Australian Charter of Healthcare Rights 2019 – Live launch

Australian Charter of Healthcare Rights 2019 – Live launch


Hello everybody out there, good afternoon to all of you joining us on the eastern side of the country today and good morning to our friends over in the West. I hope I’m coming through loud and clear wherever you are. Welcome to the launch of the second edition of the Australian charter of healthcare rights. This launch is being live streamed across Australia right now unless of course you’re taping it and watching it later in which case it’s already happened. Either way welcome and I hope that wherever you are the Wi-Fi is fantastic. Before we go any further and by we I mean all of us not just a small number of people gathered here in this room but around the country we would like to acknowledge and pay our respects to the traditional custodians of the land on which we work live and share our stories today. We recognize and deeply value Aboriginal and Torres Strait Islander peoples continuing connection to land water and community. We pay our respects to elder’s past present and emerging for they hold the memories traditions culture and hopes of Aboriginal and Torres Strait Islander peoples across the nation. A better understanding and respect for Aboriginal and Torres Strait Islander cultures develops an enriched appreciation of Australia’s cultural heritage. This can lead us closer to reconciliation which is essential in our maturity as a nation. Thank you and welcome. My name is Luke Escombe. I’m a musician, comedian and patient health advocate and I have the honour of being your host for this event. Earlier today I was asked how I would describe the charter of healthcare rights to a fellow consumer and I said well basically it’s a one-page document that tells you what your rights are in any healthcare setting. Most consumers at this point will say “wait, what we have rights? why didn’t anyone tell us this?” which is a very valid question and one we’ll get to later today, I hope in the panel discussion but yes we really do have rights. I strongly encourage you to read the Charter for yourselves and see what they are, of course, we’re going to be exploring those rights today in discussing what this new edition of the Charter means for both clinicians and patients. Please internet friends if you have a question you’d like to ask us we’re very happy to try and answer it. You can submit questions throughout the livestream by clicking the ‘send a message box’ which I’ve been told is in the right hand corner of your screen I have no idea if this is helpful? We’ll also be uploading an FAQ to the website in the next few days just in case we can’t answer all of them. You can tweet us at ACSQHC and use the hashtag my healthcare rights. Please send us some tweets we like tweets. If you’re watching as a group we’d be very happy if you’d let us know where in the country you’re joining us from today and how many of you are there. Maybe I’ll give a shout out to you like the pirate radio DJs I used to listen to London in my teens. “Shout out to the Mullumbimby massive” That kind of thing. We’d love to know who’s out there there’ll also be a survey sent to those of you who have registered to get your feedback which we’d really appreciate you taking the time to answer and send back to us once. Again hello everybody my name is Luke Escombe and when I was a little boy growing up in London I dreamed of becoming a rock star. This wasn’t just an idle fancy of mine there was a good reason for it. My dad worked behind the scenes of the rock and roll industry and so thanks to him I was able to incredible performers like Bruce Springsteen, Prince and Freddie Mercury live on stage when I was just a boy. I was even at the original Live Aid concert in London in 1985 which showed me that rock and roll wasn’t just about strutting around in tight trousers, singing the word baby. I’m looking at the Auslan interpreter while I say that. It could also save lives. To me rock and roll was a positive force for good. And in that regard, I think this charter we are launching today is in its own humble quiet way as rock and roll as Angus Young’s school uniform or the lyrics to Blue Suede Shoes. This is an exciting and groundbreaking document that marks another clear step in the journey towards a more inclusive, more collaborative, more open, more humane, more successful way of delivering health care in the 21st century. The reason this is so important to me is that I had first-hand experience of what the old model of health care was like. I was diagnosed with Crohn’s disease at the age of 14 while still living in London. It took me six weeks to get diagnosed and there were a few reasons it took this long. The first was that I was attending a very formal, religion heavy, all-boys school where the kind of open dialogue between pupils and teachers that we’ve begun to value in education today simply didn’t exist. It was made very clear to us boys that the Masters, as our teachers called themselves, were these vaunted authority figures who are not to be questioned by the likes of us. Our job was to listen and obey and be silent as much as possible. They called us only by our surnames to convey to us that we were not really individuals in our own right so much as products of our parents and our background. And we in turn called them sir thereby creating a culture in which neither of us were really individual. We were simply representations – they were representations of authority and we were representations of obedience and submission to that authority and as I was to discover we did health care in England much the same way. And this authoritarian model which I admit might be very good for instilling qualities like obedience and upholding certain traditions that would otherwise have fallen over a long time ago by themselves was not at all good for creating the kind of open safe environment where a 14-year old boy might have found the courage to tell his teachers that he was visiting the toilet a lot more than usual or that he was finding it painful to sit down on the hard wooden benches of the science lab. That the pain was not going away and that he was becoming more and more anxious. So I didn’t say anything for two weeks. I was even too anxious to tell my mum about my symptoms but she could see I was losing weight so she can be home for another week and then when things still weren’t improving we went to see our local GP. Possibly the only detail I’ll need to give you about this man for you to make a fairly accurate assessment of his character was the fact that he was famed around Wimbledon village where I grew up for driving a black Porsche with the vanity license plate DR1 number one doctor. In other words this was not a man who had got a medical degree in order to go and vaccinate children in a refugee camp in Africa. This bloke was in it for the cash and he wanted the rest of Wimbledon to know about it. And of course it goes without saying he was a terrible, useless doctor it was hard for me to even describe my symptoms to him. I was embarrassed and afraid. He didn’t say a word to reassure me or even to give me the sense that he was particularly paying attention. Instead it was more of a bored “all right then let’s examine you” sent my Mum out of the room, examined me incredibly roughly like he was in a hurry to get back in his Porsche and get to the golf course, completely missed the fact that I had an abscess the size of a squash ball in my bottom and essentially told mum I was faking my symptoms to get out of school. This was the head doctor at our local practice DR One. Looking back I think he was more like a number two. So it took another two weeks for me to get to hospital this time through emergency to get the abscess drained and it was while I was there after a further week of tests that I was finally diagnosed with Crohn’s disease. Right away I was put on a high dose of steroids which gave me hamster cheeks and acne. I stopped being cast in the school plays, I was dropped from the sports teams and for the last three years of high school my only friend in the world was my guitar. But my Crohn’s went into remission about six months after I left hospital so from a medical point of view, at least from that eras medical point of view, my treatment was a complete success. I was in remission but I was also in a state of depression that lasted for the next 15 years of my life. So I think more could have been done for fourteen-year-old Luke. More effort could have been made in the empathy department. But I don’t harbour any real resentment about it because the awareness simply wasn’t there at that time of what patients like me needed or of what a patient-centered healthcare system could look like. Back then all the decisions as to what was best for the patient, what the patient needed, what was important to the patient, what the patient should be experiencing, how the patient should respond to treatment, what the patient should want for themselves, all these decisions were left not to the patient but to the doctor to determine which sounds absolutely absurd when you put it like that but that’s how we did it. And of course we did school the same way. We left the decision as to what the child needed, what the child should know, how the child should behave and respond, how they should learn, what they should want, not to the child but the teachers. It was a great system as long as you were the one in charge of it or the one benefiting from it. For everyone else there was room for improvement. And documents like this one that we’re launching today are a big part of that improvement. This charter we’re launching is the expression of a vision of a new kind of health care culture for the 21st century. Let’s