58 - Fiona Jones & the LISTEN Trial

Episode 58 of the Long Covid Podcast is a chat with Fiona Jones, Co-lead of the LISTEN trial which is funded by the NIHR and is currently recruiting in parts of England & Wales.

We chat about the 2 parts of the trial, how it's been set up and the benefit of their patient involvement both for the researchers & the the patients themselves.

Home (listentrial.co.uk)

What do people with long Covid think of LISTEN? (listentrial.co.uk)


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Transcript

Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, longCOVIDpodcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to, please consider supporting the show using the link in the show notes. If social media is your thing, you can follow me on Facebook @LongCOVIDpodcast, or on Twitter and Instagram, both @LongCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback, please do get in touch through any of the social media channels, or email LongCOVIDpodcast@gmail.com. I really hope you enjoyed this episode. So here we go.

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to be joined today by Fiona Jones, co-Chief Investigator of the Listen study, which is funded by the NIHR. So we're going to be diving into all things around this. So welcome to the podcast. 

Fiona Jones  0:18  
Thank you, Jackie. 

Jackie Baxter  0:19  
So to begin with, would you mind just introducing yourself a little and what it is that you do? 

Fiona Jones  0:24  
Sure, well, first of all, thank you for inviting me, it's really good to have this opportunity. I'm Fiona Jones, and I'm Professor of Rehabilitation Research. I'm based at St. George's University of London. But I'm also the founder and chief executive of Bridges Self Management, which is a social enterprise that works with different healthcare teams and does a lot of CO-design type work. 

My clinical background is as a physiotherapist, originally, and I worked in lots of different areas of healthcare, but mainly work with people with quite complex, ongoing conditions. And I became interested, like many people, thinking about how some of the things that we've learned in our research and our work that we've done could be applied to supporting people with long COVID. And that's what ultimately led to the idea of doing the LISTEN project, which I'm sure you're wanting to know more about. 

Jackie Baxter  1:22  
Yeah, amazing. But yeah, this idea of crossovers, you know, that long COVID is obviously a new thing, because COVID is a new thing. But it's got an awful lot of crossovers with conditions that have existed for a long time. So this idea of being able to kind of draw on that, but also help other people, I guess, who have been suffering for so much longer. 

Fiona Jones  1:43  
Yeah, and I think also, I just had to be thinking and trustful of the idea that how I would normally work would be using co-design principles. So I'd primarily be asking people who are living with the condition themselves, how they can help to shape and inform the intervention that we ultimately test, which is what I've done in other areas in Stroke and brain injury, major trauma or other areas of healthcare. So it was actually to have the confidence, I guess, myself to think, well, this is a new area for me, but can we apply what's worked in other areas, and then adapt and refine it for people to hopefully be able to support people living with long COVID, which, as you know, is incredibly diverse and different for each individual. 

Jackie Baxter  2:33  
Yes, exactly. Yeah. So and I'd love to talk more about that as well. But maybe to start with, could we just talk a bit about what the LISTEN study is? 

Fiona Jones  2:43  
Yeah, the listen study was funded by NIHR. And we started in 2021, in the beginning of August, but what we were thinking of this work as having two distinct phases. The first phase, which was the sort of first eight months was to co-design the intervention, that's a one to one support package, if you like, for people with long COVID. It wasn't just to think about what does the intervention need to look like, but it was also the training that the clinicians needed to be able to deliver. 

So we've done a big piece of CO design, which has involved more than 30 people with long COVID and 10 different clinicians that work in the field. But also, some of them have long COVID as well. And now what we're doing is we're testing out this intervention, which is, as I said, a one to one support package for people with long COVID. It's delivered remotely, up to six sessions. And it can be for anyone who has any type of symptoms of long COVID. 

And we are testing this in a clinical trial. So we're going to be recruiting just over 550 people, and they will come into the trial. And like a lot of trials, and this pains me to say it, with a lot of trials, there is a randomization. So you will either be randomized to receiving the intervention, or to carrying on on a usual care pathway, which I know for people living with long COVID can look extremely different depending on where you work. And then we are testing the impact of the intervention compared to just carrying on with your usual care. And we're testing it in lots of different ways. 

Jackie Baxter  4:37  
Yeah, of course. I mean, yeah, you've just touched on this kind of postcode lottery of long COVID support and, and care. And it is it's very different dependent on which country you're living in. But even within countries, isn't it you know, you can go to a service that sort of 10 miles away and receive completely different care. So, so Yeah, that must make it quite difficult to kind of test things out - when the like, "regular pathway" is so different in different places? 

Fiona Jones  5:05  
Absolutely. Yeah, I think it's, you know, I think when we we got the grant. So I co lead the grant with my colleague, Professor Monica Busse who's based at Cardiff University. And she comes from a rehabilitation research background as well. And we co lead the study together. But, you know, with all research, actually, there's a big run up to actually then finally getting, you know, awarded the grant. So we were working on this for at least a year, on and off, really sort of helping to shape the grant application, what it could look like. 

