Dragon Claw Newsletter 3rd quarter 2023
It has been an informative, supportive and healing time for our participating members. Our autoimmune conditions improve sometimes quickly and sometimes slowly with a few steps backwards. Whether residing in Australia’s recent mild winter or North America’s very hot summer, and with dreadful Canadian bushfires, we have managed to stay in touch and support each other through our weekly Dragon Talks Meetings. What an amazing opportunity to make friends across the world, identifying in discussions around managing our autoimmune recoveries!
A special hello to our co-editor and Dragon Talks Co-Facilitator Paul Kett who has had to take time out to recharge his health. We believe Paul has received numerous dragon well-wish messages of support and he is no doubt grateful to stay in touch with his dragon community.
In this edition we report on our delegates’ work in Canberra and Adelaide and of course alert you to the great calendar of presentations for our Dragon Talks in this year’s final quarter, both Tues pm/Wed am for both continents and Monday 7pm Australia (of course North American nocturnal members are welcome to join us then). Dr. Charmaine Jones set the alarm and did a surprise attendance from her Canadian island bed for Dragon Jill’s excellent presentation on Type 1 Diabetes.
Yours in Self-Care Taming the Dragon, Susan Hughes,
Photo: L-R: Susan Hughes (Dragon Claw); Jo Watson (Deputy Chair, PBAC); and Michelle Clewett (Dragon Claw).
Dragons Susan and Michelle attended the PharmAus23 conference held at Parliament House in Canberra on 6 September. The conference provided an opportunity for industry leaders, patient groups, clinicians and parliamentarians to discuss policy reform to strengthen Australia’s Pharmaceutical Benefits Scheme and improve patient access to new medicines and treatments. Susan and Michelle had the opportunity to speak with pharmaceutical companies, peak health bodies, patient groups and government officials, including a chat with Jo Watson, Deputy Chair of the Pharmaceutical Benefits Advisory Committee (PBAC). Dragon Michelle’s report:
The conference was facilitated by Virginia Haussegger AM and featured three panel discussions:
- Redefining Future Healthcare: panel members shared their experiences with Australia’s healthcare system, from both a patient and clinician perspective. The Chair of Australia’s Pharmaceutical Benefits Advisory Committee spoke about the particular challenge of balancing cost effectiveness and clinical efficacy when assessing whether or not to subsidise new medicines.
- Fostering Equitable Partnerships: Deidre Mackechnie, CEO of the Australian Patient Advocacy Alliance gave a particularly powerful speech about the importance of including patients as equal partners when designing and improving the health technology assessment system.
- Partnering with Government: five federal MPs (four of whom were doctors) spoke about what they needed from industry and patients to inform policy considerations to protect and improve the health of Australians.
The Minister for Health and Aged Care, the Hon. Mark Butler MP and Shadow Minister for Health and Aged Care, Senator Anne Ruston both gave speeches about enhancing Australia’s healthcare system, such as through the current review of health technology assessment policy and methods.
Most importantly, patient stories were featured throughout the day (including from Dragon Claw members) highlighting how access to medicines is helping to manage autoimmune diseases, as well as some of the challenges in accessing effective treatment. Thank you to Dragon Susan, Jackie, Jill and Michelle for putting themselves out there! Michelle’s video has been published online and is available at the following link: https://vimeo.com/858495008/38e8a87a32
Two dragons’ journey to Australia-September 2023
By Linda Gaudet
Dragons Marlene Ferguson, Linda Gaudet, Charmaine Jones
Alisdair Cook with Charmaine
Charmaine with “Maple” Susan Cook
Charmaine, Cheryl Zubrack, Linda.
This story could begin with plane tickets purchased to the destination… but that would be too simple. and life is so much richer in the detail!
The seed of this scheme was planted in the middle of a Canadian winter, as we waited for a flight home that was eventually cancelled due to weather. But that’s another story….
The scheme goes like this: what if we drive our current trailer to BC from Ontario in the fall, sell it, order a new trailer, fly to Australia, camp for a while, present a medical paper at parliament and a conference, have a retreat with fellow dragons, Christmas in Australia with our family, fly back to Canada in the middle of winter and camp in BC in a new warmer trailer till we can drive back across Canada! What could go wrong? And oh yes, we’ll have to pack for 4 seasons and close-up our island home in the 5 days after our last guests leave!