look at a few of the ideas on it. The right to access healthcare services and treatments that meet your needs. Your needs as an individual, not somebody else’s. The right to be cared for in an environment that is safe and makes you feel safe. That’s one of the great ironies of hospitals, isn’t it? One of the things you most need to get better is rest and yet hospitals seem to do everything they can to stop you getting it. Just as you’re drifting off around 10:00 p.m. all these bright and breezy nocturnal nurses come on who are just starting their working day. “All right team let’s go heal the sick. I’m gonna stick a thermometer in this guy’s ear and then trip over his catheter”. Then it’s 6:00 a.m. just as you’re finally catching some Zed’s the morning crew come back. Ping! Curtains open “wake up sleepyheads here’s some powdered eggs and cornflakes. Was that your catheter? I’m sorry” One of the key ideas in this new Charter which sets it apart from the first edition is the idea that healthcare is a partnership between consumers and clinicians. We have a right to ask questions and be involved in decisions which affect us as well as a right to receive clear information about tests and treatments. This reminds me of the 11 nights I spent in hospital in 2009 where every morning two nurses would wheel a trolley in and drain thirteen vials of blood out of my arm with no explanation whatsoever. I don’t know where they took it or who they were doing it for but after 10 days of this they came and told me I was low on blood and needed to have a transfusion. They hooked me up to a big bag of blood and I looked at it and thought is that mine? Another essential right contained in this Charter which carries over from the previous edition is the right to be treated with dignity and respect. If you’ve ever been in a room full of patient advocates telling stories about their hospital experiences the number one thing you’ll hear the ultimate uniting factor in all our formative bad experiences is the bitter remembrance of a moment where our dignity was thrown out of the window. For instance, on about the 4th day of my 11 day hospital stay I struck up a rapport with a young Irish nurse. I told her I was a musician and she said “Really but your so intelligent?” I said “What’d you mean by that?” She said “Well most musicians I meet just lie around taking drugs all day.” I said “Yeah but you’re a nurse, everyone you meet just lies around taking drugs all day. That’s what goes on in the hospital.” Then she gave me an enema so it’s fair to say I wasn’t brimming with feelings of dignity and respect after that. I found out later that this enema could just as easily have been administered after I’d been sedated for the colonoscopy it was just a matter of convenience to do it while I was lying there fully awake in a room I was sharing with three complete strangers with only a thin curtain for privacy. And of course when I say convenience I obviously don’t mean my convenience. So there’s a right to be treated with dignity and respect. There’s a right to safety and a safe environment. A right to ask questions and participate in decisions. A right to clear information delivered in a way that recognises your culture, identity, beliefs and choices. There’s a right to privacy a right to receive and access information that is relevant or that pertains to you and to be informed in a timely fashion if something has gone wrong with your treatment and to ask questions to understand how and why that has happened. What does this mean for us as patients? It means speaking up, asking questions not just nodding our heads and pretending we understand but taking the time to make sure that we are involved in the decision-making process. Ours is not a passive role anymore. We are not just patients waiting around patiently for someone to tell us what to do. We are active participants in our care. A lot of people don’t like the word consumer. I know. I don’t particularly like having Luke Escombe Consumer written on my nametag at conferences. It makes me sound so materialistic but it’s a useful way of reminding ourselves that we are the ones making the choices. It’s our name on the scripts and consent forms, it’s our name on the Medicare card. That’s the other important dimension of this charter of healthcare rights. As we accept our rights, we also need to accept our responsibilities and that’s what makes this a document that clinicians and nurses and hospital staff can be excited about too because not only will it make your jobs easier having patients who are actively listening and asking questions and working with you on finding the best way forward, it will also make your work more enjoyable, more stimulating, more challenging at times, no doubt, but as a result more rewarding and ultimately more successful. I think and I hope, that politicians and economists will be excited about this charter too. Because once you awaken patients to the idea that we are in fact consumers with rights and choices and access to information then we are going to start holding ourselves more accountable for the choices we make. Well that’s certainly what happened to me after I began internalise the consumer mentality. I started to think about all of the money I had spent over the years on medications and treatments for my illness. All the GP visits and specialist clinics, all the pills lozenges, tablets, capsules, multivitamins, calcium supplements, blood tests, urine tests, stool sample analysis kits, iron infusions, laxatives, enemas, colonoscopies, MRIs, x-rays, CT scans, antibiotics, painkillers, sleeping tablets, Chinese herbs, aloe vera, spirulina, glutamine, intestamine, marijuana, colloidal silver, massage, acupuncture, physio, Chiro, hospital parking fees and the endless kilometers of toilet paper and hit me my god I’m not just a consumer I’m an addict! How could I have spent all this money and still be sick? It was a few months after that spurred on by the fact that my wife had just told me she was pregnant that I finally took the advice of my gastro team, my health care partners, who I realise had been trying to get me to take a more active role in my own treatment for many years and had an ileostomy. And I’m happy to say I haven’t required any treatment for my Crohn’s since. That was seven years ago and they’ve been the best seven years of my life. Nowadays I’m a veteran of hospital stays, consumer committees and health conferences. I know how to stand up for my rights in hospital but there are a lot of people who don’t have the advantages I have. There are a lot of vulnerable people in our health system. They’re vulnerable already even before they end up in that hospital bed or aged care facility. They struggle with English, they struggle with anxiety and mistrust of doctors, they struggle with pain and mental illness, they’ve experienced trauma and abuse. They understand the world in a different way to the people who are treating them. They’re very old or very young or very alone. It is vital that this Charter is made accessible to those people and that they are made aware of their rights in a way that they can understand, whether it’s part of a pre-admission clinic or initial consultation or induction or from a patient advocate or volunteer or a friend or family member or social worker or carer. Because knowing your rights in hospital is a way of feeling powerful even when you’re at your most vulnerable. So please, I say this to clinicians particularly, don’t tiptoe around these rights make them clear to your patients. The more you do to minimize the power imbalance between you and them, the more you’ll be able to help them. And to all those people who complain about entitlement. “These Millennials and they’re smashed avocados, why can’t they just go and fight the Second World War like what we did? So entitled!” Ot to those of you who’d rather not say anything even when things are going drastically wrong because you don’t want to make a fuss, please understand you are entitled to these rights. You are entitled to respect and dignity and safe quality care. It’s not making a fuss to stand up for your rights as a human being. Whenever you don’t you make it harder for the next person to stand up for theirs. I know you don’t want to be a you-know-what about it but that’s why this Charter exists. You don’t need to be a you-know-what about it (what’s the sign language for that? hedging your bets). You don’t need to be a you-know-what about it when you’re in the right and you have a document that backs you up. So please let’s embrace these rights to which we are all entitled. Many courageous advocates have fought hard for us over many years so we can have them. And when I say us I don’t mean some chronically ill subset of society I mean all of us. Because we are all consumers of this health care system even the clinicians and politicians. One day it will be you or someone you love in that hospital bed and you’ll appreciate knowing that these rights exist. These are not privileges these are not things you get access to once you reach a certain tax bracket or drive a certain car or live in a certain postcode, these are simple basic rights. So simple, in fact, that they fit on a single sheet of paper. Here they are. Please read them, remember them, share them, tell people about them, keep telling people about them, stand up for them. You never know when you or someone you care deeply about may need them. Thank you. Well thank you so much for listening to my opening rave, ladies and gentlemen. I would now like to invite Professor Villis Marshall AM to speak with us. Professor Marshall is a chair of the Commission’s board and brings a wealth of experience in providing health care services, managing public hospitals and improving safety and