In May, Dragon Jan and myself were very privileged to be invited to Adelaide to attend the ARA Scientific Meeting. Amongst hundreds of rheumatologists, researchers and allied health professionals we got to hear some of the latest information in the fields of rheumatology and pain. Of significant importance to our community was the research on how the brain processes pain and the cellular systems that are at play, the newest "treat to target" guidelines for lupus and new breakthroughs in Scleroderma and Sjogren's treatment. We were so impressed with how many professionals spoke of the need to understand the biopsychosocial aspects of a person living with a chronic condition. Looking at the entire person and not merely their symptoms was very well received and we hope that many clinicians and allied health will incorporate those important elements into their care.
We were thrilled to have Maya Joshi of CaPPRe join us to present the poster of Dragon Claw's first
research project on "Closing the Medication gap in chronic inflammatory conditions". It was very well
received and many clinicians were as shocked as we were about the results. If you would like to hear
more about the meeting, Jan and I will be presenting an overview of the event on Dragons Talks
Australia, 30th June at 7pm (AEST). If you are not already on our invite list, please email us to get
the link.
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World Lupus Day Event
Another fantastic World Lupus Day event was held on 10 May by the wonderful folk at Monash Health in Melbourne as a means of raising awareness, sharing knowledge, and empowering those affected by lupus. This was the second year running that the event was held, which was well attended and provided a diverse range of speakers. Renowned lupus experts Professor Eric Morand and Associate Professor Alberta Hoi spoke about the lupus landscape, including how lupus manifests and the evolution of treatment options. Dragon Michelle Clewett shared her experience in navigating life with lupus, including challenges with diagnosis and the impact on her family. Lani Watson, the first Australian lupus patient to receive CAR (Chimeric Antigen Receptor) T-Cell therapy as part of a clinical trial at Monash Health, wowed the audience by describing how after being completely bedridden by lupus is now in remission and back playing semi-professional football as a result of the treatment. Researchers from the Monash Lupus Clinic spoke about different pieces of work they are doing to create a new medicine to replace steroids (which would also have application for other autoimmune diseases), and developing a cell-based therapy for lupus nephritis patients which will be the subject of a clinical trial starting in 2026. The importance of self-efficacy and patient advocacy was also a welcome theme of several presentations. Overall, the speakers provided a strong sense of hope and positivity about the work that is happening to better understand and treat lupus, and what the future may bring.
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Photo by Andrzej New Psoriatic Arthritis
medicine
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Your Partner's Support CornerBy Dragon Alasdair Cook
Well, recent events have dictated that there is now no choice but to change your plans and to "age in place"! I think it is fair to say that most of us would like to stay in our current homes for as long as we can manage and be safe, and have not yet reached the stage where we start to need 24/7 care. Let us explore some of the parameters and guidelines that we should put in place if we are going to decide to stay in our homes, whether we are alone, or are a patient partner who now has a Carer who is no longer able to meet most of the day to day heavier "chores" and driving requirements. Firstly, the home. Is it multi-level and suitable for adding mobility aids, extra grab handles, double stair rails, a motorized StairMaster, or even an elevator? Are fire escape routes clear and manageable, even as mobility becomes more of an issue? Could you manage to live completely on the ground floor level? Could you convert part of the home to a Suite that could accommodate a full time Carer/Nurse? This could also apply to you if you are already living on one level. Secondly, your infrastructure. Can you, or should either of you, still drive a vehicle? If so, how will you manage if you find you have to give up your driving license(s)? Your family and neighbours, would they be able to step up their involvement and support as your needs increase in frequency and commitment? You would need to review/revise your local and family contact network and confirm their ability/willingness to respond quickly to an emergency at all times. Your GP and pharmacist would need to be made aware of your change of plans and be on call for any unexpected issues. Will they do house calls? Can you order your groceries on-line or by phone and have them delivered? The same goes for your medications. Finally, as we age, our physical and mental capabilities may start to deteriorate very slowly, and quite subtly. If you are on your own, these changes are more obvious to you than perhaps to those around you, failing eyesight and perception, loss of mobility, strength and dexterity, perhaps more frequent bowel and bladder incontinence issues. If you are a patient partner or Carer, you may notice these things as they occur, but you may be faced with how to bring them up without denial and conflict. Either way, at this stage, one now needs to decide when it is time to accept "live-in" full time help or move into an Assisted Living Facility. So, once the decision to "age in place" is made, live life to the fullest, as best you can, stay safe, and most of all, keep smiling and striding into the future.
Interested in sharing future Caregiver topics? Email me at: |
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Out and About
As Dragon Dr. Charmaine Jones and partner Linda Gaudet travelled from British Columbia to Ontario, they tried to see as many dragons as possible. Here are a few photos.