Well, to date, the plan seems supported by the universe.
The drive across Canada was blessed by great weather and picturesque camp grounds.
But the highlights were meeting with fellows Dragons along the way! We even camped in their driveways!
First up in Winnipeg (Manitoba), was our visit with Cheryl, husband Bill and daughter Michelle with partner Allisha. We enjoyed dinner on the deck on a very warm evening. Cheryl shared her artwork and we learned of her upcoming exhibitions! It was great to see where her creative magic happens, and where she is when she’s on our zoom calls.
Next Dragon stop in Canmore (Alberta), we enjoyed a warm welcome on a chilly evening with Susan and Alasdair. Some technical exchange for Dragon Talk support (Alasdair kindly stepped in to cohost while Paul is recharging his health) preceded an evening of a meal and story sharing. A plan hatched for an east coast hike together in 2024.
A day of drenching rain was a relief for BC locals dealing with the devastating wildfires this year… and, also ensured that we would be able to drive through these areas. That day’s drive put us close enough to stop by for a morning coffee the next day with Marlene and husband Bob in Kelowna (BC). In a visit that went by too quickly, we were lucky to experience a snippet of Marlene’s talent with the flute!
After coffee, we completed the epic drive to Chilliwack, BC.
8 days and 4,800km. Phew!
Stage 1 successful.
Now to catch up with our daughter, son in law and three grands, getting Charmaine to Vancouver for an urgent steroid injection to her knee which flared (when she went to generic), emptying and cleaning our trailer, meeting with the purchaser of our trailer (from the USA), seeing our new trailer (which we will pick up in January), sorting a ride to the airport…. all before getting on that plane!
But that’s yet another story!
TAKING CONTROL OF YOUR PAIN
Many thanks to Arthritis Australia for sharing their latest resource on pain management.
Dragon Members Rachel M, Dr. Robin and Guest will be facilitating a presentation and discussion on Chronic Pain at our Dragon Talks zoom meeting 31st Oct/1st Nov. (to register contact
To read Taking Control of your Pain resource, Read here:
Dragon Talks 2 Aussies 7pm Mondays
Summary of recent topics
Summary of recent topics Dragons were treated to an immersive sound journey and learned about sound healing as a meditative practice. We were privileged to hear patient stories from people living with Hashimoto’s disease, and Type 1 diabetes, and their strategies for managing these autoimmune conditions. We talked about how to break bad habits and build better habits, harness our creativity, and declutter different aspects of our lives as ways of supporting our health and wellbeing. And we learned about how the special knowledge and experience of people with chronic illness can be of benefit in training medical students, such as through the Patient Partners program previously delivered by the University of Sydney, where patients with rheumatoid arthritis allowed their hands to be examined by students to demonstrate the musculoskeletal peculiarities of the condition and also shared their experience of disease symptoms, treatments and medications, and their impacts.
Dragon Talks Enquiries please contact
National Help Lines with Muscular Skeletal Org, Arthritis Australia and Chrohn’s and Colitis Aust.
Our friends at Musculoskeletal Australia (MSK) provide a contact free national Help Line! Do you have questions about dealing with pain, your musculoskeletal condition/s, treatment options, COVID-19, or accessing services? Then be sure to call their nurses on their free Help Line. They’re available weekdays between 9am-5pm on 1800 263 265
Call the toll-free national Arthritis Infoline on 1800 011 041 for information about arthritis and other musculoskeletal conditions including self-management, community programs, seminars, support groups, and other resources. The Arthritis Infoline is staffed by health professionals and specially trained volunteers in your state or territory who can answer most questions about living with arthritis.
For our 100,000 friends with Crohns and Colitis Disease – crohnsandcolitis.org.au, National helpline 1800 138 029
Canadian links: https://arthritis.ca/support-education/support-resources/arthritis-lin
Canadian Arthritis Patient Alliance CAPA https://arthritispatient.ca
Gutsy Support - Gutsy Peer Support - Crohn’s and Colitis Canada crohnsandcolitis.ca