47 - Darren Brown - Long Covid Physio

Episode 47 of the Long Covid Podcast is a chat with the fabulous Darren Brown, Chair of Long Covid Physio. We talk about what Long Covid Physio is and how it came into being as well as some of the fabulous resources that are on their website.

We also talk a load about the Long Covid Physio International Forum, which is a fantastic looking event coming up on 9-10th September this year. A link to register is below (as well as links to a whole load of other really brilliant stuff.)

There will be a bonus follow-up episode to this coming soon, so make sure to subscribe so you don't miss it!

Links:
1) Website 

2) About Long COVID Physio

3) Resources 

4) Quick Access
 
5) Video Series

6) FisioCamera

7) Safe Long COVID Rehabilitation (World Physio Briefing Paper)  

8) Long COVID Physio International Forum

9) Forum Programme

10) Forum Registration

11) Episodic Disability

12) Episodic Disability Research

13) Understanding disability


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The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and ar

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  0:00  
Hello and welcome to this episode of the long COVID Podcast. I am delighted to welcome my guest today, Darren Brown, who is many wonderful things but his role as chair of long COVID physio is what brings him here today. So we're going to chat a load around the series of videos that have been created, and also the International Forum event in September, I think. So, welcome to the podcast.

Darren Brown  0:24  
Hello, Jackie, thank you very much for having me. Pleasure to be here.

Jackie Baxter  0:27  
So thank you so much for coming along. Would you mind to start with just briefly introducing yourself and what it is that you do?

Darren Brown  0:35  
Yeah, thank you. So my spiel of my introduction is I'm a cisgendered gay white man, my pronouns are he him and his. I'm of mixed English and Irish heritage. I live in London in the UK. I am a clinical academic physiotherapist. So what that means is I work clinically in the NHS as a physiotherapist in London, and I also do research. My background in my clinical and academic work is specializing in HIV, disability and rehabilitation but also cancer care. 

And I have experience of living with long COVID. And that is what led me into connecting with other physiotherapists that live with long COVID and the formation of long COVID physio. And as you said, Yeah, I'm I'm the inaugural Chair of long COVID physio, which I'm very proud to be. And we've been working hard since our formation.

Jackie Baxter  1:24  
Amazing. I mean, you mentioned it just then this sort of connecting. And that's something that I've noticed myself since having long COVID, which obviously sucks. But it has led me to make some really wonderful friends and some connections with people that I would never have met otherwise. So it is it's really, really interesting, isn't it?

Darren Brown  1:45  
It is actually and I think something that I've learned through activism of other health care communities, and particularly my background, being clinical and academic in the realm of HIV is I learned this phrase from an HIV activist, very well known, called Peter Staley. And in his memoirs, he talks about connecting to create change. And that is something that we have done in long COVID Physio. We have connected together and across boundaries and borders to create change. And I think it's so important what connections can do in raising visibility, and making changes to people's perceptions, but also in terms of things like research policy and practice.

Jackie Baxter  2:25  
Yeah, definitely. So yeah, I mean, it's definitely a silver lining, I guess, to all of this. Would you mind talking just a little bit about long COVID physio. When did it get set up? And I guess what does it do?

Darren Brown  2:38  
Yeah, sure. So our strapline - so long COVID physio is a patient led international association of physiotherapist living with long COVID and our allies that work across education, advocacy, and also peer support. And peer support was actually our founding principle. 

So we were founded in November 2020, as a group of physiotherapists that connected on Twitter, across the UK, and also the United States, as physios that had seen what was going on with the raising awareness that people that had contracted COVID were living with persistent and often fluctuating or unpredictable health challenges. We some - most of us had not even heard of long COVID. But we started to connect online and realize that we were living with similar things. 

And that's where we all discovered long COVID And what was happening with all of the early advocates that were doing work from way early on in 2020. And so that was our founding principle in November 2020. We wanted to connect each other to provide each other with support. And the reason that was important for us is because as physiotherapists, or in other countries, they've got different names. So for example, in North America, we our profession might be known as physical therapists, in other countries, so for example, in France, kinesio therapists - the raison d'etre of our profession is often around movement. 

