Suzie Edward May shares insights into how health professionals help her manage musculoskeletal conditions.
Living with a musculoskeletal disease is both complex and demanding of both health professional and consumer. It requires both to work together as they strive to reduce pain and limitations and increase function.
It is often accompanied with complex comorbidities which means treatment teams become multidisciplinary. This adds to the complexity and need for coordinated care, effective communication and shared decision making.
As a consumer who has lived with chronic rheumatoid arthritis and multiple comorbidities for 19 years, I experience uncertainty, frustrations and physical pain every day.
I constantly navigate our health system to ensure it gives me what I need, fortunately with a dedicated and skilled health care team by my side.
My ability to successfully navigate the system has required me to learn and understand how the different parts of the system work together. I have learnt over two decades that the best way of achieving this is to be as informed and empowered as I can, working with my health-care team every step of the way.
What is an empowered health consumer?
Health consumers who understand their diagnosis and treatment options; who are engaged in shared decision-making with their health-care team; and actively use self-management strategies to live the best life they can. When you live with an unpredictable condition such as a musculoskeletal disease, it can be incredibly disempowering as you lose a sense of control over your body.
For the first 10 years of living with rheumatoid arthritis, I felt a tremendous sense of loss of control over how my body felt, how it reacted to everyday situations including stress and exercise, and what challenges it was going to throw at me next.
There seemed to be no pattern to my pain, inflammation and limitations, making it hard to plan my days, activities and longer-term goals. However, the more educated I became about my condition and how to manage it, the more confident I felt to live my life with my health challenges.
What role do medical professionals play in empowering health consumers?
With the current pressures on our public and private health systems,
it is important that doctors play a key role in empowering consumers to self-manage their condition (to the extent to which the person is able). This is particularly important for consumers with chronic conditions such as musculoskeletal diseases and related comorbidities, as their needs often require significant resources.
As a medical professional, you can help consumers by:
increasing their health literacy by teaching them (in plain language) about their health condition/s, treatment options, prognosis, what their pathology and other test results mean and helping them understand how the health system works so they can navigate and connect with the services they need
engaging in shared decision-making by giving them choice over medications, methods of taking medications, treatments, specialists, exercise and other important decisions
assisting them to set and reach achievable goals by taking time to understand who they are, what is important to them, what they want to achieve and help them achieve it
facilitating self-management skills by encouraging them to undertake self-management courses*, be compliant with medications and other treatments, understand and practise good nutrition and exercise regimes with guidance and support, and understand the importance of preventative health care.
How can medical professionals do this?
Developing open, honest, trusting and mutually respectful working relationships is the key to genuine shared decision-making and effective self-management by consumers, leading to better health outcomes.
Using effective communication skills with patients is essential – active listening, clear concise language, empathy, compassion and respect. Consumers with chronic diseases need a team of skilled professionals around them to educate, encourage and empower them.
This powerful role played by medical professionals is essential to consumers becoming ‘experts’ in their own care, reducing their demand on our health system, and feeling more confident to be fully informed and engaged in the management of their health.
ED: Suzie Edward May is former deputy chair of the East Metropolitan Health Service board; a member of the Australian Orthopaedic Association Board ethics committee; a lecturer at UWA and Notre Dame medical schools, and a consumer representative and advocate in musculoskeletal disease and medical research.
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