Inspiring healthcare to embrace accessibility will deliver better patient outcomes.
It is vital we consult consumers about their disabilities and about what would make their health experience better.
This must include listening to patients’ stories and understanding both their abilities and limitations.
It’s an important step towards an equitable healthcare system.
When considering whether or not to offer a patient the choice of face-to-face or telehealth, reflect on their ability to access healthcare.
Patients with a disability require a lot more time and planning to meet the needs of everyday life.
People with disabilities face a lot of barriers to equitable healthcare but the biggest barrier is the attitudes and beliefs entrenched in the system.
A small step towards embracing the requirements of people with a disability is a large step in the right direction towards equitable healthcare.
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We want to bring up the word cloud and start to have a look at what disability looks like from our gut feelings.
Challenging, I love that. I’m not going to read them all out but we’re going to each introduce ourselves briefly. Then we’ll get into talking about the main things that we think of when we think about disability and healthcare access.
So I’m Gillian, as I said before. For blind and visually impaired people I am a tall, thin, white woman. I’m wearing a colourful skirt and pink shoes which are my personal favourites. I am a physiotherapist who works in rehabilitation research. My pronouns are she and her, I’m queer and I’m a mum. I think they are all kind of important things about my identity, as well as being disabled.
– Thank you, Gillian. My name is Jean-Frederic Levesque. I would like to say that I look like David Bowie but unfortunately I know my kids would probably say I’m a middle aged man. Also probably a bit nerdy. I wear thick rim glasses and I’m not really tall. Professionally, I’m the Chief Executive of the Agency for Clinical Innovation. I’m a medical doctor by training and my clinical practice was mostly with refugee claimants in Canada, where I’m from. I’ve been in Australia now for eight years, previously leading the Bureau of Health Information. So I do have some professional experience that relates to the topic of the session today.
– Hi guys, I’m Jono. I’m a thin Asian guy. I’m wearing a black Coda shirt and cream pants. My wheelchair is nice and black, but my front wheels if you haven’t noticed actually sparkle. So it’s like those little kids wearing those shoes when they walk and they sparkle. Sometimes in the shopping centres we sort of eyeball each other and have that look, so quite cool. I’m a PGY1 intern at Royal Prince Alfred Hospital. On my medical term at the moment I’m in renal transplant. So, you know, like a super generalistic, easy term to begin with.
Med school wasn’t always that easy. I broke my neck about nine years ago from a trampoline accident. At that time, I was trying to qualify for the national team. I broke C5 and 6. As you know with a spinal cord injury, there’s lots of things that go on and lack of movement is just one thing. There’s spasticity, bowel and bladder dysfunction, autonomic dysfunction. I’m no different, but I’m very glad to be here today with you because it means I don’t have to round with the boss this morning.
– (Gillian) Awesome, and Nas is also part of this panel discussion. So when you’re thinking of questions to put to us on Twitter, include Roger, then you can direct them to any one of us or just in general. So yes, I am sick, I’ve got a peripheral neuropathy, which is autoimmune caused. It’s chronic inflammatory demyelinating polyneuropathy. I also have Ehlers-Danlos syndrome. The disabilities that I have are mostly invisible but there’s motor sensory problems, there’s autonomic dysfunction, bowel and bladder problems. I spend a lot of time having infusions. I’ll get into how my experience in the healthcare system throws up access barriers.
I’m a mum. So in managing all of these things, my word is busy. I’m really really busy. We like to talk about how busy we are because that’s a way of valuing ourselves as productive. My busyness related to healthcare appointments is a massive barrier for me actually having enough time left to work. So what I decided to do with all my free time a little while ago, was do a diary review of nine years of my life. I split up the waking hours, so eight hours in a 24 hour period has gone for sleep. On the screen, is a donut chart. It’s a representation of all of the waking time that’s left. So my health appointments take 15% of my waking time averaged out across a year on a diary review. So that’s a real lot of time.
Then for the chronic condition, self-management stuff that I’m supposed to do to manage my health, anything extra than what anyone would reasonably expect if they didn’t have a chronic illness or a disability, that takes an extra 10% of my time. 30% of my time is in work, if I’m working full time and that leaves 45% of my waking hours to do other stuff. So that’s 3.7 hours a day averaged out across a year. Yes, some of that time might be in surgery, in hospital for three or four days at a time but across the year 3.7 hours per day is needed for me to manage my health care and attend health appointments (including travel).
That’s my experience but that’s actually backed up in other research looking at chronic condition management. You’re nodding furiously, Jono, it takes all of this time to do health management stuff. So just in the last year in 2020, I saved 46 hours in travel because some of my health appointments were offered via Telehealth. So that’s a lot of time where I can earn money and not lose my job from not needing to take time off. That was just the travel hours.
