- Tenei te mauri ka whakapiki. Tenei te mauri ka whakakake. Ko te mauriora ki a tatou katoa. Whano, Whano, oioia mai te tokio. Haumi e, hui e, taiki e. This week on The Hui - The most successful axeman in Aotearoa, Jason Wynyard is fighting for his life. He talks exclusively with The Hui about his shock cancer diagnosis. - Words can't express how disappointed I am in the system. - And we look further into the failures within the health system with oncologist Dr Maxine Ronald. - # Ko te pono tahuhu o toku whare. # - Plus, we have the final edition of our New Zealand Music Month series, featuring a band that was created during lockdown. - We are a group of people who have this genuine love of music influence, that form this beauty of music, you know. - Origin Roots Aotearoa brings the vibe with their waiata, Ko Taua. # E nga iwi, # kia tapatahi, # kia kotahi ra, # Tatou tatou e. # Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023 - Nga mate o te wa, haere mai, haere. Tatou e whakaurupa mai nei i a ratou ki te hinengaro, tihewa mauriora, and welcome back to The Hui. A few months ago, one of our most successful sportsmen in Aotearoa had yet another world championship in his sights. But elite axeman Jason Wynyard is now facing a much more dangerous opponent ` a rare and aggressive stage four cancer that's attacking his lymphatic system. The formerly fit and healthy athlete says the shocking news has been compounded by agonising weeks of delays to get the right diagnosis and treatment. Jason and his partner are sharing their story to help other whanau get the health care they need. They spoke exclusively to our reporter Ruwani Perera. - 2023 was shaping up to be another competitive year for champion wood chopper Jason Wynyard. But it's now going to be one of his toughest ` staring down stage four cancer and in the fight of his life. Why is that important to you, to talk to us, Jason? - Oh, it's really important that my story is told because it's, uh... it's` it's a big one. The health system in New Zealand is very, very broken. - Jason was misdiagnosed several times for an aggressive cancer where early treatment is crucial. Do you believe that those delays in diagnosing the tumour have made things worse for you? - Oh, 100%. And if it had've been picked up on his first time, we would have had a really good fighting chance. - MC: Stand to your timber. Three, two, one, go. - Two months ago, this was 49-year-old champion wood chopper Jason Wynyard, smoking his competition; beating competitors 20 years his junior. - What are your goals for this year? - I want to win the world championship in October. - But just a month after coming second at this national competition,... - So Jason takes that out in 12.68 seconds. - ...that goal has been derailed. Jason is now confined to a hospital bed, fighting Burkitt lymphoma, a rare, fast-growing cancer of the lymphatic system. - The way they've handled the whole procedure, you know, from the start, it's just so... it's like you can't be any more wrong about something, you know? - Jason's partner of almost two years, Sharon Kennerley, has barely left his side, and has been documenting his medical journey exclusively for The Hui. They're going public for the first time about their frustration with a health system they say has failed Jason. His ordeal began in early April. Where was the pain? - It was in his stomach, but he was also having back spasms. And so it would present itself on one side, and then within minutes it would be on another side. - It's been my sort of main complaint from the start that it was restricting my breathing, you know, and there was tightness in the abdominal area. - The GP Jason saw told him he'd just strained a muscle, but Jason knew it was more serious. Days later, still in pain, he went back, asking for a scan and a referral to a specialist. Once again, the GP was adamant that it was just a sprain. Not happy with that diagnosis, Jason contacted a friend who was a specialist and got a scan. - We're grateful that we were able to get that scan, because as soon as we had it, his specialist friend said, 'Look, they've picked up that there's a mass, you need to go straight to Middlemore.' - Jason and Sharon were hopeful for a thorough investigation at Middlemore Hospital, but were told that the mass on the scan was just a haematoma; a bad bruise. - And I said, "Can we have an MRI scan?' 'It's important for us to know that this is exactly what it is.' And he actually said that they cost a lot more money, and that it's just a haematoma which will absorb into the body. And so Jason trusted that. - But Sharon wasn't convinced. - As soon as we saw the mass, I was asking about cancer straight away, only because of my experience when my mother had stomach cancer, and a lot of her pain and so forth, it was really similar. And I just kept saying to every doctor that came in, 'Are you sure it's not cancer?' - Did you feel sort of dismissed? - Oh, absolutely. 100% I felt dismissed. I felt like I was an idiot for asking questions. - Jason spent two weeks off work at home, gripped in crippling pain. - During the night, I would be rubbing all these heat rubs on his back, because it would be in one area, then another. And you know, I was doing everything I could... (TEARFULLY) to support him through that. It was hard, but he was the one going through the pain. - After almost four decades at the top of his game, competing in a highly physical sport, Jason is a tough athlete with a high tolerance for pain. But he was in agony. - He was just in so much pain. He was curled up in pain, and I could see the swelling around his stomach, so there was more going on than just that. - They were right. Just a month after first going to his GP, Jason was told he had stage four cancer. Sharon felt the shock diagnosis was delivered without privacy and compassion. - There was no respect, no dignity, no confidentiality. And he just goes, 'Oh, it's not a haematoma, it's a lymphoma.' And I'm just like, 'Is that cancer?' And then he said, 'Yes.' - The whole experience has shattered Jason's faith in medical experts. - Words can't express how disappointed I am in the system. This whole journey seems like a cost-cutting exercise for the hospitals. - Jason's hospital notes show the mass was first diagnosed as a haematoma, and the MRI scan was done a month after Jason first sought medical attention. In that time, the tumour more than doubled, and caused Jason more health complications. - By the time they did the MRI, it had grown to 18cm. So in a matter of a couple of weeks, from 7 to 18. And then he had tumour lysis through his body. It's affected every single organ in this man's body. And now we find out it's in his central nervous system. - All this time it's just been growing inside of me. So it's pretty, pretty disappointing, eh. - In that time frame, he` he is emaciated. He's lost so much weight. His organs are affected. He'd gone through torture. So he's starting a fight for his life on the back foot, because of guessing, back here` you know, when we first went into the hospital and we trusted them. - Yeah. I don't know what's happened to the medical system. Just seems to be really broken. - In Aotearoa, Burkitt lymphoma is so rare, there are only around six reported cases a year. But Jason is not alone on this uphill journey. - (RECITES KARAKIA) - Just before his transfer from Middlemore to Auckland's City Hospital, Jason's close friend Mook Hohneck sent him off with a karakia. - (RECITES KARAKIA) - That's the first time in this whole experience that I saw tears streaming down Jason's face. - There was a lack of empathy and process within the Middlemore Hospital itself. - Despite the huge pressures currently on the system, Jason says patients need to be listened to. - He wants everyone else, other New Zealanders coming through the health system to be treated fairly, and to get better service by the health system. - This will be Jason's home for the foreseeable future, for intensive chemotherapy treatments. It's day one of the first round of chemo. How are you feeling? - Yeah, it's been a long time coming, so looking forward to getting this first round out of the way and getting on the road to recovery. So can't wait to have that happen. - How does this compare to training for world titles? - I guess it's a similar mindset. Gotta put your head down and just get on with it and be positive. Look at the outcome that you want and just go for it. - Jason's drawing on the competitive spirit that's won him nine world titles to combat his cancer; forever grateful for the outpouring of love and support he's received. - Sharon's been my rock. She's fought for me tooth and nail. The support just humbles me. And I feel I can confront anything with love and support of all these people. - We're going to beat this, you know? It's like Jason and I set up for another event that he's just going to smash. And that's all we're focused on, is coming out this other end and creating an amazing comeback story. - Papai te aroha, ne? Now Sharon has formally complained to Middlemore Hospital about Jason's treatment. A Te Whatu Ora spokesperson says it has apologised to the whanau for their experience leading up to Jason's diagnosis, and especially the way the diagnosis was communicated. Te Whatu Ora acknowledges there is significant room for improvement, particularly more training for junior doctors on the appropriate ways to communicate life-changing news. It is committed to making changes so that no other patient has to go through the same experience. Te Whatu Ora added that Jason's case was clinically very complex, and its team worked diligently to make a diagnosis. Taro kau iho ana, e te iwi, ka arumia nga take hauora nei i roto i nga hohipera. Coming up next, I'm joined in the studio by Dr Maxine Ronald, a general and oncoplastic breast surgeon at Whangarei Hospital. Kua auraki mai ano ra koutou ki ta tatou hui. Welcome back. Now Jason Wynyard's experience in the health system is sadly not uncommon for Maori, and Maori are more likely to be diagnosed later, and often their outcomes are not as positive as non-Maori. So to discuss why that is and what is being done about it, I'm joined by Dr Maxine Ronald, He uri no Ngapuhi, me Ngati Wai. E te Takuta, tena koe, Thank you so much for joining us. As Jason and Sharon and whanau have said, the system is broken. Why is the system so broken? - Tuatahi he mihi aroha ki a Jason me tona whanau i tenei wa taumaha, Ko te tumanako, he piki te ora, a, ka patu ia i tenei mauiuitanga. Yeah, I mean, that's hard to watch, because it's health professionals who want to do the best for our whanau and our community. But the story that we're hearing from Jason isn't anything that's anything particularly isolated. And in fact, the Cancer Control Agency did a series of hui in 2021 where they went around the motu, I think they held 13 hui and talked to 2500 whanau. And the experience of Jase and his whanau is really reflected in those voices. There's barriers to accessing care, and then once Maori are in the system there's barriers to moving forward through the system at the same kind of rate as non-Maori do. So even once we're in the system, we're experiencing barriers to care. But then there's also our experiences of care once we're within the system. Those feelings that they discussed of not feeling empathy, not having dignity, many Maori experience racism in their healthcare, and that can be intergenerational. So, you know, our whanau's experience can affect our own experience, and that leads to trust, you know, issues with trust within the system. So, yeah, it's a big problem. - We've had a lot of response on social media from people who have seen the promotion and have said, as you said, this is not an isolated case, in fact, not only when people get access, but it's slower and it takes longer. How do we fix that? - Yeah, it's a complex system, and it really requires a multi-pronged kind of approach. We've got some systems in place which need time to develop and mature, like with Te Aka Whai Ora, which is really about hearing that whanau voice and putting that into action, basically, so that we're basically responding to the needs of the whanau in the community and listening to them. - And Te Aka Whai Ora is new, and Jason and Sharon have actually said that they now believe a separate Maori health system is required. Is Te Aka Whai Ora that system that they now believe is required, so that people don't end up in the same situation as Jason? - I think it's the best opportunity that we've got, that we've had for a long time. It's clear that the system we've had since mai rano has not worked for our people, so we need something new. And at the heart of Te Aka Whai Ora is tino rangatiratanga, and our ability to direct our own health services in a way that is acceptable to Maori, and that will be kind of critiqued by Maori as well. That's really important that that feedback comes back and we respond to it. - Would it be different if Jason, for example, was a well-known Pakeha world champion? Is it because Maori who end up in the system, because they are Maori, end up getting the lack of access and treatment and time that is required? If Jason was someone who was well known in other sports, or a well-known sports champion or someone, would he, say, get different health care, do you think? - I think what I can say is that we do know, is that there is definitely institutional racism. So there's racism at a system level, and there's racism on an interpersonal level as well, which affects people's kind of progress and access through the system. That's a common theme. And we know that racism kills. The way that looks is that systems which we set up, within our own kind of health system, are actually essentially at their core structured to be racist, because they are designed to prioritise non-Maori. And a really good example of that is the bowel screening program, which was designed to start at age 60. But really when you look at when Maori get bowel cancer, they get it in their 50s. So by the time they're 60, almost 50% of Maori who are going to get bowel cancer would have already got it. So a bowel screening programme like that is not going to benefit Maori, and we're going to see greater inequity. So I'm really glad that the voices that were championing that age limit being lowered have been listened to, but that's just an example of structural and systemic racism. - And Jason ended up in Middlemore Hospital, now at Auckland City Hospital. But he ended up in Middlemore Hospital, big hospital, South Auckland in Auckland City. There's a concern, though, that for those Maori who end up in the system, say in other places in Aotearoa, particularly in rural communities, that there's another different level of access for them as well. - So that is another barrier, particularly if you require treatment in say a tertiary centre, and need to move away from whanau; that places extra pressure on patients and their families. So yet another example of that kind of` the system working against our people. So what we really want to see is as more services in the areas where they are required, and that requires us to look at the whole way that we do things. So from the way that we train people, where we train them, so that we're getting people into the areas where our people are, and also making sure that we've got a culturally safe, culturally competent and anti-racist workforce, so that we're taught that in medical schools. - So let me pick up on the training part then. Are we doing that well enough at the moment? Are we doing that in a great enough way to ensure that people don't end up in the same situation as Jason? - I think we're doing it better than we used to, and the Medical Council now require that doctors are culturally safe and culturally competent, and there's a suite of kind of things that we can do in order to learn how to be culturally safe and culturally competent. But it's not` those kind of things are not just learnt as a one off. It's a lifelong kind of process and journey that we've got to be continually working on, that kind of thing. And I think also we need to learn what racism looks like in our workplace, because it's one thing to understand it theoretically; it's a different thing to actually kind of see it playing out in your workplace, and that perhaps when a Maori whanau is not able to turn up for their appointments, it's not because they don't want healthcare, it's because they can't get into those clinics because they're working, or they've got whanau to look after. That's also how structural racism looks. - We've got a lot of response on social media, as I said, and the messages are still coming through now, watching live. Jason and them wanted to tell their story, so that people don't end up in the same situation. So me mihi ki a ratou me nga korero, and sharing those stories are really important. Maxine, thank you very much for your time. - Kia ora. - We appreciate you joining us on the program today. Kia ita tonu mai ra, e te iwi, he waiata ano hei taupoki ake i te marama o nga mahi waiata ki Aotearoa. We conclude our Music Month series, next. Mahea mai i te waiata hei whakarehu i nga korero katoa a ta tatou hui. To conclude our New Zealand Music Month series, we sat down with O.R.A ` Origin Roots Aotearoa, a collection of creatives on the rise, and celebrating te reo Maori. Tena korua. Thank you very much for coming on the show. Thank you very much for your time. Hey, let's start with O.R.A. Where did O.R.A come from? - Well, we've actually come out of lockdown. There was a whakaaro of starting a band at the most crazy of times. At that time, we had our lead singer, which was Luke Whaanga. He started off, and there was a group of us that started, and then we had our waiata Ukaipo come out, and pretty much from then, te reo Maori has been the forefront of our waiata, and has been our drive to writing, and from 2020 to now, ara te kaupapa. - But how do you stay together, because you're all different people, eh, John? - Oh, beautiful. We're not a band, actually. We're a group of people who have this genuine love of music influence that form this beauty of music, you know? So it becomes genuine to us. So we've now really solidified who our crew is and what it looks like for us. And it's a group of people just with this vision to move forward and go hard and do what it is that we do. - How do you know you've nailed a waiata, though? - There's a wairua feeling, when you just know. You know when you're playing something and you just get that feeling where you're like, 'Something's special here.' - How do you know when you get to the sign off point where everyone's like, 'Yeah, we're sending this out there?' - Yeah, it's a funny thing. Like, as a musician, sometimes we're never happy with what it is that we're actually trying to deliver, you know? We'll be looking at this 10 years down the track, thinking, 'Far, I should have worn that hat, he should've worn `' you know, we're always critiquing what it is that we do. But I think the benefit of it is when we release things, the amount of love and adoration that we have come through. - Maori musicians always talk about wairua. How do you make sure you keep that in every song that you write and make and develop? - I suppose wairua's something that we can't really pinpoint, in terms of, to lock it down as, 'This is what it is.' It's a feeling. And it's something that's not boxed in. It's something that, when you feel it, and there's a look, especially when we play, there's a look that we look at each other, that spontaneous chemistry that we have with one another. We can tell, 'Yeah, there it is.' - What about Ko Taua? Cos Ko Taua's a mean song. I mean, I don't know if you could do that song in English and get the same reaction or wairua. Talk to me about that. - The creation of the waiata actually came out of the waiata 'Tutira Mai Nga Iwi.' So if you actually listen to the structure of the song and the melody that we're singing, it follows the actual tune. But what we've done` because the motu actually been singing the song wrong. And we actually went and asked our brother Tuhoe Huata, who gave us permission to use the waiata. So a part of it was bringing back an anthem of New Zealand for the people to hear it, so when they hear it, they're singing it properly. And in the waiata Ko Taua, I suppose, 'Ko au, ko koe, ko taua,' eh? And suddenly you and I are one. Something that can never be broken. - Mean. - He hononga tera. Chur-hoo! # Takiri mai te ata. # Korihi nga manu. # E ara, Tamanuitera # kia whitikina e te ra, # kia pakia e te ra # ki a tatou e tau nei. # Ko au, ko koe, ko taua, # e kore e motu. # Ko au, ko koe, ko taua, # e kore e motu. # E taku whakaruruhau, # taku tai tuara, # pao pake mai ra # kia ngatai, kia makona, # kia pakia e te ao # ki a tatou e tau nei. # Ko au, ko koe, ko taua, # e kore e motu. # Ko au, ko koe, ko taua, # e kore e motu. # Ko te pono tahuhu o toku whare. # Ko te aroha tukutuku, ko hekeheke. # Toku mauroa, ko toku whanau, # te poutokomanawa e. # Kia pakia e te ra # ki a tatou e tau nei. # Ko au, ko koe, ko taua, # e kore e motu. # Ko au, ko koe, ko taua, # e kore e motu. (GUITAR SOLO) # Tutira mai nga iwi, # tatou tatou e, # tutira mai nga iwi, # tatou tatou e. # Whaia te maramatanga, # me te aroha e nga iwi, # kia tapatahi, kia kotahi ra, # tatou tatou e. # Ko au, ko koe, ko taua, # e kore e motu. # Ko au, ko koe, ko taua, # e kore e motu. # Ko au, ko koe, ko taua, # e kore e motu. # (BASS RIFF) - E ao te ropu. E ao te waiata. Choice, eh? That's us for The Hui this week. You can find all our stories on Facebook and YouTube and at Newshub.co.nz. Kia mau i te turanga o Taputapuatea. Haumi e, hui e, taiki e. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023