So any reason why movement may be difficult due to health issues or health related challenges, but also sometimes the treatments for those things. So a lot of what we do is helping people move and often that is about moving more. So the thing that connected us is that through our core as physiotherapists, physical activity and exercise is often seen as a mainstay of a lot of the rehabilitation interventions that we did. And we all tried to use it to help ourselves. And we all struggled and got worse because of it. And that's why we connected because we couldn't understand why we were using the thing that we thought would work for our symptoms, including fatigue, and we were all getting worse by doing the very thing that we thought was bread and butter safe rehab. 

And that was actually what brought us together really because we found this unique area of wearing dual hats of being healthcare professionals and people living with long COVID but also the healthcare professionals that often promote exercise and physical activity. And we felt like that's not right. That's not working. And very quickly, we learned so much from other health care professionals, other health care conditions, other communities or the groups, particularly people living with MECFS that raise the alarm quickly around stop rest and pace. And that was where we started in connecting with each other to share knowledge and skills and provide peer support to each other. 

But very quickly, we learned that we needed to also share the knowledge and skills that we was finding between between ourselves, we needed to translate that knowledge more widely. And that is where education started. So I think it was within a month of us forming. We launched our website in December 2020. And when we launched our website, the aim was to respond to some of the feedback we were receiving to say, but what do you guys know? So we made our website, we shared that information. And that is then what led us on to work around policy, and more recently, also around research activities as well. 

So in terms of what we do at long COVID physio, our founding principles are peer support, but we do so much more around that as well. So we provide peer support to physiotherapists and other allied health professionals living with long COVID internationally. So if you're not familiar with allied health professions, - they're the third largest group of healthcare professionals in the NHS, there's 14 different types of health professionals that fall under the umbrella of Allied Health Professions. And the ones that are most commonly known will be physiotherapist, occupational therapists, speech and language therapists. But as I said, there's 14, and there's many of them. So we provide peer support to all of those health care professionals or AHPs living with long COVID in safe spaces. And what we mean by safe spaces is that it's not a place for people to come and gawp and learn from us. It's so that we can actually share amongst ourselves. You know, we don't educate in our peer support spaces, other physios that don't live with long COVID. But that's where our education outputs come in. We provide loads of educational resources. And we have done lots of work around that since our formation in November 2020.

Jackie Baxter  7:12  
Yeah, that's really wonderful. It sounds like you've sort of grown arms almost

Darren Brown  7:16  
Yeah. And it's interesting, because I think that so many different groups have grown quickly. And I think that's a reflection of need. And there's been many groups that have formed, developed, grown. And what's wonderful about many of these groups is how connected they are. And through that connection are creating changes. So for example, in the UK, specifically, you know, big groups like long COVID support. long COVID kids, long COVID SOS, and long COVID physio, we often connect, and we work collaboratively across our different groups. So again, using those principles of connecting to create change.

Jackie Baxter  7:57  
Yes, exactly. Because, you know, with the many voices you can you can shout louder, can't you?

Darren Brown  8:01  
Yeah, and bring different perspectives and have diversity in those views and experiences, because long COVID itself is quite diverse, isn't it? So it's quite important that we have diversity in our approaches. And so yeah, that relates to education, collaborating on those outputs, but also in how we're working with the policy, whether that be at the level of NHS England and improvement or or further beyond that.

Jackie Baxter  8:25  
Yeah, using the voice of lived experience to influence the sort of policy of what's going on outside. 

Darren Brown  8:36  
Absolutely. Yeah, absolutely. 

Jackie Baxter  8:37  
That's, that's really, really important. You're right. 

