This blog post summarises the key insights from the latest Virtual Education Session (VES) led by speakers from the Office of the Public Advocate, an independent body that works to protect and promote the rights, interests, and dignity of people with disabilities and mental health conditions in Victoria, Australia.
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Why Healthy Discussions?
Healthy Discussions is an initiative aimed at improving the way health practitioners communicate with and support patients with disabilities. The goal is to ensure people with disabilities are empowered to make informed decisions about their own healthcare. Many people with disabilities don’t always want to make decisions on their own; some feel anxious or unsure about their ability to do so, often because the option to make choices hasn’t been available to them in the past.
However, everyone should have the right to choose how they are involved in their healthcare. This includes being able to speak up, ask questions, and receive support in understanding their health options. In this session, the focus was on promoting choice and ensuring that health practitioners respect and encourage the decision-making rights of patients with disabilities.
Who Are Health Practitioners?
Health practitioners, including doctors, nurses, physiotherapists, speech pathologists, and other healthcare providers, play a vital role in supporting people with disabilities to make informed health decisions. Health professionals must not assume that a patient with a disability lacks the capacity to make decisions, especially when it comes to understanding the risks and benefits of medical treatments. It is essential that health practitioners engage directly with the patient, not just with family members, carers, or support staff.
A Personal Reflection
One speaker from the Office of the Public Advocate shared a personal story about visiting the hospital for knee surgery following a martial arts injury. When the surgeon saw the speaker in a wheelchair, they automatically spoke to the patient’s father instead of directly engaging with the patient. This experience highlighted the issue of people assuming that someone with a disability cannot make their own decisions. In this case, the support of a trusted person like the speaker’s dad was helpful, but the speaker emphasised the importance of healthcare professionals recognising that people with disabilities have the right and capacity to make their own decisions.
Further, individuals with disabilities expressed frustration over the way they are treated by healthcare professionals. For some, the key issue is how medical staff often talk down to them or assume they cannot understand their treatment options due to their disability. This can feel patronising and disrespectful. Patients with disabilities want to be treated as equals and have their thoughts, questions, and concerns taken seriously so they can make their own healthcare decisions.
Supported Decision-Making
Supported decision-making is an essential concept, not just for people with disabilities, but for everyone. This approach ensures that patients get the help they need to make their own medical decisions, while respecting their rights, values, and preferences. Healthcare professionals should provide support in a way that allows individuals to fully participate in decisions about their treatment, recognising their legal and human rights.
The Role of the Public Advocate
This initiative, supported by the Australian Department of Social Services, aims to improve communication between healthcare practitioners and patients with disabilities. It is designed to ensure that people with disabilities are actively involved in their healthcare decisions. The content of this initiative was developed with input from people with disabilities, as well as experts like Dr Jane Tracy from the Centre for Developmental Disability Health Victoria, whose mission is to improve health services for people with developmental disabilities.
The Need for Disability Awareness Training
There was a strong call for healthcare professionals to undergo training in disability rights and awareness. Doctors and other health practitioners need to understand that people with disabilities are human beings who deserve the same respect, dignity, and healthcare rights as anyone else. The discussion pointed out that a person with a disability should not have to prove their competence in decision-making, nor should they be treated as if they are less capable.
The Importance of Advocacy and Self-Confidence
Self-Advocacy: One key theme that emerged is the need for self-advocacy. It’s essential to be assertive and advocate for what you need, even when others might not seem to listen or respond with respect. One experience of reception staff being patronising is a classic example of how people can feel dismissed or misunderstood. It can be difficult, but maintaining confidence and knowing your rights is crucial.
Being an Informed Consumer: It was emphasised that it’s important to approach these situations knowing you are an informed consumer. When you’ve been working with a specialist and have the knowledge and right to request certain things—such as changing a prescription or making special requests—it’s important to stand firm in your right to do so.
Holding Your Head High: Even when facing challenges like unhelpful or dismissive reception staff, it’s important to maintain self-respect and hold your ground. By doing so, you’re not only advocating for your own needs but also paving the way for future patients to have a better experience.
