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non: [00:00:00] You are listening to the ATS Breathe Easy podcast, brought to you by the American Thoracic Society.
Amy: Welcome everyone. my name is Dr. Amy Attaway. I am here with another episode of the ATS Breathe Easy podcast. And I am so excited to have two really wonderful guests on this podcast. So this podcast is going to be in to really promote, the upcoming world COPD day. So I have two expert COPD. People with me to discuss that further.
Um,
and I have Dr. Rachel Evans, who is a respirologist, are also known as a pulmonologist from the University of, Leicester in England. And she's a global leader in exercise physiology [00:01:00] and rehabilitation in COPD and other chronic medical conditions. So thank you so much Dr. Evans for being here.
And, I also have Russ Winwood. so Russ Winwood is a patient advocate. he's also known as the COPD athlete. He has had an amazing journey, and always talks about, that he doesn't let his COPD diagnosis define him. he is. Participated in a number, has an amazing story and part has participated in a number of marathons.
Iron Man's really highlights the importance of exercise in pulmonary rehabilitation in COPD, so thank you. Welcome, Russell and I think the really. Yeah, I think the really amazing thing about this podcast, so we are all, so I'm, it's, it's 6:00 AM in, the United States right now. Eastern Standard time.
What time is it for you, Dr. Evans? [00:02:00]
Rachel: Oh, very civilized here. 11 in the morning. Sorry to both of you.
Amy: And then Russell, what time is it for you?
Russ: what, yeah, we're 8:00 PM so just have my dinner, and ready to go.
Amy: Okay, wonderful. So I think yes, we're, I'm really excited we're coming from all over the world to do this podcast.
Um, and so I think we really wanna talk, talk about pulmonary rehabilitation. and so kind of how the history of it, how it was first developed. I think Dr. Evans, that's something that you, you know a lot about. You're an expert in that area. So how can we, really highlight pulmonary rehabilitation like, and.
Emphasize its importance.
Rachel: Well, I suppose first we need to think about what we actually all mean by pulmonary rehabilitation. And I think that sometimes is the, the beauty and the crux of the issue [00:03:00] is that it can mean many different things, especially across the world. so ATS has been instrumental in trying to get definitions of exactly what we mean by pulmonary rehabilitation together alongside the ERS.
So we largely now think of it as a structured program. It's got lots of different ways the how it can be delivered, but it has to be structured core components of exercise, education, supporting people to self-manage. Really key is the skillset of that multidisciplinary team. So it's certainly not led by, just medics.
a need to involve physiotherapists, nurses, occupational therapists, a whole load of different allied healthcare professionals to really put together, the program. and it targets. I suppose another key thing to, for clinicians to [00:04:00] understand is that it tar and for patients is that it targets all the effects on the body that having a disease like COPD can manifest.
So. It doesn't particularly target the lungs. It targets, the way that we sense, symptoms. It targets the way our muscles behave towards symptoms. and ultimately it tries to improve symptoms and qual and quality of life. It helps people feel better.
Amy: And I, I think that I, I really like how you summarized that.
It's like really giving, like, you're, you're learning a lot of different techniques that you can carry forward, in self management. And I think Ru Russ, do you wanna talk a little bit about that? Because you had, you had kind of, you have such an amazing journey and I think you kind of, you didn't necessarily know about pulmonary rehabilitation when you first started.
Is that right?
Russ: Y [00:05:00] Yeah. So I was diagnosed, with COPD, 14 years ago. so we use the terms of, stage four, that nasty term end stage back then, which we don't use anymore. so for me at that age, I was only 45. It was, quite a daunting prospect. I was referred to pulmonary rehab eventually, and unfortunately our system in Australia back then was quite broken.
so I would make phone calls. I wouldn't get a call back. Then I would find out that that particular program was closed down because of the lack of funding. And so fast forward to nowadays, pulmonary rehab is certainly a lot more organized. it's a great way for patients to learn about their disease, manage their disease, but also moving [00:06:00] forward how they can improve their quality of life.
