lung Foundation in the House. Lung Foundation Australia hosts two functions a year and they are scheduled for March and October/November in 2015.

It was advised to CPAG that an application has been formally submitted by the Lung Foundation to the Department of Health requesting a Medicare Benefits Schedule (MBS) number for pulmonary rehabilitation. The Department has been very helpful in the application process and if the application successfully moves to the next step work will begin to develop a protocol. The submission was developed in conjunction with the pulmonary rehabilitation committee, supported by key stakeholders and it highlights the strong evidence underpinning this application. There are currently
a limited number of programs in hospitals and within the health service and an MBS item number, will allow private practice physiotherapists and exercise physiologists to provide this service in more remote places. The application process is very thorough, with a number of stages and therefore a final outcome would not be expected before April 2016.

The patient stories have been reviewed and can be read online at www.lungfoundation.com.au/patient-area/stories/. Medicines Australia, the governing body for medicines in Australia, may require the removal of medicine names from the stories due to new regulations, so we are seeking clarification on this. If you do have a patient story to share please send it to the Lung Foundation by post or by emailing enquiries@lungfoundation.com.au.

CPAG has begun linking with LungNet Support Groups and we would like to start including news items from these groups. If your group would be happy to share their newsletter for uploading to the Lung Foundation website, please send by post or by emailing enquiries@lungfoundation.com.au.

We are also interested to hear about what topics are important to you.

The “Travelling with Oxygen” webpage has been completed and can be viewed at www.lungfoundation.com.au/patient-area/resources/travel-tips-with-portable-oxygen/. Please let us know what you think. We would also like to hear about any other information you would like to see on the website. You can let us know your thoughts by contacting us on 1800 654 301 or emailing enquiries@lungfoundation.com.au.

Air quality continues to haunt us as we go through another summer of extremes. The bushfires in Western Australia, South Australia and Victoria over the last months show the risk of lung damage to our firefighters, volunteer firefighters, SES volunteers and those who live in bush fire prone areas.

Those of you who have the advantage of home air-conditioning close your doors and windows and
crank up your systems – but if you rely on split system air-conditioning ensure you monitor the indoor air quality. For those without the luxury of air-conditioning an option is the local shopping centre, where you can escape the air pollution or excessive temperatures. All public buildings are required to meet specific regulations for temperature and ventilation.

If you would like to find out more about air quality in your area, visit our website at www.lungfoundation.com.au/patient-area/lung-diseases/air-quality-and-woodsmoke/.

In June this year we have World Transplant Day and Lung Foundation Australia has asked me to write an article for the May 2015 LungNet News about my lung transplant journey. A disturbing statistic from the World Health Organisation is that in 2012 there were 3,927 lung transplants worldwide, yet in Australia in the same year we had nearly twice that number in deaths from COPD.

I am fascinated by the wire loops that now hold my sternum together – my bling. With apologies to Nicole Kidman and Tom Cruise I am going to name that article – ‘Chest Wired Shut’.

Until next time,