Transcript : GH around the world This is the transcript of the panel discussion "GH around the world", filmed in June 2021. [00:00:00] Neil McClements (CEO, Haemochromatosis UK): [00:00:00] Right. Well, it's now, 12:30 in the UK and I just wanted to start this special international iron brew and welcome everybody to this session. For those of you who don't know, I'm Neil McClements, I'm the chief executive of hemochromatosis UK and I'm talking to you from sunny Lincolnshire in England and it's 12:30 lunchtime here. [00:00:38] What I thought we would do is quickly talk to each of the panelists to let them introduce themselves. And I wonder maybe we could start with Diane. Where are you and who are you? [00:00:51] Dianne Prince (Australia): [00:00:51] Okay I’m in Sydney in Australia and I'm the president of haemochromatosis Australia, and also the current [00:01:00] president of the international Alliance haemochromatosis [00:01:03] Neil McClements (CEO, Haemochromatosis UK): And what time is it with you? [00:01:07] Dianne Prince (Australia): [00:01:07] It’s just up to 9:30 in the evening, which isn't too late. [00:01:13] Neil McClements (CEO, Haemochromatosis UK): [00:01:13] Really. That's great. Thank you for joining us before bedtime. Maybe we could turn now to, to Sandra. [00:01:25] Sandra Delpe (Canada): [00:01:25] Good morning from Canada.It's currently 7:30 AM. So you are the first people I'd be seeing this morning, even before coffee. [00:01:35] Gerri Mortimore (UK): [00:01:35] Oh, gosh. [00:01:36] Sandra Delpe (Canada): [00:01:36] So I'm about an hour away from Toronto. I am currently on the board of directors for the Canadian haemochromatosis society. Just getting really involved since last year and it's great to be here with everyone. [00:01:56] Neil McClements (CEO, Haemochromatosis UK): [00:01:56] Great to have you with us. I'm sorry. We probably should have scheduled this a bit [00:02:00] later in the day. Let's make it work. Miriam, where are you? [00:02:06] Miriam Forde (Republic of Ireland): [00:02:06] I'm in Ireland and I'm in Southern Ireland in a small city called cork but my role is national and I'm the executive director of the Irish haemochromatosis association. [00:02:23] And I work very closely with our board. You have a very active board and many people would know Margaret mullet, who's our board member and our former chair. She's worked tirelessly over 20 years to grow and develop the membership and grow the organization as well. She's an amazing woman. [00:02:47] So I'm delighted to be able to work with her and other members of the board, especially this week, which is as we all know, world haemochromatosis awareness week and, all good [00:03:00] things are happening as I'm sure people have seen on social media and every country's Facebook page and Instagram and Twitter. [00:03:11] So, it's all very exciting and all heading in the right direction. So a great week for raising awareness. [00:03:19] Neil McClements (CEO, Haemochromatosis UK): [00:03:19] Thank you. Ma'am unwelcome. And finally Gerri. [00:03:24] Gerri Mortimore (UK): [00:03:24] Hello, it's lovely to see you all here today. I'm nearly rises without coughing. Well done. So I'm the education manager for haemochromatosis UK, and I'm actually here at the university. [00:03:35] I had to run and find a quiet room cause I've been in the atrium for world hemochromatosis week, two typed about haemochromatosis, interestingly, obviously at university we teach police and, and all sorts, but we do have a large health and social care and psychology group. And I have to say most of the people that have been at the table today have been nurses, nursing trainees and senior. [00:03:59] Actually some of the [00:04:00] lecturers came as well to say hello, which was nice,It's interesting and we'll obviously go onto this, but it's interesting how many people don't know about haemochromatosis, which is the whole point of this week. And thank you, Neil, for inviting me. [00:04:14] Neil McClements (CEO, Haemochromatosis UK): [00:04:14] Great. Well, we're going to do a whistle-stop tour, I think around the world. [00:04:18] I mean, one of the things that's quite noticeable about hemochromatosis is actually there's more that kind of unites us around this condition than perhaps divides us. But I'm going to turn, I think, first of all, to Sandra and Sandra, I was wondering how easy is it to get diagnosed with hemochromatosis in Canada? [00:04:37] How'd you go about it [00:04:39] Sandra Delpe (Canada): [00:04:39] Haemochromatosis? No sorry. I think it's quite difficult. The only way I found out I had hemochromatosis was that my brother did a 23 and me genetic test, and it came back with some of the markers. So he went and had the test done, and [00:05:00] then he contacted me to say, Hey, I think you should also get tested for this. [00:05:05] And lo and behold. So that was to April of 2015 when I was diagnosed officially .It had taken me two years for the diagnosis, just because there were problems with my family doctor. She had submitted the genetic test because it's not widely done. It's only done in places where they do research such as Hamilton general hospital. [00:05:31] So, and it takes a few months for that test to come back as well. And I think I digressed too much, but there's a very much a lack of knowledge of haemochromatosis within the community as well as with physicians, because my doctor was just very shocked. He says, I've never seen this before. I don't know what this is. [00:05:55] And that started my journey. [00:05:58] Neil McClements (CEO, Haemochromatosis UK): [00:05:58] So not easy [00:06:00] to get diagnosed in your experience, Diane, what was the situation in Australia? Is it any better. [00:06:09] Dianne Prince (Australia): [00:06:09] I think it probably, it sounds better than that, there are two distinct pathways for diagnosis and to have a diagnosis confirmed. So the first one is if you have another family member who's previously been diagnosed, you qualify under our Medicare system to have the gene test, straight up. [00:06:33] If you are the first member in your family to be diagnosed, then that may be a different pathway in that you will go to the GP. It may be with the generalized symptoms that are pretty common to a lot of other conditions. So it can take a long time as in Sandra's case, probably to be diagnosed. [00:06:54] So that's a similar experience, but for people around the world, I believe because it is it's tricky for the [00:07:00] doctors to say, unless they do the appropriate tests. So the second pathway really is to have iron studies done. Then not in a normal, regular blood test that we would go and have as our annual checkup. [00:07:12] So that's a challenge really. Iron studies are done quite often in women if the doctor suspects anemia and you know, then they're surprised, particularly in cases of young women, as in my niece’s case, when they find that they have high iron stores, in her case, she knew that their mother was a carrier. [00:07:36] So it wasn't such a complete surprise. It was to the GP. So those are the two current pathways. One, if you have a family member already diagnosed, you qualify for the gene test under Medicare. And the second one, probably the more common one is if you are first, then it will be through the process of two iron studies repeated after three to six months. [00:08:00] [00:08:00] If your serum ferritin and transferrin saturation is high on those two subsequent tests, then you're referred for the gene test. However, there is another possibility that we've just learned about what we've learned about it before, but it was repeated to them. And I can talk about that a little bit later. [00:08:22] Neil McClements (CEO, Haemochromatosis UK): [00:08:22] Interesting. Interesting. Miriam, how's it work in the Republic of Ireland? How do people go about getting diagnosed? [00:08:30] Miriam Forde (Republic of Ireland): [00:08:30]Well it’s relatively straightforward, in many ways, if you present with the symptoms your GP should do a blood test and check your ferritin an transferrin saturation levels. [00:08:47] If they're raised they would then recommend a genetic blood test to rule in or rule out, if you have the hemochromatosis [00:09:00] gene. And then as Diane said, if other, family members, especially siblings and parents have haemochromatosis, then your GP should highly recommend a genetic blood test and that would be for anybody over the age of 18, normally. [00:09:22] Neil McClements (CEO, Haemochromatosis