quality. He has had significant clinical experience as a urologist and as Clinical Director for the Royal Adelaide Hospital and clinical Professor of Surgery at the University of Adelaide. Professor Marshall was awarded a Companion of the Order of Australia AC in 2006 and is a strong, passionate advocate for person-centered care in Australia. Wherever you are in the country, please make him welcome. Professor Villis Marshall.Thank you very much Luke and also thank you for your opening because if anyone now is prepared to listen to me it will sound a lot less exciting and terrifying than the experiences you described but I think it really does highlight from what you’ve said how important the Charter will be and how important it is that each and every one of us takes notice of it whether we be a patient, whether we be a health professional or whether we know someone who is in the need of health care because this is something I think if it does what we hope it will do well as Luke has alluded to potentially change the landscape of a healthcare system which is already good but I think we all agree can be better and particularly with an ageing population we do need to make sure that everyone is heard because it’s our body, it’s our life and so it’s something that we all need to be able to feel we can talk about and be listened to. And so it’s ten years since the first of these charters was produced and I might say to many of you did you know there was one? Because I think for many people in the country they would have had no idea that there was a Charter of Rights for patients in healthcare so that’s one of our challenges we have to get this charter out there in the open so that people fully understand what they can expect because I’d have to say and I think probably Luke would agree with me that first charter was there but no one seemed to indicate that it existed and perhaps that was because of Dr One he didn’t want anyone to know about it but this is important. The other thing, of course, is that these rights apply to all places where healthcare is delivered. Whether it be in a public or a private hospital, whether it be in a GPS rooms, whether it’s in a specialist rooms, whether it’s allied health providers, whether it’s public dental services, day procedure facilities and community health care centres. It’s everywhere just in one spot, not just in one doctor’s room, not just in one hospital, it’s across the entire system of health care. Now there’s a growing body of evidence as Luke’s alluded to that patient-centered care is safer care. Now centered care sort of rolls off the tongue very nicely. What are we really mean by it? Well what we really mean by it, if push comes to shove is please listen to the patient. That’s what it’s all about. That’s what is person-centred care. It’s a partnership. Listen to the patient and you find out things that you actually never knew. Once you knew some of these things it may alter the way in which you provide care for that individual. The other thing is is a very important nuance in the second version. The first charter stated that patients may join in other words may what a weak word. It was a privilege that someone might let you have to actually join in those discussions. You were second class in that relationship because you may only be heard but if someone didn’t want you to be heard then you weren’t. Well now this charter moves a long way down that path. It empowers the individual to take an active role in their health care. It empowers you to ask questions, to be a partner in the decisions about your care. Now that’s not unreasonable at all because most of us with families or friends we actually talk amongst ourselves and together we might make decisions to do something so it’s a partnership and you get the information that you need because you can’t make good judgments about your life or your health care unless you get good information. If you go to a financial advisor and you see them being advertised all over television they tell you they’ll give you just the right to advise so that you’ll be able to save hundreds of thousands of dollars. Now whether that so or not I’m not sure at this stage but what you’re trying what we are saying is that you need to get the right advice so that you can make the informed decisions about your care. And the other thing is that what is important to you is also important to the people who are your relations so they need, often at your decision or discretion, to be involved in this whole process. You can’t make decisions unless you receive clear information and the risks of your treatment because often now with modern medicine the risks and the benefits are often very closely aligned particularly for example in chemotherapy which we know lots of side effects so before you make a decision you need to have this carefully and at length explain to you the benefits and the risk. And the other thing, of course, you need to know about how long it’s going to take and what the costs are going to be because often the costs at times in the private health sector are quite enormous and you need to know about this before you can to agree to a particular treatment and you also need to be able to access your own data because often people couldn’t access their own data no one knew that they said for goodness sake don’t treat this individual they’re always complaining about something. Now obviously we are entitled as part of the Charter to access your own data. The other thing is that in medicine something will go wrong unfortunately. When you’re treating thousands and thousands of individuals throughout the country, errors will be made. We know that happens we’d love to avoid it but it won’t. However the important thing is that if an error is made you inform the individual that the error is there and that you explain why it happened, what you’re going to do as a result of it and how you’ll try to prevent it. Because most patients are very happy to understand that you have recognised that there’s an error and you are going to try and prevent that from occurring to someone else so it becomes important to them to feel that they are involved in that whole process. The other thing, of course, is that the hospitals themselves as part of the National Safety and Quality Standards are assessed against this Charter and so you can certainly expect the hospitals to be well aware if you go to any of our public or private hospitals about this charter. So the event like this is so important to raise awareness because as Luke has said everyone in Australia needs to know their health care rights and to feel that they can do something about managing their own health care partnership with their medical practitioners and also it’s also important for the doctor to know about all of the problems because sometimes people will decide on a particular course because of social reasons or because of financial reasons and once that becomes clear they can work with the doctor to look at what may be a much different and better outcome. Obviously there’s going to be a lot of information that we need to provide to the community and so a whole series of resources are being produced and they will be going forth and they’re going to be in 19 languages and we will continue to confer with the community to work out how we can actually improve these resources being available to them and understanding them. As you can see they are simple but nevertheless if English, for example, is not your first language the nuances of some of these things may be quite different. So, I think over the next 12 months we will continue to produce new information as we get feedback and so we hope that it will be easier and easier for people to understand what their rights are and how they deal with it. We have however come a long way when I first started in medicine we wouldn’t tell people that they had cancer because we thought that would upset them too much so we were really quite crazy. We told their relatives that they were dying of cancer, the only person that didn’t that didn’t know they were dying of cancer with the patient’s themselves. And I always remember quite vividly as an intern one of our senior surgeons he was an excellent surgeon would come up to patients lying in their bed and say “My dear, we’ll cut it out for you tomorrow”. Whatever the ‘it’, was heaven only knows, nor did the patient seem to answer. They just accepted we would cut it out and that was that. But it’s important to realise that we have moved on. This Charter attempts to bridge the gap that exists between what health care providers deliver and what the community expects. And it really is a partnership rather than the headmaster punishing the small boy. So thank you for listening. Thank you very much, Luke, because I think that was a wonderful opening as far as that’s concerned and so we now move on to the era. Thank you so much Professor Marshall, Villis, for all of your work on this Charter and for recognising the importance of these rights and for speaking so clearly and eloquently about why the Charter is so important and why we need to spread the word about it and I do hope that all of you watching and listening to this out there will help us get the word out there that this Charter and these rights exist. It was quite mind-blowing to me as I’m sure it was to many of you here to hear that that was the old practice that if someone had cancer and was dying it was decided it was best not to tell them and, of course, a lot of these doctors and surgeons were wonderfully skilled people and wonderful human beings but they were working in a culture that was kind of crazy when you think about it now by what we value today in health care. So I’d now like to introduce you to some people who’ll be giving