Building Confidence in Healthcare Settings
It’s normal to feel nervous or unsure when meeting new doctors, but it’s important to build trust and familiarity with practitioners where possible to feel comfortable. There is also an innate frustration with the fast-paced nature of medical appointments, where health professionals rush through information without ensuring the patient understands. Booking longer appointments can be helpful if you know you’ll need extra time to process information or discuss complex issues. This helps avoid feeling rushed and gives you ample opportunity to ask questions and fully understand the information being shared.
For some participants, having a team of healthcare providers who understand their unique needs is essential. This support team can help navigate the complexities of both visible and invisible disabilities, like brain injuries or conditions like scleroderma. Understanding what works for a patient and making adjustments for memory, communication, and emotional needs can significantly improve their healthcare experience.
Practical Strategies for Support
A helpful tip shared by a participant was the importance of bringing a trusted person to appointments, especially for those with cognitive or memory challenges. This could be a family member, friend, or support worker who can help with memory or emotional support. Written summaries of medical appointments, such as detailed letters or notes from specialists, were also highlighted as a useful tool to ensure that patients fully understand their treatment plan and can reflect on the information later.
It is also essential to be clear and open with healthcare professionals about how your disability affects you, whether it’s visible or invisible. Being upfront helps to ensure that healthcare practitioners understand your needs and can adjust their communication and approach accordingly. This can include sharing specific challenges, whether they’re related to memory, understanding information, or processing treatment options.
Further, honesty is key. You should feel confident in communicating what you can and can’t do. If something in your medical appointment isn’t working for you—such as a lack of clarity or a rush through important information—be open about it. It’s better to speak up than to waste time in an appointment that doesn’t address your needs or help you make informed decisions about your health.
Finally, patient portals have become a valuable tool in some healthcare systems, allowing individuals to review their medical notes after appointments. This can be helpful for understanding what was discussed, especially if medical language is complex. In one case, it was shared that seeing notes in these portals gives a chance to discuss them further with a GP. However, it was also pointed out that it would be beneficial if specialists would take this approach, ensuring patients have more access to detailed information and a chance to follow up.
Managing Frustration with Reception Staff
One of the frustrations that came up in the discussion was the experience of being treated with disrespect or impatience by some reception staff. This can happen even when you’re simply trying to get a prescription refilled or make a request that’s aligned with your previous discussions with your specialist.
If you encounter resistance or rudeness, it’s important to remember that the receptionist’s attitude is often shaped by office protocols or inexperience, not necessarily a reflection of your needs. However, it’s still essential to be assertive and clarify your rights. If needed, discussing this issue with your specialist can help ensure their staff is better trained or more understanding.
Energy Conservation: Avoiding Emotional Fatigue
Another important point raised was managing emotional energy. Getting upset or angry can be emotionally exhausting, especially when you’re dealing with someone who doesn’t understand your needs. It’s important to weigh whether engaging in a confrontation is worth your precious energy or whether it’s better to stay calm and address the issue in a way that doesn’t deplete you.
Internal Strategies for Handling Conflict: One practical piece of advice was to come up with a rehearsed response or phrase that you can use to address frustrating situations. This could be something you say to yourself in moments of stress, to remind yourself that you’re doing the right thing. It can help you stay grounded and assertive without getting too emotionally caught up.
Managing the Power Imbalance in Healthcare
The Doctor-Patient Dynamic: A powerful point made was about the inherent power imbalance in the healthcare setting, specifically due to the word “patient.” The term comes from Latin and historically implies that the person receiving care is in a passive role, at the mercy of the doctor’s expertise. This can contribute to a sense of disempowerment for patients.
Changing the Language: When creating the Disability Action Plan for Royal Melbourne Hospital, it was mentioned a shift in language to avoid disempowering terms. This reflects the growing recognition of the need to empower patients and help them feel like equal partners in their healthcare journey. Focusing on patient-centred language helps remove the feeling of being “lower” or “lesser” than the healthcare provider.
Treating Patients with Respect and Dignity
Across all discussions, one central theme emerged: patients with disabilities want to be treated with respect. This includes being seen as capable, having their voices heard, and not being reduced to their disability. People with disabilities want healthcare practitioners to acknowledge their individuality, understand their concerns, and give them the space to make decisions about their health.
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 here.
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These sessions provide an opportunity to engage with medical professionals and seasoned legal experts who will address common inquiries about Scleroderma and related topics.