UK): [00:09:22] Interesting. [00:09:24] Miriam Forde (Republic of Ireland): [00:09:24] But it does beg the question about GP awareness as well and I know we're going to be talking about that later. [00:09:33] Neil McClements (CEO, Haemochromatosis UK): [00:09:33]Something that's close to our hearts. I think Gerri, so Gerri how does it work in the UK for those people watching who are from outside the UK? How is it to get diagnosed if you have. [00:09:47] Gerri Mortimore (UK): [00:09:47] Well, as you know, we have the lovely NHS service here, but each county is slightly different and it's only as good as the GP that you visit. Unfortunately, some GPs are excellent. [00:10:00] Other GPs of course, Dianne you were going on about the generic symptoms. And of course, tiredness being one of them. So they'll often check your ferritin count, part of the iron indices for anemia, but they often don't check the transferrin saturation. [00:10:15] And obviously it's panels of bloods that you've put in electronically and transferrin saturation is the one that's missed out. And so the people who actually have a normal range of ferritin but they're transferrin is actually high are the ones that are getting missed here as well. Some GPS, like I said, are brilliant at diagnosing and getting them on the pathway into, cause we have to send them into acute care for treatment here. [00:10:42] But again, we have heard many stories where it's taken actually many years for a diagnosis, unfortunately. So I think really are making most of you around the country. I know Miriam's, story's a bit different, but yes, it does vary depending on what region you are within Scotland or Northern [00:11:00] Ireland or Wales, for instance. [00:11:02] Neil McClements (CEO, Haemochromatosis UK): [00:11:02] So I guess that begs the question. Iit seems to come down to some degree to luck, to getting diagnosed or having a family member who has been able to talk about the condition and has persuaded a GP to do a test, I mean, in each location, is there a genetic testing or screening program available? [00:11:23] So, maybe Diane in Australia, do you have a screening program for haemochromatosis? [00:11:30] Dianne Prince (Australia): [00:11:30] We do have tests night screening, which is the family screening for those who are first degree relatives to somebody already diagnosed. So that's available. There's not population screening, which is really what we're starting to talk about now in many countries. [00:11:44] And whether that would be genetic screening or biochemical screening, or, you know, other sorts of screening that might be implemented, there's a whole, if you like a whole conversation and in many countries genetic screening isn’t something that is promoted or seen to be a desirable thing. [00:12:05] It's a little bit different here in that there is a new research project at the moment, not for haemochromatosis but certainly for preconception screening for very serious conditions so that couples are aware and that will probably, if you like, pave the way for other genetic screening to happen, but we can get around it. [00:12:31] I think that we can get around it quite well. If there are other markets that can be, looked at on regular blood tests. I think that there's a, there's a fairly good, strong, bright future. Sooner rather than later. [00:12:47] Neil McClements (CEO, Haemochromatosis UK): [00:12:47] maybe you can help me, someone who knows a lot about these things more than I do was saying to me last week, that in Australia, it's actually not legal to test people under the age of 18 for haemochromatosis [00:13:00] because it's an adult onset condition, people under the age of 18 and not perceived as being able to give consent. [00:13:07] Is that true? [00:13:09] Dianne Prince (Australia): [00:13:09] I don't know where that came from. No, because we know people who are under 18 who have been tested. Yeah. We certainly don't, we don't encourage testing under 18, because it is not adult onset condition. And so population screening probably wouldn't come in for under 18 year-olds and 18 is a good market for us because 18 is also the age at which blood donors are recruited if you like from the general population. [00:13:36] So marrying those two together, you know, a screening program for young adults at 18, we're starting with encouraging them to become blood donors and to monitor the iron over time to us would be a good outcome if you like a good way of screening.But certainly we know, we did a young adults[00:14:00] awareness program a couple of years ago, and we recruited, you know, younger people who had already been confirmed with HFE mutations. [00:14:12] It does happen. It's not illegal. I don't know where that came from. [00:14:14] Neil McClements (CEO, Haemochromatosis UK): [00:14:14] Okay. Myth, rather than truth. That's good. I've learned something already and it's not even lunchtime. Thank you, Miriam. This may be myth as well, actually, but I seem to recall that in the Irish Republic, it's estimated that perhaps one in 80 or one in 83 people have the condition, is that true? Miriam Forde (Republic of Ireland): They are the figures that we use, simply because it's the data we currently have.We are working with the HSC and the department of health to do more research to look at those figures again. But, one in [00:15:00] 83 is what we're using as the most recent data in terms of the number of people who are predisposed to develop haemochromatosis. [00:15:11] And we estimate it's one in five people carry the gene but we are advocating for more updated research to be done. And we're also looking at creating a registry as well, because currently there isn't a registry in Ireland. [00:15:33] Neil McClements (CEO, Haemochromatosis UK): [00:15:33] Interesting. So is there population screening, is there cascade screening in Ireland? Miriam Forde (Republic of Ireland): [00:15:45] Well there’s no population screening program in Ireland at the minute, we are advocating for one we've engaged with a newly formed national screening advisory committee. It was set up in 2019 by the department of health. [00:16:00] And we're already on their list of interested parties to be considered for a population screening program. And they're making a public call later in the year as well. [00:16:12] So watch this space. [00:16:16] Neil McClements (CEO, Haemochromatosis UK): [00:16:16] That sounds very encouraging. Intriguing. Sandra, what's the situation in Canada? Do you have any form of screening for the condition? [00:16:24] Sandra Delpe (Canada): [00:16:24] Currently there is no you know, set screening program for haemochromatosis, we also tend to be separated, I guess, by our different provinces and what they believe. [00:16:40] So for instance, in British Columbia where our main office is the H F E H H genetic testing would proceed in patients of European descent with the persistently elevated serum ferritin and Tsat of greater than 45%, [00:17:00] or if the patient has a child, with the genotype, et cetera, et cetera. [00:17:05] And in Ontario where I am, again, you have to have someone in your family or you have to have a transferrin saturation rate of greater than 45% for women and greater than 50% for men and the serum ferritin is increased, or patients with first degree relatives.Again, our physicians don't really know to look for it or to check it out. [00:17:33] Usually people are not diagnosed with haemochromatosis like that. So as well, the two iron levels, the transferrin saturation and the serum ferritin are not regular tests. So it'd be wonderful if a doctor could just actually ask for that, but again, they have to get approval to run those tests. [00:18:00] [00:18:00] Neil McClements (CEO, Haemochromatosis UK): [00:18:00] Right. Okay. Gerri at the moment, [00:18:06] Gerri Mortimore (UK): [00:18:06] Unfortunately not, and it's not through lack of trying, I think all hats off to Neil at trying to get the government to stand up on notices. So unfortunately the blood tests that we're talking about, the ferritin and transferrin saturation cost pennies in NHS terms. [00:18:26]However, what we were trying to propose was that the well man woman check, which usually occurs when you're about 40, when you know they do your blood pressure, check your wee, we asked you about diabetic symptoms and usually take some bloods, was to ask for these simple blood tests to be added to this panel, which is pennies. [00:18:45] Unfortunately, NHS is all about the money. When you look at the whole