And I think the important thing for patients is to learn about. How they manage their disease between doctor's visits, so, you know, patients, and I'm, I'm no different. You know, we, we have times where we just wait for our next doctor's visit and hope it's a, a magic new medication, whether it's an, an inhaler or a tablet or whatever.
Um, but that's not so proactive, you know, we've gotta be proactive. And pulmonary re rehabilitation is a good starting point.
Rachel: And that's key, isn't it? That starting point that mm-hmm. Although it is a program and quite often that's an eight week program, twice a week, as we said, structured. but it's really the key is, the learning that hopefully then goes into day-to-day, life for people, isn't it?
It. [00:07:00] It's not.
Russ: Absolutely. I'm
Rachel: just sneaking a tablet and off you go.
Russ: No, and I think it's, you know, I always say the biggest thing you can learn with managing this disease is consistency. And that's consistency with day-to-day activity, consistency with taking your medication and all those things we need to do to, manage our disease well.
And we can get taught, that in pulmonary rehab. So yes, it, it's the starting point we all need to get to.
Amy: That's a great, and, and I, I think one of the things I've also heard from my patients is that you feel like a sense of community. Like you have, you have all these people who are really there to help you, but you also, you interact with other people with COPD, so you all kind of like, they, the, my patients have described it as kind of a support group as well, knowing that you have all these [00:08:00] people that are here to help you, and then patients that also are, you're kind of learning from their journeys as well.
Um, is, is that
Russ: Absolutely. I think, um. I, I, I think that's a big component of it, is having that network that you can support on, you know, myself, I, have a coffee, you know, every so often with a, a patient friend of mine, he's gone through a double lung transplant. But, you know, we, we connected over exercise and activity and how important.
So, and still is, so, you know, the connection you get with pulmonary rehab is just one of the benefits.
Rachel: Absolutely. And that's very true of the face-to-face, programs. but we also have to be mindful that geography, particularly in America and Australia, don't always lend itself, isn't it for a face-to-face [00:09:00] program.
Um, so there are, other ways that rehabilitation is delivered, but we just have to make sure that those key components, are still there. And actually there are ways of having, online, communities. I just want to put a caveat there for the clinicians listening to this, is that rehabilitation is, is very different to peer support.
Peer support is really important, but pulmonary rehabilitation really is, a treatment of exercise and education.
Amy: Oh, thanks. Yeah, then that's great to, to clarify and, and so I think one of the things that we're kind of highlighting is the importance of pulmonary rehabilitation. And I think one of the things we've, we, we are well aware is that it's underutilized.
Um, and so like Russ was saying, he, he kind of didn't know about it right away and. that there's, there's some [00:10:00] barriers, I think, to these programs. I can talk about the u the, I know from the United States perspective we have issues with insurance coverage, reimbursement. You talked about the geographic sometimes.
Just, there's just not a lot of, locations and rural areas. what, what are some of the barriers that we're kind, you guys, you both of you have noticed or things we, we kind of need to work on?
Russ: I think, I think it's universal, it's funding. you know, in, in Australia that's one of the issues we've had is a lack of funding for pulmonary, pulmonary rehabilitation. you know, I think, us in the community, in the, sorry, the respiratory community in Australia would, love to see governments making, um.
Pulmonary rehab, [00:11:00] affordable and accessible to everyone. You know, we know that that's gonna make a PA patient, healthier. It's gonna mean less hospital admissions. It's gonna mean less burden on healthcare in general. but we seem to be spinning our wheels a little bit to get to a point we need to.
Rachel: Yeah, absolutely. And it's that message back to the policy makers, isn't it? This is a really highly valued treatment. If you want to help the individual and reduce burden on your healthcare system, then you would absolutely make sure that pulmonary rehabilitation was available. 'cause Amy, to the, again, to the clinicians and any scientists listening.
pulmonary rehabilitation is really cost effective as well as clinically effective. So it, it is a win-win. and the World Health Organization has recognized this and it is [00:12:00] in their, package, of care that they're recommending healthcare systems deliver. Rehabilitation really is now front and center and certainly for pulmonary rehabilitation, and COPD has highlighted that.