And when we started in August 2021, compared to where we are now, LONG COVID services look completely different, Jackie, across England, they have literally transformed. So England is very different to Wales, where we're doing a lot of our work in Wales, again, looks very different. Some areas got up and running very quickly, they follow the NICE guidelines, they've got long COVID pathways in place very quickly. I think England is probably a bit further ahead with those long COVID pathways. And I'm sorry, we're not in Scotland or Northern Ireland at the moment. 

But so we've had a number of rethinks as we've gone along, but I would say that a lot of it comes back to actually trusting in the authenticity of what you're doing. And you know, if it gets a bit messy at times, while we're still actually exploring and doing work in this space, that we hope will be really helpful and inform the support that people need. 

Jackie Baxter  6:42  
Yeah, and this ability to adapt is so important as well, isn't it? I mean, I've learned that myself from living with this, that you have no idea how you're going to feel day to day until you wake up that morning. And even how you wake up that morning isn't always a guide of how you're going to feel later on that day. So it's, it's this ability to sort of adapt and just kind of go with the flow, which is quite difficult sometimes isn't it? 

Fiona Jones  7:05  
I must admit, this is gonna sound a bit perverse, but I do quite like the sort of messiness of not quite knowing what it's going to be like, I don't know why. But my colleague likes things much more organized and structured. But I think that's why we work together quite well. But the other thing, Jackie, is that we have a group of seven people in all with long COVID that are our public patient involvement group. And often what they're doing is helping me to feel more confident about what we're doing. I mean, we had a meeting, our last meeting, we were saying, you know, is it going to be like a party where you worry that not enough people are going to come, and then you worry that you're going to have too many. And that's what I was sort of thinking about, I was vacillating from one to the other the whole time thinking, I'm gonna have too many, we're not going to have enough. 

And all seven of them said, you know, Fiona you really, really don't need to worry, what you're doing is right, it's just about getting the message out to people that they can access, they can self refer. So I mean, I know that we're going to talk about how people could, you know, put themselves forward to take part in this research. They were sort of telling me, it will happen. And I think also drawing on all of their experiences has been such a comfort to me, you know, I know my other colleagues have worked very closely with another woman called Fiona or Fi. And we work very closely, We're based at St. George's together, and I know that we get a great deal all the time, inspiration, ideas, creativity, from all those people with long COVID that we've got to know so well. 

Jackie Baxter  8:54  
Yeah, that's really lovely. And this idea of working with people with the condition. I mean, obviously, we're talking long COVID here, but you know, in all other sorts of research, you've got to involve the people who you're trying to do the research for, haven't you? Because you could know the condition better than the people living with it. 

Fiona Jones  9:11  
Yeah. And I feel quite strongly that, you know, some of the work that goes on in healthcare research has a sort of tokenistic approach to involving people. So it's like, well, you've got your idea, but you just want to test it out with a few people. And we really did start - though we took the principles of Bridges, which is an approach to personalized support that people use in health care. We took those principles, but we only used it as really a starting point. As to, you know, we're not starting necessarily with a complete blank slate because we do know some aspects that we think could help. But actually, before I even submitted the grant, and I know you're based in Scotland, I did talk to many people, including some people in Scotland, living with long COVID. And I just listened to their story. 

And it was a sort of snowball effect, Jackie, in that one person - so I also know somebody else. And I also know somebody else. And I just sort of spent my time sort of immersed in hearing their stories, because, you know, what people told us was how much they felt they were - and still are, completely floundering and not being believed. And they were dealing with the double whammy of the symptoms, and everything else that goes on around them and those sorts of things. I listened to lots of webinars, I went lots of listen to people talking about it, to try and sort of immerse myself in, in what it sounded like, you know, to me, as somebody not going through it, and how I could really sort of represent and, you know, use those experiences in an authentic way as I could. 

Jackie Baxter  10:55  
Yeah, and really using the patients from really early on as well, like you said, you know, there was someone that I spoke to, and they were talking about how, if you involve your patients too late on, you know, it's like turning a ship, you can't turn a ship that's already moving, because you really need to get people involved early on, because then they can really help to shape what you're doing and make it much better as a result. And that sounds like what you guys have done? 

Fiona Jones  11:21  
Yeah, I would really agree with that. And I think, you know, because I come from a healthcare background, I'm naturally also gravitated to people that are working in the public sector that got COVID that then also ended up with long COVID symptoms. So you know, sort of putting myself in their shoes as well, you know, working in schools or working  in hospitals in care homes. And I know that it's not only public sector workers that caught COVID, but they caught COVID at much higher rates than the rest of the population that was keeping themselves all safe at home. You know, so didn't have the choice. So it did talk a lot about and they were very, very candid about their experiences. 

Jackie Baxter  12:02  
Yeah, yeah, that's really wonderful. And, and I think, certainly, from my own experience, as well, you know, speaking to somebody who's gone through this horrendous experience, it's quite validating for them to feel listened to as well. 