UK as a whole and how many forties and 50 year olds that are happening every year, it runs into tens of thousands, if not hundreds of thousands of pounds when you add the pennies up. So [00:19:00] unfortunately it was a no on that front. So, I don't want to sort of speak out of turn and nearly might want to pick up on this. [00:19:08] But, the next thing really is to prove by health economic modeling is the cost to the NHS or to the government. If we don't diagnose people, now we're already postulating. How many people in the UK in Ireland have this? If we can then put forward an economic model to show that how many of these might develop iron overload and obviously the latter symptoms of cirrhosis and cardio myopathy and all those horrible, what we call co-morbidities or morbidities, which will cost their NHS millions of pounds to treat long-term. [00:19:47] Then that is a reason that they will galvanize into action, but we need the evidence first. Neil I don't know if you want to say more. [00:19:55] Neil McClements (CEO, Haemochromatosis UK): [00:19:55] Yeah, well, this is a subject close to our hearts because actually at the [00:20:00] beginning of the year, we published this report, which I don't know if you can see that, but we say it's time for change. [00:20:05] We are advocating genetic screening in the UK in adults, in particular circumstances. And in the UK, we have a thing called the UK national screening committee, which is a very August body of about 30 or 40 very eminent professors. And we made this submission to them back earlier this year and they discussed it in March. [00:20:29] And we're not sure quite what happened, but basically they have declined to publish their report. Thus far. Partly because we've had elections in Wales and Scotland, and we have a thing called a per period where government departments and the department of health are not allowed to publish things during the election period, but that finished about a month ago. [00:20:51] And they're unable even today to be able to explain when they're going to share their great thinking about all of this, but our assumption is they're [00:21:00] not going to, agree with us on this. And so we've made some alternative arrangements.Just on that point, we've got in the UK in theory people who have genetic haemochromatosis and have a genetic test proving it, their first degree relatives should be offered genetic testing, right? [00:21:23] That's the cascade screening model, which I think Diane is referring to. However it mostly doesn't happen. And there's loads of reasons for that mostly to do with GP awareness and money. So, we as a charity actually last month, decided to try and do something about this. So we now offer a genetic testing service for our members. [00:21:44] And it's been very interesting. We will be talking a bit more about this at the all party parliamentary group in a couple of weeks time with policymakers at Westminster, but basically over 50% of people who have requested a test kit [00:22:00] have said that their GP refuse to test their relative. Over 50% of GP said they wouldn't ask the relative, even though they had a history of it in the family. [00:22:11] The other thing which is quite interesting is we've just had some of the early data back and we turn these tests around in about five days compared to the NHS, which is about three to nine months. But for some reason it takes a long time in the NHS but we have a lab where we do it in about a week. [00:22:26] But the first batch of tests, four in 10 people who were tested, were found to have genetic haemochromatosis and they did not realize they had it. Four in 10 people now, that demonstrates the value of cascade screening, but it also raises some interesting policy questions for the NHS and our department of health as to why it happens so infrequently because those people who've been diagnosed, we've now managed to get them onto a care pathway, which hopefully leads [00:23:00] them to a long and happy life where they don't have to worry about some of these unpleasant things like liver cancer and diabetes and heart disease. [00:23:07] So, we're very strongly in favor of screening in certain circumstances, but alas not quite getting the message across at the moment. I wonder maybe you could just turn to look at, how does treatment work? So, Sandra if you're diagnosed with the condition. How'd you get venesection, do you go to the blood service? [00:23:32] Do you go to the hospital? Does your primary care practitioner, how does it work? How does treatment happen? [00:23:37] Sandra Delpe (Canada): [00:23:37] Well, for me, and I think I'm a standard sort of patient with haemochromatosis. It was venesection well, phlebotomy, we call it phlebotomy over here, phlebotomy at the local hospital and of course, you know, it starts off you're there a lot. [00:23:58] And then it tapers [00:24:00] down. In the cases of people, I think that their iron levels are not as high as mine were that they can go and there we have Canada blood services as a partner with haemochromatosis. So the idea is go and donate blood. If that's going to keep your levels well within range. But other than that, usually, for me, because I've got co-morbidities now, diabetes, et cetera. [00:24:27] So I am not eligible to give blood. So if I have to have a phlebotomy, it would be at the hospital. [00:24:36] Neil McClements (CEO, Haemochromatosis UK): [00:24:36] Okay. Okay, Miriam, how does it work in the Republic? [00:24:45] Miriam Forde (Republic of Ireland): [00:24:45]Well venesection treatments take place in a mix of settings really, in GP surgeries and hospitals, mostly acute hospitals and through the Irish blood transfusion clinics [00:25:00] [00:25:00] both fixed and mobile clinics. And, most recently the Irish blood transfusion service has announced that they're now accepting where certain criteria are met. They're accepting the blood of over seventies and that's just a recent announcement and that's made a big change for people who suddenly or abruptly found that they couldn't, any longer access the IBTS clinics. [00:25:32] And of course, I know we're going to discuss it shortly as well, because of COVID, it has really made it difficult for some people in some counties in Ireland, to access, not just IBTS clinics, if they don't meet certain criteria, but also, they have been impacted negatively where hospital appointments have been canceled or postponed. [00:26:00] [00:26:00] But getting back to the Irish blood transfusion service and their clinics where haemochromatosis patients can have their venesections done there, as we all know, it's a win-win situation for everybody. And so great that all the blood goes back into the national blood bank, GP’s as well, most recently in the last maybe year and a half are more incentivized. [00:26:30] They are now paid through a renegotiated GP contract to deliver more venesection treatments to patients. So we're working with the Irish college of GP’s so that the percentage of GP’s in Ireland who provide venesection treatments can be increased. I mean, there's still obstacles there for GP’s. [00:26:57] We're speaking to GP’s every week and we [00:27:00] know what the obstacles are. So we're working with the HSE and the department of health to look at some of those. And it may seem very simple to people but even done to GP’s trying to source blood banks and needles, and also sourcing blood disposal services, especially rural GPS. [00:27:24] I mean, these are very real obstacles to them in providing venesections for their patients. So, you know, we don't underestimate what those obstacles are and then a couple of years ago, there was a pilot of venesection program delivered in a nurse led venesection clinic in a primary care center near Gallway. [00:27:51] But, we had high hopes that that was going to be rolled out nationwide, but it hasn't. So [00:28:00] that's how treatments are delivered in Ireland. [00:28:05] Neil McClements (CEO, Haemochromatosis UK): [00:28:05] We’ll turn in the moment to Gerri, but in the UK, the NHS is free at the point of need or free at the point of use. In the Republic are people paying for the venesection appointments. [00:28:19] Miriam Forde (Republic of Ireland): [00:28:19] Yes. Well, it's 80 euro for venesection in some public hospitals and we have hospital groups in Ireland and some hospital groups have charged and others don't, and there isn't always rhyme or reason as to why that may be the case. We understand a lot of it is historical, depending on whether