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Okay, I think we'll get started just in the interest of time. So hi, everyone, and welcome to the latest edition of the ASO Clums Network webinar series. My name is Lisa and on behalf of ASO, I just want to welcome you to today's session.
Today's session is going to focus on Ireland's Health Services Executive Model of Care for Overweight and Obesity Management. And today our speakers are going to tell us about the model and how it is implemented, as well as give us perspectives on its implementation from the standpoint of a clums and also a patient. Our session chair today will be Dr Barbara McGowan, who is the co-chair of the ASO Obesity Management Working Group.
And I just want to remind you all today's webinar is going to be recorded and any relevant links or resources can be shared after the session as well. So these webinars, as you all probably know, are free to attend and they are held throughout the year. Today's webinar is the last webinar of this season.
And we're going to kick off again after summer, so please do keep an eye out for the 2023-24 schedule because it's being created right now and there'll be a whole list of topics. And hopefully the topics that some of you have asked for in the feedback will be part of the list too. So just going to give you the house rules before I hand over to our speakers and our chair.
This is a really informal session. If you've been to one of the webinars before you'll know that, please do ask questions for the Q&A panel discussion. So you can do this by adding them into the chat as the speakers talk or you can raise your hand at the end of the session.
And please do follow me on Twitter and other social media platforms and I'm going to send you all the links in the chat. And also, lastly, for me, feedback is really, really important. So please do fill out the feedback form again, which I'm going to share.
So that's all from me for now. I'm just going to hand you over to our chair. Thanks again for joining and I'll let you have the microphone, Barbara.
Thanks. Thank you, Lisa. Thank you, everybody, for joining today.
Very warm welcome to all the comms around Europe. So today we're going to talk about Ireland and the model of care in Ireland and what lessons can we learn from the Irish. Because really, this is about how policymakers and clinicians and patients come together really to make policies relevant to them.
So we're going to talk about policies, the delivery and really how we close this loop. So it's my great pleasure to introduce our first speaker. That's Professor Donald O'Shea and he's the Clinical Lead for Obesity and a consultant endocrinologist based at St. Vincent's Hospital.
He's also the lead for the Obesity National Clinical Programme and he's going to start us off by talking about the model. So describing the model, the principles, the objectives, its implementations and lessons learned. So, Donald, over to you.
Thank you very much. And thanks for the invitation to kind of, I suppose, showcase what Ireland has been doing over the last few years. We were very late to the party in terms of addressing obesity at a meaningful level and implementing policy.
And I'll just tell you a bit about the journey. One or two of the slides are very busy around the model of care and the pathway of care. And it's really for subsequent distribution and looking at, you know, so that you can look at them in detail.
I'm not going to talk about them in detail. I'm going to talk about the principles. And in terms of bringing health care providers, so our Department of Health and HSE alum, the road.
Sorry now. I'm never tired of showing this slide about the explosion in the extreme end of obesity as population obesity has doubled. There's been that 1200% increase in the BMI over 50 and 600% increase in the BMI over 40.
So, what we've had to deal with in addressing that, that's that slide resonates with the health care kind of infrastructure. Making the point that lifestyle can only deliver between five and 10% weight loss and that we understand the body's set point for weight in adulthood much, much better now. We understand the fact of it much better.
We're understanding the mechanism behind this and we're seeing that increasingly and that will help with new treatments. And you're repeatedly faced the question, well, does that mean that eat less, move more isn't important for managing obesity? And of course, it is, but it's not the treatment. And that's the point that I would use this slide frequently.
You know, malignant melanoma, there's too much energy from the sun for your genes. Lots of people go out in the back garden, put olive oil on to tan and they do not develop skin cancer. We have patients attending us who consume lots of calories and do not develop obesity and we have patients who do not consume a lot of calories and develop obesity.
And the put on a hat and wear a sunscreen is not the treatment for your melanoma. Is it important when you have melanoma that you put on sunscreen and wear a hat? Yes, it is. Eat less, move more is not your treatment for obesity.
Is it important? Yes, it is. But it's not the treatment and we have to keep repeating that message with enthusiasm to the healthcare providers because people will always be in the audience who will hear it for the first time and get it, even if you said it several times before. A very brief aside about our work in obesity.
It's been over the last 10 years to map out the impact of obesity on the immune system. And we've been identifying very specific deficiencies and alterations in the immune system and the setting of obesity that do two things. Contribute to further obesity.
So kind of explain that extreme end explosion, but also contribute to the various different 220 diseases that obesity drives. So the core questions really for this morning, from my point of view, was to describe the structure of obesity management services in Ireland and other challenges or successes that are relevant to the other centres for obesity management. And I think my learn about the the model of care and pathway is that the strategic documents, the position statements that obesity is bad for your health and that obesity is driving disease and etc.
