Download Report

MAY 2015
“Living Well With a Lung Condition”
Official Newsletter of Lung Foundation Australia
Wood Smoke Harms Your Lungs
Dr James Markos, Respiratory Physician, Launceston General Hospital and Lung Foundation Australia
State Chair Tasmania
Wood smoke is harmful to our health and especially to our
lungs. It is made up of tiny particles, smaller than one
thousandth of a millimeter. These tiny particles escape the
filtering system in our nose and they penetrate deeply
into the small bronchial tubes and into the air sacs. Wood
smoke also contains harmful gases, such as carbon
monoxide, and harmful chemicals, like hydrocarbons. In
some ways it is very similar to tobacco smoke which we
know there is no safe level of exposure to.
The people most at risk from wood smoke are those
with serious lung diseases including asthma, chronic
bronchitis, emphysema and bronchiectasis. More than 1
in 10 Australians has a chronic lung disease, so there are
many people at risk. Also at risk are people with serious
heart disease, the elderly and very young children.
High levels of wood smoke have been recorded in many
Australian cities, particularly in the cold inland valleys
in winter. With high levels of wood smoke, more people
experience symptoms such as cough, wheeze and
breathlessness. This increases hospital admissions for
treatment of their lung disease, and sadly more people
will die prematurely from severe lung or heart disease.
In 2014, WHO International Agency for
Research on Cancer concluded that long
term exposure to outdoor pollution,
especially particle pollution which
includes wood smoke, has been shown
to be a cause of lung cancer and bladder
cancer. Tobacco smoking remains by far
the major cause of lung cancer, however
non-smokers are still at a small risk of
lung cancer from air pollution or
environmental tobacco smoke.
Particle pollution levels have fallen in recent years with
more awareness of the dangers. There are government
programs to monitor and regulate air pollution levels.
Environment Australia runs the National Environment
Protection Measure, which is currently reviewing the
regulations for particle pollution. Government programs
have also provided financial incentives to change home
wood heating to less polluting options as in Launceston
and Armidale.
With high levels of wood
smoke, more people experience
symptoms such as cough,
wheeze and breathlessness. This
increases hospital admissions for
treatment of their lung disease,
and sadly more people will die
prematurely from severe lung
or heart disease.
We should all try to keep our air clean
and one important way to achieve this
is by not burning wood. We all need to
keep warm during winter, but there are
cleaner options to heat our homes and
dispose of garden waste.
With winter upon us, now is the time
to consider your lungs as well as those
of your family, friends and neighbours.
Remember, when you can’t breathe...
nothing else matters.
If you would like to find out more about air quality or have an air pollution query, please visit your state or territory website:
Queensland
Department of Environment and Heritage Protection
www.ehp.qld.gov.au
Western Australia
Environmental Protection Authority Western Australia
www.epa.wa.gov.au
New South Wales
NSW Environment Protection Authority (EPA)
www.epa.nsw.gov.au
Tasmania
Environment Protection Authority Tasmania
epa.tas.gov.au/epa
South Australia
Environment Protection Authority South Australia
www.epa.sa.gov.au
Northern Territory
Northern Territory Environment Protection Authority
www.ntepa.nt.gov.au
Victoria
Environment Protection Authority Victoria
www.epa.vic.gov.au
Australian Capital Territory
Environment Protection Authority ACT
www.environment.act.gov.au
LungNet is an initiative of Lung Foundation Australia | Freecall 1800 654 301
LungNet News | May 2015 | www.lungfoundation.com.au
1
From the CEO’s Desk
Dear Readers,
Twenty-five years ago
on 5 March 1990, Lung
Foundation Australia
was born.
Under the Chairmanship
of inaugural Chair, Professor
Geoffrey McLennan, and with
the participation of many
others, we were established
as a patient-based organisation
aimed at supporting those with
lung disease and raising funds to support research.
The first edition of LungNet
News was published in
November 1994 and aimed
to “unite the patients of
Australia”. The editorial list
included the following:
•ALF Tackles
Teenage Smoking
•We will launch Young Lungs, our first program to support
families whose children are living with lung disease
•We will become the only national provider of telephone
support for patients with lung cancer
While there is still so much to do, perhaps it is timely to
reflect on 25 years of growth and 25 years of making a
difference to those with lung disease.