venesections are delivered in outpatient departments or day units, et cetera. [00:28:57] But there have [00:29:00] been some recent developments on that. We had a very good productive meeting in March with the minister for health, Steven Donnelly. And as a result of that, now we don't have it officially, at least one hospital group has actually waived the AGU rural charge, which is fantastic, especially for newly diagnosed patients where, you could end up with a financial bill of over 300 euros per month, which is a real struggle financially for people. [00:29:37] So you know, at least that's one very good outcome so far, from the meeting with the minister of health. [00:29:46] Neil McClements (CEO, Haemochromatosis UK): [00:29:46] Well, that sounds like tremendous progress and still a work in progress, but still moving forwards. Right. Diane, how does it work in Australia? How do people get venesections? [00:29:58] Dianne Prince (Australia): [00:29:58] [00:30:00] Mostly people would go to the red cross lifeline, which is the donor centers, the regular donor centers. [00:30:07] If they've been diagnosed with genetic haemochromatosis their doctor, their GP would refer them. It's an online referral process through an app called the high ferritin app. And that was developed really in response to quite a few years ago now, but in response to his involvement with the red cross because the paper trail to get a personal registered prior to that as what we call a therapeutic donor caused a lot of delays. [00:30:38] And, so this high ferritin app was developed, the issue really comes down to GP knowledge of the app, how they find out about it. I was at a meeting only a couple of weekends ago where it was a GP conference. We had a standee and the number of GP’s that still didn't know I was at the [00:31:00] red cross would take them [00:31:01] and the referral process was just really gobsmacking to us because we've done a lot of work in terms of educating or providing materials, et cetera. So it was a bit of a surprise, but that's the referral process to the red cross. And we recently did a survey of members and other people which showed that the red cross is still the major place for people to go. [00:31:29] The only people who aren't eligible for, now in most cases, the blood is used. In some cases, the blood is discarded all used for research purposes. In some cases, people aren't eligible simply again because of co-morbidities. If they present a potential medical emergency risk, then they won’t be taken, the age for donors has also increased. [00:31:54] So now I think, I should have checked this before, but I actually think it's up to eighty. [00:32:00] We find that a lot of older people are telling us they don't need to have venesections as frequently after 75 or so. So that's a good thing. The next most common place where people haven't been a section is in the GP practice. [00:32:13] And that's another area where, again, as Miriam has already said, you know, GP’s can find it difficult sometimes to source the bags. Know the process, they're not doing them as frequently, so they're not you know, and the blood's being discarded it’s not being used. So we're quite, we're really pleased actually, that it's about 4% of the national blood supply. [00:32:38] Here is from therapeutic donors. There are about 10,000 therapeutic donors a year that are registered with the lifeblood Australian red cross. And,that number is increasing and we've worked, you know, again, fairly closely with the lifeline people to get those numbers and to try and track it. And then there were a few people that would go [00:33:00] to community hospitals. [00:33:02] Again, it might be a day center, an oncology center, or even an infusion clinic and that's it. And there's variations in terms of what people pay or don't pay or how much they pay. The survey that we did, some people pay up to about $150 or more. If they go to a pathology center, for example, where they would normally do a blood collection, it is generally a higher fee. [00:33:25] So, there is variation, but fortunately, most people qualify for the lifeblood, which is the ideal again because it's a, win-win, people are very happy for the blood to be used. Yeah. [00:33:40] Neil McClements (CEO, Haemochromatosis UK): [00:33:40] Interesting, Gerri in the UK, how does it work? [00:33:47] Gerri Mortimore (UK): [00:33:47]Well once you're successfully diagnosed. You're usually transferred in to what we term secondary care. [00:33:53] So the hospital setting, you're either referred to haematology because obviously iron overload in the blood [00:34:00] or you're referred to hepatology. And the referral process is if you have abnormal liver function tests and abnormal scans, or a ferritin, that's over a thousand, you're automatically refer to hepatology for further tests and investigations. [00:34:16] So there's two routes. Once you're in and there's an issue because once you get referred in from the GP, there's obviously the NHS wait to be seen by the clinician in secondary care, which can be very quick. But it's called an 18 week wait target where people should be seen within sort of 18 weeks. [00:34:36] But we, we know because of freedom of information reports in some instances, certainly in Northern Ireland, we know it's over a year, two years, even three. To be seen, which is quite worrying if, if you've got high iron levels. So there's a bit of a dichotomy because you're either seen by hepatology or hematology and you're sent to obviously different units. [00:34:59] So I think [00:35:00] Diane's already mentioned, you know, there's oncology units because they take blood or they're very good at putting counselors in. That's quite terrifying for people who are sitting alongside very ill patients on chemotherapy and that causes a bit of anxiety. We have day-case units and surgical day-case medical day-case, which they can be sent. [00:35:23] So it depends on the region again, as to which, which pathway you follow and obviously on your blood tests. Obviously once you are de-ironed and that's the weekly venesections and you, and then you're in the maintenance phase. And at this point you can then donate blood at the blood transfusion service. [00:35:42] However, there are stringent criterias. So if you're over a certain age, or as Sandra's already alluded to this other co-morbidities or you're on certain medications. They're very strict and they won't accept your blood. Unfortunately, the majority of our NHS blood taken in hospitals [00:36:00] is disposed of it's not used, which is just a disaster, really isn't it. [00:36:04] And I think that's the next big hurdle we have to try and cross, but again, it boils down to cost and facilities and certainly at the labs, because we have a huge lab in the trust I work and they just don't have the personnel to be spending down bloods to use and to blood products. But it's something that has to be looked at because it's such a wasteful resource, isn't it? [00:36:25] It can make you weep thinking about it. But that's the issue, and this is ongoing issues again, that haemochromatosis UK are trying to sort. [00:36:36] Neil McClements (CEO, Haemochromatosis UK): [00:36:36] Yes. Thanks Gerri we're going to just pause for a moment for those people who are attending, who would like to ask a question if not familiar with zoom, there's a little Q and A button at the bottom of your screen. [00:36:52] If you click that and you want to ask a question to the panelists,start typing now, and we'll [00:37:00] get around to you in a few minutes time to ask some questions from the floor, if I can put it like that. But I wonder, while we're waiting for some questions to come in, I mean, what is the biggest challenge around genetic haemochromatosis worldwide? [00:37:17]I mean, we seem to have lots of challenges in the UK. It keeps us very busy, but, I wonder, Sandra, if I came to you first, I mean, what is the biggest single challenge for the haemochromatosis community in Canada at the moment. [00:37:36] Sandra Delpe (Canada): [00:37:36] I think it's awareness again, people aren't recognizing the symptoms, or they're not aware that this disorder even exists. [00:37:45] Doctors don't really recognize the symptoms and link them together to point to haemochromatosis or to even investigating hemochromatosis. They don't have it on their minds. So [00:38:00] they think of a whole bunch of other reasons why you're sick. Let's put it that way because as everyone knows, the haemochromatosis is so silent and so