Amy: Yeah,
Rachel: but it says with a draw of breath in the uk I would say that we have, that it is on the policymaker's radars. It is supposed to be something that is, implemented. So the will and the funding to. A reasonable extent is there, but we still have under referral. And that's why things like this podcast are so important because we need to get the message out to patients that they go to their clinicians and request this so that they know this is something that, that they should have and that clinicians understand how to refer, that they understand about [00:13:00] rehabilitation and that they understand how to refer.
I think until we get that front end really sorted, even if we've got the programs there, we, we, we are still not getting everyone to, to utilize it.
Amy: Mm-hmm.
Russ: It, it should really be a part of your initial diagnosis. As you know, we're given a bunch of new inhalers, so we need to have had to learn to use those inhalers effectively, and then secondary to that, we should be prescribed.
P I think it's fair to say it's suitable for most people. so they're good starting points. And I guess for, for a clinician, um. And I'm not blowing my own trumpet, but if you wanna see what the benefits of exercise and, and following the standards that are emphasized in pulmonary rehab, I'm probably it.
And the, I'm not alone. [00:14:00] There's, there's many patients who are living a really good quality of life with a very severe disease. I always say, you know, don't judge a patient by their numbers, their spirometry. Judge 'em by what they can do. The will they have to leave it lead a better life.
Rachel: Yeah, absolutely Russ.
And I wonder if you'll just give us a little bit more, you are not blowing your own trumpet. but I think it's helpful for listeners if you don't mind just explaining what, when you say your numbers, what your numbers actually are in terms of spirometry and what you've actually managed to do and how you've managed to train the rest of your body.
'cause it is phenomenal.
Russ: I guess the thing is, is the starting point. So my very first barometry in my clinician's office, registered, 22% FEV one. So 22%, predicted. and back [00:15:00] in those days, my day would consist of going to work for maybe a couple of hours and then coming home and sleeping, because the cost of breathlessness is exhausting and you were just tired all the time.
And so for me, exercise, has been the main catalyst into improving my quality of life. I could sit here and sit and wrap it on about 14 years of a, of my journey. But I think the important, numbers is now my FEV V one, hovers around 35% of predicted. I still have severe DI disease. That's not going to change, but I work full time.
I work, you know, 40 plus hours a week in my regular job. I still run marathons every year. every day is an active [00:16:00] day for me, whether I'm training or not. you know, I have my goal of 10,000 steps a day and, and I hit at least that most days. And so it was like I was talking about before, none of this would've happened without, consistency.
Um, when you see the improvements. And you see the difference, that exercise and just mindset and just general lifestyle changes when you see the difference it can make to your quality of life. It's quite inspiring. just to, just to know that if you keep going, this is what can happen. And as I say, it's not just me.
There's, there's plenty of patients out there who are high functioning COD patients with. Severe disease. So, you know, don't just take it from me. there's plenty of others out there as well.
Rachel: And I think it's so, well, it [00:17:00] is very inspiring and I always say to the patients, I, see on a Monday morning, I don't run marathons, so I can't be a hypocrite.
I'm not expecting them to go out and run marathons, but it really gives an example of. How much the rest of the body can do with exercise, even when the lung function is still, albeit better, Ross, but still only a third of where it should be. and that's what I think is really helpful to patients rather than it coming from someone like me, but hearing it from, from you that, you know, exercise and you are always very clear to say.
I mean in, in the realm of what somebody wants to do. Not everyone wants to run marathons, but they can use exercise to, for their goals. And everyone's very different, isn't it? Of what they, what they want to achieve.
Russ: Oh, absolutely. And, you know, marathon is my, my chosen endeavor. you [00:18:00] know, until I can't.
Um, but it doesn't have to be marathons. You know, there's plenty of patients out there achieving, big goals. Um. Just by doing consistent, regular exercise. and the human body's amazing how it can adapt. And I, I'll just tell you a quick story of a, a patient in the uk a few years ago now, she wanted to do a half marathon and her biggest problem was how she was going to get her oxygen tanks around a marathon course.
So because she was so determined to do it. She ended up putting him in a pram and pushing a pram around a course and completing a half marathon. And to me that's just a, a great example of, of what you can do. and, you know, she was a great advocate of, pulmonary rehab. So, you know, I can, I can belt out all [00:19:00] about pulmonary rehab all day long.
I never get sick of talking about it. 'cause it, it's just so crucial, to manage a disease.
Amy: I love, I love that story and I, I think as, clinicians, and I'm curious what you think Dr. Evans, but um. Sometimes I hear like, when do I, when should I encourage pulmonary rehab? when, like, at what stage of the disease?
Um, I, I feel that sometimes, a lot of times it may be a patient who is not necessarily getting it from the beginning or being encouraged to participate in some kind of exercise program from the beginning. but I do think that. Many of, like the gold guidelines, they recommend like symptomatic COPD, it doesn't necessarily have to be someone who's having a lot of exacerbations.
So I always highlight that with my fellow clinicians. I always talk to my patients about that. And then I think it's just, it's so, like the story you told about [00:20:00] how, how high like functional you became, right? Like, so you were from like where you started to where you are now, just really highlights. You know, and I think you talk about this, right?
Like exercise is, is the best medicine you ever found, right? For your COPD, so
Russ: Absolutely.
Amy: Yeah. We've been talking a lot about pulmonary rehabilitation and its importance. And then I think the other thing we wanted to talk about was how to raise awareness for COPD for pulmonary rehabilitation, and that I think that segues really well into the world.
COPD, Baton Pass. so Russ, you wanna talk a little bit about that?
Russ: Absolutely. I, I love, I can talk all day about it too. to give people a little bit of background myself and, respiratory physio in the uk, Dr. Ruth Barker, we got talking about three, [00:21:00] four years ago now about. How we create awareness for COPD, but really emphasize the importance of activity, and exercise.
And so after, after many months of talking, we come up with the idea of the COPD Batten Pass and what that is. It's a event we hold on, well, COPD day this year, the 19th of November. We hold it each year and it's a 24 hour event, so. It runs over the whole day. it starts in Australia and New Zealand early, on world COPD Day for us, and it finishes in the US at the end of their world.
COPD Day. What it actually is, is three links that we hold on the Vimeo platform and the day is full of education, about p rehab, about exercise, about lifestyle changes and how we do things in Australia and New Zealand, [00:22:00] how people do things in the UK and Europe. And in Africa. Africa and then across to the Americas, we have sites all around the world.
so last year we were viewed in over 40 countries and what's wonderful is we're getting now sites in countries where they don't have a lot of, resources. And so they're looking to see what the world does and how they can best adopt. Practices into their own clinics, that can help their patients.
So the big baton pass, as I say, it's on the 19th of November, on Wednesday. We'll, COPD day, you can get more information by going to our website, which, um. Hopefully we'll put in the show notes, but it's www copd baton pass.org this year. We're also [00:23:00] doing a, a global step challenge, and this challenge is open for patients, clinicians.
Anyone really involved in the respiratory community, and that can be carers, it can be families, we don't care. we're, we're sort of framing it a bit like the ice bucket challenge that was very popular. This will be a step challenge on the day, and our goal eventually is to have enough people involved that we walk around the earth, which is 55 million steps.
So we've got a target. I'm not gonna say we're gonna get there this year, but it's a target. We can, we can hopefully get, get, get at some stage. I guess the whole emphasis of the day is the importance of activity, and, and, and access and how people can, can get prescribed, pulmonary rehab in their different countries.
Um, so I would [00:24:00] urge whether you are clinician, or a patient to log on on the day, and have a look. If you want to get involved, you can fill out the contact US page on our website. I think we're getting pretty close to being, full this year, but we can always squeeze people in, to, to do a presentation, to do a live pulmonary rehab class.
Um, you know, that that's the sort of thing we like to, to highlight, on the Batten Pass.
Rachel: Yeah. And last year, Russ, I think that there were many different countries where we could actually see how rehabilitation was done, and like you say, in low resource countries, as well, which was just fantastic.
and I do want to do a little shout out for your family because I think your family must have walked halfway around the world, didn't they? It was from grandchildren all the way up. It's absolutely wonderful. So there is a really good, feel [00:25:00] good, you know, there's this. Serious motivation behind it, but it's a really good, feel good 24 hours, isn't it?
