Vale Jackie Morris
It is with great sadness that we tell you of the unexpected passing of our dear Dragon Claw member, Jackie Morris.
Jackie was a frequent attendee and supporter of both Dragon Talk groups. She was an engaged member of the Patient and Carer Committee, and an active contributor to Dragon Claw's project work. In addition, Jackie ably represented Dragon Claw at conferences and health forums where her direct communication and practical approach made her an excellent patient advocate for people with autoimmune conditions.
Most of all, Jackie was warm, generous, fun and a much-loved member of Dragon Claw. We will miss her greatly.
Dragon Claw has provided Jackie's family with a condolence card and flowers in recognition.
Gratitude and appreciation for all our volunteers.
We are always grateful to all our volunteers who are helping our charity mature into a strong and respected organisation.
This year we have been invited to represent Dragon Claw both nationally and internationally. Our Patient Ambassadors have attended the following major conferences:
- The Asia Pacific Roundtable on Shared Decision Making at Singapore (Dragon Fay Baudains)
- The Aust/NZ 2024 Rheumatology Conference in Christchurch NZ (Dragons Jan Fraser and Susan Hughes)
- The Summit on Arthritis and MSK conditions at Parliament House, Canberra (the late Jackie Morris).
- Pharmacy Guild in Brisbane (Denis Tebbutt, Our Chair, Dragons the late Jackie Morris, Rudy Rudhran, Susan Hughes).
The world is coming to acknowledge that patients MUST be at the centre of our health sector, from research through to diagnosis and treatment. So we thank everyone who helps us in any way.We‘re all in this together. If you feel you have skills that can help us please read on and be inspired to contact us at
Rebecca Saunders is our outgoing founding member of Dragon Claw’s Patient and Caregiver Committee (PAC). Bec was diagnosed with Juvenile Idiopathic Arthritis (JIA) when she was a young teenager. She’s been part of our team for seven years and now that she is a busy mum with two young children and is pursuing her fashion design career, she is rotating off our PAC team. Rebecca has had many volunteer roles. These include providing JIA patient surveys on behalf of Dragon Claw, presenting her story to Dragon Talks, consulting on our original branding and sharing her beautiful photo with her baby Edward for our original promotional banner. We’ve really appreciated Bec’s work and are thrilled she’ll continue her support when opportunities arise.
Anne Hughes is a supporter of friends with autoimmune diseases and has recently joined our PAC team. She has volunteered to coordinate our Projects meetings and help us edit our newsletter (no easy task!). Thank you, dear Dragon Anne.
l-r: The late Jackie Morris, Rheumatologist, Prof. Rachelle Buchbinder, Tracey Rudd, CEO of the Australian Rheumatology Association.
Parliamentary summit on better care for arthritis and musculoskeletal conditions.
The late Dragon Jackie Morris was invited by host Arthritis Australia to attend this recent summit at Parliament House in Canberra. She has over 40 years of lived experience and was able to enrich the discussion on practical solutions for more affordable treatment and management options. Jackie reports on this summit. Read here:
We were welcomed to the summit by the Minister for Health the Hon Mark Butler MP, the Shadow Minister for Health and Aged Care Senator the Hon Anne Ruston and Parliamentary Friends of Arthritis Co-Chair Senator Louise Pratt.
We also heard some very interesting presentations:
Professor David Hunter – Innovative Models of Care
Professor Rachelle Buchbinder – Impact through research
Ms Jo Root – the perspective of Lived Experience
Associate Professor Jane Desborough – Out of pocket expenses.
Each table then discussed their reaction to these topics. For example, why not implement chronic disease programs in primary care settings (including Telehealth, treatment programs including education, motivation, exercise/physical activity, nutrition, pain and symptom management, emotional and social support)?
How can governments help with out-of-care costs?
What role can private health insurance play? It was surprising to learn that investment in Arthritis and MSK conditions is chronically low, compared to other similar burden of disease conditions and when considering the financial and social impact including health system costs. There isn’t enough money given to this research.
Said our late Dragon Jackie: “I can only hope that some practical reforms or improvements come out of this interactive summit to support those with this type of chronic pain.”
Editor’s note: Dragon Claw has subsequently endorsed Arthritis Australia’s Communique seeking more funding and support for those with arthritis.
Asia Pacific Roundtable on Shared Decision Making and
The Benefits of RA Remission for a Country, Singapore
By Dragon Fay Baudains
In August Dragon Fay attended the Immune-Mediated Inflammatory Diseases Summit in Singapore. Running alongside the APLAR (Asia-Pacific League of Associations for Rheumatology) Congress, delegates from patient advocacy services across the Asia-Pacific region gathered to discuss the barriers to and successes of Shared Decision Making.