Darren Brown  8:40  
And one of ourbiggest educational outputs early on, was the world physiotherapy briefing paper that we published in June 2021. So in June 2021, we published the Ninth World physiotherapy briefing paper in response to the Coronavirus pandemic, and it was titled "safe rehabilitation approaches for people living with long COVID". And it was specific to exercise and physical activity. And that's now been translated into 11 different languages. It's been used around the world in many of the formation of rehabilitation policies, guidelines and principles. And we know that it has been a bedrock of how to work upon what is constitutes safe rehabilitation. 

And we know that rehabilitation is sometimes seen in different ways, particularly historically. If we look at the historical impact of people living with MECFS about how things like graded exercise therapy and cognitive behavioral therapy were imposed upon people. The rehabilitation can be seen really negatively, but rehabilitation is broader than exercise alone. Rehabilitation is about health and functioning in everyday life. And it can be any intervention or approach that supports people living with a disability to either manage and cope with that disability; there may be aims and hopes to improve people's ability to function in the day to day life, but also to maintain functioning and, and mitigate deterioration. 

So rehabilitation can include things like pacing and education, skills training and heart rate monitoring and things like that. So, yeah, rehabilitation is important. And that's actually where I think long COVID physio comes in really uniquely in the global landscape, which is where we're probably one of the sole groups that brings the lived experience to long COVID disability and rehabilitation and worked broadly amongst many different areas in terms of education policy, and with our partners, including world physiotherapy, and many different professional organizations representing physiotherapists around the world. And so hopefully, we'll be announcing a new one soon. So yeah,

Jackie Baxter  10:45  
yeah, wonderful. But yeah, this network of organizations both within long COVID organizations, but also within non long COVID organizations. So within the sort of, I suppose, physiotherapy world for you guys.

Darren Brown  11:00  
Yeah. And that was really important for us, because our allies at world physiotherapy - so world Physiotherapy is the international professional body representing physiotherapists globally, and in 2021, they have, but every year they have world physiotherapy day. And in 2021, in September last year, they made their theme long COVID. And they used the world physiotherapy briefing paper and they worked collaboratively with long COVID physio to produce all of their educational materials, which are like one page sheets on what's long COVID, safe rehabilitation approaches and how to use pacing with your physio or individually, lots of information, and they have been translated into over 60 different languages. So there's loads of those resources and they're all available on our website free to access and download. 

So we're very keen to continue to collaborate broadly within long COVID circles and beyond. Because we know that people living with long COVID are increasing in numbers. So their global estimates at the moment, around 144 million people living with long COVID. Obviously they're estimates, but you know, our data in the United Kingdom through the ONS is probably the most representative data showing that there's over 2 million people in the UK living with long COVID. But recent data from the CDC in the US is saying one in five people after Coronavirus infection develop long COVID. 

So, you know, people living with long COVID are pitching up in all healthcare settings. And so that's why it's important that we also connect across different areas. And so we've worked with different physiotherapy groups that are representing other areas of clinical practice to ensure the knowledge around what constitutes safe rehabilitation is broadly known and widely disseminated.

Jackie Baxter  12:46  
Yes, definitely. And, and getting that information out to the people that need it as well. I mean, I've definitely noticed, partly from my own experiences, which haven't been as bad as some, but a lot of people talking about their doctors, if they are supportive, they certainly don't know what to do, they don't know what to suggest, they'll often suggest the wrong thing, you know, some form of exercise when that is not appropriate for that person. So getting some of this information out to those people can only help the patients because at the moment, the patients are having to advocate for themselves and some are too ill to do that.

Darren Brown  13:19  
100% Yeah. And that's why it's important as well, that those people that do have experience of long COVID and maybe have improvements in their symptoms continue to raise their voice and advocate. And I do put myself in that bracket. And so feeling very privileged to be able to continue to advocate for the needs of people living with long COVID

Jackie Baxter  13:35  
Because yeah, they're the people that are too ill to do it - they need someone to shout it for them, don't they? 

Darren Brown  13:40  
Absolutely, absolutely. 