I would like to share one example of feedback, the kind
which we receive every day from patients who call our
Information and Support Centre (manned by the fabulous
Juliet Brown, Jenny Hose, Ainsley Ringma, Melissa Ram,
and our long-time Volunteer - Eileen Perry). A man called
us recently, who had been prompted to call after hearing
the sound of an ambulance. The sound brought him back
to a time of great difficulty in the course of his lung
disease. At the time, he had called our 1800 654 301 line
and spoken to Jenny who, as always, provided practical
advice linking him to important information and services in
the community. He claims that Jenny literally saved his life.
On a less dramatic but important note, we are moving
with the times and going electronic. Many of you already
receive your LungNet News by email. We also have just
launched a new monthly electronic communication aimed
at providing a more regular update of activities and
information of interest to patients. This will be in addition
to the quarterly publication of LungNet News. If you would
like to support us to reduce our carbon footprint and
save on mailing costs, phone 1800 654 301 or email
enquiries@lungfoundation.com.au and request to receive
additional communications or visit www.lungfoundation.
com.au/get-involved/communication and fill out the form.
•Sleep Disorders
Medicine: A Rapidly
Growing Field
•Patient Support
Groups in South
Australia
•Smoke Busters
Comes to Australia
•APSR (Australia
Pacific Society of
Respirology) Workshop
Report, Malaysia
Twenty-five years on, and with the support of countless
clinical and community volunteers, we have achieved a
significant amount on our journey to “unite the patients
of Australia”.
Last year:
•6,500 calls were answered by our Information and
Support Centre
•2,740 patients participated in one of Lung Foundation
Australia’s support programs, including 500 patients in
our Lungs in Action programs
•7,600 patient resources were downloaded from
our website
In closing, I would like to point you to page 8 where you
will see a story about our end of financial year tax appeal.
Shortly you will be receiving the appeal as a separate mail
piece in late May. This year, I ask you to give generously.
As you have heard many times, we rely on support from the
community. I also urge you to see the experience of the
Pearce family from Maitland who took some extraordinary
steps to support their mother going through chemotherapy
for lung cancer.
Thank you.
Heat
her Allan
•2,000 patients attended a seminar delivered by the
Lung Foundation
•82,000 people completed our online Lung Health Checklist
•$400,000 was awarded to researchers around Australia
who are dedicated to improving treatments and outcomes
for those with lung disease
This coming year:
•Thousands will learn more about the Lung Foundation
through social media, particularly our Just One Breath
campaign – it’s a different world than in 1997!
•We will launch our first online patient education training
program for those with COPD called C.O.P.E. (see page
7 in this edition)
•600 patients with chronic lung disease will participate in
our community exercise maintenance program, Lungs
in Action
2
Lung Foundation Australia’s staff celebrate 25 years with
green cupcakes.
LungNet is an initiative of Lung Foundation Australia | Freecall 1800 654 301
LungNet News | May 2015 | www.lungfoundation.com.au
Diary Dates 2015
• World Pulmonary Hypertension Day
5 May
• Lung Health Patient Education Day, Perth
14 May
• Regional Patient Seminar, Alice Springs
29 May
• Lung Health Patient Education Day, Brisbane
• Lung Health Patient Education Day, Sydney
• Lung Health Patient Education Day, Adelaide
2 September
17 September
14 October
• Australian Rare Lung Disease Short Course 16 - 17 October
• Just One Breath Annual Gala Dinner, Sydney
17 October
• Lung Health Patient Education Day, Melbourne
23 October
•L
ung Health Patient Education Day,
Campbell Town
24 October
• Lung Health Awareness Month
November
• Lung Cancer Awareness Month
November
• International Lung Cancer Awareness Day
17 November
• World COPD Day
18 November
• Asbestos Awareness Week
23 - 27 November
As well as the above Patient Education Days, there are health professional workshops on asbestos-related lung
disease in Toowoomba, Melbourne, Brisbane, Albury Wodonga, LaTrobe Valley, Alice Springs, Sydney and Whyalla.