Dragon Fay Baudains made the trip to share our community’s challenges, and offer examples of best practices, thanks to support from Abbvie Pharmaceutical.
Seven countries shared their challenges in bridging the gap between their existing health models and one that embodies patient empowerment, open communication and decision-making tools to support both patients and health professionals. The delegates represented the RA, Crohn’s & Colitis, Eczema & Psoriasis communities. Some of our time was spent as a whole group and others in our individual communities to understand the needs across different immune -mediated inflammatory diseases. Delegates came from Australia, China, Japan, Korea, Singapore, Hong Kong and Malaysia.
The event host Brian Kennedy from Global Alliance for Patient Access (GAfPA) opened the summit with a history of Shared Decision making which can be traced back to 1972. He spoke to the reality that Shared Decision Making is never a one-time event and should include review, more than one option, assessing patient preference and understanding the information.
Australian Crohn’s and Colitis CEO Leanne Raven shared her organisation’s successes in gaining government support (with the help of Dragon Claw) to create literature, helpline and public service announcements to support people living in her community.
Other countries shared their pamphlet tools. In many of the Asian countries, a patient appointment lasts just 3-5 minutes, so having a succinct way to organise your symptoms and concerns helps them get the most out of their visit.
The second day meeting was for the RA community and included patient advocates from 4 countries and rheumatologists from Australia, Qatar and Japan. It examined the benefits of remission. Prof Andrew Oster from Monash University presented a literature review conducted in 2022 that ultimately showed that early remission in RA resulted in lower medical costs, lower indirect costs and better indirect and direct economic outcomes. This data is crucial for patient advocates as they petition government agencies on tools and services to reduce the time it takes a patient to reach remission.
Overall the summit provided evidence and support to show that there are many good tools that we can create or access to support Shared Decision Making and ultimately remission. The community was very open to sharing their stories and products and Dragon Claw is well positioned to continue not only to support our community but to provide content and create tools that can benefit other countries.
Our Webinars update
Dragon Jill Berensen is passionate about sharing her lived experience as a patient and retired nurse. She’s always willing to represent Dragon Claw and attend webinars that focus on patients contributing to new health programs and developments – especially placing Patients at the centre of medical research and the Health Technology Assessment (HTA) process. Jill reports on Consumers in Research: What is our role and sector progress to ensure patients are at the centre of research and HTA work in Australia? Jill recently attended two webinars and wrote her report for us.
Consumers Health Forum of Australia.
Webinar: Consumers in research: What Is Our Role? – August 22, 2024
The forum discussed how consumers can help shape the future of healthcare. This included consumer input in health research design and implementation, the types of opportunities that exist for consumer participation and stories of consumer-driven health research initiatives.
My take: Not all research is good research. Indeed, some research can be hugely stigmatizing. So be determined, stick at it, and remember that advocacy comes in different forms - one size does not fit all, a seat at the table means you are part of the conversation. These are our mantras: "Nothing about us without us", and "My voice matters, my story is valid".
Medicines Australia
Webinar: HTA Policy Virtual Roundtable: Bridging Fund/Managed Access
What are they?
A Bridging Fund: A technology-diagnostic funding program that allows interim patient access within a reasonable timeframe, separate from standard funding pathways.
Managed Access: A conditional agreement between a manufacturer and payer that allows earlier reimbursement of a health technology, with mechanisms to address uncertainties regarding performance or utilization.
My take:
Bridging Fund: Access by patients is still very slow. Some patients are waiting two years or more. We need to get them faster access to treatments.
Managed Access: The understanding of 'Real World Experience' is incomplete. What’s more, there are no incentives, and Australia ranks very low in comparison to other OECD* countries, Finally, but not surprisingly, transparency is not well promoted.
*Organisation for Economic Co-operation and Development
Lupus Speaker Series – Newcomers welcome!
By Dragon Michelle Clewett
We’ve benefitted from three more lupus presentations as part of Dragon Claw's monthly lupus speaker series, sponsored by Astra Zeneca. These are presented on zoom. There is no charge. The sessions are also posted on our website www.dragonclaw.net as they become available.
In July, Professor Dipti Talaulikar, clinical haematologist and academic from the Australian National University School of Medicine and Psychology, explained some of the blood problems that can occur in lupus and other autoimmune conditions.
In August, patient advocacy expert Cathy Sertori discussed the process that led to the recent inclusion of Anifrolumab (Saphnelo) on the Australian Pharmaceutical Benefits Scheme (PBS), which is the first time in 60 years that a targeted therapy for lupus has been listed on the PBS and made affordable to patients.