On their own, those documents are no good unless you identify a structure that will work within your health system. To deliver care. So we had a really good obesity policy statement in 2005 that made 83 recommendations, but none of the recommendations were ever activated.
And as a policy document, if you miss an opportunity to implement a policy you lose a decade before you get a chance again. So whatever the most recent position statement in your country is, you need to take it and say, how can we fit this into the nuts and bolts of our health service? And that's what the model of care tried to do when we got our, if you like, 10 years after that first position statement, there was another Healthy Ireland, a healthy way for Ireland policy 2016 to 2025. And that had 10 steps forward and two of those steps were within the health service.
And one was to mobilize the health service training and skills to enhance detection and signposting to services. And one then was to have a model for availability of services to individuals who are identified. If you have nowhere to signpost people for treatment, then healthcare professionals will be very reluctant to identify and screen and with good reason.
So the model of care that we have been using is a population level approach to look at the whole population needs and then what your intervention needs to be. And of course, at the top of that pyramid is the very, very high risk group who need that tertiary care. But if you're not dealing with this at every level, then operating just at the top of the pyramid isn't good enough.
In 2020, the National Framework for the Integrated Prevention and Management of Chronic Disease kind of policy was published and it's a model of care over at the whole population level. With level zero, what goes on in the community and just living with your chronic disease. Level one is what goes on in primary care and general practice around detection.
Level two is community based specialist care. And you're not into the hospital setting or tertiary care until you're up at level three and four. And I'll just show you the model of care for adults.
So with obesity, you have to have policy and legislation, sugar tax, things like that, that are reformulation being driven at a government level. We're actively hoping to get push for a policy around tax on high fat, high salt, high sugar, ultra processed foods in this country. The whole education and training is vital and having the ICT to monitor how you're doing.
I'm thinking, in particular now with the advent of expensive pharmacotherapy, we're going to have to be better at tracking, identifying who should start, identifying critically who should stop. But the model of care for adults aligns with the framework I showed you earlier. So level zero is living well with overweight and obesity and that's access to online weight management supports.
Approved commercial programs, if you have any that are reached at the bar in your country. Weight Watchers was the only one that met the bar here in Ireland, and it has since left Ireland. Making Every Contact Count is an education program that is involved in training all health care professionals in raising the issue of weight, in discussing weight and in giving brief intervention around nutrition and activity.
In primary care now our GPs are being remunerated for weighing and measuring. This has never happened before because they're remunerated, they're doing it. Both in adults and children and they're doing checks on everybody over the age of 60 and the age for that is going to be coming down in the next few years.
So that's going to give us access to real time data we've never had before. Level two in Ireland is a dietician led behavioural weight management program. It's delivered by basic grade dieticians.
There's 96 that have been being recruited, one for each network. And that's called the Best Help Program. That's beginning to roll out, recruitment is a bit of an issue.
Level three is our specialist obesity, NDT, for people with severe and complex obesity and there's going to be six of those around the country. And they will see between 400 and 600 patients a year. And ultimately, they will then refer on to the hospital unit, bariatric unit, and there will be three bariatric units developed.
Two are currently being resourced with a site identified for a third. And each of those units will build up to 400 surgeries per year. Which will have us at the low end of respectable in the developed world for surgical activity, but we would hope to build from there.
We hope with access to care that patients who are in level three will be identified earlier in their journey through level three as suitable for bariatric surgery and will pop up into level four, have their bariatric surgery. If you like earlier on their weight journey, then would have been possible now because we've had no access to bariatric surgery. So every single patient coming into a level three has completed the 12 one to one visits.
Whereas now we know after four visits, you can make a call, get them up into level four, that will increase the flow into level three. So that efficiency should improve when the whole model is working. This is the slide that you can look at later and it's the pathway.
So the model of care to be resourced has to be turned into a nuts and bolts pathway of care. So what is happening, the patient at each point in the business, what healthcare professional are they interacting with, is the resource there for them to interact with that healthcare professional. And this is a slightly simpler outline of the pathway and the adult patient journey from point of referral by the primary care team, the community medical doctor or the GP into either a level, depending on what they identify in that initial screen, you will be referred to level zero, which are community based programmes and activities that will be sufficient to hold your weight where it is or target a two to 3% weight loss.
Or you may need a referral into the best health level two programme. The issue with the best health level two programme is that it's really already getting referrals for patients who need level three and four care. It's doomed not to be a success if it's getting patients referred with BMI's of 45 and 50.