For more information visit www.lungfoundation.com.au/get-involved/events.
2015 Tax Appeal Helps Lung
Foundation Australia Support You
Lung Foundation Australia will launch the 2015 Tax
Appeal in May.
Lung Foundation Australia CEO, Heather Allan, appealed
for people to support the Lung Foundation’s Information
and Support Centre by making a tax deductible donation.
“We’ve seen a significant growth in the number of people
contacting the Lung Foundation seeking support, education
and links to community programs,” Mrs Allan said.
“In fact, over the last two years there has been an 8%
increase in enquiries coming into the centre,” she said.
“We are asking for help to ensure we can continue to
respond to those in need.”
Staff News
Since the last edition of
LungNet News, we have
welcomed Amelia Parsons
to the new role of Events
Assistant. Amelia will
predominantly be assisting
with the Australian Lung
Cancer Conference,
Australian Rare Lung
Disease Short Course
as well as other events.
Right: Amelia Parsons.
Victorian bronchiectasis patient, Mrs Veronica McDornan,
knows personally just how important this service is for
people in the community.
Mrs McDornan said Lung Foundation Australia’s Information
and Support Centre was an essential first point-of-call for
her when she was diagnosed with a chronic lung disease.
“What can I say about the Lung Foundation; it’s for
everybody,” Mrs McDornan said.
“I run a patient support group for all people who have a
lung condition and I know the importance of sharing your
experiences with other people,” she said.
Breathe
Independently
...with the latest in Portable Oxygen Therapy
“So, if you need any more information, please pick up the
phone and call the Lung Foundation and have a chat with
the lovely ladies.
“They are always ready to help you.”
Mrs Allan said, even with the huge advances in health
management in the past quarter of a century, lung disease
continued to be a major issue for Australians.
“Lung disease accounts for 10% of the overall health
burden in Australia,” she said.
“For 25 years we’ve been here to support any Australian
family touched by lung disease.
Please support our 2015 Tax Appeal
when you receive the direct mail piece
in May so that we can continue our
vital work.”
Visit www.lungfoundation.com.au/
donations to give a gift. All donations
greater than $2 are tax deductible
and help reduce your tax bill.
Mrs Veronica McDornan, President of the
Puffing Billies Victoria Support Group.
me, Anywhere
Oxygen Anyti
from
Visit:
oxygensolutions.com.au
1300 308 433
LungNet is an initiative of Lung Foundation Australia | Freecall 1800 654 301
LungNet News | May 2015 | www.lungfoundation.com.au
per week
3
My Lung Donor was a Transplant Nurse
Ross Lloyd, Double Lung Transplant Recipient
Each year, an international nursing organisation based in the
USA hosts an essay competition where transplant patients
can nominate their transplant nurse for an award. This is in
recognition of the many nurses who help us before, during
and after our transplant. This year, I submitted a nomination
which was quite different to any they had received before as
my story does not reflect the usual transplant nurse, instead
it reflects my donor. I believe the majority of donor recipients
would support the feelings expressed in my story below.
It all began in 2010 when I was diagnosed with Chronic
Obstructive Pulmonary Disease (COPD) and pulmonary
fibrosis. By early 2011, I was on oxygen 24/7 and on a
CPAP machine at night. Mobility was limited to an electric
scooter or wheel chair.
In late March 2013, I was
listed for a double lung
transplant at Prince Charles
Hospital in Brisbane. Eight
days after being listed I
had my first call in, but the
transplant did not proceed.
Three and a half weeks later
I received my second call in,
but again the transplant did
not proceed. Just six days
later it was a case of third
time lucky, my successful
double lung transplant
occurred. The likelihood of
receiving that second chance
at life was less than 1%.
Why I Celebrate My
Transplant Nurse
My transplant nurse whom we celebrate was with me
during the operation but she was not one of the assigned
operating theatre nurses on that day in May 2013.
My transplant nurse whom we celebrate was with me
every day during my recovery at Prince Charles Hospital
until my release from hospital on 17 May 2013, and yet
she was not rostered on for any of those days.