In September, preeminent rheumatologist and lupus expert Professor Eric Morand from Monash University, gave the keynote address about the incredible work his team of researchers is doing to discover a cure for lupus.
Upcoming lupus presentations include:
- 21 October 2024: Estela Mata-Carcamo from charity Looms4Lupus will talk about building a trust relationship with your physician to improve lupus management.
- 18 November 2024: Lupus patient Zali McPherson will share the challenges of living with an invisible illness.
- 9 December 2024: Dermatologist Associate Professor Amanda Saracino will explain the cutaneous (skin) impacts of lupus.
If you would like to attend these talks, please register via Dragon Claw's website: https://www.Dragonclaw.net/index.php?view=article&id=64&catid=2
Thriving over Surviving – featuring Dragon Marilyn Hay
Interview with Marilyn Hay by Dragon Charmaine Jones
This August Dragons Dr. Charmaine Jones and Linda Gaudet sat down with Marilyn Hay to talk about her remarkable life -- from managing the loss of loved ones and reinventing herself as a Canadian government leader, to being a successful writer while managing chronic pain and mobility challenges from arthritis and ankylosing spondylitis. This is her inspiring story.
“Well, I’m the oldest of five children. I went to school to be a registered nurse. It was the old style of education, “live in the hospital’s residence and more or less be a slave”. After a few years of working in the Crisis Clinic (which was the first 24/7 in the world staffed by nurses!), I went back to university full-time, working part-time to get through.”
“Then I worked for the federal government for 28 years before I disabled out.” CJ: Note: Suffering chronic pain and mobility challenges from arthritis and ankylosing spondylitis having had 6 joint replacements.
CJ: Note this was Marilyn’s job with the Canadian Federal Government:
Regional Director General, Human Resources Development Canada, 1998- 2002. She managed regional social programming operations with 1000 staff, a budget of $42 million and a program transfer budget of $4.5 Billion. She interfaced with provincial officials, aboriginal leaders, and leaders in the public sector to coordinate services and to provide leadership to urban aboriginal programs and homelessness, among other programming areas. Since retiring, Marilyn provides leadership coaching to people in public and not for profit organizations.
CJ: Was there a pivotal point in your life?
“When I was 21, most of the people in my circle, like my best friend, my roommate and her fiancé, the guy I was crazy about, a friend from high school and a few others, all died in various accidents. And my best friend died during her first trip as a driver after I’d taught her how to drive…. Before all of this, I was really quite shy. I’d sit in the nurses’ residence with friends there, just sit on the side and not say a word, thinking that I had nothing to say. I was the youngest grad of then”
“After all these friends died, I totally withdrew for 3-4 months. God, it hurt. But, then I thought, I can’t live like this. So I decided then to give as much, get as much, live as much, love as much as possible. I wanted people to know how I felt about them because you never know, you really never know, if tomorrow morning they’ll still be here or if you’ll still be here. It built a kind of urgency and engagement for me.”
cj: So it was really a conscious decision to reinvent yourself?
“Yes, I had to work on it. The more you do, the easier it is.” said Marilyn.
“I have always wanted to travel. When I was young, we had one of those big books, 3-4 inches thick, with blue linen binding. It taught everything: how to read palms and head shapes, how to dress a wound, get a PhD, and it had a picture of the Taj Mahal. I thought “I want to go there”, and I did, while attending Canada’s National Defence College! “
“My first trip away from home was with my grandparents when I was 3 years old. I didn’t even look back when I left my mom. She never got over it!”
“I have traveled as much as possible. Partly because I thought, looking at my mom, that I would get arthritis, I actually went into debt to travel around the world while I could still walk well enough to get around easily. I was very lucky to also be able to travel with the National Defence College training program and after as an official representative of Canada at various international meetings and gatherings. “
cj: You mentioned when you had to leave your job due to your health, you looked for other projects to be involved with. Marilyn is heavily involved with leadership roles in 3 large movements:
She is Chair of her local chapter and former Board Member of the Council of Canadians www.canadians.org, she is heavily involved in Co-operate for Canada www.cooperateforcanada.ca and the Grand River Watershed Hub. https://legacyproject.org/7gen/bioregional.html
cj: It doesn’t sound as if you are sitting idle very often. I almost hate to ask you this next question! Have you any hobbies?
“I have been an artist working in oils and acrylics.”