It's really for an earlier level of complexity. And then the pathway allows you to identify the resources that you need and then you go and lobby for the resources. So the challenges we've had in the Irish system are obesity has sat within the health and well-being prevention division of the health service in Ireland.
And we needed it to move into the treatment arm as well as the prevention arm. Getting a clinical lead for obesity and a commitment to the model of care has been a long time coming. But once you have that you have the beginnings of a structure.
So Obesity Canada who we adapted our guidelines for recently were looking at our model of care which was drafted based on their guidelines. And they said we have the guidelines, but we don't have the model of care. So they're now looking at our model of care because I think you need the two.
Getting obesity on an equal footing with other chronic diseases is vital and we're within touching distance of that. There's still a little bit of give and take going on in the background. Where the emerging pharmacotherapy is going to fit in is a fantastic challenge to have.
The successes have been underpinned and you're going to hear from Suzy Burney later on from the ICPO and DCPO. The patient voice emerging here has been critical. The development of the making every contact count intervention again has been a crucial step for us in trying to operationalise things.
Developing healthy kind of community-based activities and growing access to level zero, if you like, interventions is really important. And we have high level commitment now to the model of care. But we have about 50% of the funding we need secured.
So we need to get full resourcing of that. So I'm going to stop at that. That's the backdrop, Barbara.
Thank you. That's really a very useful overview of the model and I'm sure there will be lots of questions for you a little bit later. So can I encourage everybody to post the questions in the chat? But what we'll do, we'll leave the Q&A till the end.
So what we're going to do now, so we've seen a sort of vision of the model, some of the challenges, and what are we going to move on to now is our second speaker, Dr Colin Dunleavy, who is a clinical specialist physiotherapist based at St. Colmcille's Hospital, which is also a COM in Ireland. And Colin is going to talk to us, give us a perspective from a COM and what the impact of this model has had in real practice. So Colin, over to you.
Hello, thank you. And thanks for the invite to speak. And thanks, Donald, for giving us that lovely overview.
I suppose I'm going to follow a similar line, maybe a little look back on my own journey to in this fantastic area of health care. So, let me see if I can go forward. Okay, so as Donald mentioned, I think we were very fortunate, and again through a lot of hard work from Donald and Karen and a few others, to keep in this area so well highlighted.
And Donald, to be fair, has put a lot of work in over the years, lobbying, and every chance he got to a very resistant state health service, I think, to take overweight and obesity seriously as a chronic disease. So in 2021 and 2022, we had two documents, which are separate documents, but for the purpose of this talk, I think they link very well together. And I'm going to talk about the impact of maybe both of these on a Level 3 service.
Donald explained what a Level 3 service looks like. That's people who with complex obesity in ambulatory settings, who are coming in as an outpatient setting. I do also work in a Level 4, which is inpatient bariatric, but this again is going to be mostly based on the Level 3 perspective.
So I joined this service that I'm currently working in, and actually Donald hired me. I think we've changed a lot since then. I'm going to give you a little bit of an overview, and this is just my thought map as to my journey from 2008 to where we are now.
So we're not in any particular level of order, or I think chronologically, it's about right. So I joined in 2008. I think 2009, the Admins and Obesity Staging System came, or was published, which, you know, these things after publication take a long time to get going, but we certainly use that and draw from that.
I think originally, believe it or not, I was surprised that Victoza, the trademark, was also back in 2008 or 2009, maybe, close to my own starting point. So there's two things that had a big impact on obesity, but I was completely unaware of them back when I started. I thought my role when, and I probably may have even said it at an interview and still managed to get the job, was that I had to get people to exercise.
That's what I thought I was doing, because that's what the information I had from, probably from the TV and the media. And that's really what I thought my job was. As the years went on and through patient exposure, you kind of wise up fairly quickly, and there's some people on this call have really helped me, including Susie, who will speak after me, as to what it's actually like to live with this disease, and that this is not a diet and exercise problem.
This is a chronic disease that, as Donald mentioned, is similar to other chronic diseases, such as diabetes and high blood pressure and pulmonary diseases, etc. So I was finding my way through this and stumbling on these problems I didn't really know existed. For example, lower limb edema and recurrent cellulitis.
Pain, when I started, I didn't realise how much of an issue pain was, and I think it's an area that still doesn't get enough focus. I didn't realise how bad my communication style was at the time either, and it's been a real avenue. I think in obesity care, communication is everything, as it gets much more focused than any other area, and rightly so.
So that's been really helpful, and it did take me a while to get there, and several courses and so on. But also realising the profound effect that stigma has on this disease has been huge. And then the other issue is back to my roots, what I should have been doing all along, is focusing on rehabilitation of physical function.