Jackie Baxter  13:42  
So yeah, you mentioned the resources on the long COVID physio website, and and there's a huge amount of resources on there. So I'll put a link in the show notes to that.

Darren Brown  13:51  
Yeah, in terms of our website, so our website split into multiple different sections. So you know, obviously, we've got an about page that tells you about us, who we are, what we do, our founding principles, our objectives, and also our partnerships. And so who we partner with globally. Also on there we've got our Constitution, information about our executive board and also our terms of partnership in case anybody was interested in partnerships because we're always interested in partnerships. 

But other sections of our website include quick access, so like the Quick Access tab is so people can quickly access the information they need at the right time. Many of those are the world physiotherapy information resources from World physio day last year, the one pagers that are in over 60 different languages. But then also there's our resources page. Our resources page is split into a variety of different sections including symptoms specific or treatments specific or approach specific information. And they're constantly updated as vast amounts of research and information keeps emerging. We are constantly updating our website and but we've also got lots of other things on there including our work and and more recently information about our video series and the long COVID physio International Forum.

Jackie Baxter  15:04  
Yeah, you mentioned the videos. And they're awesome - they are so, I don't know, user friendly. There's so long COVID friendly.

Darren Brown  15:10  
Oh, thank you. Yay. It's lovely to hear that feedback. The video series really came from a moment of serendipity. So as physiotherapists we're constantly trying to connect - at the World physiotherapy Congress in 2021, which was online, it was meant to be in Dubai. But it moved online. I was part of the Congress planning committee and I had been on that role for two years. So before long COVID. And during long COVID. We had different sessions. And one of those was a discussion session on long COVID. And there was a physiotherapist who happens to be an illustrator, she had seen some of the work that we were doing, and she reached out to us. Her name's Laura, she runs an illustration output called Fisiocamera, which is really cool, because she's a physio, and she does loads of illustrations. And she has been so generous with her time, and offered to work with us pro bono, because she felt that information needs to be shared, and wanted to use the arts and illustration and graphic design and animation as a way of sharing information and in a digestible way. 

And so we're so happy with how this has been received. Because the videos, originally, we wanted to create one long video, and we realized that we didn't have the capacity. And also maybe people wouldn't be able to absorb all of that. And so we have been slowly gradually creating individual chapters of videos time by time, and we're constantly working behind the scenes to deliver them. And there's going to be a total series of eight videos, we believe. And we've released four so far. 

So there was the first video, which is what is long COVID. The second video is why is it called long COVID. The third video is some of the common symptoms that can be experienced by people living with long COVID. And recognizing that we've specifically spoke about some of the symptoms that are least understood. And often people are disbelieved about. And it just so happens that there are also many of the symptoms that are under the classification of MECFS. And then our last video is about the episodic nature of long COVID and the disability that can be experienced. 

And so we're super pleased that these have been received well, and like, we know that our recent analysis has shown that over 144,000 views of these videos have been seen across all different social media platforms, we're super excited that they're being received well. And what really makes me feel like we're doing good with this is the feedback that we receive. And people are sharing that these videos are helping them talk with their loved ones, their families, their friends, their colleagues in a way that helps them understand what's going on. And fortunately, we have been able to produce these videos in a way that's very much through Co-production. And so we work with people living with long COVID throughout, we have consultants we have peer review, we go through many phases of iterations and review and modifications to try and get this right. 

And so the fact that these videos have been received well, and are helping people in sharing their own lived experience with others that maybe just don't get it. But also validating people's experiences has been something that's really driven us to continue with this work. And we're super, super pleased that they've continued to be received well, so grateful to everybody that has shared their feedback and support and also those who have worked with us on these videos, because there's been an enormous volume of people that have contributed to these videos. Obviously, the biggest shout out must go to Laura at Fisio camera for all her generous work and fabulous animations.