insidious, it causes a lot of damage before you even realize you have something that's severe. [00:38:17] So we need to, and Canada is kind of a very broad let's put it that way. Just, geographically. We are not centered in one spot. So getting the information where it needs to be, that is our biggest challenge. [00:38:35] Neil McClements (CEO, Haemochromatosis UK): [00:38:35] Thank you, Miriam in the Republic. Your biggest challenge? [00:38:41] Miriam Forde (Republic of Ireland): [00:38:41] I suppose our biggest challenge has really been how COVID has impacted on every area of the health service in Ireland. [00:38:51] So haemochromatosis patients have seen their hospital appointments, canceled, postponed, lack of information as to when [00:39:00] their next appointment might be and then access to GP’s is also very difficult because, for example, there are some counties in Ireland, believe it or not, very small countries, mind you, where we cannot give the name of a GP who can give somebody, where we can get an appointment, with that GP and that that GP can give venesections to patients. [00:39:34] So that is our challenge. I mean, we're working on trying to get a definitive list of GP’s, all GP’s throughout Ireland who deliver venesection services. But we don't have that yet. I mean, there are several reasons why one of them given is GDPR, issues around GDPR, et cetera. But [00:40:00] right now, that's one of our challenges. [00:40:03] And also the financial one that I mentioned earlier in terms of equity of access, to any sections where really haemochromatosis was, on a defined list of businesses, we could get all of the charges waived for venesection and just back to what Sandra said as well, raising awareness continues to be a challenge, but on the flip side, presents a great opportunity for us to, you know really continue and step up the pace [00:40:43] every year with raising awareness, keeping the momentum up and using every opportunity for public engagement and awareness, and also working with the medical profession as well and increasing awareness amongst them. [00:41:01] [00:41:00] Neil McClements (CEO, Haemochromatosis UK): [00:41:01] Interesting. Thank you, Gerri in the UK, what's our biggest challenge. Would you say? [00:41:06] Gerri Mortimore (UK): [00:41:06] We have a few, and actually I'm going to echo Miriam. I think absolutely right. COVID really floored us here in the UK. I know you've been quite lucky in Australia and Canada, but it completely, we weren't allowed to bring patients in for treatment. So people who were even on a weekly venesections with high ferritins were left for months and months. [00:41:29] Can you imagine the worry and anxiety that caused? Things are picking up. It does vary. We call it postcode lottery, but it does vary which trust you're in as to how quickly you're having venesections and again, Miriam, you mentioned I loved it, equity to access, I think that's right. [00:41:49]It does vary around the UK as to how good your access. I think for me, as I've already mentioned blood donation, I just think it's a [00:42:00] criminal offense that we're throwing blood away at the hospitals when it can be used. But one of the biggest, I guess, bee in my bonnet and I think I'm fair I can speak for hemochromatosis. [00:42:11] UK is transferrin saturations. And most units in the UK are nurse led and this was done by default, not design. So nurses who took blood or healthcare professionals that took blood or suddenly said, oh, here you go. You can start doing the venesections. Now some of them have very little understanding of actually haemochromatosis. [00:42:30] You've got poor patients coming in for the first venesection. And they're not really advised, might have lots of questions because they haven't spent a lot of time with the consultant or might be on a phone. Yeah, you've got this lifelong condition by we're going to start treatment and it's, it's increasing awareness for nurses at what information to give to patients that first port of call. [00:42:52] But for me, most units, they will do the venesections according to ferritin levels. So they'll bring them nicely [00:43:00] down to ferritin of 50 or below. Okay. Maybe a bit higher than some of the older populations or ones who have heart disease, but they completely ignore the transferrin and saturation. And we obviously have a lot of females who have this condition whose ferritin is within the normal limits, but actually they have high Tsats. [00:43:18] And in these instances you need to bring the ferritin right down, maybe borderline anemia, if they can tolerate it, to get the Tsats down. And this has not been done well in this country. And, we are obviously doing webinars to GP’s, but we actually need to hit target to the hospital audiences as well to try and get the sport into mainstream treatment. [00:43:41] I think that's fair to say. [00:43:45] Neil McClements (CEO, Haemochromatosis UK): [00:43:45] Okay, so Diane inspire us. Do you have any challenges? [00:43:55] Dianne Prince (Australia): [00:43:55] Hi, Mira. Everybody else's hugging navel. So, [00:44:00] the one that stands out really is, again, a delay in getting a confirmed diagnosis. So even though there are pathways, you know, that whole issue around GP awareness and we know the process, we know what has to be done and it's there for them, but do they know about it? [00:44:17]And how do we get that information out to GP’s. So, you know, we knock on all the doors we can, but, and there are now what we call primary health. GP practices are organized or aligned with what we call a primary health network because primary health care is federally funded. If you like, whereas the hospitals in the secondary care is state based. [00:44:42] So we're really talking about primary healthcare for haemochromatosis in most instances, so primary health networks. Now, many of them have what we call a haemochromatosis health pathway. So there is something that the doctor would log on. And today in a meeting, there was a suggestion that we [00:45:00] actually get, if we can, one of those health pathways up onto our website, and it's really available to GP’s themselves, to log in and to look at it. [00:45:10] But, we haven't tried to get one of those health pathways up so that patients themselves will know what's in that pathway and can also then ask for it. And I guess the other challenge really is just the patient feeling confident enough to challenge and to ask the doctor and to know enough about it. [00:45:34] So you've got the GP awareness on the one side. The training for practices, general practices in venesections, primary care nurses as well in terms of undertaking a venesection because the experts are the lifeblood or the red cross or the pathology centers, but most people are going to primary care settings as the alternative to lifeline. [00:45:57] So, you know, training those people in those settings to [00:46:00] do the bloods. So the delay in diagnosis, educating the professionals in terms of what's out there, what they can do then also supporting patients in terms of having them feel confident in going to the doctor and saying, well, this is my health I'm talking about, and this is what I know about it. [00:46:21] And, you know, would you please read this or refer me to somebody else or whatever. So having that support for patients to take responsibility for their own text, the number of people that ring our information line. For example, we have a free as most of you would have, an information line, we operate five days a week and the number of calls that come in and people will say and our questions are, we will say, well what are your iron levels? [00:46:48] That's one of the questions, is sharing progression, transparent, saturation, you Jane and Tom. Have you got a copy of your last blood test results in front of you? No, no, no, no. My doctor doesn't give it to me. [00:47:00] Well, have you asked for it? You're entitled to get a copy of the blood test results and then keep them. [00:47:08] One of the things that we've done is, we copied the Canadians on this, we actually developed an app called the my iron manager and people can record as in the Canadian app, you know, their results, their appointments their next venesection dates, et cetera. So they can track all of that. But also we have [00:47:29] a searchable by postcode list of all of the venesection locations that we know about so that a person can go in and put in their own postcode, because that was another common question we've got on the