At our June Virtual Education Session, retired palliative medicine physician and patient advocate Dr Charmaine Jones shared expert insights into chronic pain, patient communication, and the importance of shared decision-making for people living with scleroderma and other autoimmune conditions.
The session introduced the My Pain Assessment Communication Tool (MPaCT), a patient-designed resource developed to help people communicate the real impact of chronic pain beyond a simple pain score. Dr Jones explored why traditional pain scales often fail to reflect the lived experience of chronic illness and explained how better communication can lead to more meaningful conversations with healthcare professionals and support personalised care. The session also highlighted the ongoing challenges of accessing specialist care across Australia, the importance of preparing for medical appointments, and how collective advocacy can help improve access to healthcare services, testing, medications, and support for the scleroderma community.
Living with scleroderma often means managing symptoms that aren’t always visible. Chronic pain, fatigue and other daily challenges can affect every aspect of life, making it essential to have the right tools, support and confidence to communicate your healthcare needs effectively.
Why the Traditional Pain Scale Doesn’t Tell the Whole Story
Most people have experienced being asked one familiar question during a medical appointment: “On a scale of 0 to 10, how would you rate your pain?”
While simple, this question rarely tells the full story for someone living with a chronic condition like scleroderma. Chronic pain isn’t always constant. It can fluctuate throughout the day, affect different parts of the body, disturb sleep, reduce mobility, impact work, and affect emotional wellbeing.
Dr Jones explained that many people find it difficult to choose a single number because it doesn’t reflect how pain influences every aspect of daily life.
Instead of focusing only on intensity, conversations should also explore:
- How pain affects daily activities
- The emotional impact of living with pain
- Sleep quality
- Work and family responsibilities
- Mobility and independence
- Personal goals and quality of life
These insights can help healthcare professionals develop treatment plans that better reflect each person’s individual needs.
Introducing the My Pain Assessment Communication Tool (MPaCT)
One of the highlights of the session was the introduction of the My Pain Assessment Communication Tool (MPaCT). Unlike traditional pain scales, this patient-designed resource helps people describe the complete experience of living with chronic pain.
The tool allows users to record:
- Where pain occurs
- The type and intensity of pain
- Words that best describe the pain
- How pain affects physical activities
- Emotional wellbeing
- Sleep
- Relationships
- Work and daily responsibilities
- Strategies currently being used to manage pain
- Personal priorities and treatment goals
The aim isn’t simply to record symptoms. It’s to help patients and healthcare professionals have more meaningful conversations that support shared decision-making. When clinicians understand how pain affects someone’s everyday life – not just how severe it feels – they’re better equipped to work collaboratively with patients on treatment decisions.
Chronic Pain Is a Condition in Its Own Right
Dr Jones also shared current understanding of chronic pain from a medical perspective. Research now recognises chronic pain as more than pain that simply lasts a long time. Over time, persistent pain can change how the nervous system processes pain signals, making the body more sensitive and causing pain pathways to become more easily activated.
Understanding these changes helps explain why chronic pain is very real, even when symptoms aren’t visible to others. For many people living with scleroderma, this validation is incredibly important.
Preparing for Healthcare Appointments
Medical appointments are often short, making preparation essential. Some practical strategies discussed during the session included:
- Keeping track of symptoms between appointments.
- Writing down questions before your consultation.
- Recording changes in pain or other symptoms.
- Using communication tools to explain how symptoms affect daily life.
- Discussing what matters most to you, rather than focusing solely on symptom scores.
These simple steps can help ensure important concerns aren’t forgotten and encourage more collaborative healthcare conversations.
Access to Specialist Care Remains a Challenge
The discussion also acknowledged the reality many Australians face when accessing specialist care. For people living in regional and rural communities, appointments often involve significant travel, lengthy waiting periods and ongoing coordination between multiple healthcare providers.
Participants also discussed the continuing shortage of rheumatologists across Australia and the importance of maintaining recommended health monitoring and annual screening. Although these challenges remain, being informed, prepared and proactive can help people navigate the healthcare system more confidently.
Stronger Advocacy Creates Better Outcomes
Another important message from the session was that every member of the scleroderma community has a role to play in advocacy. Patient organisations continue working to improve:
- Access to specialist services
- Government funding
- Availability of medications
- Access to recommended diagnostic tests
- Public awareness of scleroderma
- Research and education opportunities
Membership of state and national scleroderma organisations strengthens these advocacy efforts by demonstrating the size and needs of the community when engaging with governments and policymakers. Together, our voices are stronger.
Looking Ahead
Education empowers people living with scleroderma to become confident partners in their own healthcare. Tools such as the My Pain Assessment Communication Tool are helping shift conversations away from simply measuring pain towards understanding how chronic illness affects real lives. As research continues and advocacy grows, initiatives like these offer hope for more person-centred care and better health outcomes for everyone affected by scleroderma.
Frequently Asked Questions (FAQs)
1. What is the My Pain Assessment Communication Tool (MPaCT)?
The My Pain Assessment Communication Tool (MPaCT) is a patient-designed resource that helps people living with chronic pain explain not only where their pain occurs but also how it affects everyday life, emotions, sleep, work and personal wellbeing.
2. Why isn’t a 0 – 10 pain scale enough?
A simple pain score doesn’t capture the complexity of chronic pain. Two people may both rate their pain as a “5,” but experience very different impacts on their mobility, sleep, mental health and daily activities.
3. How can I prepare for my next specialist appointment?
Preparing a list of symptoms, questions and treatment goals before your appointment can help make the conversation more productive. Using tools that clearly explain how symptoms affect your daily life may also support better communication with your healthcare team.
4. Why is patient advocacy important?
Advocacy helps improve awareness, access to healthcare services, funding for research, medication availability and government support for people living with scleroderma. Every member strengthens the collective voice of the community.
TL;DR
Living with scleroderma often means managing chronic pain, navigating complex healthcare systems, and advocating for your own care. During our June Virtual Education Session, Dr Charmaine Jones shared valuable insights into why traditional pain scales don’t always reflect the lived experience of chronic pain and introduced the My Pain Assessment Communication Tool (MPaCT) – a patient-designed resource that helps people better communicate with their healthcare team. The session also explored the challenges of accessing specialist care in Australia and highlighted how collective advocacy can improve access to treatments, testing and support for everyone living with scleroderma.
Conclusion
Living with scleroderma involves much more than managing symptoms – it requires navigating healthcare systems, advocating for appropriate care and finding ways to communicate experiences that are often invisible to others.
Together, we can continue raising awareness, improving healthcare conversations and advocating for better outcomes for everyone affected by scleroderma.
For those living with Scleroderma, staying updated and informed can make a world of difference. Connecting with others can also be hugely beneficial. Find out more about support in your area by clicking here.
If you’d like to gain firsthand knowledge, our National Education Sessions and Virtual Education Sessions are available to you at no charge. Our Virtual Education Sessions are held every month through Google Meet. You can sign up for these free Virtual Education Sessions by clicking here.
These sessions provide an opportunity to engage with medical professionals and seasoned legal experts who will address common inquiries about Scleroderma and related topics.