10 February 2025, 7:00 PM
It was in early December that the Lismore App reported on local business owner Lindsy Barton's diagnosis with Ewing Sarcoma, a rare and aggressive form of cancer that typically affects children and about 1% of adults.In the last two months, Lindsy and partner Heidi Green have been making frequent trips to Brisbane so Lindsy can receive treatment.Throughout this process, Lindsy and Heidi have discovered a glaring hole in the medical system, and it has to do with the transference of medical records or the lack thereof. This is something that Heidi is hell bent on changing, no matter how long it takes.Before we dive into that topic, here is an update on Lindsy's cancer."He's good. We're in cycle four. He's been taking it fairly well," Heidi explained."He's lost his hair. He's got fuzz and whiteness now, rather than his black hair. They do say to leave two centimeters so that the hair follicles have weight to fall out so that you don't get infections in your head. His best mate came in and did the clipper when it was coming out in clumps."He's coping well with the treatment. He's coping really well. He's just really lethargic, a bit of nausea on the days when he has the bigger chemos. But other than that, he's good."(A lethargic Lindsy Barton after lunch and treatment in Brisbane. Photo: supplied)While the treatment signs are good, the real test will happen in March when Lindsy has his next PT scans to measure the size of the sarcoma and then make plans to have surgery to remove it before continuing chemotherapy for another nine months.Many people from the Northern Rivers cross the border for medical treatment, especially if it is specialised treatment like Lindsy's. What the couple have discovered is a glaring hole in the cross-border sharing of Lindsy's medical records. It has been impossible for Lindsy's GP at the Goonellabah Medical Centre to receive or view his treatment cycle. Worst still is when Lindsy visits the emergency department (ED) at Lismore Base Hospital."I have a big folder that I carry with me now, and I actually have that ready when we're at ED or going to see another specialist. If we're seeing his GP, the information isn't being shared fluidly between the two systems. So, if bloods are taken in a New South Wales Hospital, it takes days for the Queensland hospital to be able to see that information and vice versa. There isn't that instantaneous sharing of the information on what's happening.""It can be uploaded to My Health Record, but the patient has to already have opted into My Health Record and have consent for that information to be shared. But the hospitals run on different software systems, so if Lindsy's GP wants current medical information, she has to ring his hospital in Queensland and actually request that information every time that she wants an update.Larger problems arise when Lindsy visits Lismore Base Hospital when his pancreatitis is playing up."On a recent presentation to ED. I actually had to give the ED doctor a six-page list of medications that Lindsy is currently on, which he then photographed. In looking on My Health Record, there isn't a list of his current medications. So, I can't log on, he can't log on, the health professionals can't log on. At the moment, it's reliant on me having this document for an ED doctor to know what Lindsy's actually on."This is where Heidi's advocacy begins."I'm advocating for us to have one system that has all of a patient's information on there, so that it's readily available for a GP, for an ED doctor, or a health professional."We've got 12 different health professionals that are dealing with Lindsy's case at the moment, and there isn't a cross-section of that information being shared with everybody. Not everybody has the full picture of what's going on."If Lindsy was to present to ED today, he's cytotoxic. If Lindsy was unable to speak, and I'm not there, nobody is going to know that. Nobody is going to know that he is two days out of having five major chemotherapy drugs that are still in his system. He's still cytotoxic."We need to be able to have that information readily available for people who are dealing with people who have got medical situations."According to the Cancer Council of NSW, health issues may arise when someone comes into contact with a patient's body fluids. Very small amounts of the chemotherapy drugs may be released from the body in vomit, urine (wee), faeces (poo), blood, saliva, mucus (phlegm), sweat, and semen or vaginal discharge.The chemotherapy drugs may stay in Lindsy's body for up to a week. Cancer (oncology) nurses and doctors often wear gloves, goggles, gowns or masks because they are exposed to chemotherapy drugs every day. When the treatment session is over, these items are disposed of in special bags or bins.Heidi believes the onus shouldn't be on the patient to make sure that that information is readily available.Of course, Lismore and the Northern Rivers is the only cross-border towns that this situation could affect. It is likely the case at Albury/Wodonga, so NSW and Victoria or Mildura, which is in Victoria but closer to Adelaide than Melbourne."I think this is a federal issue. We have our own state medical health. We don't have a national medical health. We have Medicare, we have the ATO, and we have Centrelink. They're national; it doesn't matter where you go. But, when it comes to medical information, each state has their own system, which doesn't correlate with another state's system, and we're finding again that hospitals have their own systems, which don't correlate with other systems within the state."It's very frustrating. I'm a capable person, and Lindsy couldn't tell you everything that's going on with him at the moment, but if you've got somebody who doesn't have a support person and the patient doesn't understand correctly, the patient's stuffed. There's nothing there. It's open to mistakes.Heidi is referring to Lindsy's self-confessed chemo-induced brain fog, which is becoming stronger following each treatment at the Princess Alexandra Hospital in Brisbane.Heidi has enlisted Member for Lismore Janelle Saffin to advocate on her behalf. One of the first words Ms Saffin told Heidi was "This is going to take a long time"."It's a long process. This is not a quick fix. In her words, this is a 10-year fight. But today's the start of what needs to be done with it. This has to happen."Janelle Saffin told the Lismore App that she is only starting to dig down on the issue now."A few local people have come to me after they get referred and through the public health system to Queensland. So, there's that issue. I'm just waiting for them to give me some more details."I said to them, both, the people who've talked to me, that some of it may be within the belly wick of public health, and some of it might be private, and we've got to work out that and see what we can do. Once I've got that detail, I'll be able to advocate better for them."We've got Cross Border Services commissioners. So, New South Wales has one and Queensland now has one. I know the New South Wales one, I've been trying to meet the Queensland one, and we keep passing each other. It's been a couple of years, but there was an MOU (memorandum of understanding) on health, and we need to look at it.As MS Saffin said, the wheels are turning, and maybe for quite some time before a permanent solution is agreed and implemented.