us a deeper understanding of how this Charter will affect both consumers and health care providers. I’ll introduce them very briefly Melissa Fox, Chief Executive Officer at Health Consumers Queensland. Next to her Grant Davies, Health and Community Services Complaints Commissioner, South Australia. I want to say by the way that we didn’t send a memo around about what we were going to wear we just happen to be matching perfectly because of just a natural stylistic inclination. Next to Grant, Veronica Casey, Executive Director of Princess Alexandra Hospital and Amanda Walker, Clinical Director of the Australian Commission for Safety and Quality in Health Care. I’ve noticed that sometimes it’s easier to say the whole thing than attempt the abbreviation but that is ACSQHC so let’s make them welcome where there are people in this room. Make a little bit of noise. I’m going to sidle down here now. Hello everybody. I’d now like to invite each of you to take the handheld mic and briefly introduce yourselves and tell us how the Charter relates to your work so let’s go down the line. Melissa, we’ll start with you. Thanks, Luke. So with a long background as a maternity consumer advocate, my passion for the power of consumer partnerships with health services and government came from my strong belief in the rights to access, to the choice for models of care and informed decision-making for those accessing maternity services, all of which are enshrined in the Charter in the past and the now revised. So now I’m CEO of Health Consumers Queensland, our state peak consumer organisation. I’m also a vice-president of the Queensland AIDS Council and I am privileged to be the chair of the Partnering with Consumers committee here at the Commission. So the Charter underpins everything and supports everything that Health Consumers Queensland, that our equivalent organisations that exists in almost every state and territory around the country and at a national level, and also our incredible rockstar consumer advocates and our networks, do. And we use it in a number of ways. So firstly in advocating for a meaningful place at the table for consumers in the planning, design, delivery, monitoring and evaluation of health services, when advising consumers who contact us, when care is not meeting their needs or the needs of their loved ones, that they have rights and how to go about seeking to get the care that they need. And we also use it in our training our consumer engagement training for staff and consumers. We refer to it as one of the key drivers for consumer engagement along with the Commission’s National Safety and Quality Health Service Standards, Standard 2 – Partnering with Consumers and we say that it sets out the expectations of what consumers should receive and what health services should offer. We also suggest to consumers that when they’re sitting on committees as consumer representatives they can use it like a framework or a checklist when they’re evaluating the consumer consumer centeredness of a policy or a service model. So is that service model or policy going to meet access needs? Is it going to provide care that is safe and feel safe to consumers? Does it provide the opportunity for respectful care? For the time to ask questions and to be listened to and make informed decisions? And so on. Thanks, Luke. I’m one of a number of Commissioners across the country who receive complaints about health care and we manage those complaints in a number of ways including mediating those complaints and investigating those complaints. We use the Charter as the minimum standards required for safe and appropriate care and when we receive complaints we cross-check against those charter rights to ensure that people have their complaints addressed and we also use it as a way of pointing out to service providers where they might have fallen a little bit short. Not in a punitive way but to educate and to ensure that moving forward people know what to expect and know what their obligations are in health care. Good afternoon everyone, my name is Veronica Casey. I’m the Executive Director of Nursing and Midwifery at Metro South Health but I work at Princess Alexandra Hospital and I’ve just been recently appointed to the Board of Australian Commission on Safety and Quality in Health Care which is a great honour. I’m delighted to be here today. I think the second edition of the Australian Charter of Healthcare Rights is such an important milestone. I think that I obviously have been in health care a very long time working in many different sectors including primary health to the acute tertiary hospitals and everything in between. For me the launch of this next edition, the second edition, really takes patient-centred care to a new level. I believe that my excitement about this, and I think it’s been a long time coming, is to really look at what we mean by patient-centered care. I think everyone has who works in health we have a desire to focus on our patients and a different eras and stages of my working life and my profession, we’ve seen what is the standard. I think it’s been a long time coming to make sure that a true and authentic partnership model and that people are not only treated in a holistic and human-focused way but are true and authentic partners in how we progress with care delivery, how we plan services, how we embrace people’s knowledge and skills that can actually help continuously improve, not only the system we work in but individual care and attention, and for me it’s a very very exciting time. The other thing is, I think, it has been already said these these rights are actually the cornerstone even of the new second edition standards. These are fundamental rights and I think that the strength of improving quality and safety really, you know, you if you don’t have these as the cornerstone they should underpin everything else we do so I’m just delighted to be here today. Thank you. My name is Amanda Walker and I’m a part-time palliative care doctor and I work part-time here at the Commission as a Clinical Director which basically means I’m working to support safety and quality and provide clinical advice here. So to me the Charter describes what good care looks and feels like. And care is better and safer when these rights are respected and exercised, when information and care is tailored to the individual and that individual that individual feels safe to ask questions and share their priorities. And when services learn from feedback, not only does that patient better care but future patients can as well and so the best care can keep on getting better because of that input. So I think it’s really important that people know what good care looks and feels like and they know that they can stand up and speak up for themselves, or for their loved ones, if they’re not getting good care. Thank you so much to all of you for those intros. It’s clear listening to you that this charter is going to interact with the health variety of ways. I’m actually a really starting to understand why you need a word like patient- centred because the health system is so complex and people are working from so many different angles, that we need a centre. I like this idea that the patient is at the centre and that underpinning this new culture we have a document, we have this document that fits on one page and as you say, Veronica, these are fundamental rights. We would recognise most of these as basic human rights I think. I wanted to talk first of all about how this will affect consumers. Melissa, I wanted to ask you, why is it important that the consumer knows that they have rights? Sure, well I just came up with a joke that I think that you have all like. So consumers just want to have fun-de- mental rights but I really loved what you said that this is really about helping consumers feel powerful at a time that we feel most vulnerable and we know that journeying through the health system is stressful. You know we sometimes might not know what’s going on, we’ve got financial stresses, we’re concerned about our loved ones and the impact of our journey on them, but all too often that stress is added to in ways that are not necessary so through people feeling disempowered, through not being a part of the decision-making, through not being afforded their respect and the dignity that they deserve so this is a tool that can help right that power imbalance that exists in the system because of differing levels of knowledge that clinician-consumer power imbalance and go a long way to recognising our expertise in our own lives. We are the experts in our own lives and the important role that we have to play in in making decisions that are right for us. And it’s not it’s not just how consumers use to charter that’s important or how we will use the charter but it’s also very very important how staff respond when we refer to our rights and try and have the Charter upheld. There’s a large body of work that needs to continue to occur with educating staff to be able to have those conversations. Well that’s a very good question and can I ask Veronica about that? About how the Charter will impact healthcare staff and why it’s important for them to know about these things? Thank you. Look the seven standards, really, and fundamental rights are critical for the staff to know and I think inherently people would like to think they have that sort of embedded in their culture and their values. What this Charter does now, I think, takes that level of understanding how it looks, how it should be applied and that it is a shared, you know, it is truly shared. I think there’s a lot of education to be done. The explanations and the material that sits behind this is going to be so important to, not only educate, but actually understand that