Jackie Baxter  18:51  
But you're absolutely right. I mean that people really struggle to explain what they're going through to people that aren't going through it themselves. And I've found that myself and the you know, the support groups are full of it. And also, you know, when you're cognitively impaired, some of the time it's very difficult to find the right words to say it. And the idea that people only see you on your good days, so you look fine. If you can just direct them to a video that has done it for you. It makes it a lot easier to have those conversations, doesn't it? And then when people can understand, they try and help in a way that's actually useful.

Darren Brown  19:23  
Yeah. I suppose that's a video we haven't done. And hopefully we'll introduce some content around you know, how can people best help their friends, family, colleagues and loved ones with long COVID. But the bite size information is what's needed, isn't it? Because whether you're living with long COVID or not, I think we live in an age of short attention spans and having something short and snappy is beneficial.

Jackie Baxter  19:47  
Yes, definitely. For people with long COVID, even more so.

Darren Brown  19:50  
Absolutely. Yes. Well we're currently working on our next video. And this video is going to be about the impact of long COVID on data daily life. And this is going to be a really different video this time because of how we're producing this. So we're actually working with a number of peer support groups in Somerset NHS Foundation Trust, who deliver peer support groups for people living with long COVID. So we're bringing in groups of people with lived experience to share the themes that they want others to know about, on - how does long COVID impact me in my day to day life. 

And the reason I mentioned this is because you mentioned there about the invisibility - you see me on my good days, this is something that comes up so often, isn't it, the ups and downs, the episodic nature of it, but often, people don't see you when you're at your worst, because you're in bed or you're unable to function or you're unable to be around others. And so people do see you when you're maybe feeling better. And what I think needed to be aware of is the work and the effort that goes into being able to pace that means that it's successful, when it's so unpredictable, to be able to prepare and plan and prioritize, just to be able to be there in front of someone, for them to say you're looking good. And that feels destroying because you know that they don't mean bad, but it's always received badly isn't it.

Jackie Baxter  21:16  
It is isn't it and it's because you know that, you know, after an hour of talking to them, you're gonna go home and spend the evening crashed out on your sofa,

Darren Brown  21:24  
And they're not gonna see it - the preparation before or after

Jackie Baxter  21:27  
yeah and the fact that you were laying down and in a darkened room beforehand, as well. I get very frustrated when people don't understand whether it's friends or family or, you know, maybe colleagues at work, if you're working. But I think more recently, I've kind of realized that, how can they understand if they're not going through it? And I've had a little bit more patience with people. But at the same time, videos, like the ones you've been making will really help those conversations when you don't have the energy to really do it yourself.

Darren Brown  21:55  
Yeah, yeah, absolutely. And I think that's why the last video, which was on the episodic nature of long COVID seems to really resonate with people. Because it sings to that story of it's up and down. It's fluctuating. It's sometimes unpredictable in its nature. And it's, it's not anybody's fault that they're having a bad day. They haven't done pacing wrong. It's just that pacing is really hard, especially when the goalposts move. Yeah, we're super grateful for everybody contributing to these videos. And for everybody that's provided feedback, both constructive and positive.

Jackie Baxter  22:25  
I guess it's very validating as well, for people. I've sort of noticed on some of my better days, I sort of think, did I imagine that bad day, you know, and then you know, you see someone else's experience or a video. And you realize, actually, no, no, that's just how it is. And that's okay.

Darren Brown  22:42  
Yeah, yeah, absolutely. And especially for people that do experience post exertional symptom exacerbation, or post exertional malaise, you know, the delayed onset of those symptoms makes it so difficult to understand what's going on, and really difficult to prepare, plan and pace. And especially as I said, when the goalposts move, you know, if people are getting better, getting worse or fluctuating, it can make it difficult to know how much to do and when to do what certain things and you start to second guess yourself, Am I doing this right? Am I not doing enough? Am I doing too much? How do I know what to do? 

And then that's why I think, you know, the rehabilitation at the moment, I think, a real mainstay of what safe rehabilitation should be, it's about maintenance and stability. Because with the fluctuating nature of long COVID, you know, we talk about the knowledge of it going up and down, where you know, even across the day, like between different parts of the day, our symptoms may be different, they maybe worse or better, or just going up and down. And then also over the days, the weeks and clearly over the trajectory of living with long COVID. You know, we're talking months and years for people, you know, there are differences in how that fluctuates. 