Russ: It's, and as I say, you know, for me and for Ruth, we just felt like, well, COPD was a lot of little bits of celebrations here, there, and everywhere. And to us, the Baton Pass was a way of uniting everyone. To celebrate and to, to shine a light on, COPD through world COPD day, but then go one step forward and highlight the importance of activity, the importance of pulmonary rehab.
And, you know, we have singing groups that are involved because singing for your lungs is good. We have harmonica for health. so it's, it's not just about hopping on a treadmill or riding a bike or whatever, you know. Exercise can take all sorts of various forms.
Amy: Yeah, I, I, I [00:26:00] really enjoyed, 'cause the, the, I think I watched the previous baton pass and then I got to participate a little bit in, in last year's.
But I think I learned so much. Just be like, like. Like things that I never thought about, like things that I encourage with my patients. So I think we all have so much to learn from each other and just like bringing everyone together on one day. I think it's, is it 48 hours total? I can't remember. Or it's just 24?
Russ: 24.
Amy: It's just 24, but it's
Russ: 24 hours. That, that's enough. I've gotta stay at work for those 24 years.
Rachel: Say, we let Ross and Ruth sleep a little
bit.
Amy: I know because Ru you Rus will, I don't know, did you, but you'll be on the treadmill or one of your family members right? For 24 hours?
Russ: No, we're we're, we've changed the format this year.
So it's all about the treadmill challenge or the, or the step challenge. so it's about everyone getting on that. Yes, I'll definitely be on the treadmill for a number of hours this time around. But what we really [00:27:00] want to do is get everyone involved, bring everyone together. my treadmill at home is now broken thanks to two years of the Baton Pass, so it's time to move away from the treadmill and get everyone else involved.
And that's what we're, that's what we're going to do this year.
Amy: Oh gosh. That's wonderful.
Rachel: Just, just to clarify, if people want to get involved, clinicians or patients in your step challenge, how do they do that?
Russ: So if they go to the website, they'll see on the homepage there is a QR code. They can scan that QR code, they download the app, they join the team and away they go.
Um, the app can sync with just their phone so they can record their steps on the phone. If they have a wearable, then they can sync it with that. It doesn't really matter how you record your steps, and it doesn't really matter how many steps you do. You know, what we're trying to do is create community and getting [00:28:00] everyone involved, and we run a separate, step challenge through the year just with patients.
Um, and it's a, it's fantastic 'cause we have some patients who might do 25,000 steps in a day. We'll get some patients who might only do two or 300 in a days, but their 203, two to 300 steps are just as important as those 25,000 steps. And I was only talking to a, a, a clinician today about a particular patient in this group who said to me when he joined, I don't think I can do any more than 500 steps a day.
And the other day I saw he did 3000 steps in a day and. You know that that's the sort of thing we love to see because people are getting engaged and it is not a competition, it's just about a community. So everything we do is at a group. There's no individual competitions.
Amy: That's [00:29:00] wonderful, and we'll make sure all, all of this, information is in the show ni show notes like we had mentioned so that everyone can participate this year, which we're, I think we're all really looking for.
Russ: Appreciate that.
Amy: Yeah. All right. So I, I think this has just been such a wonderful conversation. I really wanna thank again, Dr. Evans and Russell, for joining us today to really talk about pulmonary rehabilitation. Promote the, the, baton pass. I just wanna thank you both so much for being here and all, and al also all the work you do for our COPD patients.
It's just so amazing and crucial and I'm just so, I just really grateful to both of you.
Russ: It's, it's a pleasure. And if, we're coming to the ATS, the Baton Pass, next year. In Orlando and we're going to have the cycle challenge again. I think you sought, there, Amy, this year it's back. So come and visit us at, at the booth and [00:30:00] and learn all about COPD from a patient's perspective.
non: Thank you for joining us today. To learn more, visit our website@thoracic.org. Find more ATS Breathe Easy Podcasts on transistor, YouTube, apple podcasts, and Spotify. Don't forget to like, comment, and subscribe, so you never miss a show.