experience and the outcomes that come from that experience and the benefits. I see that this will take a little bit of work in some instances. I think some other organisations and people and individuals will champion this but I think for me I go back to that true authentic respectful partnership if that is part of the value set and from the governance to the individual practitioner, the culture will be one that people seek for that partnership, they will respect it and when something may not be quite as accurate or happen that’s desired that feedback will be welcomed, appreciated and acted upon and checked in upon with our partners and our consumers and our patients. I do believe there is a lot of work I have no doubt about that but I do believe that this will be critical to actually achieving it, not just through education but living it role modelling and the governance structures to embed it in a value set. I think it’s also about creating the conditions for staff to be able to do this so we know that staff themselves are stressed and overworked and quite often don’t have the time to have these conversations that’s about changing the way that our system is structured to enable that and also to engage with clinicians and make sure that they’re helping to shape the system too. Yeah I mean, I think you mentioned the word stressed a couple of times there. In hospital situations normally you’ve got patients who are stressed and worried and nurses who are overworked and stressed and hopefully this charter will actually make everyone feel a bit more relaxed that there isn’t that power imbalance and that we’re on an equal footing and we can get towards that partnership. Amanda, I wanted to ask you about your clinical work and why the Charter and these rights are important to that? There’s kind of two answers to that question. So I work in palliative care which means that I’m looking after people who’ve already been dealt the worst possible hand of cards and they’re dealing with the fact that time is short and my job is to make the remaining months and, you know, weeks, months, years as good as they can possibly be. And that means, you know, what’s important to them and finding out from them how they want to spend that time. People are really different, everybody’s an individual and I could give everybody what my best last months would look like but that may not be what they’re interested in and so actually exercising these right and understanding where people are coming from and letting them share what’s what’s a priority for them is really important to my day to day work in palliative care. Do you find the rights actually shape your approach? Yeah absolutely but on another level, another way to answer that question is to think through the number of times I have been saved from making a serious mistake by a patient or a family member sticking their hand up and saying “but I was just wondering about…” or “what about?” or “have you considered…” you know and the number of times that those quiet little comments where someone’s had to kind of pull themselves together and push a little bit harder to say something and it’s, you know ,raised a red flag that’s made me realise all there’s more to this than I realised and dig deeper to get to the bottom of it and so I’m so grateful to those patients who’ve actually done that and had the courage to actually stand up and speak up for themselves because they’ve stopped me from making serious mistakes. That’s so good to hear, isn’t it? I mean I think that’s an important thing to hear is that the questions really help both of us you know anything about any doubts you can speak to let us know. There’s no stupid questions in that scenario. And from another perspective, one of the big problems in medicine that we’re dealing with at the moment is a problem called diagnostic error which is where doctors make the wrong diagnosis and where they get them wrong. And one of the challenging things is that often the patient is saying to themselves “this didn’t quite feel right. That label didn’t fit what I’m feeling” and they actually knew in their guts that something wasn’t working for them. That the label that they’ve been given didn’t fit them but if you don’t feel comfortable to stand up for yourself and say but “what about?” then you go through your whole medical illness with the wrong label and in the wrong treatment and all of the flow on from that very basic problem so speaking up for yourself can make a really big difference in that context as well. Yes, thank you so much. Grant, I can see you’re wanting to take the microphone. Thanks, Luke, this just underpins what we see in complaints bodies all the time. Communication underpins pretty much all of the complaints that we see. You’re not going to be able to determine what people need in their healthcare engagement without talking to them, without communicating with them, without understanding what’s important to them and what their values are so I’m convinced that if people communicated better, understood what values people brought, what mattered to people and managing their healthcare, we’d see vastly fewer complaints. Grant, I wanted to carry on getting your thoughts on this then who should consumers actually talk to if they have a concern that their rights are not being upheld? I mean presumably they might be anxious to talk to their doctor if they feel that the doctor is not respecting their right so where can they go? Yeah, that’s a great question, Luke. Ideally, what we would encourage people to do is to talk to their clinical team. We know that the further away from the actual incident a complaint goes, the more difficult it is to resolve. So try and talk to the clinical team. If that doesn’t work, most health services have some sort of complaints mechanism, consumer liaison, patient liaison, staff that are not involved in their clinical care but can take complaints but if that doesn’t work then there are bodies like mine, health Complaints Commissions that can take complaints and deal with things independently and help restore that relationship between the consumer and the service provider or investigate the matter if it’s really serious. Well, let’s talk about that how consumers can actively use the Charter. Melissa, I wanted to ask you how can we as consumers use this Charter here to advocate for themselves or, in fact, for other people. I imagine a lot of cases there might be someone who’s in the hospital bed that has no power or no agency to speak for themselves and it’s a family member or a carer that needs to know that this Charter exists and use it That’s what keeps me awake at night – the people who don’t have someone advocating for them whether they’re young or old and I think that’s a huge gap in our system and a huge gap in services. Individual advocates who can walk alongside people as they’re receiving care but also walk alongside them when they’re trying to navigate the complaints system – that’s that’s a huge need. But in terms of how they can use the Charter again it’s using it as that tool we’re very very explicitly these are the rights that we can expect to have upheld and to go with that sense of confidence and that expectation that our concerns will be remedied. We do know that people do have challenges in experiencing that successfully. Our complaint system is something that we need to continuously improve but hopefully the Charter is another driver to ensure that that happens. And certainly the more we create awareness about the Charter, we will improve that process. Veronica, what do you do as a clinician to support consumers in upholding their rights? I think that, again, it can be variable. You’d want a system that would really focus on the individual that each individual feels that are personally being navigated through that when an issue happens and hopefully you don’t get to an issue, if you use true partnership, it should be able to resolve or be clarified but I think just on a comment Melissa made is that if you actually have the elements of the Charter not only underpinning your complaint system so that’s one element and that’s when it gets to the complaint system but if you actually use it as that fundamental base of the values and you take your clinical staff and in this instance often nurses are or other health professionals there one would have to think and I see this as very positive that people would actually share and go through this charter and and really walk people through to say that there isn’t a power imbalance that we need to walk this journey together and I, like Melissa, do worry about people that don’t have strong support systems or they may feel they don’t or they might feel vulnerable in that they won’t get as good a care and I think this Charter provides the clarity now to say no, I can actually not only work with other entities and groups that can support me and family but our health professionals understand this and this is absolute. I keep going back to that fundamental right that we should all be able to share and so I would say that for clinicians as we gain understanding, and what that looks like, feels like, in practice that should actually close that gap. Thank You, Amanda wants to take the mic there. Can I just share an example I saw this actually play out? Yes Please. Because I can just remember very clearly walking into a room once and detecting tension in the air and there’s a mum in bed, not very well, with a number of medical problems and her daughter by the side of the bed and as I walk in I could see the daughter thrusting something and waving it around in the mum’s face and the mum was kind of “but I don’t want to be a trouble. I don’t want to be a burden” and the daughter kind of saying “no, no, it’s okay, Mum. See it says it