My transplant nurse whom we celebrate has been with
me every day since I returned home, and has watched
my progress even though she was not assigned as my
home care nurse.
My transplant nurse whom we celebrate pushed me with
my physio activities so that I could participate in two
Bridge to Brisbane runs in 2013 and 2014 since my
transplant, and yet she is not a physiotherapist.
My transplant nurse whom we celebrate is not my
partner, nor is she one of our two adopted daughters.
My transplant nurse whom we celebrate has not only
ensured that I have a second chance at life but has
given that second chance at life to my partner and our
two daughters.
Ross Lloyd post double
lung transplant.
My transplant nurse whom we celebrate is my donor.
Facts and Figures of Transplant
Shelley-Lee Waller, Principal Communication Advisor, DonateLife Queensland
Last year, 1,177 Australians received a life-transforming
organ transplant through the generosity of 378 organ
donors whose families agreed to donation at the time of
their loved one’s death. Living and deceased tissue donors
also changed lives, restoring sight, heart function, mobility
and quality of life to many thousands who receive precious
gifts of eye tissue (e.g. corneas), heart valves, bone and
skin grafts.
Organ donor numbers nationally have been increasing
by approximately 50% in the past six years. However,
numbers were slightly down in some states last year,
reinforcing the need to keep organ donation in the
forefront of the public’s mind.
It is important not only to decide about organ donation,
but to register your decision on the Australian Organ
Donor Register and let your family know your wishes.
In January, some 1,500 Australians were listed for
transplant surgery including 50 children.
A complex range of factors influence organ donor rates.
Only a very small proportion (less than 1%) of people die
in a way that means organ donation is medically possible,
i.e. in an intensive care unit and while on a ventilator.
Research by the Organ and Tissue Authority revealed a
number of common myths and misconceptions may be
holding some Australians back. According to this research,
the chance to save lives makes 90% of Australians want to
become an organ and tissue donor. At the same time, 40% of
Australians have not made a decision about organ and tissue
donation and 31% have not discussed it with loved ones.
4
In order to bust the myths that are preventing
Australians from making informed decisions, a
new campaign was launched this month at
www.donatelife.gov.au/myths-and-misconceptions.
Consider sharing this with friends and family as well as
visiting the DonateLife website www.donatelife.gov.au.
A Few Fast Facts:
•Most people think that anyone who dies can
become an organ donor. However, less than 1%
of people die in a way that organ donation can
be considered.
•Rigorous criteria must be met for organ donation to
be considered. The patient must have died, or the
inevitability of death must be agreed upon by at
least two senior doctors.
•Almost all religions support organ and tissue
donation.
•Age is not a barrier - people over the age of 80
have become organ and tissue donors.
•You don’t have to be in perfect health. People who
smoke, drink or don’t have a healthy diet can still
donate.
•Organ donation is specialised surgery and does not
disfigure the body.
LungNet is an initiative of Lung Foundation Australia | Freecall 1800 654 301
LungNet News | May 2015 | www.lungfoundation.com.au
Recognising Our Lifetime Heroes and Research Award Winners
Lung Foundation Australia continued its 25th
anniversary celebrations at the Annual Scientific
Meeting of The Australia and New Zealand Society
of Respiratory Science (ANZSRS) and The Thoracic
Society of Australia and New Zealand (TSANZ) in
March. This exciting conference brings together
health professionals and researchers from the
medical community to examine the leading issues
in lung health and patient care.
One of the conference highlights was the Lung Foundation
Australia Dinner where we recognised those people who
have made a major contribution to the Lung Foundation
and the community by presenting them with a lifetime
achievement award.
This year we recognised the work of four great supporters:
Myrna Wakeling has attended
almost every Brisbane Patient
Education Day since becoming a
volunteer 17 years ago. She helped
establish the Ashgrove TLC (Talk
Lung Care) LungNet Support Group
and has been a valuable member
of the LungNet News mail-out
volunteer team for 17 years.
Lyn Joseph a registered nurse
from the Royal Hobart Hospital
joined Lung Foundation Australia
as the Tasmanian LungNet State
Coordinator in 2004. Lyn organised
the first Tasmanian Patient
Education Seminar that same year.