But then there is also how people talk about them, episodes, so where people have crashed or had periods where it's got so much worse. And very often people are very clear around, they can recognize the triggers to that. But when people are having fluctuations, it can be so difficult. And so I do think that safe rehabilitation as a core principle for people with long COVID, and that relates to other energy limiting healthcare conditions as well, should be around stability, and maintenance of function, rather than an intervention that will make people worse.

Jackie Baxter  24:22  
Just because you can doesn't mean you should. 

Darren Brown  24:25  
Which is a really difficult thing to accept. When you want to do something you want to do it right? And to think that I shouldn't or can't do it, because there'll be repercussions for me over the next few days, weeks or longer. It's such a difficult thing to be able to accept because you have to be so disciplined and self critical to be able to plan all of that. So you know, when someone says to you, you're looking great, you know, you'd love it to be a really positive thing, but the reality is, is you know that you've done so much legwork just to get to that very moment of Looking all right.

Jackie Baxter  25:03  
Yeah, definitely, hopefully the videos and all the other work that you're doing or will be helping the understanding around this.

Darren Brown  25:11  
Absolutely. And that's why we're also delivering the long COVID International Forum in September this year. So this came from various suggestions to us to deliver what may be considered conferences or courses. You know, around the world, there's, there's a lot of need for healthcare professionals to receive knowledge and skills and education. Because there is a lacking amount of adequate information out there for healthcare professionals. We still have a lot of known unknowns in long COVID. And so we were being asked, you know, when are you going to do a course, when are you going to do this, we need to do that. And then equally on the other side of that, lots of people with long COVID want to have access to that information. 

And so this is why we took the dive into let's be bold, let's do something. And this is huge, and we're super excited to be hosting the long COVID physio international forum on the ninth and 10th of September this year. And if anyone's not familiar with this, the strapline is we're bringing the lived experience to long COVID disability and rehabilitation. Because we know that biomedical research is critical, we must better understand the mechanisms and causes of long COVID. But in parallel to that, we also must understand the disability that people are experiencing. And we must be able to identify how rehabilitation can safely and adequately support people experiencing disability. 

And so we want to make sure that there is in parallel to the existing groups and the existing work that's going on, very rightly so around biomedical research, that we don't leave behind the disability side of this. And so this is where we're bringing this unique element of bringing the lived experience to long COVID disability and rehabilitation. 

We're very proud to have partnered with Rocky Mountain University of Health Professions in the United States, who's our academic partner on this and helping us deliver this, and also partnering with Fisiocamera, again, because we're going to be bringing some arts to this forum, and the reason it's called a forum, not a course or a conference, is because this is not going to be a sit down, Listen, didactic teaching session, like a lot of scientific or healthcare conferences can be. This is bringing everybody together. And we have used our experiences of delivering conferences internationally, with other groups and other organizations to be disability inclusive, be dynamic in our delivery approaches, but also inclusive, to bring other people's voices. We're trying to break down the hierarchy of who has the knowledge - because we know that people with lived experience of long COVID probably have the biggest bucket of knowledge, because of the very amount of time they're living with this day in day out. 

So the forum is in partnership with Rocky Mountain University of Health Professions and Fisiocamera. We're very lucky to also have our sponsors. So a grateful to Kaiser Permanente, visible app, Temerty Faculty of Medicine at the University of Toronto and also Realize in Canada. And I'll come on to why we have sponsorships in a moment. 