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By Jill Berenger, Dragon Claw's volunteer delegate For all the new members of Dragon Claw, I would like to introduce you to the Patient Voice Initiative group. This amazing group has collaborated with governments (state and commonwealth), at least 22 patient and carer consumer groups (like us) and multiple pharmaceutical companies (like Pfizer), universities and health care businesses (like Medicines Australia). I have personally been involved with them since late 2022, which has been the most incredible and elevating experience for a health professional of 43 years. And now as a patient of 25 years, PVI has opened my eyes and heart to how important our voices are to maintaining and improving health. In 2015 a group of people from industry, academia, health professionals and patient groups came together to discuss a pathway to gain the patient perspective on medicine and health. In 2016 this group finally became the Patient Voice Initiative (PVI) after numerous gatherings. The PVI are absolutely passionate about healthcare in Australia being better informed by the knowledge of patients, carers and patient groups. Their objective is for the inclusion of patient perspectives in the structure and operation of the Australian health system, all aspects of patient care and the development, approval and funding of medical technologies. There are three key reasons why our patient voice is important: 1. Evidence Matters.When governments make decisions about investing in healthcare, they take into account the cost. However, decisions are not made on price alone. Instead, they try to maximise the benefit to the community by choosing treatments that are good value and so evidence from clinical trials provides information about the value of a treatment. 2. Weighing Up Outcomes.Good value means different things to different people. A researcher may value an outcome of treatment differently to a doctor who in turn, may value it differently to you. This is why decision makers need our patient input when considering investing in new treatments or changing the way treatments are provided. 3. Make Better Decisions.Decision makers need to know what matters most to patients and carers like us and learn from our insights about how and when treatments may be used best. They want to know if treatments have value beyond clinical trials and if they will make a difference to our daily lives. Our input can help them understand the true value of treatments and therefore make better decisions. The PVI are an astounding group of people, with the amazing CEO, Ann Single, who presented a great Dragon Talk for us in early April. Ann is also Vice President of Health Technology Assessment International (HTAI), with whom the PVI also works closely. I feel very privileged to have been involved with the PVI and hope in the future to share information from some of their Roundtable meetings with you all. www.patientvoiceinitiative.org |
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Australian Pharmacy Professional Conference - APP2025
This year Dragon Claw was given a full delegate pass to the APP2025 annual conference held at the Gold Coast conference in March 2025. This conference is now in its 30th year and has over 8,000 delegates during the four days that includes a very extensive exhibition of all the suppliers to the pharmacy industry. Dragon Chair Denis Tebbutt attended on our behalf and presented a comprehensive report on the numerous innovative projects being developed by this sector. The top two projects he reported were: Pilot Project to extend the scope of the pharmacy practice:This is an industry with a very clear focus on service and the community and it is now beginning to pay off as the completion of a four-year pilot program in Queensland is about to roll out across Australia. With the increasing workload and shortage of General Practitioners Australians are experiencing long delays and higher costs with a breakdown in the community doctor as patients shop around on price and convenience. The Pharmacy Guild in collaboration with the Queensland Government and University created a pilot project that investigated and created a program with certification to extend the scope of pharmacy practice and relieve the GP demand. There will be 23 specific health related issues that become the new service package provided by pharmacists through three different fee-based consultations. Consultation rooms, along with record keeping and timely availability make this a very attractive development and positions pharmacy as the new focal point of primary care within a community. Consultation fees are; Brief consultation of up to 10 minutes $18.85 / Standard consultation between 10 and 20 minutes $35.45/Long consultation is more that 20 minute $68.10 With the program rolling out across Queensland the remaining states and territories are working on their own programs using the model developed and proven successful in Queensland starting this year. This will be the biggest change to primary care in Australia and if it continues to be successful could be the foundation upon which other changes are made that benefits consumers. First Australians session:A growing and developing stream during the conference focuses upon the needs and opportunities for our First Australians. The challenge in these communities goes beyond the availability of medicines, health education and primary care as culture and trust play important roles. The first part however of this session focused upon the collaboration between NAACHO and The Pharmacy Guild working to overcome the funding mechanisms and the availability issues as well as the development of First Nations people in the pharmacy. This led nicely into the second panel that included three pharmacists each at different stages of practice and research showing that no one should believe that they are beyond learning and qualifying to be a practicing pharmacist. As Dragon Claw has found while working in remote communities, not only is the pharmacist the most available of primary care practitioners but they are also more culturally sensitive and used to dealing directly with the public in their retail facilities. Encouraging those who identify as Aboriginal to take up a career as a pharmacist is now a very strong collaborative program between the Guild and Sydney University and it is showing strong and rewarding outcomes. Having local community qualified pharmacists will significantly enhance the service and support that the pharmacy gives its communities. |
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International Dragon
Talks Australia/North America
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In March, we continued to explore stories with author Katherine Brabon, who has RA and has written a novel, Body Friend (reviewed in this newsletter). Lucy Mayes from the HUSH foundation joined us again to share the importance of the narrative.
As we move into the change of seasons, we have an interesting line up. Bibliotherapy, the LIFT project,
movement, failed medical devices, Chinese medicine, and internal family systems model of psychotherapy
will be woven into the upcoming months. If you'd like to be on our weekly invitation list, please
contact
Charmaine and Alasdair continue to facilitate our sessions. If there are topics you would like us to cover, please let us know.
Interested? please contact Charmaine,
Australian Dragon Talks 7pm Mondays
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Monthly Lupus Series, Mondays 7pm
In May, Michelle Clewett our lupus ambassador and Dragons Talks Australia facilitator, took a step back from her weekly role hosting Dragons Talks. Timed with the start of our second sponsored lupus series Michelle is taking a well-earned break and can enjoy sitting back and being a participant. Our WA dragon Fay Baudains has taken over the role and the new series is off to a flying start with presentations from lived experience guests living with lupus and ulcerative colitis, dragon feedback sessions and the soon to be up and running pain series. We've seen many new dragons join our community from across the autoimmune and pain spectrum. We are so grateful for Charmaine who has been getting up super early to join our community and offer such rich information and feedback.
If you are not currently joining us at Dragon Talks Australia, we would love to see you soon.
Everyone is welcome. If you are interested in attending, please email: