1 Sunday ` proudly brought to you by Mazda. Tonight on Sunday ` the doctor who was told to try harder and did. I wanna do the very best for them, and it can't be that what we're doing today is the very best we can do. It's a new treatment for breast cancer. Patients go home and get on with their lives. Cheaper, fewer side effects, less recovery time ` but is it too good to be true? Within two weeks, I should be fully recovered and back to work. I'm so pleased. No more radiation. Oh, good. Hello, Laila! The system was just telling him to piss off and give up. That wasn't in Cliff's nature. Cliff Robinson finally forced the system to listen. Just this wonderful feeling that here was somebody that could listen to you, that could see the justice. But now Cliff, and kids Johnny and Marita, face a new reality. I've said to Cliff, 'Is this time for you to accept that it's too hard for you?' I believe Cliff has never contemplated that possibility. Captions by Kate Parkinson. Captions were made possible with funding from NZ On Air. Copyright Able 2016 Kia ora. I'm Miriama Kamo. Breast surgeon Erica Whineray Kelly does her job with the words of one patient echoing in her head ` you must try harder. Erica had done her best to save her friend Caroline, but it wasn't enough. It motivated Erica to try and find better treatment than has traditionally been offered to some breast cancer patients. As Janet McIntyre reports, Erica never realised just how tough it would be to challenge the status quo. Erica Whineray Kelly ` smart, successful, the daughter of a nuclear physicist. Don't forget you've got your assembly today, James. Grew up thinking she could achieve anything. Don't miss the bus. I'm Erica from Palmerston North, and Mum and Dad said I could do this. They said you could do what? Do anything. (CHUCKLES) But not everything. Not yet. Dr Whineray Kelly is a breast surgeon and has brought a machine into NZ ` the only one of its kind here ` that she says could have helped 3000 women with breast cancer in the past three years. But it's helped only a hundred, and only in her private practice. She's furious women are missing out. Why do you feel so strongly about this? My patients ` they're incredible people. They turn up sharing this very intimate part of their life with someone who they don't know. They put their trust in you, and I want to do the very best for them, and it can't be that what we're doing today is the very best we can do. But what is the very best is controversial. Dr Whineray Kelly is challenging traditional methods of treating breast cancer. Do you have any regrets about taking this on? Absolutely not. I'd be lying if there weren't some dark moments at 2 in the morning, where I was thinking, 'Why, why, why did I do this?' But every time you see a patient who is suitable for this treatment, then you go, 'This is why I did this.' Patients like Debbie Ravji. I can't believe how lucky I am. Honestly. ON PHONE: Hello. Ray White. You're speaking with Ash. Oh, hi, Ash. It's Debs. How you going? Debbie, a property manager, believes her entire experience with breast cancer ` thanks to meeting Erica at a screening clinic ` will be over in just two weeks from her diagnosis. If I hadn't met Erica, I would be in the normal system, probably doing everything normally, like everyone else, and getting back to normal in three to four months. Debbie's cancer seemed to come from nowhere. At 49, she has no family history of breast cancer. I was thinking about how and why, and I'm really naughty at work. Sometimes I don't have a pocket, so I've been slipping my phone into my bra, and I thought, 'I've done this to myself,' you know, um, and I kept going over what kind of food I've been eating, you know, cos I'm a cuddly girl, and so I was trying to think, 'How did this happen? 'Why did I do this to myself? Or did I do it to myself?' And to her family ` husband Bharat, whose been through cancer himself, including 10 weeks of debilitating traditional radiation; and to their two sons. Our sons were probably devastated. Mum's the rock, and, um, one of our sons said, you know, 'My life wouldn't be worth living, Mum, if you weren't in it.' EMOTIONALLY: And that's why Bharat and I opted for the treatment we did, you know. Because the impact on them would be less? Absolutely. It's called intraoperative radiation therapy ` IORT. Radiation is delivered in one hit during breast cancer surgery, instead of daily over a course of weeks after surgery. Advocates say it's just as effective for early-stage breast cancer as traditional radiation. It's cheaper, has fewer side effects and reduces recovery time. But it's not available for most NZ women. Women with low-grade breast cancers shouldn't have their lives interrupted unnecessarily, and really, you're taking two months out of a person's life once you've had the surgery and radiation therapy for early breast cancer. Erica's inspiration came from another patient, Caroline McGlashan, who became a friend. Caroline was a gorgeous 46-year-old mother of two, and a very vivacious lady. Until she was beaten by the disease. She was she was very frank in her parting words to me, which were that I needed to try harder, and we needed to try harder. What did you say to her? Um, I will. (CHUCKLES) I will, and there is a little brass plaque on our INTRABEAM machine, dedicated to Caroline. Hey, poppet. How are you? Today, Erica is trying harder with Debbie, using the machine she bought three years ago with a group of friends for $1.3 million. What was your hope when you brought it in three years ago? That everyone could have it. (CHUCKLES) By about 5.30 today, I will be done and dusted, and by tomorrow afternoon, I will be home, um, a little bit worse for wear, but within two weeks, I should be fully recovered and back to work. The treatment could be used for up to a third of all breast cancers. Debbie's tumour is small and at an early stage, so she's an ideal candidate. So, we will take the cancer out. We'll check the lymph nodes are clear, and it will actually insert a probe into the breast cancer cavity. Sentinel node has gone off in a taxi to be checked now, and when that comes back negative, then we can turn on the machine. We will leave the room and deliver the radiation, which might last for about 20 minutes. And it's all over. The wound sewn up. Job done It's just targeting the cavity and the 1cm to 2cm around that tumour cavity. Normal breast radiation will go through the whole breast, and it can potentially go into the ribs, front of the lungs, front of heart. And cause what? Uh, cause scarring, damage. It can cause other cancers. So in your experience with patients, what difference does this treatment make? Oh, it's unbelievable, yeah. Sometimes i still get weepy delivering it. (CHUCKLES) I love it. I mean, it's just amazing. Patients go home get on with their lives, yeah. And they're not sick patients. They're the sort of people that talk about just having had cancer for two weeks. Mm. Erica says, for some women, it could mean the difference between losing their whole breasts or keeping them. We have women who have got very small breast cancers that could be treated with small surgery who are just opting to have their breasts removed because we can't pull out of our community and our life for that three to five weeks that's necessary for treatment. If you're a woman living out in Gisborne, you don't really have an option to go into Waikato for three to five weeks for radiation therapy, so that's` that's unfair. That's a disparity. So we need to improve that. We need to improve it, and this just addresses the inequality that we have in the health system. There are radiation oncologists who support IORT and others who oppose it. But the Ministry of Health is considering the merits, engaging consultants Deloitte to do an economic assessment of implementing it. Most private health insurance companies already fund it, but Southern Cross, our biggest insurer, refuses to. even though traditional radiation, which they do fund, costs them more. Oh my god, it's absolutely massive. Debbie has been a Southern Cross member for 20 years, and while they paid for her surgery, they refused to fund her IORT. I said, 'So you'll cover me for 15 to 30 treatments through radiotherapy treatment?', and they said, 'Yes. Yes, we can. Yeah, no worries at all, up to $20,000 dollars.' 'But you won't cover me for this other treatment?' and they said no. Even though the other treatment, IORT, was a lot less. Absolutely. It was a lot less money, and I would be finished, done and dusted, there on the day of the operation, and they said, 'Look, I'm sorry. That's the policy.' Sovereign and Tower, which is now NIB, immediately took this on, and in fact, then when we approached the other insurance companies at that time with each patient as they came up, we never got questions about it. They all came on board very quickly. They can see the benefits. So how would you describe Southern Cross' position on this? I don't understand it. Yeah, I don't understand it, and I think its really unfair to their members. This treatment costs Southern Cross $8000 dollars less than the treatment they're already funding. I mean, that in itself is a bit of no brainer. Southern Cross told Sunday it's currently assessing IORT for the third time at Erica's request. The previous conclusions were that it needed more follow-up data, that traditional treatment was the better option, and IORT was still experimental. It's just not experimental. It's been around since 1998. There are over 20,000 women who have had this treatment worldwide, and there is collected follow-up data on 11,000 women. So the trial that was done, the target trial, is the biggest radiation trial that's been done worldwide. The Royal College of Radiologists ` the professional body that sets standards ` is opposed to IORT and also wants more data before they'll recommend it. Even though this year, their own breast special interest group said there is sufficient evidence to support IORT in selected patients. Erica believes the radiation oncology specialty has more at stake. I think that, worldwide, there's been a controversy around this particular treatment because traditionally radiation oncologists, in a number of places, are paid per dose, and so there is an incentive to giving more days of treatment. The standard treatment that women get now, those machine are expensive, and so there is a disincentive to taking women off those machines and getting a daily treatment as well. The Royal College of Radiologists rejects this view and says its recommendations are based purely on safety and efficacy and not on economics. How many potatoes have you got there? Two weeks after surgery, Debbie's tired but back working and running her home again. She'll have annual check-ups. How long does it feel like that you actually had the experience of cancer? It's like a blink. I s'pose I don't feel right to say I had breast cancer because it was so quick, and honestly, I don't feel like I've ever had breast cancer. I wasn't sick. Ultimately, this is just a patient choice. Women are intelligent. They can make their own decision about risks and benefits. Critics say this is still relatively new. Does that worry you? I read the information available, and I did speak to experts, and, um, we made the decision. If you can get a grasp on any hope that you'd be well sooner, you would do it. Yeah. I'm so pleased. No more radiation. Oh, good. Erica feels for women who've chosen mastectomy over traditional radiation ` women who could've been candidates for IORT, like Debbie, and who could have kept their breasts. Very frustrated. Very frustrated. But this treatment will come out. It will be available to women, and, yeah, and I hope I look back in a few years, and we don't see this happening any more. All right. Fantastic. Thanks so much, Erica. You're welcome. Very welcome. (SPEECH MUFFLED, SOBS) Well, Southern Cross say they are aware that over time patient outcome data may become available which is more favourable, which is why Southern Cross is currently undertaking their third assessment. IORT is endorsed by the Breast Cancer Foundation and Breast Cancer Aotearoa. Well, up next, he's fought and fought for his two kids for 50 years. He won a landmark case, but Cliff Robinson is now facing another heartbreaking reality. I mean, this is a man who does everything from wiping bottoms to baking cakes to constantly educating his kids. The concern I have now is what the future will be like for Marita and Johnny when I'm not here to fight for them. My dad is a wonderful dad. Welcome back. Being a parent can be tough, but what if your kids stay at home for 50 years? Cliff Robinson is a devoted full-time dad to his two intellectually disabled children. It's been a lifelong labour of love in the face of poverty, prejudice, and now bureaucracy. Here's Jehan Casinader. Nail polish. Marita Robinson doesn't have a lot of money. Powder. But like most of us, she has a wish list. Marita looks forward to the catalogue coming through the letterbox. A lipstick. Bright red. She says, 'Can I have this, Daddy?' and, 'Can I have that, Daddy?' Hello! How are you? Hello, Pauline! Delivery day is her favourite day of the month. And I'll give you some change. Yes, the change. Johnny likes to` to buy things for his room. He's got this fascination with key rings. Are those yours? Mine. All of them? All of them. They have all the same wishes and wants as normal people do. You like that colour? For 50 years, Cliff Robinson has provided a loving home for his intellectually disabled children. He knows that there is no better environment for John and Marita than being with him. But he still has to fight... The house. ...to give them the life they deserve. The system was just telling him to piss off and give up, and that wasn't in Cliff's nature. We first met the Robinsons six years ago. What's your favourite? JOHNNY: Marmite. Although Cliff had cared for Marita and Johnny for all their adult lives,... My toast. ...the government wouldn't pay him for doing that job. A stranger could come in and look after the kids and get paid, and the parent couldn't. How did you feel about that? Oh, disgusted. Absolutely disgusted. Cliff and a group of other parents took the government to court. Our argument was that we were being discriminated against as parents. The court found that there was no reasonable grounds on which to continue this discrimination. It was a landmark case. For the first time, Kiwi parents could be paid as carers. I thought, 'Yippee.' If I would have been a drinking man, I would have bought a bottle of scotch. The government started paying Cliff 40 hours a week,... How much? $2. ...then changed its mind and cut his income by a quarter. They're a lot of uncaring bastards, mainly. They sit in their ivory towers and just say, 'Well, it's` it's not really my problem.' When it comes to problems, Cliff's had his fair share. His wife walked out on him when Marita was 3 and Johnny was just a baby. Cliff admits he wasn't a great husband, but he wanted to become a good father. The chances of getting another partner ` it was just impossible, so i knew the only way was for me to do it. A merchant sailor by trade, Cliff became a full-time dad. Marita was just a little sweetie as a girl, and Johnny was just this