“I’m also an internet fan fiction writer (as ‘Arianna’) with over 200 stories, many of them book-length with several different fandoms. When I left my paid work, I started writing. When I am in the flow, writing or painting, I am not aware of my pain. Writing became one of my survival techniques. When I couldn’t leave my home it gave me a window on the world. The added and most wonderful benefit is that fans from all around the world became friends. Some of my early stories are here https://www.fanfiction.net/u/352023/Arianna18”
Thriving over Surviving – featuring Dragon Sarah Locke
It poured rain but it didn’t dampen the enthusiasm for “Climb the Peak” for MS.
The 2nd year of Climb the Peak for MS was on June 8th, 2024 in Henniker New Hampshire at Pats Peak Ski Resort. Sarah Locke, our very own Dragon, and diagnosed with MS in 2019, founded the event in 2023 raising $16,000. This year her goals were also lofty as she set out to raise $20,000. The event grew from 28 participants her first year to over 70 this year. Unlike the first year where the weather was perfect Mother Nature turned to full on downpours the day of the event but everyone was in great spirits, showed up and made an impact, hiking, climbing and walking to raise awareness for MS. Sarah tripled her number of raffle items, had 20 of her Jeep club show up to show off their Jeeps and raised just over $29,000.
In the 3 years Sarah has worked to raise awareness and funds as an MS Ambassador, her efforts have raised over $50,000 and caught the attention of the National MS Society. They sent a representative to her event this year to speak and share Sarah’s incredible accomplishments and help kick-start awareness for Sarah’s 3rd year happening on June 9th 2025! To learn more and view all the pictures, check out the event blog - https://www.iworkout.biz/blog/when-it-rains
Sarah Locke has also become a Rotarian in her local community. She strives to give back and serve her community in all that she does and she learned that International Rotary isn’t just for business owners and CEOs but for individuals looking to serve their community over self. Sarah plans to provide ideas and energy in an aging club to help build membership and increase awareness of what they do in her community. She enjoys her Thursday morning meetings and engaging with all of the local community members that have the same interests in growing their community through service.
Out and About
Mum & Bub Corner
By Dragon Charlotte Breckwoldt (nee Hill)
In July 2023, we welcomed our beautiful baby girl, Ellery, into this world. I had spent many years on a preconception health journey to help best set me up for the experience ahead and I went into pregnancy with my symptoms of my autoimmune condition (ankylosing spondylitis) largely under control. That being said, I was still apprehensive as to how my condition would respond. Read here:
The most challenging time was at the end of my first trimester. I have vivid memories of a weekend away in our van when simply the act of lying down, rolling over and getting back up again was tear- inducingly painful. With the support of an osteopath and a pregnancy pillow to support my sleep, these excruciating symptoms didn’t last for too long, although I did have ongoing thoracic pain which made it hard to find a suitable bra to wear. At the end of the 2nd trimester, my partner and I took an Optimal Birth Positioning course, which gave us a series of partner stretches to do every day. These, alongside regular yoga and Pilates, were life-changing for me and as a result, by my third trimester I mostly felt fantastic and I would highly recommend the course.
We had a physiological birth despite restricted movement in my pelvis due to my autoimmune condition. But in the initial postpartum period I did struggle significantly with mastitis. Although this isn’t scientifically proven, I feel this was being driven by my autoimmune condition, which affects my thoracic area behind my breasts and I worked with a chiropractor to support my neurological health. Otherwise, the symptoms of my autoimmune condition have mostly been under control, and I still don’t take any medication for my autoimmune condition and mostly focus on diet and lifestyle. I am still breastfeeding which I think is really helping my immune system. So it will be interesting to see what happens when this journey ends (tbc!).
We are both loving our life as parents, although it’s been very busy as we also got married (in the UK) earlier this year, have travelled to Europe a number of times to see family and I am spending lots of time proactively supporting my health . I am now also starting to work again in my nutrition business after a much longer than anticipated time off. My business now focuses on supporting women prepare their bodies for pregnancy and through pregnancy and postpartum.
If anyone has ankylosing spondylitis and wants to talk more about my perinatal journey please be in touch.
Charlotte Breckwoldt (née Hill)
FNTP | Functional Nutritionist
Your Partners Support Corner
By Dragon Alasdair Cook
Well, the dreaded moment has come, you and your patient/partner have had to make the very difficult joint decision to move home, whatever the reason, up-sizing, downsizing, building a custom home, or moving to a location to better cater for your patient/partner’s mobility issues, debilitating auto-immune issues or speedier and safer access to hospitals and specialist medical care.
This is often a hugely stressful time for both of you, and any children or aged parents that may be living in your home. There are so many things to consider, from the condition and saleability of your home to the availability of a new home, affordability, the right size and condition and in the desired location.