Together with Lung Foundation
Australia National Council member
Jim Markos, Lyn has been a strong
advocate for both patients and
health professionals.
Professor Michael Abramson
was appointed as the Chair of the
COPD-X Guidelines Committee in
2005 and, for more than a decade,
has guided the growth and
development of the guidelines and
brand. There are more than 9,000
registered users of the guidelines
worldwide, including pharmacists,
GPs, nurses, physios, respiratory
physicians and researchers. With
one to three updates each year,
it is safe to say that the COPD-X
Guidelines are amongst the most
up-to-date COPD guidelines in
the world.
A familiar face for all of us,
our recently retired CEO, William
Darbishire, was appointed in
2002, guided the Lung Foundation
through significant growth and
development. When he commenced
the Lung Foundation was just a
small team of three staff, we are
now a staff of more than 20 and are
the first point-of-call for patients,
their families, carers, health
professionals and the community.
We also presented our 2015 Research Awards
at the conference:
LFA/Ivan Cash Research Grant-in-Aid Award
Dr Helen Jo
Early identification of disease progression in IPF
LFA/LCCG Grant-in-Aid for Lung Cancer Research
Anna Tierney - University of Melbourne
Prehabilitation for individuals having lung cancer surgery
LFA/Lizotte Family Research Award
Associate Professor Anne Holland - La Trobe University,
Melbourne. Comprehensive pulmonary rehabilitation for
people with IPF: an evidence-based consensus process
LFA/Ludwig Engel Grant-in-Aid for
Physiological Research
Associate Professor David Johns - University of Tasmania
The concave pattern of the flow-volume curve
LFA/Australian Cochrane Airways Group Scholarship
Samantha Gardiner - Queensland Children’s Medical
Research Institute. Cough asthma airway’s research group
codeine (and derivatives) for chronic cough in children
LFA COPD Research Fellowship 2015/2016
Dr Shaan Gellatly - University of Newcastle
Manipulation of the microbiome as a novel therapy for COPD
LFA/Boehringer Ingelheim COPD Research
Fellowship 2015/2016
Dr Katherine Baines - University of Newcastle
Targeting neutrophil extracellular traps as a novel therapeutic
option in COPD
LFA/A Menarini Australia COPD Research Top-Up Grant
Miss Kanika Jetmalani - Woolcock Institute of Medical Research
Detecting smokers at risk of developing COPD
LFA/A Menarini Australia COPD Travel Grants
- Primary Care and/or Rural/Remote - Richard Parsons
- Young Investigator - Melisa Lau
- Nursing or Allied Health - Rebecca Disler
Left to right – Wes Cook, Managing Director, Boehringer Ingelheim; Dr
Katherine Baines; A/Prof David Serisier, Lung Foundation Australia Chair.
Left to right – Elna Fourie, Medical Advisor, A Menarini; Miss Kanika
Jetmalini; Rebecca Disler; Richard Parsons; Melisa Lau and A/Prof
David Serisier, Lung Foundation Australia Chair.
LungNet is an initiative of Lung Foundation Australia | Freecall 1800 654 301
LungNet News | May 2015 | www.lungfoundation.com.au
5
Australian Idiopathic Pulmonary Fibrosis (IPF) Registry
Sacha Macansh, Project Manager, Australian IPF Registry, Lung Foundation Australia
If you have IPF you too can help, please ask your
respiratory physician about the Registry during your
next visit.
Researchers are finding the Australian IPF Registry a
valuable source of information about Idiopathic Pulmonary
Fibrosis (IPF). Thanks to the contributions of more than
600 patients with IPF now participating in the Registry,
and their respiratory physicians, researchers have the
opportunity to learn more about this challenging disease.
Research on the Registry has recently been presented and
discussed at important national and international forums,
including the Thoracic Society of Australia and New
Zealand (TSANZ) and the American Thoracic Society
Annual Scientific Meetings. Thanks to those generously
participating in the Registry, researchers have the chance
to understand more about IPF.