here” and she had what in New South Wales is the brochure about the patient’s rights and responsibilities and she literally pointed to the bit where you can say if something’s not working for you and you can actually ask questions and so she said “Tell the doctor, Mum. Tell the doctor” and it turns out that what she told me about you know the team were already addressing two of her big problems but she had a third and the third was the one that was actually going to kill her if we didn’t do something about it urgently and so the daughter actually waving this pamphlet in mums face and saying “See right here, it says you can ask questions” meant that that mother’s life was saved because of the Healthcare Charter. Thank you so much for that but what do you think is the right way, Grant, I might to direct this question to you but I think this is something I’d be interested in all of you addressing, is when is the right time what is the right way for a patient to be made aware of the Charter? Right from the start even before they’ve sort of entered the health service they, you know, if they haven’t been made aware of it before they get admitted it’s that kind of process then on admission and not just here’s a pack let’s, you know, have a read of it when you’re ready. Someone actually going through it and saying these are your rights, you are able to do these things and you’re able to expect these things. And what about those people who come in through emergency who maybe in and out of consciousness who are the most vulnerable but, you know, not really in a position to understand. What is the best way to make sure that they have access to their rights? I think it to be and I’m you know realise the Commission doesn’t have a huge marketing budget and but imagine how fantastic it would be if there was a great community campaign where it was on buses and you know bus shelters and in newspapers and and lots of social media, so that people find out about it when they’re not unwell and and not trying to you know absorb so much information. The other tool, and not to confuse things, that sits alongside this is Choosing Wisely – Five questions to ask your care provider. That’s also a fantastic resource to help support these conversations when trying to make decisions around our care. We love seeing the Charter of Healthcare Rights in, you know, GP clinics and waiting rooms and consult rooms but so to that poster with the five questions to ask your health provider. Thank you. We didn’t think we’d be vying for the mic, did we? I agree with Melissa. I think it’s wonderful when people come into an organisation or a health or wellness facility because that’s part of different phases of journeys but I think it’s actually about the general public understanding at a time where they might have discussions with their family or loved ones. I think from a health professional point of view, you know, it is critical that it’s actually within their base education that this is, I go back to the values, this is a set of not only rights and responsibilities.This is a fundamental set of values as well that contribute to ongoing life’s journey and so I am one of those people that think it’s in a time of crisis and I was thinking of an example when coming into an emergency department and you might even follow up with a conversation around the orientation to the Charter of Rights at the point people are so happy if somebody survived or what the outcome might be, they just may not be in the space to want to receive that information or think it doesn’t apply to me anymore because he’s so grateful. Different context for different people, of course. So, therefore I think it’s just one of those elements, not just one, but it is a fundamental element of understanding this every day. It’s part of being human, it’s part of being a citizen, it’s part of actually contributing and that goes for our patients, consumers and our health professionals and anybody else who has touch points in the life of, and particularly, the health and wellness, illness whatever part of a continuum,I think, it’s fundamental. Of course there are there are existing documents, there’s a professional codes of conduct and standards, how does how does this Charter to interact with those kind of standards? Well, so, the Charter of Healthcare Rights and good medical practice which is the code of conduct for the Medical Board of Australia, they’re kind of flip sides of the same coin so the code of conduct describes good care from a doctor’s point of view so what their responsibilities are whereas the Charter describes the same thing from the patient’s perspective without any doctor talk and lawyer language so that’s how they kind of linked together. So doctors have professional responsibilities and if a complaint is raised and it’s identified that we’ve not actually done the right thing, you know, there are legal consequences to that and we can be found guilty of unsatisfactory professional conduct. So the Healthcare Charter in itself doesn’t come with punishments but there are penalties associated with the medical code of conduct. And Grant, how do the rights relate to the type of complaints that you see? And this is something we should talk about what is the legal status of these rights and, I suppose, something patients and clinicians might be worried about is that there will be punishments and so it’s best not to tell patients about their rights, in case or patients don’t want to make a fuss so I wanted to ask that. So as I spoke about at the start we use these rights as touchstones to determine where clinical practice might have fallen a bit short. I also indicated then that we don’t use that in a punitive way. It’s about repairing that relationship between consumers and service providers. But it’s also about educating service providers about the Charter, about those rights, about the minimum standards really that they ought to be providing. In terms of whether it has you know legal status certainly it will go towards what we expect from service providers and in that way, I guess, we use them, we judge people against them. But most of our work is done through mediation and conciliation and that’s true across the country so we try to ensure that those relationships are repaired in a way that if the consumer needs to engage with that service provider again that they feel comfortable to do so. So in Queensland we’re very lucky. I understand we’re the only state or territory to actually have our right to health care enshrined in legislation with our new Human Rights Act but I think with both that Act for us and the Charter of Healthcare Rights, the challenge does come in implementation and within our health system that has limited resources and for states like Queensland within the geographic constraints that we have. So for us, in terms of access, that’s about if you do have to travel for healthcare if you can’t receive it in your local community making sure that there’s adequate travel assistance provided and that those processes are as easy as possible for people to get that support. And if it’s around, sorry, which was the other one I wanted to refer to? And if it’s around safety, that people are given that opportunity to have those conversations. And just to take up that question of should doctors hide this so that patients don’t know so that we won’t be sued? I’d actually argue the absolute reverse because the best, safest care is care where there’s open communication, like Grant has said, and where patients are able to exercise these rights and the best way to lower your medico-legal risk is actually by providing care in line with the Healthcare Rights Charter. That’s a great point. One of the big sort of updates to the Charter in the second edition is this concept of partnership and I think it’s something I’d like to get all of your perspectives on. I spoke earlier about this doctor with the vanity license plate and I think probably all of us at some point have encountered this kind of old-school arrogant doctor that thinks, you know “I’m the doctor, you are the patient” and not wanting to, the idea of partnership would be kind of offensive to those sensibilities but I wanted to ask about clinicians, first of all, how they can help create a partnership with consumers? I mean it’s quite an elevated concept for a consumer, especially first time in hospital to be told okay you’re going to be a partner with this person that’s been at medical school for 15 years and has all this experience. How do clinicians help to initiate a partnership? I think the first step is remembering that it’s actually not about us. We’re actually here to sort out what the patient needs sorting out and so however many years of training are irrelevant, if we don’t listen to the patient, we’re not doing our job. And what if you do find someone that just doesn’t get that concept and they don’t want to speak? Is that something that that needs to be part of clinician training or is already? It definitely is. So I teach at one of the universities locally and it’s very much a part of changing the way clinicians are trained to practice and how we think and recognising that partnership is actually the key to good, safe care. It’s, you know, when we talk about fundamental rights, you know, a connected partnership between clinician and patient is the foundation of good care. That’s great to hear. This is not a universally accepted idea around the world, is it? This is something Australia is, in some senses, you know one of the frontrunners. Veronica, would you like to about this idea of partnership? Yes, thank you. Look, I think, that in the past though we have talked about partnerships but it’s still been a partnership of power and that’s why I think I’ve mentioned a few times now that