information line. You know, I can't go to the red cross or I'm on holiday or whatever, where can I have the venesection done? [00:47:46] And we had a spreadsheet, clunky, old spreadsheet with, you know, venesection providers, et cetera, and GP’s that we might refer people to. But now we don’t have the GP’s on that app, but we certainly have the venesection [00:48:00] patients. And we have a fade from the lifeblood, locations as well. So that's been a positive thing because people can take a bit more control of their own pathway if you like. [00:48:14] There was one of a young GP that did research a couple of years ago now, she recorded at one of her conferences. She did a study on people in her area, which is a remote, rural area in Queensland. And a lot of the patients there really wanted to be partners in their own care. [00:48:33] They really wanted to, you know, manage it as best they could and give it some direction. So I think that they're the chair, you know, it's both on the professional practitioner side, but it's also on providing some sort of support or guidance for people who are looking at. [00:48:51] Neil McClements (CEO, Haemochromatosis UK): [00:48:51] Hmm. Interesting. [00:48:53] Yeah, I think we have similar, similar concerns in the UK. I'm going to start taking some of the questions [00:49:00] that have come in on the Q and A. So if you, if you've got a burning question, hopefully you can see the screen that the Q and a button is hopefully towards the bottom of your zoom window. And, if you want to type in a question there, we'll try to get around to getting it answered. [00:49:14] But just on that point about Tsat, I wonder, I mean, in the UK in theory, people should be working towards a Tsat below 50%, Miriam in Ireland. Is there a Tsat kind of guide, are people working to something like that? [00:49:35] Miriam Forde (Republic of Ireland): [00:49:35]Yeah It would it be the same. Certainly, the Tsat is the most important measure, you know, ferritin alone [00:49:46] isn't adequate enough but the Tsat is exceptionally important. So we'd be very similar to yourselves, [00:50:00] [00:50:00] Neil McClements (CEO, Haemochromatosis UK): [00:50:00] Sandra, Canada, Tsat. [00:50:05] Sandra Delpe (Canada): [00:50:05] Greater than 45% for women greater than 50% for men. It's very interesting listening because our general practitioners are not, if they actually make the diagnosis automatically, they're sending you elsewhere. [00:50:24] So it's either to a gastroenterologist or I think a hematologist. So far I've only seen the gastroenterologists. So, again, it's the awareness of the doctors, but to listen to what you're planning it's phenomenal. And I'm writing all these notes down. [00:50:45] Neil McClements (CEO, Haemochromatosis UK): [00:50:45] and Diane in Australia Tsat, is that a kind of foreign concept for GP’s or has everybody got that? [00:50:53] Dianne Prince (Australia): [00:50:53] In terms of, you know, the diagnosis and then the start and commencement of treatment, the measures are [00:51:00] similar to the Canadian mentions in terms of the ideal for venesection and the treatment and the target, really 50 /50 is what, you know, internationally people are saying so 50 serum ferritins, 50 transferrin saturation. [00:51:22] But we know it’s very difficult to shift the transferrin saturation through venesections you know, we continually hear people. So, you know, there are some new things that we're hearing about now, which may influence that in terms of other therapies, you know, in the future. But certainly, venesections seems to be, I know, and I think it was Gerri who mentioned before that, you know, you can be venesected lower than that, but there's the risk of anemia. [00:51:49] So, you know, there are certain levels that we know is that when they were a pipe, is that have been, you know, research that's been done on safe levels for venesection but, [00:52:00] in our experience from what we hear that is very difficult to actually get that transferrin saturation down in venesection. [00:52:07] Neil McClements (CEO, Haemochromatosis UK): [00:52:07] In the UK, we find GP’s often are just oblivious to Tsat actually something we've started doing. [00:52:14] And if you can see that, but we have a campaign with GP’s Tsat matters with the ferritin and the Tsat levels on them and their post-its and you'd be amazed how easy it is to have a GP eating out of your hand. If you promise them a few packs of post-its they are remarkably effective and they sit on their desk and they use them for all kinds of things. [00:52:37] And hopefully, we're hoping that through a process of osmosis, they will get this Tsat matters and also the right levels. So that's something that haemochromatosis UK are doing. We're sending out thousands of these every time we interact with the GP. Post-its, that's where it's at. It's not very high tech, but we think it's beginning to work. [00:52:56] I wonder we might turn to another [00:53:00] question actually from George, George has asked the question, how much is the blood test in Australia and Canada? So it's a few pennies for a ferritin test in the UK, but do we know how much it costs in Australia and Canada to have the blood? [00:53:18] Sandra Delpe (Canada): [00:53:18] I'm sorry. Do you mean for the patient? [00:53:23] Sandra Delpe (Canada): [00:53:23] It doesn't cost anything here. Right? [00:53:28] Dianne Prince (Australia): [00:53:28] It's funded under Medicare here as well. So typically the patient wouldn't be, there might be a gap sometime, but to be clear it wouldn't be a cost. [00:53:36] Neil McClements (CEO, Haemochromatosis UK): [00:53:36] Yes. So there's really no reason why people shouldn't be getting these tests done. [00:53:40] If they're clinically required, then that's what I'm understanding from that. Okay. I've got a question here from Isabel, which, and I think, and I'm guessing and apologies if I’ve got this wrong. I think Isabel might be in the UK. So I'm going to pass this question over to Gerri who's our advanced nurse [00:54:00] practitioner working with us a couple of days a week. [00:54:03] Isabel is saying she hasn't had the second dose of the AstraZeneca jab yet. Is it safe to start venesecting? . [00:54:12] Gerri Mortimore (UK): [00:54:12] Yes, definitely. So, what we say is just, if you do have the jab, you have to wait at least a week, possibly two till you have your first venesection. So it's about a week to get your antibodies up and running. [00:54:28] So you can have venesections, cause you've already had your first job as long as a week or two have elapsed since you've had that injection. And then you can carry on having venesections up until the point of your next injection. And then you'd hold the venesections, until a week to two weeks have lapsed. [00:54:48] Neil McClements (CEO, Haemochromatosis UK): [00:54:48] So the answer's yes. Get venesecting and then get your jab. I've got a question here from mark and mark is in the UK, but he wants to live in Canada. [00:55:00] So, Mark's question [00:55:05] is if he was to relocate to Canada, how would he go about actually getting into the healthcare system? He has haemochromatosis he's currently in maintenance in the UK. How does it work in Canada when you move or you immigrate to Canada? [00:55:23] Sandra Delpe (Canada): [00:55:23] Well, if you come over and I guess it just depends on if you're coming over on a visa or if you're coming over as a permanent resident or Canadian citizen. [00:55:33] So I'll answer for the permanent resident Canadian citizen, because I honestly don't know. I think he would be on your own if you're under a work permit or a study permit. But I'm not a hundred percent sure, we do have kind of universal health care, I guess you would call it, you would get a health card for whatever province you happen to go into. [00:55:54] As long as you're coming in again, as a permanent resident, and then you would be covered for, [00:56:00] venesections and a physician and hospitals and all that wonderful stuff. [00:56:07] Neil McClements (CEO, Haemochromatosis UK): [00:56:07] Great. So, mark, hopefully that gives you some, some incentive and Sandra did you want to plug your websites? Cause he needs you guys doesn't he? [00:56:16] Sandra Delpe (Canada): [00:56:16] No worries, mark. If you're coming over, it's too much iron, all one word dot CA. [00:56:27] Neil McClements (CEO, Haemochromatosis UK): [00:56:27] So, if you do go to Canada, do hookup with the Canadian association and Sandra and her team, I'm just