In the coming months, the Lung Foundation will be exploring
ways to enhance our support of those with IPF, including
developing new patient material and introducing a new
pilot peer support program for those living with IPF. We will
be contacting Registry participants and offering them the
opportunity to participate in the pilot of this program. We
look forward to expanding the program more widely as
soon as possible and will keep our LungNet News readers
informed of our progress.
Healthcare providers, please contact the Registry
Coordinator in your state to inform them of your IPF
patients who are interested in joining the Registry. To find
the Coordinator in your state, please call Sacha Macansh
on 02 9515 3996, email ipf@lungfoundation.com.au or visit
the Lung Foundation website www.lungfoundation.com.au/
health-professionals/idiopathic-pulmonary-fibrosis-registry.
Clinical Trials for IPF Medications in Australia
Apart from creating a unique research platform, the
Australian IPF Registry also aims to improve recruitment to
clinical drug trials. A number of clinical trials are currently
being or have recently been undertaken in Australia. See the
previous edition of LungNet news or call our Information and
Support Centre on 1800 654 301 for details. In addition,
Bristol-Myers Squibb has Phase II clinical trial in recruitment
(NCT01766817 (IM136003)).
For further information on these trials,
please speak to your respiratory physician.
Dietary Supplement Use in People With Chronic Lung Conditions
Researchers at the University of South Australia are
still looking for people to participate in their survey
about supplement use. The short survey is
open to ANYONE WHO HAS A CHRONIC LUNG
CONDITION, regardless of whether they DO or
DO NOT USE supplements. Greater detail can be
found in the November issue of LungNet News.
The survey is voluntary and COMPLETELY ANONYMOUS, and
can be accessed via www.surveymonkey.com/s/F8H8RFJ.
For a paper version of the survey or additional
information, call 08 8302 1365 and leave your details.
A survey will be posted to you.
This study has ethics approval
from the University of South
Australia (Protocol no. 33615).
Caring for the Carer
Hayley Carter, Communication Manager, Carers Australia Queensland
When a loved one becomes ill, the person caring for them is
often overlooked. But caring for a family member or friend
who has a chronic or terminal illness comes with its own
stresses. Carers are more likely to suffer with anxiety or
depression than non-carers; they often become socially
isolated, and the financial impact of caring, particularly
where a carer has to reduce working hours or leave work
altogether, cannot be overlooked.
Believe it or not, there are more than 2.7 million carers
in Australia alone. That’s a staggering 1 in 8 Australians
providing unpaid care to a loved one who has either a
disability, mental illness, chronic condition, terminal illness
or who is frail or elderly. Carers can, and do, come from all
walks of life – young, old, parent, spouse – anyone can
become a carer at any time.
The good news is that there is support available for carers.
There are carers associations in each state representing
carer interests. Your local association will provide a number
of support services for carers, including:
Carers
Advisory
Service
A telephone helpline open Monday to Friday,
9am – 5pm. The Carer Advisory Service is
a service providing information, support,
planning and referral advice to help carers
in their caring role. It is often the first point
of contact a carer will have with their local
carer association. Call 1800 242 636.
National
Carer
Counselling
Program
Provides counselling and related emotional
support services for carers. Counselling
is provided by qualified, professional
counsellors. Assistance may be provided on
a one-off basis or over several counselling
sessions. The types of counselling available
include telephone, face-to-face and group
counselling.
Carer
Support
Groups
These offer carers social and emotional
support, an opportunity to share information
and ideas and time out for carers.
If you are a carer and need support don’t hesitate to contact your local carers association today.
Phone 1800 242 636 or visit their website www.carersaustralia.com.au/about-us/contact.
6
LungNet is an initiative of Lung Foundation Australia | Freecall 1800 654 301
LungNet News | May 2015 | www.lungfoundation.com.au
Australian COPD Patient
Advocate Group Report (CPAG)
New Patient Program: C.O.P.E
–COPD.Online.Patient.Education
Ross Lloyd, Chair
C.O.P.E - COPD. Online. Patient. Education is a new and
free web-based resource for patients (and their carers)
that will enable you to complete the educational
component of pulmonary rehabilitation from the comfort
of your own home. C.O.P.E is an easy to use, interactive
and informative program and can be used to
complement a pulmonary rehabilitation program, home
exercise program or simply as a reference point for
information on living with a lung disease. It enables you
to download and print resources, watch videos and be
linked to further information on topics that may be of
specific interest to you.