we really need to act at our education level, at our practice level, at the system level and then at the individual, that they’re authentic partnerships and what that actually feels, like looks, like not from the professionals point of view but from the patient’s point of view. I think if holistic care was around many years ago when I was a young nurse and in fact we’ve talked about it for many years, it’s actually how it looks like for that person and it doesn’t take away from the expertise and the contribution that all the partners make, it actually lends itself to improved outcomes, as we know. There’s actually a feeling of safety and not only a feeling, it is actually then true safety for people, not only in the care delivery but how people feel or they’re prepared to speak up or challenge. As I say, those challenges and that feedback, they’re all a gift because that allows us to actually work with and together improve the particular patient outcome, the system of care and in fact, that lends itself to more community as it was before. It will take some time. I think, you know, we don’t want something that is superficial, we want something that’s authentic and meaningful and that can demonstrate that. So as I say, I’m very excited. What does this mean for the consumer? How do we encourage consumers to engage this idea of a partnership. Yeah, look, I really like what Veronica said about placing the consumer at the centre and that decision-making is what’s right for them. So I think we need to remember that there will be some consumers despite being given the opportunity to have a conversation about their different care options, they just may not wish to be as engaged in their care and follow the guidance of their health professional. Equally, there are consumers who may wish to make a decision that is not in line with the recommendation of care and the system sometimes struggles with this and I think can do a better job at having processes in place to document those conversations and document the decisions that protects both the health professional but also supports consumers to make informed decisions that are right for them for a variety of reasons. I’m convinced that if clinicians put themselves in the other person’s shoes they would actually have a better understanding what partnership means and let me give you a quick example. I had a staff member who presented to an emergency department with chest pain and after four hours in the emergency department, a clinician came in and said “good news, you’re not having a heart attack but the surgical team needs to see you” and walked out. So her blood pressure skyrocketed but from the clinicians perspective, it was good news. From the consumers perspective, it was just as stressful. Thanks, Amanda and Grant for giving us these these stories that relate to the Charter and the rights. Veronica and Melissa, could you maybe give us the story of how a patient’s rights have been respected or not respected and what the result of that has been? Well I guess for us we’re most aware of them being used by consumers sitting on committees and being able to draw on the rights within the Charter. I guess for me what’s weighing on my mind and has informed my answer to the last question and I think there’s learnings for us in this, is when the Charter just becomes a piece of paper and and it’s not upheld and I guess that’s my cautionary tale for today that despite it being on the wall of a hospital I heard a story today where they didn’t have the chance to choose care pathways for their child that met their needs and so for them for them, and many others in their circumstances, it’s about having processes in place that bring this document alive and ensure that it does uphold their rights. Thank you. Veronica, can you share a story with us? Yes, I’d like to actually because I think that often, as Grant said or others, health care professionals are people are human and access services, are participants in care. In the not-too-distant past I’ll just be careful how I tell the story I’ll just alter a little bit, is that I was approached after well it was actually a compliment around the care delivery of all the professionals but it also had some significant opportunities for improvement. And so one of our patients family members came up to see me and said “I really need someone to hear me because everyone’s so happy about the outcome that’s happened” and this family member had actually been through you know complex care in a big tertiary hospital with probably not an outcome that was going to be positive for that family. Anyway to listen to this it was wonderful to hear all the wonderful things that different people had been done and you know you could sit there and pat yourself on the back and say well the other doesn’t seem to be so difficult. In fact, any breach of that trust or that non-listening, we failed. And that’s how hard sometimes to come to terms with so I talking to this family member and I said “help us to work out where we went wrong and what were the key areas?” And really as I was listening, I could work that out but that was from my perspective of where I was sitting in the organisation and my linkages to patients. The key that was described to me was that lack of consistency so actually it was about bringing out some of the points of the original Charter of Rights and what that expectation was but it was the lack of consistency moving between treating teams and it was a very powerful story and I thought it was. And I nearly used the word courageous to this family member and I thought, that’s actually nearly patronising so I said “tell us and share with us how we can improve with you, for other people”. And so when I actually read for the first time the My Healthcare Rights and what it looks like now and we’ve got a long way to go, obviously, was actually I think it’s clearer the expectation on clinicians and health services and professionals and it became very clear to me in this conversation with this family member that you know a lot of times we say the right things. Our actions speak and they’re profoundly more powerful than the words and so that was what was being discussed and described to me. And it was, for me, if we had listened more, if it had have been authentic and I’ve used the word authentic partnership but it would have had a better outcome for the family. And so I think that was a very salient time. It’s actually very humbling to hear that and along the way this family member was telling me all the positives to make me feel better and I said you don’t need to do that. We actually strive to give the best care but really we let you down and so and actually I’ve stayed a bit connected to see how we’re traveling and that’s, you know, what we need to do and though it’s at the individual clinician level and I think, Melissa pointed out how busy, we can be busyness is not an excuse not to achieve these fundamental rights, these values, these standards because in fact, that’s what everybody deserves but it also has a benefit, not only for the patient, but for so many different levels of organisations and outcomes in society. So you know how there are some, I have had many patient stories because I have been around a very long time, but this one has absolutely, you know, how some just stand out and it was a watershed time in a way even though it seemed quite small because I went on the journey of the discovery myself to see how we had let that family down and so a lot of lessons learned. I think if there are stories out there that help us to humanise this charter and why it’s important if it’s impacted your life someone who’s out there watching this then please share your stories with us. Use the hashtag my healthcare rights. Tweet at us and because I really think the more stories we can gather, the more we get to understand just what’s going on out there. I mean we have a vast health system and there’s so many there’s local level and national level and there’s big hospitals and tiny hospitals and GP clinics. It’s huge and everyone is affected, literally no one is not in some way connected to a health care so please share your stories with us. I want to ask if any of you had something that you feel hasn’t been said yet or just something you’d like to end with briefly? Amanda would you would you like to say anything else? I’ll come back to the mic and I just want to come back to that issue of good care Is actually described perfectly in this Charter so if you want to know what good care looks like and feels like, read the Charter, get to know us and if you’re not experiencing it, you can actually stand up for yourself. I like to build on what Amanda said because I totally agree. I think what this Charter does as it is described will provide that opportunity more so particularly for health professionals, but also our patients, to know what it actually looks like and feels like and I think that might have been a limitation of our previous one and that’s probably come through feedback and we will continue this will not be the last edition of this and as resources become available particularly for the health professionals and consumers, I think the shared conversation will have a deeper meaning and as I keep saying that authentic discussion to be able to have good critical debates, good conversation, shared plans forward, all of those wonderful items because we are actually we are talking about our humanness as well, both as the professional and as a patient so I think it’s really important. Thanks. I think I’d go back to put yourself in the other person’s shoes, engage in communication. It’s not a scary concept and really when we do that we get much better outcomes for for consumers. It’s a more pleasant place for you to work but the consumers feel like they’ve been heard, they have engaged with their healthcare and the outcomes better. Everything that we’re talking about, whether it’s about care at an individual level or consumers partnering with health services, it’s all about relationships, about partnerships, about communication. 