Telehealth is not the solution to everything but every time you’re thinking about “should I offer a person a choice of face-to-face or Telehealth?”, whether or not they look like they’re from a rural place or they look like they’re a person who physically will have more difficulty accessing the service, just offer it to someone if you can. If you’re designing health services, I want you to take home the thought or reflect on the how convenience can actually be an access and inclusion issue.
So if I cannot work within the health system because I’m always at health appointments, then I can’t earn money and we know that not having money leads to worse health outcomes.
Have we got any comments or questions about healthcare system logistics or convenience?
– (Roger) So we haven’t got any questions on convenience as such as yet.
– (Gillian) Then perhaps I might, because you were nodding so furiously Jono, do you want to add anything about logistics of healthcare and the value of our time?
– (Jono) Yeah, I fully reflect on some of those experiences you’ve had in the past. Going to health appointments, actually seeing the doctor is only a minute part of the whole experience. I think as healthcare professionals we only see people when they’re there in front of us. A lot of times you don’t think about the things behind that. So for example, actually taking time off work to get to the appointment, then you might need to drive. They might have to sit in the waiting room and then there’s also going back. So you’re leaving, you’re going to the car park. You’re trying to arrange your day around this whole appointment. So I totally agree. It’s definitely a lot of work and it’s a lot of commitment to look after yourself.
– (Gillian) Yep, and Nas have you had the option given to you about whether or not you should have a Telehealth or a face-to-face appointment?
– (Nas) I have, obviously because of Covid Telehealth’s become more accessible. Recently my GP, when I called to make an appointment said, “oh you know, love, you’ve been here two times this week. Why don’t you just have a phone appointment?” And I was like, “well, I didn’t know I could have a phone appointment.” So you just book it in and it was amazing to be able to do that. I thought, why haven’t I been doing this for 30 years?
Obviously there are some things that you absolutely need to go and see someone face to face but a phone or Telehealth appointment is just so convenient. It means that I don’t have to have the stress of relying on other people to get me there. Either paying a lot of money for taxis, or relying on someone to have the time to take me, or getting public transport.
– (Gillian) We’re hoping that choice and I think you’re going to touch on this a bit later on Jean-Frederic, choice is really important but not just so the person feels like they were listened to. It leads to actual health outcomes and your ability to be employed. I went over and above with going for my access needs. I was in a relationship with the Telehealth manager for my local health district for four years. Even then knowing all the insider stuff that I did, I still had to have these arguments with administrators when they’d say, “well, no Telehealth, isn’t available to you because you only live half an hour from the hospital.” I’m like, “I know it’s available to me. I know how the billing works, I know this.”
Still it always relates back to the trauma. You’re always put in a situation where you’re having to justify what your needs are, when you’re actually only asking for something that exists and is available. It’s an option that you knew you had. I’ve been berated loudly in waiting rooms by people saying, “but you don’t live rurally, that’s not for you.”
– (Nas) I think it’s not only based on your location or where you live. It’s also in the past, I know that people who have invisible disabilities for example, have asked for some accommodations to be made. They almost have to fight to prove that they require that adjustment and often they’re made to feel bad about it. I think that’s something that can often get in the way as well.
– (Jono) I think basically what we’re trying to tell you is that having a disability requires a lot of time. When you’re thinking of planning to do whether it’s appointments, whether it’s procedures that there’s lots of things in the background that you can’t see. I think that’s why when I do talk more about my area, it’s about understanding the lived experience. While not everyone needs to have a lived experience to be an effective clinician, listening to more stories and being involved in that aspect can actually deliver better patient outcomes.
– (Gillian) It’s probably, you’re going to add to this, I realise that we’ve ignored you so far (Jean-Frederic) but Jono, we’ll bring up the word that you’ve thought of as a really important word when thinking about disability.
– (Jono) So when I did this exercise, the word I came up with was actually workforce. This isn’t about having quarrels or anything but actually thinking about people with lived experience or disabilities in the healthcare workforce. We know diversity is such an important part. We know that, for example, having gender diversity improves patient outcomes. You reduce error, you reduce length of stay and it’s been shown that gender diverse workplaces actually have better outcomes. So it’s a no brainer to say that if you have a more diverse workforce, it can be better for everyone. I want to share a story about when I first started that highlights some of the inequities that I faced.
So when you first start out a new term, you have to arrange your med term, your surg term, your ED relief. I went to my general manager and we had a chat on how we are going to arrange the year to be successful? It was a really good conversation and I got home really looking forward to this year. About a week later, I got a phone call from her saying, “there’s a problem.” My first thought was “so you couldn’t roster me for like five orthopaedic terms?” No, with all seriousness, what happened was in arranging my surg term one of the head surgeons there heard about me and basically what he said was no. “He said, no he’s not allowed in theatre as an assist.” Just black and white.