So again, 2008, my first priority, I thought, was that I had to help people to burn some calories. Anything else wasn't clear or decided yet. I was part of an MDT, but I don't think we really fit in together.
We were just working parallel to each other. So that's where I was. And often, we might have, I think it felt like we were an island, and maybe even within our own MDT, we were islands in the one system, trying to do our own model of care, if you like, the things that we could discover with patients and learn by our mistakes.
This is a fantastic view from the top of a mountain called Crow Patrick in the west of Ireland, and it is, I think, a good representation of where we felt we were, not just in our own professions, but also within our service, St. Colmcille's Hospital. I think we were one of many people trying to do something in this area, but certainly not connected. This was our own audit from a very weight-centric, which I think we all were back in about 2012.
And it was a bit of a with a chagrin, probably, and we looked at how the thing that we were chasing, which we thought was weight loss, how really, if that's based on about 200 people, the impact that our service had on weight, we were probably a little bit deflated, really, that we weren't helping everybody to lose the waist through diet and exercise. What a surprise. And most people stayed about the same.
So I think these type of findings, going through these audits and then looking at the literature, other things coming around about that time, gives a real sense of, hang on, there's something else going on here. And it was not just us. These are normal outcomes from a level three service.
So once we kind of accept that you're doing something different than losing weight, it was a real, initially, probably a bit of a journey to get there for us. But over the years, we've discovered, again, I'm a physiotherapist. So to be able to become much more comfortable in the things that I actually think I can do and help people with, the thing that leaps out when you look at our data on physical function is that obesity is an ageing disease.
It's a disease that erodes people's physical function 20 or 30 years earlier than they should in their chronological years. And that has a profound effect on people's participation, how they feel. And then our approaches to that would be to ignore things like respiratory health or people's ability to move and set unrealistic expectations about exercising this problem away.
And for somebody, I think, who is in this very difficult condition where their movement is essentially hard, people are very confused about what I should be doing, what I can do, and perpetually feeling like a failure. And then we had to stop, luckily, giving people unrealistic targets around what they should do for exercise because the medicine was a poke in the eye. So we have journeyed and discovered and saw gaps in where care is, where care is needed.
Lower limb oedema is a massive issue for us. It's a very expensive and difficult issue. Expensive in the terms of hospital admission for a current cellulitis is very expensive and very debilitating from a patient's point of view, very painful.
Trying to move around and live with legs that have significant oedema in them is a very difficult place to be and adds to the complexity of this hard disease. So simple solutions, when I say simple, the whole funding, another journey to help people to actually get a good solution for issues like this. But we've made a lot of discoveries on that way.
Another thing that we have done, this may sound really simple, but again, when you get out of the way of thinking that you're a weight-centric intervention and discover that people actually need help with things, particularly pain. So 90% of people who attend our service have significant mechanical pain that stops people from moving and enjoying their life. And then how do you get people to do functional exercise that they can actually do and that actually help? And we think we've discovered a few bits and we've been able to promote and show people how to do that and make it available on YouTube, et cetera.
So you can see we have changed over the years. This is a little snapshot of a part of our folder that's called physiotherapy assessments. So the assessment sheet that we follow for a new patient when they come into the service.
You can see we have evolved. That's only up until 2020. There's another page up to today.
So it has been a real journey of discovery for us. And this is what our assessment looks like now. Sorry, we don't need all those.
So what we think my job as a physio is now, it's back to where it should be, which is a functional rehabilitation, or should I say rehabilitation of physical function. It is chronic disease management. It is supporting people to re-engage and participate in their life despite this alienating, difficult disease.
It's pain management. It's lower limb edema, preventing recurrent cellulitis, supporting sleep disorder, breathing, CPAP, all those mechanical things that we need to get right. We also work in level four, which I haven't gone into any detail here.
So we're doing behavioral support and education and helping people. So we move miles away from diet and exercise and brings us to this point now where we have the model of care and the clinical guidelines. And I think we've been able to, I suppose, put some of that learning that we've had into these clinical guidelines, which are available.
And I'd recommend people who particularly, I think a lot of work, if I don't mind saying so, they're around physical activity, the role of physical activity in the management of obesity, just moving as far away as we can from that notion of exercise and calorie burning. And it's really about preserving people's physical function and enabling them to participate. The model of care then in that same viewpoint really helps us to delineate the different level of services and where people fit and the type of care that they need.
So I think we've moved from certainly in here, I would hope. I think we may have lost Colin for the last bit of that talk. So hopefully we'll get him back.
But I think the message he was trying to give to us, we definitely moved away from just eat less and move more. And clearly the role of, also in the physiotherapist has a very different role to the one that I think we traditionally had. So I think whilst we wait for Colin to come back, and I'm not sure whether we'll give him one second.
