See Me. Hear Me. Respect Me. for healthcare staff

Audio transcript

Well, bias, as I understand it, is when you think highly or lowly of somebody, because of like, the preconceived ideas you might have about that person. We all have biases. I have biases. It's an unconscious bias that we have intrinsically in our body, and we have to be aware of that. The challenge is for us to all be aware of the biases, so that we can actually have an open conversation and look past the biases that we all hold.

Unconscious bias in healthcare, I think comes down to making unconscious assumptions about a patient. So I myself have been guilty of this. We are shaped by our experiences and education and whatever else. And so it made me think, geez, like we actually do make a lot of judgements about not only ourselves, but about what people can and can't do.

My judgement is clouded by not being able to see the barriers because I don't experience them. And that's not negative, that's being human. But if you're not prepared to reflect on how that might impact in the way in which you relate to somebody else, that could be different to you, then that's just ignorance.

Not all disability is visible. It could be a neurological thing, could be mental health. Obviously I present as a person with a physical disability, but that may not be obvious when you take away my wheelchair. Disability manifests differently in every single person alive. You can't define it by ticking a box.

Don't judge or try to put people in boxes. Just hear what people have to say. See them for who they are.

Audio transcript

We all are prone to bias in healthcare. We all make assumptions as we go about our day. But I think what we can do is challenge ourselves and challenge our assumptions at each point. I still catch myself making these little judgements sometimes about situations and people. You know, it's almost an everyday activity to try and remove that bias from ourselves.

I think if we remain curious about the patient and we are trying to deliver patient-centred care, we will inevitably challenge those assumptions. And as long as we put the patient first, we will get good outcomes for people. So it's about that open mindedness to learn and understand what another human being is going through.

We need to provide opportunities for them to opt in, to sharing that experience. And asking the question, "I've not experienced this myself. Can you tell me what this is like for you? Is there anything that I can do to make this experience easier for you? Is there anything I can do to support this for you? How can I help?"

Take the time to learn from the person. Learn about what works for them. Look at people's lives, look at what's happening in their lives and treat those things seriously. Just letting someone know that you see them, letting them know that you care. You can make a massive difference in someone's day.

Audio transcript

So often I'll go to a GP or a hospital for treatment, and people will just get really complexed out by my disability. So they're not really seeing me for who I am, for what I am. But if you look beyond the disability, you see the person. And probably that's the best way to see people anyway. Just to see people as people.

I'm a person first. I have interests and passions that I have pursued. See all of me. Not just my disability.

I think in healthcare, sometimes people can be reduced down to their diagnosis. It's easy for a diagnosis to become an identity and actually you can understand it. It's all-consuming sometimes. As a health profession, we're very interested in the conditions people have because it tells a diagnostic story in its own right. Labels neatly fit people into categories, but don't really offer you an opportunity to understand how to relate in a way that's meaningful.

Maybe it's about putting the diagnosis away and actually just looking at the human being behind it. Don't divide the world into those people with a disability, and those without one. I have a lot of things that define me, not just my disability. See me as a whole person, not just Karin, the person that has cerebral palsy.

Audio transcript

Seeing the whole person really means being able to walk in somebody else's shoes. The same condition, disability, disease, diagnosis is experienced very differently by individuals. They have different wants, they have different needs, they have different experiences, they have different families. We're all so different.

Everyone's got their own experiences. Everyone is living a life outside of healthcare. So it's important to try and understand what that is for different people. Being able to see the whole person really does boil down to asking the questions. Be curious to really understand who that person who's coming to see you today is and what they need from you.

If we get to know the human being a little bit, it becomes a bit more real to us. And I think if we are to deliver healthcare, which is a human-centred activity it has to be about the person. The person is more than their disability or more than their health condition. They're a lot more than that. They're my mum, they're my dad, they're someone's sister or brother, someone's husband or wife. Really seeing them for that, makes such a difference.

It's important to get an understanding of the whole person. Because we're all complex individuals and we're all wonderful.

Audio transcript

It's very important for people to have a strong voice with their healthcare. You might be the person with the knowledge, but it's really important to honour the person and know what they bring to the equation and helping to solve their own healthcare issues. They have the long-term knowledge and the history of what they need, and they need to be able to have a strong voice so that they can have their needs and their concerns met.

I'm my own person. I want to be able to have a stronger voice.