You probably have a local support network that is currently working really well for you, friends, neighbours, doctors, dentists, pharmacists. However, a change in health or circumstances has now necessitated a move, and it is like diving into a black hole chasing one or several light beams, the need for a sized home that will meet your needs for the upcoming years, a home that will match your financial situation for example, or, a home that is on one level, smaller and easier to clean and maintain, or a location that will allow you to go down to one vehicle, or not require a vehicle at all, as free assisted public transport is readily available.
For those of us who live alone with our multiple health issues, there are fewer options to consider before you struggle with a move. For example, is your current home large enough to have a live-in caregiver, or someone who can help with the running and maintenance of the home? Would you consider offering use of an area of the home to someone who needs to be in your area for three or four days a week, maybe they run Yoga courses or Personal Training in your area? You could offer the space either in exchange for help, cleaning, gardening, shopping, driving or even perhaps some income assistance? Obviously these options would involve a stringent background check, and personal interviews.
It is natural for us to want to stay put, safe and comfortable in our nest and surrounded by a comfortable routine, but sometimes a move is forced on us by changing circumstances, and so we must shake our feathers and do something about it before we absolutely have to make the move.
Meanwhile, keep smiling and striding into the future.
Dragon Talks 1 Australia/North America
Tuesday Evenings Canada and Wednesday 10am Australia.
Dragons Talks 1 has continued to happen weekly with time for sharing, mindfulness and education. Among our highlights were two sessions on the link between trauma and autoimmunity, by Dr Veronique Mead.
Storytelling; the power of stories, the why we tell our stories with author Sue Robins, and what and how to share our stories, with storyteller facilitator Moya Sayer-Jones.
We have some exciting sessions ready for your consumption October through December 2024.
- Oct 1/2: We celebrate random acts of kindness in remembrance of Paul Kett by inviting Lucy Mayes to join us from the HUSH Foundation. https://www.hush.org.au/
- Oct 8/9: Guest Dr Catherine Crock, who founded the HUSH foundation and “Gathering Acts of Kindness”
- Oct 15/16: Guest Stuart Torrance will join us. He is a “rare one” - a man with scleroderma. He is also involved with Mens Shed Australia mensshed.org
- Oct 22/23: Guest Barbara Schumacher will join us to discuss climate change and effects on human health
- Oct 29/30: Furthering our discussion on gratitude by focusing on Forgiveness.
- Nov 5/6: Guest Cathy Sertori will speak with us about how medications get funded
- Nov 12/13: Will be our quarterly time of mindfulness
- Nov 19/20: Recent member Erin Mallery with tell us all about getting her service dog
- Nov 26/27: Guest Julie Jones, editor of Travel without Limits will share traveling tips of those with disabilities.
- Dec 3/4: Guest Dr Tervaert will share the importance of Vitamin D in autoimmune conditions
- Dec 10/11: A Xmas game for some fun
- Dec 17/18: Pacing oneself through the holidays
- Jan 7/8: We will return with an exciting lineup for you!
Interested? please contact Charmaine,
Dragon Talks 2 Aussies 7pm Mondays
This quarter provided another dynamic range of speakers and self-care topics. We heard about blood problems that can occur in autoimmune conditions and how they manifest, why thermal dysregulation can happen and how to manage it, and the seven different types of rest we need in order to feel refreshed. We also explored a new pain management and education app, learned how medicines are made available in Australia and what this means for autoimmune patients, and considered health advice about piercings for people with autoimmune conditions.
Upcoming topics for Dragon Talks 2:
- 30 September 2024: Dragon Fay will talk about representing Dragon Claw at an international conference about shared decision making.
- 7 October 2024: No meeting (public holiday).
- 14 October 2024: How to improve your memory.
- 21 October 2024: Lupus Speaker Series - Estela Mata-Carcamo from charity Looms4Lupus will talk about building a trusting relationship with your physician to improve lupus management.
- 28 October 2024: Impact of thoughts on feelings, and how to take control.
- 4 November 2024: Overview of clinical trials and the patient voice (TBC).
- 11 November 2024: No meeting (Remembrance Day).
- 18 November 2024: Lupus Speaker Series - Lupus patient Zali McPherson will share the challenges of living with an invisible illness.
- 25 November 2024: Charcoal - how it can work as a filter for toxins (TBC).
- 2 December 2024: TBC
- 9 December 2024: Lupus Speaker Series - Dermatologist A/Professor Amanda Saracino will explain the cutaneous (skin) impacts of lupus.
Dragon Talks Enquiries please contact
Help Lines
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
Chronic Pain Aust. 1300 340 357 https://painmanagement.org.au/services 