I'm very happy. Colin, are you back with us? Yes, sorry, I'm afraid I dropped. Oh, fantastic.
That's okay. I'm just coming to the end of it now. I'm sure you'll be delighted to know.
I suppose the final point I'm hoping for is that we have hopefully moved from these little islands to a whole Ireland approach. And that's the model of Clare and the clinical guidelines enables us to do. I don't think we're there yet.
And Donal has just stated that. And Donal and Karen have a lot of work to do, I think, just to fill in the gaps and find out where we are. But at least we have a good roadmap to do that.
So thank you very much for listening, everybody. That's great. Thank you so much, Colin.
That was a really lovely journey, actually. Although I'm sure we've still got lots of challenges, and I'm sure Donal and Karen have a tough job on their hands. But thank you for that.
That's really great. And I think the next speaker, of course, is probably the most important speaker, because she will tell us, Susie Burnham, of course, is a patient living with obesity. And she will tell us a little bit more about her experience, her perspective in terms of what the impact has been for her in terms of this new model.
So Susie, a very warm welcome and over to you. Thank you. Thank you very much, Barbara.
Yeah, so I suppose I'll just give a very quick overview for myself of why I actually am here. I'm Susie. I'm 48 years old.
I live in Dublin. And I live with obesity and other complications that come with obesity, like type 2 diabetes and polycystic ovarian syndrome and a few more. For me, weight was an issue from a teenager.
And I say weight specifically, and I'll explain that in a second. But I battled and struggled with my weight for years. I lost, I gained, I lost, I gained.
And it came to a point then I was referred to the Weight Management Service in 2009. And I think that's when I changed from that saying that I was battling with my weight to that I actually have obesity. And that's a huge difference that maybe a lot of patients don't understand.
And I became involved in advocacy in 2016 with the Association for the Studies of Obesity Ireland. And through that, I became an Irish representative with the YASO Patient Council. They became independent as ECPO in Europe, the European Coalition for People Living with Obesity.
And meeting many of the advocates there, I saw that we had a need for a patient organization in Ireland. And I started to work on that with some dedicated advocates like Maura and Bernadette and others and Catherine. So that's where we're at.
And that's just a very brief context. But the difference being that I stopped struggling and I stopped battling with weight and I learned and understood what it meant to live with obesity. And the difference being that you have to manage how to live with this chronic disease with the help of the multidisciplinary team, of course.
So what does it mean about the words I live with obesity? It's not just being politically correct. It means that you're living with it every single day in whatever way, shape that comes. And quite often, patients don't even understand some of the implications.
For me, pain was one factor that I didn't really, you know, it was all this self-internal stigma of the blame. This was my own fault that I had done this to myself. It takes a long time to change that.
And changing that is through words and words matter. And I think collectively, we're all trying to do that now. We're learning and we've come a long, long way since I even started in 2016 when I look back.
And that was the start, I guess, when we were quite very new as a patient organization, that we became involved with the national program with the model of care. And really, I guess our primary role was reviewing it and our reactions to it. And I think as patients, we don't realize how we often have a very quick reaction to certain words that are used.
And one in particular that I honed in on was about the BMI chart. And we know we're moving away from that, but it still has to be there. And when I read the word normal, I really had huge issue with that, the word normal, because if you're not normal, you're abnormal.
And after having treatment and very effective treatment, I had bariatric surgery. I went from 155 kilos down to 74 kilos. I still wasn't normal.
I was still in the overweight category. So that was a reaction to me, a strong reaction that we've got to stop these subliminal messages of that. If you're not normal, then you're constantly losing this battle.
And it's not a battle that is ever going to be won. It's you live with obesity. So that was changed.
And at the time we changed that it says ideal range. It's on page 14 of the model of care. And that's what it says, that it's the ideal range.
It would be ideal for anybody to be in that category, but not that you're abnormal if you're not there. And I think that was really important in our involvement. As I said, we were very, very new as an organization, and that was just on a gut instinct reaction of how we feel in our lives of what we're reading and how words matter.
Policies are not seen typically by patients or understood. And Donal mentioned structure for obesity management. And typically patients don't understand these structures.
They don't see them. They don't know them. They don't know what it means and how it impacts for them.
And there was a policy document in 2005. And I remember seeing it back then, but not really understanding what it meant. I did read the policy document in 2016.
And I can honestly say that I thought it gave me false hope. I thought this is great. Things are changing.
It's changing quickly and everything's going to really improve. And yet waiting lists from what we see as patients weren't really improving. Nothing was happening fast.