I think lived experience is absolutely expertise. Especially when it comes to disability, there's so much in the experience of someone in their day-to-day life. There's so much that happens behind the scenes. So why not use that? I think there is a true connection between lived experience and genuine partnerships with patients. So I think if we can value lived experience, what it's showing a patient is that we are valuing them, and that's the key to delivering proper, efficient, patient-centred care, which gives good outcomes for patients.

You can't argue with lived experience. It is what it is. They are the experts in their own needs, and they're the experts in their own care as well. People with disability can make our own decisions. We have a voice. Listen to us.

They need to be able to have that strong voice. But it's difficult to do. They need help to do it as well. So that's the challenge.

Audio transcript

One of the most important lessons that I've learned in life is that we don't know what we don't know. There's been so much in this journey that I've had after a spinal cord injury that I've learnt. But without that lived experience, I would have had no idea. I don't know what it's like for someone who is blind to live their day to day. I don't know what it's like for someone who's deaf, but I think the knowledge and experience all of those people have are really important to inform the way we do what we do.

The patient's voice is a level of expertise that should sit at the pinnacle of the hierarchy and drive our care. It's about asking questions from the people that we serve, and then we get the bits of knowledge that we need to make the system better.

It can be as simple as saying, what can I do to help you? Because when you're asking someone, you're removing the assumption that you know why they're there. When you're asking somebody, you're asking them, what can I do to help you, in your context?

You really want to know about a person's health and how they're feeling, you've got to actually sit down and have a yarn with them. No one knows your body like you do. We all, whether we've got a disability or not, need to be advocates for our own healthcare.

Audio transcript

I think quite often we get stuck in diagnosis, treatments and we just keep pushing forward that and we forget that that person actually has a choice. It's all about the communications.

People with disability sometimes get talked down to, and acted like they are a baby. They either speak to me in really like simple language because they assume that I can't understand. I want to say what I think instead. I want to be able to have a stronger voice.

So good communication is the foundation of building safety, trust and good outcomes. Being able to provide an environment where the person feels safe and in their vulnerable state, to communicate their needs. So you, as a clinician, need to find and understand a way to ensure that your message has been received. And you may have to do that in multiple different forums. It can be verbal, physical gestures, using supportive tools and aids, translated materials. You might have to repeat it in a different way, you might have to use an interpreter, you might have to provide written material, but the burden is on you to ensure that your information is being received.

Truly understanding a perspective, or understanding the unique communication needs of that person can really influence their experience. And if that unique way of communicating your need is misrepresented even once in a patient's chart, that can really...that label can stick for a really long time.

I think person-centred care. I have at the forefront of my mind every single day. The patient needs to always be the one who asks the questions and the practitioner is always the one who gives the answers. When I talk I want you to listen to me. Take time to explain things to me.

Audio transcript

The best way to explore and understand a patient's method of communication is with the patient. I think there's a whole heap of things that go into good communication. Making eye contact, watching for microexpressions. Understanding that behaviour is also a feature of communication. You pick up on what they're experiencing, and you verbalise that and ask how you can do it differently. How do you best receive information?

Sometimes it's about the right place as well. Do we have the right people around? Would you like me to talk to your parent? Would you like me to talk to you directly? Because some people might rightly feel totally overwhelmed and want you to speak to their support person, and that's their choice, but they need to be given the choice.

I think it's always important. You're much better trying to talk to the person first. Seeing how you go and then involve carers and family if necessary. If it's necessary to involve others, and even using translators, your speech and direction should occur through the patient and directly to them.

I think a key way of trying to understanding if your patient is comprehending what you're saying, is not just saying, do you understand to the patient. Some people would like to please you, are too embarrassed to identify that they don't understand something. And so asking open-ended questions. So we call it the teach back method. I think if we can use it day to day, it can be a really powerful tool.

I often spend a bit of time recapping what we've talked about, and I say, have I got this right? Sure, the patient has to understand, but 'have we understood the patient' is my thing.

We've got some wonderful health professionals who allow her to have her voice and will check in with me along the way. When health professionals work with me, I feel a lot better about myself and what I have to offer. And normally, I get treatment that's even better for what I need.

Audio transcript

Sometimes people will think that we can't do stuff by ourselves, when we can. When people think you've got a disability, you're not taken seriously, in terms of your thoughts. You can be invalidated. I think that's what needs to change.