But we are delivering this forum with five different formats. What I mean by that is, it's not just going to be someone on Zoom, teaching you what you need to know and showing a slide and people sit there, sit back and listen. There's opportunities to engage by the different formats we're using. So one of the format's is like our welcome and introduction format. So you get to meet some of the people that are behind the scenes, and also set us up for the day. We've also got science sessions. So our science sessions are disability inclusive, in that they're limited to 30 minutes, no longer than 30 minutes, we've got invited speaker who will be using slides to share the most up to date science on a topic. But that's not the end of it. That will be followed by a community led panel of people living with long COVID and allies to comment, discuss and translate the meaning of this science so that if people can't absorb the slides or the information that way, the conversation may be able to bring people and if they can only do 10-15 minutes, maybe that is where they get the information they need about - what does this mean to me and I and us, about living with long COVID. 

Another format we have is our discussion panels, no slides allowed. It is a panel discussion, and it's on the hot topics and we have ensured that we have 50% of our speakers living with long COVID. We also have not only discussion panels, to our discussion sessions, but we've got workshops. Workshops, are making sure that everybody has a voice. So an example of a workshop is we're doing a workshop on pacing, because pacing is really hard.

Jackie Baxter  30:23  
And we're crap at pacing! 

Darren Brown  30:25  
because it's really hard, right? And so the workshop is going to be in partnership with Fisiocamera, we're going to have some invited knowledge experts around the world come and introduce the topic of pacing, and it'll be live illustrated. So there's a takeaway message of it, and that we go out into breakout rooms, and everybody's got a voice. Everybody can share their lived experience, their clinical experience, their research experience, their policy experience, because all of these people are being invited to the forum about this topic. But we don't just finish there, we come back from the breakout rooms, we share the themes that have emerged. And that's also live illustrated. So from each workshop, there'll be illustrations that can be taken away, visual representations of everybody's collective knowledge. 

And then also the other format that we're doing, our fifth format, is our summary panels. So we're having reflections at the end of each day, so that we have people that have not presented - they're delegates or invited speakers that have maybe attended a couple of sessions. And they're going to talk about their highlights - what was the big thing that you took away from today? 

And to continue to be disability inclusive, we have thought about the timings of this - internationally is very difficult. But the timings of this, we factored in purposeful rest breaks or comfort breaks throughout every part of this programming. So there are breaks between sessions, we very rarely have more than one session back to back so that we know that people need to pace to be able to take part in this. So people can take a break, lay down, stop, rest, reduce the stimulation, if needed. 

We're also going to be using closed captions throughout so that people with auditory impairments or hearing impairments, as well as people that struggle with lots of different stimuli will be able to read and take the information on. It'll be delivered live, and also recorded for on demand content. So if people can't attend at all, you're not missing out, you can attend later on. 

And what we're also making sure, to be disability inclusive, is that people living with long COVID, people with disabilities, or people with other health care conditions can apply for a scholarship. What that means is you do not pay to attend the forum. We have a fee to attend the forum. And we have sponsors because we're paying our speakers. Our speakers living with long COVID disability and other health care conditions are receiving a stipend. We are acknowledging the effort, the contributions, the knowledge and the expertise that comes with being able to deliver any information whether you'd be in a 10 minute summary panel, or whether you'd be involved in a one hour workshop. We know that there is a cost to people living with an energy limiting healthcare condition. So we're remunerating people with a stipend, and that's why we have sponsorships. And that's why there is a small registration fee for health care professionals, academics, researchers and policymakers of 50 US dollars. 

But for people living with long COVID, disability or other health care conditions, they can register for a scholarship via our registration page, and they will not need to pay. So we know that many people living with long COVID and other energy limiting healthcare conditions are struggling because they may not be able to work, they may be having housing insecurity, financial insecurity. So we do not want to contribute to that. So we want to make sure that education and knowledge is freely available to people living with Long COVID, disability and other health care conditions.

Jackie Baxter  34:02  
Yeah, this sounds amazing. And like, you can tell that it's been designed by people living with long COVID. Because you have thought of everything that would be an issue potentially for people, you know, and even for the people that are too ill to attend on the day at all, because then they can just watch it back afterwards. So you know, it sounds awesome.