So I guess that is what our job is with ICPO is to bridge that gap of knowledge, I think, between the healthcare and the patients, and to educate and share that with the patient groups, because the expectations are high. The patient is standing alone looking at what they need for their treatment. They're not worried about what their neighbor is getting, what anybody else is getting.
They just look at their own journey. And they see these documents and they think, well, what does this mean for me? I thought I'd have got my treatment by now, and I'm waiting three or four years. So we have tried to change the narrative, I guess, in bridging that gap within our patient communities, and that it's not going to get us anywhere to complain.
We can all complain the waiting lists are terrible and how long I'm waiting for my treatment, but what can we effectively do to change that? We need to be there to support the system and to try and help from our side to push and raise the reality and what it means for us, not the clinical side, not the scientific side, as us with our quality of life, what does it mean for us? And what do we need changing? And some of the work that we've done is we've raised parliamentary questions. One year, there was no funding at all for bariatric surgery. And I think 50 patients raised the parliamentary question, why? And this is how we have to try and support the system, not complain about it.
We did a HTA submission of evidence for when there was a health technology for pharmacotherapy. And this again was when we were quite new and we had 250 responses to an anonymous survey monkey. And I can honestly say this was probably one of the hardest parts of our advocating because we had to analyze that and put that into a PowerPoint to send off 60 slides of the lived experience of people and the heartache and the suicide attempts, the child loss, all the hardship that comes with living with obesity that most people don't know about because we fight it because of the stigma.
And that is our job to share the real lived experiences, not for sympathy, but to make change. And we heard Donald say that since the patient voice has been involved, change has seemed to have come along quicker. So that is that gap we bring for the patient side, but we bridge that gap also for the healthcare professional side.
So we conducted a survey about a year and a half ago, and it was on the effects of excess weight on how it makes a person feel with the skin. And we had 353 responses in just 10 days, 10 days. It only took to get that amount of responses.
And we have that all collated to bring to the healthcare professionals to say, this is what the patients are feeling. This is what they need. This is what they're saying, and you need to listen to this.
So I think bridging that gap from both sides is an important part of our job. And I think that all started with those reviewing the model of care and us looking from outside eyes in with our views, with the lived experience. We did review the 10 year action plan.
And one of the main things that we came back was that the review process wasn't great because we were asked to review two different subject matters in the one question and score from one to 10. We couldn't do that. We couldn't do that realistically, but what was really important about this was that we were invited to do that, that we are a part of the process.
And I think across the board, the huge, the great collaborations we have with the HSC, with ASOI, that is the key that there is good communication between the patient community and the healthcare professionals. We meet with the national program now. We ask that we have a regular meeting that we're kept up to date.
We can share what's happening from our side. They share what's happening from their side. And I think that communication is really key for us to highlight the lived experience and what we need and what we're thinking.
We're there either to highlight or compliment the work being done for better outcomes for patients. Our website says that ICPO want to be a trusted source for information for people living with obesity to improve their lives. And I think the fact now that we are invited at an early stage to sit on committees, to sit on boards, and to be involved very early from the stages of all of these public health campaigns last year, we were invited to sit on.
And I think that is what is creating this change, that we're bringing our real life experiences. Media interviews, news talk only rang half an hour ago, and we can actually see the narrative is changing. And it's really, it really has come a long, long way.
And that's it for me, but I'm more interested in people asking me questions. So I'm looking forward to the Q&A. Thank you.
Thank you, Susie. Always amazing to hear your experience and your stories and to share them with us and to really bring it to life. So with that, we've concluded sort of the speakers and we can now open it up to the Q&A.
With the Q&A, we're also going to have Karen Gaynor, who's the Programme Manager for the OBCD National Clinical Programme for Ireland. And we've got Karen there. Fantastic.
For everybody else, if you'd like to put your cameras on, you're very welcome to do so. If you want to put questions in the chat, please do so, or put your hand up, put your camera up. So that's great.
So thank you very much, everybody. And I guess whilst I wait for questions to come through to the chat, I'm going to start off first with Susie. Susie, you say that you've got a website, an ICPO website.
Can I ask a cheeky question? Who funds this website? Yeah, so we are looking that we had initially when we started up as part of the European Coalition for Treatment of Obesity, they support national organisations. So we'd start up funding to help start out in what you need. And it has been quite difficult because we're patients and we live with the chronic disease of obesity.
We know nothing about setting up websites. We know nothing about terms of reference, setting, you know, what your board members need, running an AGM. And I have to say what we have learned in the last three years is phenomenal and was overwhelming.
And so we have been lucky that we had that initial support to set up from ECPO. And when it came to campaigns, we always had support from ASOI, but we've had support also from the HSE for the last three years. And we have support from pharmaceuticals.