Initially I was a little bit taken back. I was like, “oh yeah, okay, that’s not quite right.” It wasn’t a surprise to me. Maybe he just didn’t understand who I was or what I did. I talked to some of the bosses at North Shore where I was as a student. How do we overcome these problems? Maybe he just didn’t know how I scrubbed or how I assisted?
At North Shore, I helped with caesareans, I assisted, I was holding retractors (the worst thing ever). I helped close. We came up with a few strategies for how to approach it. When I spoke to the bosses there, their first reaction was outrage. They were outraged that this was even an issue. The reason it was an issue, the reason they were outraged is because I went through the same medical training as all of my peers. It was only because I’m in a wheelchair that I had to prove myself. I was a little bit surprised too because I’ve never really thought too much about myself.
It goes to show that maybe because I’m so used to casual discrimination and a lot of people with disabilities are so used to being discriminated against, that it didn’t even register with me. It goes to show that people with disabilities face lots of barriers but the biggest barrier is actually attitudes and beliefs. One of my points I wanted you to take out of my story, is to challenge you that if ever you have a colleague that comes across with a disability, don’t be afraid to ask. Don’t be afraid to know a little bit more because challenging the normal perception of disability is what we need. We need to normalise it and not make assumptions or not assume but actually understand what people’s abilities are and what limitation they may have.
Touching on what Nas was saying, I’m actually quite fortunate because my disability, I stand out, I’m in a wheelchair. People feel sorry for me but a lot of people with disabilities are invisible. So whether it’s a mental health, vision, hearing, whether it’s behavioural, they fight really hard for the support they need. So if we want to look after our patients, we’ve got to first look after ourselves.
– (Nas) If I could add two things to what Jonathan has said. Firstly, people with disability are so used to discrimination. It’s terrible, it’s sad, but it’s fact. We are so used to it. I think there’s nothing casual about it quite frankly, discrimination is discrimination. That’s the first point I’d like to make.
The second is that research overwhelmingly shows that people with disability are just as hardworking, just as productive, take less sick days. Due to the nature of the barriers that we face because of society, because of the environments around us, we are incredibly resourceful and adaptable. So we are constantly thinking of ways to get around whatever it is, whatever attitude you have or poor access to a building. We are constantly innovating and thinking before anyone else is about how we will navigate something.
It shouldn’t be on us to do that but that’s the reality, unfortunately that we’re faced with.
Nas Campanella is the ABC’s Disability Affairs Reporter. Nas is totally blind and lives with a neurological condition called Charcot-Marie-Tooth (CMT) which means she can’t read Braille. After completing a Communications degree at the University of Technology Sydney, majoring in journalism she started with the ABC as a cadet. Nas has worked as a regional reporter in south eastern New South Wales and then as a triple j newsreader for seven years. In taking on this role, Nas became the first blind newsreader in the world to read and operate the studio for herself live to air. In 2020 she was appointed to the senior national Disability Affairs role.
Jonathan Tang is an early career researcher and clinician with a passion in the field of spinal medicine. Recognised for the ability to contribute thought leadership to the translation of research into clinical practice and the development of patient centred care from the perspective of the person with lived experience. He is currently an Intern at Royal Prince Alfred Hospital. In 2012, Jonathan broke his neck at a trampoline accident resulting in an incomplete C5 tetraplegia. Ironically, he was working as a physiotherapist in rehab at the time.
Jean-Frédéric has a Medical Degree, a Masters in Community Health and a Doctorate in Public Health from the Université de Montréal, Canada. He is a Fellow of the Royal College of Physicians of Canada in Preventive Medicine and Public Health. He is a member of the Strategic Analytic Advisory Committee of the Canadian Institute of Health Information and a member of the HealthShare NSW Board.
Gillian Mason (she/her), has gained insight into and lost patience with inflexible healthcare systems, managing the demands of two complex chronic diseases and a 15-year career as a physiotherapist, rehabilitation researcher and science communicator. She was born with the genetic connective tissue disorder Ehler’s Danlos Syndrome and developed Chronic Inflammatory Demyelinating Polyneuropathy a decade ago. She is a consumer representative on the Australian Government’s Medical Services Advisory Committee and Health Technology Assessment Consumer Consultative Committee and a passionate advocate for access and inclusion in healthcare. For the University of Newcastle, at Hunter Medical Research Institute, she manages the Stroke Research Register and provides training and mentorship in the involvement of consumers and the community in research. As a clinical research assistant for the Centre for Rehab Innovations, her focus is on developing solutions for delivering individualised, accessible rehabilitation, supported by telehealth and digital health applications.