Darren Brown  34:22  
Thank you. Yeah, we have a forum Planning Committee, which is all members of the long COVID physio executive board. And the vast majority of us are living with long COVID have experience of living with long COVID, or are really key critical allies. And we in terms of our people that we're working with, so we've got 17 different sessions over the course of the two days. We've got over 80 speakers, and we have speakers from 17 different countries. So we're truly trying to be international. We obviously don't have enough representation around the world, there's always gaps. But we have speakers from the UK, Ireland, Canada, the USA. We've got speakers from the Netherlands, from Belgium from Finland, we've got Cameroon, Nigeria, New Zealand, India, we have speakers from all over the world that clearly wasn't 17 countries, but

Jackie Baxter  35:20  
it was quite a few! 

Darren Brown  35:23  
I got a few of them. And I know I've missed a few countries. But yeah, we have speakers from all over the world. We don't have speakers from South America region. So any Spanish speaking Portuguese speakers that would love to contribute to this forum, please feel free to make contact with us. So long COVID dot physio forward slash contact. Very welcome to reach out to us. Southeast Asian region, we don't have any speakers from that area either. So you know, we want this to be diverse. We want this to be inclusive, and we want it to be representative. And we know that across the world, people are living and experiencing long COVID. But we also know that there's diversity and differences in health care, delivery, and resources and structures. And so the experiences of me living in London, it's going to be very different to someone living in another city or another country or another regional area, anywhere in the world. So we don't want to be siloed in our information. So we we've worked really hard to try and have a diverse representation of speakers, we know that over 50% of our speakers are living with long COVID. Again, more than half of our speakers are women, a third of our speakers are from Black, Asian and minority ethnicity, or bipoc backgrounds. We're working really hard with purposeful diversity and intentional diversity throughout our speakers.

Jackie Baxter  36:45  
Yeah, sounds amazing. And this idea of getting speakers from all different countries, areas, backgrounds, you know, we can all learn from each other, can't we. Just because somebody is living in a different country doesn't mean that there's not something that they can bring to the table that would be really, really useful.

Darren Brown  37:02  
100% Yeah, absolutely. And, you know, we always run the risk of wherever we are, whoever we are, wherever our beliefs or attitudes, of sometimes finding ourselves in echo chambers, right. And so I think it's really important that we have diversity when we deliver things like this. So yeah, we're really excited - registrations open. So if people are interested in joining us you are very welcome to. As I said, people living with long COVID, disability or other healthcare conditions can apply for a scholarship. And that means they do not need to pay to attend. 

We have our forum information page, which is long COVID dot physio forward slash forum. On that you can find information about our keynote speakers, our MC, who's going to be comparing the whole two days, we've got a program at a glance available if you don't want to absorb too much information, and you just want to brief - what information is there. We've got a full program available. 

And also we know because it's international, our program page has a really good little widget that we found, which is called world time buddy. So it gives you a countdown to the each individual session. And it automatically translates into your timezone. So you don't need to figure out timezone variations, which catches everybody out, right? 

Jackie Baxter  37:34  
Aww I know, 

Darren Brown  37:34  
it's really stressful, right? So we know that we want people to feel able to participate, and to prepare and plan and pace their activities. So each of our sessions has its own webpage, so people want to share that they can. Each of our sessions has a countdown widget, and also a link on how to register. So we've tried to make this as accessible and open as possible.

Jackie Baxter  38:47  
Wonderful. And those links that you've mentioned, I'll drop all of them into the show notes. So if anyone's frantically scribbling down web addresses right now, then feel free to just scroll down and you can just click on them. It must have been a huge amount of effort gone gone into it all. But it sounds like it's going to be an absolutely fantastic event. 

Well, thank you so much for joining me today. It's been really wonderful hearing about everything you've been up to. And obviously there's loads of really useful information as well. So thank you so much. And I guess I look forward to seeing you at the International Forum in September.

Darren Brown  39:21  
Oh, thank you for having me, and I look forward to seeing you there too.

Transcribed by https://otter.ai