So that's all declared on our website. Fantastic. That's really helpful.
And with the ECPO being the European Coalition, do they also have individual coalitions in their own countries, do you know, or is it just? ECPO is an umbrella organisation which brings together, I think now it's 36 European countries. But within those 36, not all of them have patient organisations. So for instance, in Iceland, they've literally just started a patient organisation.
And in Sofia and Bulgaria, Constantine, he's a young advocate who's 26. He's literally just trying to form. So it's actually a mix of representatives and organisations.
Okay, fantastic. Thank you very much for that. Okay, so the questions are now coming in.
So I'm going to try and go for the question for Donald. How much resistance did you receive around obesity being recognised as a chronic disease? And if a lot, how did you manage this resistance? So that question is put in the past tense and should be in the present tense. We are still receiving resistance to have been recognised as a chronic disease.
I think when Lee Aplin finished his, gave his finishing talk at ECO earlier this year, it was a very challenging talk, because he said to everyone in the room, you need to really treat obesity as a chronic disease. Really think about it as a chronic disease, not just say it. Because many of the big, you know, significant players are articulating it as a chronic disease.
But underpinning it, they have the same bias and stigma that is there, that it is still eat less, move more, and it actually would be okay if you could. So I thought that was very challenging and provocative. What we are meeting within the health system is resistance to it as a chronic disease.
What has helped overcome it is the repeated statement that well, if you want to keep treating the complications of the disease of obesity, and you want to treat the diabetes and treat the cancer and treat the skin disease, yeah, you know, keep doing that. That's very expensive, much, much cheaper to treat the disease itself and prevent the complications. So I think, I think it's repeated messaging.
And it's repeated strong messaging. And I think the advent of meaningful treatments now in the form of pharmacotherapy for obesity, historically is what has underlined the disease as a disease. Oh, actually, it's treatable.
So, oh, actually, it is a disease. So I think we just have to keep saying it. And one of the other things you said, on your slide, you said we want obesity to be on a par with chronic diseases, such as, I don't know, type 2 diabetes, for example.
And we know there are, you know, probably billions that go towards supporting the management of type 2 diabetes, but not obesity. How do we square that up? You know, what, you know, what are you doing to convince governments to invest more money into obesity? And it's a question for you, Karen, or... Well, I'll just come in first on that, because we are transitioning in Ireland, the obesity clinical programme from the prevention arm into the chronic disease arm. So within a couple of months, we expect to be sitting beside diabetes, type 2 heart failure, COPD.
At that point, we will be able to say, so let's have a look at the resource then for these other diseases. And we'll be able to say, well, why are we getting like 1 50th of that resource? And we'll repeat the argument of, well, so surely we are better to prevent these diseases. And the people in the other chronic diseases are going to need weight management as a major part of their therapy.
So they're going to need to share some of their resource across to obesity management. And whether that comes from upskilling the diabetes teams, the COPD teams with expertise and resource to manage weight, or whether it's expanding the obesity treatment teams to take on that work, we have a view within the obesity programme that it should be upskilling. Obesity is everybody's business.
And managing obesity as a key driver of your chronic disease should not be firing them off to the obesity service. Thanks very much. Thank you, Donald.
Before I ask the questions about practical steps, about how we would recommend to a country trying to adopt this model of care, hold on a second. I've got a question from Darjan, he's 28, he's in public health and he works in the field of health promotion and obesity prevention. And his question is, as part of your model of care, do you create some specific health education proposals in the field of physical activity and nutrition, how to train properly, how to eat properly, especially for young people in adolescence, because childhood and adolescence obesity is one of the biggest problems globally.
Can somebody say something to this question? So education in the field of physical activity and nutrition. Yeah, I suppose I don't want to have a go at some of that. I suppose it's difficult, isn't it, because you're in the early stages of this genetically driven disease with the global parts of the environment that are somewhat outside your control.
So it's not that we're training people or, you know, nutrition is really important. How to, I suppose, Donald and Karen will have a lot to say about in public health, how to manage the advertisement that those kids and young people are subjected to, how to manage money and the availability of appropriate nutrition, and how to be active in a preventative role to, I suppose, to enable your health. And if you're a physically fitter body, you generally do better with most diseases and health.
And that's the kind of model we want to get across, the message I want to get across. Karen, would you agree with that? Yeah, thanks, Colin. And it is, we have looked at specific public health campaigns and the Department of Health, our government, are running a campaign at the moment aimed at younger people.