cute little kid. To make ends meet, he had to go on the DPB. You were almost less than human. DPB people sat round all day, smoking dope and having sex. That was the story. (CHUCKLES) It didn't happen to me. When the kids were little, I had a huge garden. We kept chooks, and we kept ducks, and I bought a fishing net. Life was dreadfully hard then. Four decades on, Cliff's life is much the same. Marita and Johnny still need a lot of support. What comes from this? Honey. You smell that. Oh, beautiful. Manuka honey's good for you, isn't it? I mean, this is a man who does everything from wiping bottoms to baking cakes to constantly educating his kids. Laila Harre is a friend of the Robinsons. Hello, Laila. She's known them for almost 30 years. I've had an incredible model as a parent, you know, in Cliff. Oh my god. That is Sam with your dad. A lot of holidays and fun times. She has also seen the true cost of Cliff's sacrifice. I've said to Cliff, you know, 'Is this time for you to accept that it's too hard for you?' I believe Cliff has never contemplated that possibility. Marita is just a loving, caring, beautiful daughter who's got this wish to be kind and gentle to others. Things are harder for Johnny, who has diabetes and schizophrenia. He threatens me, hits me, bites himself. He screams, and he yells. But he's got this wonderful kind side to him at times. A long time ago, Cliff discovered that music could unlock Johnny's personality. # Tambourine. # Tambourine. When he's happy, it's just lovely, you know. Like there's just a kind of trueness to his happiness. (LAUGHS) I'm enormously proud of the progress they've made. I like lamb. It's more flavour. But that progress has been marred by setbacks. How did you feel when the government cut your payment? I just couldn't believe it. I thought, 'How can they've been so mean-spirited?' Coming up ` Cliff's last bid for justice. If that failed, I was gone. And Marita and Johnny face an uncertain future. The biggest issue is whether or not it'll be possible for them to live together. 1 For the past two years, money's been tight in the Robinson house. You had to be a bit more careful when you went to the supermarket or went to the butcher's shop. Instead of getting the prime mince, you got the fatty mince. Why is prime mince better? Quality. No fat! The Health Ministry cut Cliff's income by $160 a week. We stopped going for fish and chips on a Friday night. They wanted to know why, and I said, 'Well, we couldn't afford it.' He complained to the ombudsman. If that failed, I was gone because there` there's nowhere after that. The ombudsman has just ruled that the Ministry of Health acted 'unreasonably' by reducing Cliff's income. The Ministry's processes 'fell short' and their decision-making lacked 'fairness'. Just this wonderful feeling to feel that, you know, here was somebody that could listen to you. Cliff's full payment has now been reinstated, but the Ministry won't give him the money he lost. That really hurt me. The government had claimed it would cost 23 million a year to pay carers, like Cliff. In reality, it has cost less than a quarter of that. The Ministry has had it in for these families from day one. Every single step of the way they were forced to fight, and then when they ultimately won, government stepped in to limit their rights. At 80 years old, Cliff still throws out his fishing net for dinner. But he knows he won't always be around to provide for his kids. As you get older, the day of reckoning gets nearer, doesn't it? Does that weigh on your mind? Oh, absolutely. It gets quite scary at times. The concern I have now is what the future will be like for Marita and Johnny when I'm not here to fight for them. Can you find another one that's like that? Another blue one? Laila Harre is one of the trustees charged with stepping into Cliff's shoes when he's gone. Are they prepared for a life without their dad? No. That` I mean, how can they be really prepared for it? Where does that one go? Which pile? JOHNNY: There. Good. How can any of us contemplate the complete evaporation of our current life? The biggest issue is really whether or not it will be possible for them to live together. This is Barbie. Marita and Johnny will be put into care away from the only home they've ever known. Obviously no one's gonna replace Cliff, least of all an institution, but I think we all know the kind of life he wants them to have. When the time comes, Cliff wants the chance to say goodbye to Marita and Johnny. I hope that I'm still in a` a clear mind and I'm still able to give them a cuddle and tell them... What would you tell them? Oh, that I love them and... and I wanted them to enjoy their lives. You've given them good lives. Oh, well, if you can't do the best for your kids, you can't do the best for anybody, can you? MARITA: My dad's a wonderful dad. The Health Ministry accepts the ombudsman's findings. It says it's in the process of 'strengthening' the funded family care scheme and giving the disabled community more of a say in how it's run. Well, that's our show for tonight. Do join us on Facebook and Twitter, SundayTVNZ.