going to end the poll now actually, hopefully I'm going to press a button and it's the right one and we can see where everybody is in the world. [00:56:47] So, hopefully you can see on the screen now people shake their heads that they can't see. The results of the polls. So we've got a 63% of people watching today are in [00:57:00] England, 3% in Wales, 10 % in Scotland, 5% from Canada, which is very good given it's early, early morning, 8% in Australia, also [00:57:11] very good cause it's late in the evening. And 5% from the Republic of Ireland and 8% from elsewhere in Europe. So, just to everybody who's watching, you're all very welcome. And we're delighted that you've been able to join us. We’re gonna wrap up shortly, but I thought perhaps we might try and conclude on a positive note. [00:57:37] So we've talked about some of the challenges that we all face in our respective, geographies and locations, but I want to just very briefly to tern to each of our panelists and just to ask what, what is the greatest opportunity for the haemochromatosis community in your area. And maybe I could direct that to Miriam, first of all. [00:58:01] Miriam Forde (Republic of Ireland): [00:58:01]Well I think the greatest opportunity for us is just to continue raising awareness amongst the public and many more people need to be diagnosed. And our mantra, the same as yourselves is early diagnosis saves lives. We see a great opportunity as well to build on raising more awareness within the medical profession. [00:58:26] And we're very excited about a few different education programs that we know we can do with the Irish college of GP’s and other health professionals. And we also see opportunities in our communications with our membership and with a wider public, especially around digital and online communications, spreading the message, raising awareness, developing a new E newsletter. [00:58:58] Getting more [00:59:00] information about haemochromatosis out there. And I suppose in terms of funding, we see some opportunities around corporate funding into the future as well. We're a very small organization, so we just want to explore more opportunities there as well because the more funds we can raise, the more we can develop, e-learning programs and educational platforms for GP’s, nurses, and other health professionals. [00:59:36] At the moment we don't have the funding for that, but we're very excited about developing our communications more as well into the future. [00:59:48] Neil McClements (CEO, Haemochromatosis UK): [00:59:48] Great. Diane in Australia, what is the greatest opportunity for your committee? [00:59:54] Dianne Prince (Australia): [00:59:54] I think there are a couple, one is research that's been done by [01:00:00] professor Olynyk, which shows that of the 12 million regular blood tests that happened every year here. [01:00:06] If you look at main cell volume and main haemoglobin volume, that's a very strong indicator that the person might have haemochromatosis. So we can go down that pathway. It's a great opportunity and be looking more at that. I'm trying to promote that. I think over the last 30 years, that's about as long as the association has been operating in Australia and in most other countries too. [01:00:30] I think it's about the same sort of period of time. We've come a huge way. And I really feel now that we're on the downhill slope, things are accelerating fairly quickly. The UK study, the Exeter study with David Meltzer and his team has provided a huge amount of information and evidence that, you know, this is real, it affects a lot of people and we need to do something, we know what to do. [01:00:56] And so it's really now, the challenge is getting out there. And I think one [01:01:00] of the opportunities really is to work with other groups. We're just starting that. So working with other groups with, for example, the arthritis associations, the liver associations in particular, those two groups, diabetes as well, to make sure that all of our messages on our social media platforms is shared widely, working with our politicians as well. [01:01:23] Members of parliament to make sure that the policy is the way that we want to debate and the right direction or support things. And, in terms of funding, again, working to provide, to show that we are a if you like a good, what's the word. I'm just trying to think a good credible organization that we deliver on what we promise, you know, so that if the government , we've had some funding in the last couple of days will shaping education from federal government. [01:01:57] And we linked that to chronic disease [01:02:00] prevention. So it's really working within the department of health or with the department of health to make sure that the education materials are there, that we can influence those materials and influence that policy. And the other thing I'd like to say is to acknowledge that main Australia, we are a completely volunteer organization and we've been that way for forever since inception. [01:02:24] So one of the challenges is actually sustaining the organization because we don't get any funding for the back office operations, for example, or any promotional stuff, unless we apply for a grant and applying for a grant. In any government situation comes with lots of ticks and ties and reporting them. [01:02:49] And it's fraud, it's public money. We don't dispute that, the need for it. But, it does take a lot of work and a lot of time, but it's worth it. It's worth it in the [01:03:00] end. So, you know, there are lots of opportunities and we're really quite excited. We're really, really, really happy with the way the world work is going. [01:03:07] We think that the amount of you know, awareness it's being raised at the moment is fantastic. And we're actually starting to, I think, build off each other, you know, in terms of other associations around the world to other members of HI and the European Federation, really working together. I mean, it's the mantra, together we’re stronger it's true. [01:03:32] You know, we really need to push that and to say, we can learn from each other and we can work with each. On things that are common interest, [01:03:42] Neil McClements (CEO, Haemochromatosis UK): [01:03:42] Thank you, Gerri. What's the greatest opportunity for the haemochromatosis community here in the UK? Would you say? [01:03:51] Gerri Mortimore (UK): [01:03:51] I think it really echoes what you've all said as, as the panelists really that it's education I think is for Mt. [01:04:00] [01:03:59] You need to educate unfortunate health professionals, nurses, I think haemochromatosis UK, we're a small charity, but we pack a big punch. We, you know, we devised in a section best practice guidelines, which is available on the web worldwide. It's been downloaded many countries and that's because of sort of research that we've undertaken, which showed shortfalls in how many trusts actually had venesection guidance to the staff. [01:04:28] And it's quite shocking, isn't it? That people are doing these procedures. There's no standardized guidance. So we sort of rectified that. And I think that's huge. I think the charities informing policy, we're members of the all-party parliamentary group, so to actually lobby government and do get the government to take notice with letters to the secretary of state for health, to ask about raising awareness for haemochromatosis to ask simple blood tests, being added to well man woman checks. [01:04:59] Um, [01:05:00] You know, I think it's quite phenomenal what we have done in quite a short space of time. Education like we is key, I obviously do GP webinars and I've actually, the haemochromatosis society devised an education module for nurses or healthcare professionals. This has been endorsed by the Royal college of nursing and you can access it through the haemochromatosis website. [01:05:26] So again, it's to raise awareness for nursing staff and of course for any healthcare professional whether your medical nurse, physio, you need to prove that you are keeping updated and you need this to prove to the nursing midwifery council that you're up to date. So this course you're actually awarded CPD points, which you can actually show and get a certificate that you've done this course. [01:05:51] And it's quite good little course I think, if you ever want to look at it, you can access it on our site. So,I think education, I think that's the way. [01:06:00] Especially about transferrin saturation. [01:06:04] Neil McClements (CEO, Haemochromatosis