CPAG met on 16 February with full
representation from all states and
territories. The Group is growing
and guest presenters are providing
additional insight to patient advocacy
issues. Three of the major issues
discussed were:
Advanced Care Planning
Metro South Brisbane Hospital Service Clinical Nurse
Lesley McLeod spoke about an Advanced Care Planning
Kit developed as a part of an Advanced Care Planning
Project. Using a model previously utilised by the Victorian
Respecting Patient Choices program and it was amended
to suit Queensland requirements.
Pulmonary rehabilitation programs generally consist of
six to eight weeks of exercise and education. These
sessions are evidence-based and designed especially
for people with chronic lung conditions to better
manage symptoms and stay well and out of hospital.
As these programs are usually delivered at a hospital
or community health centre, access to pulmonary
rehabilitation is limited with fewer than 10% of
patients undertaking this life-changing program.
CPAG members suggested Lesley engage personally with
local community groups, local LungNet Support Groups and
pulmonary rehabilitation programs to promote the use of
this new Advanced Care Planning Kit.
Superannuation
The superannuation conversation concerning rejection of
disability claims also raised an issue that had been discussed
previously within CPAG – classifications of disability. The
CPAG members had previously identified stumbling blocks
when looking at disability classifications:
• Varies from state-to-state
•Decision-tree process for determining disability is not
made available
• Sensitivity for some patients to be classified as disabled
•Issue for patients with COPD who have periods of being
reasonably well and then can have periods of debilitation
We welcome your feedback to help us identify
whether you found the resource useful or any ideas
for improvement. Please provide this
important feedback by completing the survey at
the end of each of the five modules or via email,
to enquiries@lungfoundation.com.au. To access
C.O.P.E visit www.cope.lungfoundation.com.au.
C.O.P.E was developed in partnership with the BUPA
Health Foundation and in consultation with expert
clinicians, patients, carers and consumers. The
content within this interactive web-based platform
was based on “Better Living with COPD – A Patient’s
Guide”, the “Better Living with Your Lung Disease” selfmanagement series and other educational resources.
Drivers Licence Medical Assessments
As each state is different, the recommendation is for
individuals to contact their respective state authorities.
If it were to be listed on the Lung Foundation Australia
website content may change regularly, and the webpage
may become out of date quickly.
These topics will be followed up at subsequent meetings
which occur bi-monthly.
Farewell to Lung Foundation Friends
Lung Foundation Australia staff, CPAG
and volunteers are deeply saddened by
the passing of Tasmanian CPAG Member,
Ian Mills on 31 March. Ian was an active
member of the group and a passionate
advocate for lung disease. He will be
sorely missed and we extend our
condolences to Ian’s family.
Better Living with Your Lung Disease DVD Series
Melissa Ram, Project Manager - Chronic Lung Disease Support, Lung Foundation Australia
Better Living with Your Lung Disease is a suite of 10
short DVDs for people with lung disease. They aim
to increase knowledge and confidence and will
enable people to better manage their condition,
its symptoms and their overall wellbeing.
A ten part DVD series
Better Living with Your Lung Disease
1.Managing Your Lung Disease is an
introduction to the whole series. It briefly
covers self-management, how it can help people
who are living with a lung disease, and provides some
practical tips for patients on how to actively participate
in their healthcare.
Advocacy
Awareness
Education
Support
Research
Lung Foundation Australia – Chronic Lung Disease
Self-Management Project is supported by funding from the
Australian Government under the Chronic Disease
Prevention and Service Improvement Fund.
2.How Do Your Lungs Work is an animated journey through
the respiratory system and the lungs. The display highlights
what the lungs do and how they breathe, demonstrating the
role of the nasal cavity, the windpipe and upper respiratory
system. It also shows how the respiratory system protects
itself against irritants and foreign particles.