100% agree that the majority of the complaints we hear about are to do with communication but it’s also about having that shared vision so whether it’s a vision for a new service or a new model of care or having a shared vision about what matters to the individual consumer. It’s about knowing what that vision is and when working together towards it and we hope that the Charter will become a driver not only for individuals knowing what they deserve from the health system but also once they’ve had that experience that they might want to work with organisations like the state peak consumer organisations, like condition-specific consumer organisations, even like the Commission, to be able to shape the health system to better meet all of our needs. Thank you. I wanted to pick up actually on the point you made, Amanda, just about how this Charter, it sums up the concept of good care. I think that’s a very good point. I actually really want to congratulate the architects of this Charter. I must say in health care in the past I haven’t always encountered the most easy-to-understand language. Often I have no idea what’s going on, you can’t read the doctor’s signature and that sort of kind of obfuscation seemed to be part of the communication for a long time. This is a beautifully simple, clearly worded document that condenses some huge human concepts, fundamental rights, into a single page has room for a graphic on the side so congratulations. Will you please help me thank Amanda Walker, Veronica Casey, Grant Davies and Melissa Fox. Thanks so much for coming in. I’m sure this conversation will continue. I hope the conversation will continue on Twitter but this is now the moment of truth. The countdown moment, the rockets are about to fire. I’m now going to pass back to Professor Villis Marshall for the official announcement of the launch of the Charter. Thank You, Luke. Before actually making the official launch what I would like to do is to thank the many hundreds of people both in the healthcare professions and also in the community that have contributed comments to us because I think without the enormous amount of effort they put into we wouldn’t have achieved something that was so relatively simple, something that was so clear and something that we hope everyone can understand. It doesn’t mean to say though they will do it immediately. I think like all of these things it’s what do you mean by “I don’t understand”. Well usually that means I don’t want to do it basically and I think, we do have quite a lot of work to sell it across both the community but across the profession. I mean it is delightfully simple but I think we will find that we do need some salesmanship to convince people that this is what is necessary. I think we can best do it often by stories. I think Luke’s stories, the other stories that we’ve heard and also getting members of the professions as well as the community to talk about it because when you see the positive effects that can occur if we adopt this approach it is well worth the effort. However we’ve certainly got a lot of work to do. We won’t ever be able to rest on our laurels, for no other reason that the delivery of healthcare and attitudes of the community are constantly changing. What was perfectly acceptable 50 years ago, you’d be in jail for now. So we know that in ten years time we will be looking at a completely different community and probably a different set of rules if I can put it that way, of ideas as far as the Charter is concerned so this is a living document basically and it will continue to evolve and that’s something that we have to do. But I guess the underlying principle, of course, is that we want to get the right care, in the right place, at the right time. It’s the three rights, like the reading, writing and arithmetic. It’s the three rights as far as care is concerned and I don’t think it really matters how the Charter evolves as long as it achieves the right care, in the right place, at the right time. I launch the second version. Long may it last but we know we will need to modify it because we can never, in the Commission, rest on our laurels. Thank you. I thought maybe we’d have some pyrotechnics or something. I’d get to throw champagne bottle against the wall. Later on we’ll get something spectacular. Thank you so much, everyone. I know there are many more conversations to have about this Charter at every level of healthcare and I do hope people watching out there will go and initiate some of these conversations and form part of an evolving narrative about the kind of healthcare culture that we want to see emerge in this country. The progress we’ve made towards a patient-centered healthcare system here in Australia is something I feel proud of. I know I’ve been to other countries in the Asia-Pacific region and I know that they look at what we’re doing over here with patient-centered care with great interest and admiration, for the most part in that it’s something we can be proud of. On a personal note, I’d like to see us doing more as a nation to promote good health and prevent people becoming dependent on healthcare service in the first place. I’d like to see health and well-being placed more towards the centre of our national conversation. Ultimately I think all issues at their core are our issues of health and well-being. Whether it’s the health of our bodies, our institutions, our environment, our economy, our communities or our culture but I wanted to end on a different note. Someone tweeted at me about the possibility of having a musical element to today and I thought well why not? I don’t know if that means people are going to be sort of switching off out there but thought it’d be nice to finish with a song and this is a note, not just a musical note, but a note of love and gratitude to all of the doctors and nurses who have done so much for us over, so many years. It’s only natural when we talk about patient rights that we talk about stories in which we feel that those rights weren’t respected or where things have gone wrong but my overwhelming feeling towards the people that have helped me in the healthcare system, it is one of incredible gratitude. And so the song I’m going to play I wrote while I was in the hospital having the operation that transformed my life. I’ve never played it on this instrument before but I came here on the bus and I didn’t want to carry a full guitar so it should be interesting. There’s always a little feeling that you’re David Brent when you bring out an instrument inside a room like this but this is my love song to public health care and it’s called “The best holiday of my life”. No one talks about work here, no one asks to me what I earn, no one dresses and shirts or in ties. The bosses wear pyjamas to handle their dramas, sometimes they wear masks for disguise. I thought this week would be enjoyment free for me, if not filled with misery and dread but it’s been like some magical, musical, mystical, memorable holiday instead. There’s no mobiles ringing, no cover band singing, no adverts for beer to be seen. No pokie machines, no TAB screens and the the floors here are all kept incredibly clean. There’s a different woman by my bed every night, but I’ve never been closer to my wife. It might sound insane but I’ll say it all the same this is the best holiday of my life. There’s ice cream and jelly, radio and telly, no hidden minibar fees. They take my dinner away, ask me if I’m okay and how else they can put me at ease. There is a tube my vein that sends drugs to my brain so I can forget about my worries and my strife. I’m drip fed, catheted, I never have to get out of bed. This is the best holiday of my life. How is it that saline, tastes sweeter than praline When you mix it with fixes of ketamine and morphine? Endorphins are running through my frame. It makes all of the parties I’ve ever been to feel lame. Who would have thought it could be so much fun to be sliced up the middle by a knife? I’m lying here, flying, I can’t stop smiling. This is the best holiday of my life. I came here with an organ that was causing distress, now I guess it’s been thrown in the bin? Or perhaps it’s in a dish, filling a scientists wish, to cure the condition I found myself in. And I hope one day soon, she’ll be over the moon and she’ll dance to the drum and the fife. With a gleam in her eyes and a Nobel Prize, cos’ I had the best holiday of my life. In cathedrals and churches they are searching for God. They’re wondering where he might be? I believe I just saw her helping an old fella fill up a bed man with wee. There’s no discrimination inside these walls but outside it’s sadly still rife, the young and the old, the weak and the lame, the rich and the poor, they’re all treated just the same, that’s why I named this week that just came the best holiday of my life. It was the best holiday of my life. Thank you so much. Thank you so much to all of our panel discussion guests today and to Professor Marshall. My name is Luke Escombe. If there’s anyone still out there, thank you so much for watching us. I didn’t receive any shoutouts to the Mullumbimby massive or anything but shout outs to all of you who have tuned in. I hope we’ll continue this conversation on the Twitter hashtag My Healthcare Rights but other than that thanks for being here today and goodbye. Please help us spread the word about this Charter, it’s very very important. Thank you [Applause]

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