Sometimes we overvalue the clinical knowledge and sometimes we can devalue the lived experience. You can be a great textbook knowledgeable person, but the way in which you apply that knowledge has to be adapted to the person in front of you.

The clinical experts have the tools in their arsenal, and then the people who are living, with whatever it may be, they know what's needed and they know the problems that they need to solve, and they know the things that they need to optimise. Without that interface, without those conversations, without that understanding, we're not really quite getting the right fit.

So the power of partnership between clinical knowledge and lived experience is...It's beautiful. It can create amazing change, drive amazing outcomes, and really it should be foundational for everything we do. What we're talking about is equal relationships. People from the lived experience have a wealth of information, they have a richness to bring, they need the opportunity to bring those things to people.

I actually do know what I'm talking about. You need to listen to people and trust them to know when something is wrong. Hear the person like ask them how life is for them, how do they feel, how do they react to things. When they turn around and ask me questions and acknowledge us as being almost the expert in this. It means the world to us and it makes us feel like we're a team.

Audio transcript

I think there's still a long way to go in terms of ensuring that, there is equality in voices, and that the needs of all parties are being heard and being met. In the rush of things and in our hastiness to steer things in a certain way, there are probably some bad outcomes that happen.

I think it's really a matter of taking the additional time to build rapport, to understand who they are as a human being, to show compassion. Not just applying expert knowledge onto somebody, but sharing their story and connecting that with the knowledge that you have and checking that that meets that person's need and what they sought from you.

The healthcare outcomes that can come from effective partnerships is life changing. They feel like someone's partnering with them to truly understand what their experience is, and working with them to create an environment where that experience is improved or enhanced.

Recognising the expertise of the family and respecting that expertise is critical to the best possible working relationships in health. The biggest thing is if you don't know, ask. Ask what that disability means for that person, how that disability impacts that person every day, how does that person see themselves, in their disability?

Audio transcript

No two people with a disability are the same. And I think that's one of the greatest challenges. Sometimes you've just got to step into that person's shoes when you're with them in the room, to understand what their needs are at that point in time. We are all diverse. They need to give me choices. You need to be open to that and open to those changes.

We can take that extra step to make sure we're providing good inclusive services for everyone. So being able to be flexible in the care that you provide really does provide people the opportunity to share their needs and have their needs met.

Sometimes patients are just not having their needs met in the current system. So I think it's about changing the way that we practice and that everybody may need some adjustments. And if we offer that to everybody, then we're actually going to be meeting everyone's needs that way.

It's about having conversations and understanding what that person's life is like. Is there a different way that we can do things? There's many ways to achieve an outcome. What ways is going to meet that person's need the best?

It's small changes making that person feel valued. And it can be like a stone rolling down the hill, just picking up momentum. And then that will flow through all their health interactions. It can really have a positive impact on a patient's life and experience.

If we can think a bit differently, and if we tailor that care around a person rather than the system, I think we can get better outcomes. And it's more efficient not just for the health system, but it's efficient for the patient. I'll get more effective and efficient treatment. They'll actually create a really good relationship with me, so I actually won't mind going to see them, which is really important because I might be seeing this person like a hundred times.

Audio transcript

So reasonable adjustments can be overwhelming to people when they first hear about it because all of a sudden we live in quite a rules-based world, and then we have to change rules for people. The procedural approach to healthcare saves lives, particularly in environments where time is of the essence. You know, we still work within a system, we still work within limited resources, and we still serve a whole heap of patients. So not everything is always going to be possible, but sometimes at least having a conversation will allow us to find some middle ground.

The important part is it's reasonable, what we're trying to do. So we don't need to completely change the way that we're doing things. We want to make small changes. And the starting point really is how can we make this better for you? And then working together to do that.

The rules that you can bend to have good outcomes for patients are changing the way that we communicate with them, providing written documentation if that's going to be beneficial. Communicating with carers, including families, including loved ones, calling them ahead of time, giving them time to plan. Just making small changes to how you're practising can have really good outcomes for patients.

So we have to have the courage to ask those questions, and to be brave enough to change the way we do things. So it's flexibility on both sides to meet the needs of the environment that you're constrained by, but the needs of the person.

I'm not going to sugarcoat it. Having disability in our family does make things more challenging. Some days it's pretty tough, but having the healthcare providers, give you that encouragement and support can really lift you up. This is our journey, and it's about having someone walking next to us through it. Or for us, an army walking next to us. Yeah.