My name is Colleen Pearce and I am the Victorian Public Advocate.
This video is part of my work safeguarding the rights and interests of Victorians with a disability.
It has been funded by the Australian Department of Social Services and is designed to improve the way healthcare practitioners
communicate with patients with a disability.
Everyone has the right to play an active role in making decisions about their own health and the support they need to do so
and this includes support from healthcare practitioners.
People with a disability have helped design the content of this video as has the Director of the Centre for Developmental Disability Health Victoria, Dr Jane Tracy.
The centre’s mission is to improve the health and healthcare of people with developmental disabilities through the building and supporting the capacity of mainstream health services.
I hope you find the insights in this video informative and helpful in your work with Victorians with disability.
Generally I feel OK. My GP knows exactly what she's doing.
I feel quite confident.
I get really nervous.
Usually, I enjoy doctor’s clinics because it's an opportunity to just talk.
I felt ok on Zoom, but my next appointment, that's going to be face to face.
I love to talk as Manda knows.
You never shut up!
I don't know that person from a bar of soap and they don't know me from a bar of soap.
I feel I can just say my issues.
I think I'm getting really scared about it.
I often worry about whether I am going to get the standard quality of care that other patients get because I have a physical disability.
If I know the practitioner, I'm not worried, ‘cause I know are they’re good.
But if I have to get somebody new, it's ‘Whoa’.
I can't stand when the doctor directs questions to my carer.
That is so frustrating and demeaning.
“Has this been going on for a very long time with… for Colin?”
“I don't know: why don’t you talk to him and ask him?”
Doctors may speak down to us.
They presume because of what they’ve seen on your medical file and the labels you probably have on them.
I’ve seen people treat disability as if you're a little child.
I’ll tell them that I go to work and they’ll be like: “Really!? You're amazing. Well done!”
I’m like: “Come on, guys. Seriously?” Just because I have a physical disability does not mean to say I’m going to spend the rest of my life sitting around doing absolutely nothing at all.
When they talk really fast, like they are really in a hurry.
They don’t speak my lingo. Like when they speak too high.
So they either treat you like you are a pharmacist and you know exactly what they’re talking about, or they treat you like a dummy.
Always assume competence. Speaking directly to me, not the person I'm with.
Understand that, it's true, we’re disabled but we have a bit of intelligence enough to understand.
What do you mean, a bit of intelligence!? Have got more than that!
Some of us have more.
Maybe assess the person, rather than just read the medical issues.
Treating you like an adult, and not breaking down words like this so they think you understand them.
Not using big medical terminology.
Giving me as much information as possible to be able to make decisions about my own health.
I would say that doctors need to be educated in the sense of disability rights and understanding that we’re human too with patients with disability.
Why? Why can’t I be given the chance and the opportunity the same as anyone else in this community whether they’re disability or not?
Just look at us in the eyes and put yourselves in our experiences.
We're all different. We've all got different issues.
So, just treat us all with a bit of respect. Can't go wrong.
The care of people with disabilities is the same as the general population.
We need to provide people with the same high quality healthcare, the same opportunities to access healthcare and expect the same outcomes of our healthcare.
Communicating well with any patient is very important. It's a foundation of healthcare, having a good rapport, good relationship, good communication with people.
Sometimes doctors who haven't had much experience in working with people with disability can feel a bit uncertain about how to communicate with this person and be a bit scared of making a mistake.
So we need to reduce those barriers and to be more effective in understanding the needs of people with disability in those services.
It's important to review the records of somebody with a disability before they come into the room, so you're up-to-date with what their medical history is and what you need to focus on in that consultation.
It's important not to make assumptions about cognitive capacity based on communication ability.
Somebody with cerebral palsy may have no difficulty understanding us at all, but may have difficulty in expressing themselves.
That's quite different from somebody with a severe intellectual disability who may have a lot of trouble understanding what we're saying and so we need to modify our communication to suit our patients.
Sometimes people will come to a consultation with a support person and then it's really important for me to understand the role of that support person.
Is that person there just for practical assistance, to perhaps drive them to the appointment or does that person have a role to support the history taking that I'm going to be involved with?
I'll always, of course, talk to the patient first. That's the person who's come to see me, that's my patient. That's who I have my professional relationship with.
When they first come into the room, if they are a bit nervous or if I haven't seen them for a while, I'll often try and see something that we can talk about, just small talk to break down that anxiety a little bit.
We're wanting to avoid jargon, we're wanting to use simple language, but not at all childlike, if we're talking to an adult, and we're wanting to ask one question at a time and give people adequate time to answer that question before we move on to the next thought.
Then when it comes to the examination, if somebody is nervous, you might want to start with them just sitting in the chair and just do something simple, like take their pulse, take their blood pressure, things that people are going to expect you to do as the doctor.
Even if they've come in for a sore leg, you can do those things because it's what's expected of you and it can help people feel a bit safer.
People with disabilities, just like anybody else, want to have choice and control in their lives.
And so in decisions around any kind of procedures that we might recommend as doctors, we need to be clear that they are the ones with the choice and we need to offer the choices of what is available, why we're recommending what we are and the implications of following that through or of not following that through.
If somebody does not have the capacity to make their own medical decisions, then we need to still work closely with that person but involve another person who may have that role of medical treatment decision-maker and together, the three of us would work out what are the choices that person would make if they were able to make a decision themselves and then make that decision together.
So the person should always be involved to the maximum extent possible in making decisions that affect their own lives.
It's really important that the doctor and that practice takes responsibility for following up with the person and ensuring that they get the results.
And if they don't come to their appointment, we need once again to follow it up with a phone call,
‘Why didn't that person come and could we ask them to come back?’
Much easier to talk about the results of tests in person and it's much better for us as doctors because we can better assess whether you're understanding what I'm saying in terms of the results and what might need to happen next.
The care of people with disability is just like the general population.
It’s: people want to be valued, to be respected, to have their rights upheld.
So the communication enables the good healthcare and the good healthcare enables good health and good health enables a good life.