UK): [01:06:04] Not wishing to blow our trumpet to too firmly or too loudly, but actually that e-learning course was accredited about a month ago. [01:06:11] And we have already trained over 150 nurses through that E-learning and we've kind of, it's taken us back actually. Just how well people have responded to it. Nurses are saying to each other, have you heard of this thing? No. Well, if you do this course, you can get four CPD points and that helps you towards your revalidation criteria. [01:06:32] So we're managing to reach people who perhaps wouldn't normally know anything about haemochromatosis, but having said that there are about 500,000 nurses in the UK. So we've trained about 150, and we've got about 500,000 more to go. So we can't be too overconfident about this, but we're on the way. [01:06:51] And maybe to coin Dianne’s phrase we're on the downhill run there, perhaps with the nurse education. I wonder if I could turn [01:07:00] finally to Sandra, I mean, Sandra in Canada, what is the greatest opportunity for your community? [01:07:07] Sandra Delpe (Canada): [01:07:07] Well, I guess considering that, so few people actually know about haemochromatosis. [01:07:12] There's nowhere to go but up but COVID, while it's been very challenging and a very frightful thing has also shown us a way to get together that's easier, you know, instead of having the coffee meetings, you know, you have to set them up somewhere. So many people can't come and physically, et cetera. [01:07:35] So now we've used zoom and it's really opened up a world. Like, look, I'm talking to people across the world altogether here. So that's our greatest, I think benefit, or what I can take out of here. And I have a whole page of notes that I've just written and I can't believe the amount of information in such a short amount of time [01:08:00] that can be shared. [01:08:02] So I think that's our greatest opportunity in Canada. [01:08:04] Neil McClements (CEO, Haemochromatosis UK): [01:08:04] Well, maybe we should do this again and not wait till next year to do it. I just wanted to thank all of our panelists for joining. We've kind of run to time, but I just wanted to flag up a couple of things that are going on here in the UK, since about 70% of people watching are UK based. [01:08:25] For those of you who are not aware, we as a the charity have been very, very heavily involved in lobbying the blood donation services. They're actually done here in the UK. So the policy in Northern Ireland is different from Scotland's policy and Scotland is different from Wales. Wales don't do it the same way as in England. [01:08:43] But we did manage at the beginning of the COVID pandemic to actually fix a couple of problems for the blood donation service. When the pandemic started, they saw a drop of about 15 to 20% of blood donations. And that was because people were being told by the government [01:09:00] to stay at home, not travel. [01:09:02] We had a very effective lockdown, but that meant that actually there wasn't enough blood in the system, literally. So we went to NHS blood and transplant. We said, well, actually, we've got a problem anyway, because our community have been told not to go for their venesection appointments for the same reason. [01:09:18] Why don't we get together and fix this. So, anyway, we've got a special program in England. We have a similar one that's set up in Scotland and we're working on one in Northern Ireland to actually make it possible for people with genetic haemochromatosis. To be regularly venesected at a blood donor venue. [01:09:35] And I know that may not sound like amazing thing if you're in Australia and you've been doing this for years, we're a bit behind the curve here, Diane, I'm sorry, but we have got a program running this week with NHS blood and transplant on social media. So, do follow this. This is amazing thing for us because up until very recently, like a year ago, they were not interested in GH donor blood, and now we've got a very good program. [01:09:58] It's working very well [01:10:00] for our community and also for the blood service. The other thing I'll just flag up, which I think Gerri has mentioned our e-learning module for nurses and health care practitioners is available for free. I'll say that again, it's available for free and it's available on our website. [01:10:17] If anybody wants to take a look at it, you don't have to be a nurse to do it by the way. We've had lots of physiotherapists, lots of GP’s having a go, there's a couple of tests. If you are a registered nurse in the UK, you can get CPD points. If you score well enough on your test. Okay. So it's not simply a matter of like scrolling through a few pages and saying, I've done it [01:10:36] give me the certificate. You do actually have to learn something. And actually what we found from that first cohort of nurses is we measure people's knowledge at the beginning of the process before the module. And we measure it at the end and we've found that the average uplift is 45% in people's knowledge. [01:10:53] So we know that the module is working. The Royal college of nursing have endorsed it, and it will be promoted very heavily in the [01:11:00] nursing community later this month. So for those people who are not nurses, but have a venesection nurse, tell them about this, it's free and it helps them get their CPD points. [01:11:12] And then finally, and this is something we've touched on it earlier. We in the UK at HUK, we have set up a genetic testing service. We shouldn't need to do this. We should not need to do this. The NHS should be doing this, but unfortunately they're not. And as a result, we're subsidizing the cost of genetic testing for members at the moment. [01:11:34] We hope later in the year to offer it out to non-members. But if you're a resident in the UK, you have an NHS GP and you're 18 or over, you can come to our website and you can order a genetic test kit. And again, a bit like with the nurse training, we were just overwhelmed at the number of people who've taken this up. [01:11:53] I think it's about 10 times the number of people that we had originally planned, which is causing a few stresses in the office [01:12:00] behind me, because they're busy packing and sending these kits out. But if you are a HUK member and you've got someone in your family who would like to have a test, go to the website these are subsidized. [01:12:11] They normally cost about a hundred pounds to do. We're able to sell them to you for 39 pounds. So they're not free, unfortunately, but they are heavily subsidized. So do go and have a look at that if that's an interest to you. So that was the commercial break. I just want to say again, thank you ever so much for everybody participating. [01:12:31] Thank you to Sandra in Canada, Miriam in the Republic of Ireland, Diane in Australia. Gerri in Darby in the UK. And I just want to say, thank you also to everybody who's been watching and participating. I think there's been a very fruitful discussion going on today. And for those of you who would like to recap the session, we will hopefully get the video up to our YouTube channel soon. [01:12:57] I can't promise exactly when, but we will do it as [01:13:00] quickly as we can. And hopefully that will give people an opportunity to have another look and to share the information with people and I think the last word I will hand to my colleague, Gerri. [01:13:14] Gerri Mortimore (UK): [01:13:14] I was aware of little chat messages coming up. [01:13:16] I couldn't read them all. And I am aware that we haven't answered a lot of questions. If there are any questions that you'd like to send to me, perhaps I can help with any queries that you might have or Neil or anyone else at HUK. I just wanted to say, it's been an honor to meet you, Miriam, Sandra and Diane. [01:13:33] I think it's just such a, it gives me, I don't know, goosebumps, that we're able to talk to each other online. Like this, technology still amazes me from all different parts of the world. And it's been for me, lovely. Just to hear that the experiences from across the globe essentially. I also want to thank to everyone else who's listening in and I'm sorry that we haven't got round to answer any questions as such, but like I said, if I can help in any way, please email me. [01:14:00] [01:14:00] Thank you. [01:14:02] Neil McClements (CEO, Haemochromatosis UK): [01:14:02] Thank you everybody. Take care and have a lovely day. [01:14:07] Dianne Prince (Australia): [01:14:07] Thank you very much. Thank you. Bye guys.