On this, it's very, very difficult to, it's very difficult to give this kind of messaging without reinforcing the misunderstanding and the stigma that obesity is very closely linked and by eating too much or not doing enough exercise. So Donald will have alluded to it and it is there, the model of care for children and young people is available. And I'd encourage everyone to take a look at it.
It's quite similar to the adult model and does build in the necessary education. But how we give that messaging is really important as well. It's hard, isn't it? I agree with that point, Karen.
It's so hard to, yes, and as Donald said at the start, being aware of your food and nutrition, being aware of your physical activity, being aware of how your sleeping behaviours are, being aware of things you're exposed to in your environment are all really important parts. But not to cure this disease, it's really to prevent things getting worse. And maybe it's so hard, I think as well, to try to target those with a strong genetic predisposition to this, that their rules are different than other people's rules.
People who don't have a genetic predisposition to develop obesity can seem to do and play Xbox all day and have peaches and have no problem with that. But if you have that genetic predisposition, that's the type of, I suppose, health behaviours that you have, you're going to have different problems than the person who doesn't have those genetic disadvantages. Thanks very much.
And another question in the chat, and I know we haven't got a dietitian, but can we say something about dietetic-led behavioural programmes as part of the model? I don't know if anybody wants to comment, Karen. Yeah, I'm happy to talk about that. So, Best Health, the name of our behavioural weight management programme is called Best Health.
It sits in community and it's delivered by dietitians. It has been developed with multidisciplinary input. And it is a 12-month programme.
And because it was launched in the pandemic, it's actually virtually, primarily, although we are looking at some test sites where it's delivered face-to-face. And it is a very standard evidence-based behavioural programme. I would say we've done, the dietitian that led on the development did an awful lot of work and engagement with ICPO and dietitians on the ground.
And I would say it's very, very mindful of the bias and the stigma that is out there, I suppose. And it's aiming people, or its aim really is to move away from that weight-centric model and move towards, as the name suggests, that kind of best health and best weight approach. Thank you very much.
Now, we're approaching the end of the session and there is an evaluation, so if you could complete that. But just to, sort of, I guess, close the session bit and ask everybody in turn, there was this, well, quite challenging question. What are the first practical steps you would recommend to a country trying to adopt this model of care? So, perhaps if we can have one minute each from all the speakers and Karen, that would be great.
So, we're going to start with, well, we'll start with Donald first. Yeah. So, I think the point we had to get to, to really drive the model of care was to present as-is and say, this is what is currently available for obesity management in Ireland.
It affects 24% of the population in adults and it's unacceptable and there's nothing available for children. So, do your as-is piece and say, not good enough. Look at what the WHO are saying, look at what the ASO are saying, look at what countries in Ireland, like in Ireland, are trying to do.
We're not doing it yet. And let's, let's put a, an equivalent that maps into our country's health system plan together. Thank you.
Colin? That's a hard question. I'm not public health, but I'm going to have a go at something that I think is important. And I think this is to put your own frame of mind on a solid footing, that you fully accept, fully digest that this is a chronic disease that people don't have a choice in.
And then when you really accept that and see all these other fluoride problems that are associated, like as soon as you said pain, like cellulitis, as Donald said, there's so many other expensive problems that are related to this, this core central bit. And this core central bit isn't a choice that it is really is something that is very unfortunate and lands on people. Fantastic.
Thank you, Susie. Yeah, I think learning from others is key. As I said, I started in Europe with the patient side and came back to Ireland.
And I think in particular, Portugal stood out to me that I learned a lot from, from their patient organization and their best practice. And I think we've got to look at what best practices, there's no point in reinventing the wheel. We don't need to.
And I think don't approach anything to do with obesity with those blinkers, that mindset of this is the only way. I mean, look out beyond it, as we said, you know, the comorbidities that come with the associated health risks, everything, don't look with blinkers. Thank you.
And finally, Cara. Yeah, I would say in your, in your country, look at the other chronic diseases and, and try and speak the same language. So, so look at obesity or diabetes, respiratory disease, cardiovascular disease, see what strategies, models, whatever they're called, frameworks, and, and, and almost mirror that for obesity.
And secondly, look at what, what clinical guidelines you have available and use them and make sure that what you're saying is evidence-based. Thank you, Karen. So with that, I'd like to bring the session to an end.
I'd like to thank the speakers, so Donald, Colleen, Susie, and Karen for the, for the questions, for attending today, for giving us their time and experience, Lisa for organizing the session, and everybody else for attending and for asking all these excellent questions today. So I hope you found it all useful and I wish you all a great day. Thank you very much.
Thank you very much for listening. Please do the evaluation if you can. Thank you.
Thank you. Thanks everyone. Bye.
Thank you. Bye-bye. Take care.
Thank you. Thank you.