Keep your eyes peeled for a snapshot of the remaining
DVDs in the following editions of LungNet news. For more
information or to order your copy of the DVDs phone freecall
1800 654 301, email enquiries@lungfoundation.com.au or visit
www.lungfoundation.com.au/self-management to view online.
LungNet is an initiative of Lung Foundation Australia | Freecall 1800 654 301
LungNet News | May 2015 | www.lungfoundation.com.au
7
Patient Stream to be Included in
the 2nd Biennial Australian Rare
Lung Disease Short Course
Nigel McPaul, Group Project Manager, Lung
Foundation Australia
Lung Cancer Network
Australia Update
Kerrie Callaghan, Project Manager,
Lung Cancer, Lung Foundation Australia
DVD - New Edition!
Lung Cancer Understanding
- Managing - Living
The second edition of our lung
cancer patient DVD, is now
available and includes updated
information about advances in
diagnosis, new treatments and
clinical trials.
Lung Foundation Australia is proud to announce that
registrations are now open for the Australian Rare
Lung Disease Short Course 2015. An important part
of the course will be a dedicated patient stream.
To order this free resource visit our website www.lungcancer
network.com.au/patient-resources-support/lung-cancer-dvd
/dvd-order-form or phone freecall 1800 654 301.
The one and a half day short course, a joint venture
between Lung Foundation Australia and the Thoracic
Society of Australia and New Zealand (TSANZ) will provide
updates on the latest in real world diagnosis and therapy
for Interstitial Lung Disease (ILD) and the latest in
scientific research into ILD. The program boasts an
exceptional selection of Australian ILD specialists and
keynote presentations from an international speaker.
Sincere thanks go out to Pearce siblings from Maitland
Abbie, Elliott and younger brother, Oliver Pearce, who
recently shaved their heads in support of Lung Foundation
Australia. The Pearce family
and their friends raised more
than $5,000 - double their
initial goals!
As part of the program the Australian Rare Lung Disease
Short Course will be accepting Poster Abstracts.
Download the registration brochure and application
form for the 2nd Biennial Australian Rare Lung Disease
Short Course 2015 at www.lungfoundation.com.au/
health-professionals/conferences.
For further information please contact the event manager,
Nigel McPaul, by email at nigel@lungfoundation.com.au.
Pearce Family Shines a Light on Lung Cancer
If you would like to hold a
shine a light fundraising event
or for event collateral including
t-shirts, visit our website
www.lungcancernetwork.com.
au/get-involved/fundraising/
everyday-hero or contact
Kerrie on 07 3251 3641 or at
kerrie@lungfoundation.com.au.
About the LungNet News
Lung Foundation Australia
Partner Acknowledgements
Publication dates:
February, May, August and November
Foundation Partners
Publisher and Editor:
Lung Foundation Australia
PO Box 1949, Milton QLD 4064
Free call: 1800 654 301
Phone: 07 3251 3600 Fax: 07 3368 3564
Email: enquiries@lungfoundation.com.au
Website: www.lungfoundation.com.au
Principal Partners
Please Note: Lung Foundation Australia and/ or its partners/ agents may
contact you occasionally regarding educational opportunities, research,
events, fundraising, promotions and special offers. If you do not wish
to receive this additional contact, please call 1800 654 301, or email
newsletter@lungfoundation.com.au stating that you only wish to receive
our quarterly LungNet News (this will include any associated material
mailed with the newsletter).
Disclaimer: The information contained in this newsletter is submitted
from many different sources. The views expressed herein are not
necessarily those of the editor or Lung Foundation Australia. Medical
information contained in this publication is intended to be used as a
guide only, and not as an authoritative statement. Please consult your
doctor if you have questions relating to medical information contained in
this newsletter. The inclusion of advertising in this newsletter does not
constitute specific endorsement of these products or services by Lung
Foundation Australia. All rights reserved. No part of this publication may
be reproduced, stored in a retrieval system or transmitted in any form
by means of electronic, mechanical, photocopying or otherwise without
written permission from the publisher.
8
Novartis
Pharmaceuticals
Supporting/Project Partners
Corporate Partners
LungNet is an initiative of Lung Foundation Australia | Freecall 1800 654 301
LungNet News | May 2015 | www.lungfoundation.com.au