Fiona Jones  12:14  
Yeah, 

Jackie Baxter  12:15  
you know, when they've been ignored by their doctors, or whatever, you know, and then, you know, to come to somebody who actually wants to hear their story. I think that's, that's good. 

Fiona Jones  12:23  
Yeah. Because an example of that, if I may, is when we just put out a call to say, if you're interested in this project, get in touch. And we were inundated by people. But what we then realized was that actually, we need people to support us with the co design. But we also, there are people that that may want to wait, and actually, beyond that expression of interest list to take part in the trial, ultimately. But we then realize that they couldn't do both. So if you take part in the codesign, then it actually excluded you from taking part in the trial. And so we then had to go back out to people and say, you know, if you take part in the CO design, then it will then mean that you can't later on take part in the trial. And we're still had many, many people that put themselves forward to take part in the CO design. 

And the reason why we decided that it would exclude people is because the CO design, which involved many sort of group meetings with other people with long COVID, almost became a sort of therapeutic space on its own. Because although I was involved in facilitating those sessions, the group sort of took on a bit of a life of its own. And they supported each other and they heard each other's story. And they said, this has happened to me, but this might help you and, and so in fact, we're doing an event, a couple of sessions next week, to capture the impact of taking part in that codesign. Because we felt that, and it's because that's what people have fed back. They've felt it has been therapeutic for them to take part in that process, which isn't - sometimes an unintended consequences of something that you do. 

Jackie Baxter  14:12  
Yeah, that's that's a lovely kind of silver lining of it, isn't it? 

Fiona Jones  14:16  
Yeah. 

Jackie Baxter  14:16  
It shows the power of support as well, I think of being listened to, which a lot of people just don't feel like they have ben. And so yeah, that's really, really wonderful. So you've designed this intervention, is that right? 

Fiona Jones  14:28  
Yes, that's right. 

Jackie Baxter  14:29  
Are you able to talk a little bit more about what's within that? Or is that all a bit hush hush at the moment? 

Fiona Jones  14:35  
No, no, no, it's, you know, I think there's only so much that you can keep hush hush about an intervention. So one of the aspects of this is a new resource, which I know maybe people listening to this podcast may be thinking, Oh, no, not another app or not this and that. So from our codesign people categorically said they didn't want an app. And actually what they wanted was to have a feeling. And this is where you get a much richer sort of picture of what's needed for people in CO design work because they said they wanted that feeling of a community in their hand, they wanted, I put across to them that, in a way, the evidence base just coming from what you love from a clinical trial, it comes from the experience of people like yourself that are living with it. 

So this resource is a book, an old fashioned book. But it's written together with people with long COVID. And it includes their stories, their strategies, their ideas, their creativity. And from beginning to end, it's been written together with these people that we had, probably about - I mean about 30 people that contributed but probably about 18 are together that actually we're really involved in, you know, we like that section here. We like this to be called that, we want this in here. And we wrote the content together. 

So there's a resource, but then there's also these one to one support sessions. And that's using the principles of, So whatever that person is sitting there in front of you with and experiencing, that's the start point for that person. When I explain it to clinicians, they say, Well, we do work in that way already. All I would say is that our LISTEN practitioners, sort of, they ramp up that whole approach. So it's 100%, about the narrative, the story, the experiences of that person. And then using their expertise together, they actually work out how to stabilize, how to learn about their triggers, how to build the strategies, so that ultimately they're looking at gaining more control every day. So the impact we hope will be on how people feel about their everyday life, their experiences, their activities. 

So in a way, I can't say exactly what it is because our practitioners already, or clinicians, we call them, I tend to call them practitioners, but you know that that's a clinician, but our practitioners, they go with the direction of that person, but they are really highly skilled and trained. 

Jackie Baxter  17:29  
Yeah, this sort of one to one, follow the individual, kind of, what's the word I'm looking for -a process? Maybe? 

Fiona Jones  17:36  
Yeah, 

Jackie Baxter  17:37  
I think that makes a difference, you know, because, you know, we know every person is going to be different, you know, even two people who have quite similar symptoms, they might have completely different home lives, or they're all going to be very, very individual. So their, their sort of treatment or care plan is going to be very, very different depending on all of the Things. I mean, one of the things that I found from the beginning was that, you know, I felt ill, I wasn't supposed to feel ill because, you know, I was supposed to have brushed this off, because that was what I was told, and then I didn't get better. And I didn't know what to do. 

And I'm an answers person, you know, I love answers, I want to find answers, because then I know what I can do. And it took me a long time before I could kind of actually find something practical, ah, I can actually try to do that. And that will help me. And once I started doing that things did start to improve a little. But it took me a long time to find that. And hopefully, with an intervention such as this, you know, it can help guide people in the right direction as well, rather than somebody having to use all of their very limited energy scouring Google and doing their own research, because some people aren't able to do that either. 

Fiona Jones  18:42  
Yeah, I think coming back to the training, so part of the CO design was not just designing the new book, the intervention, but also designing the training for practitioners. So they have all had eight hours of training. But that training has been co delivered with people with long COVID. And it follows a sort of path in terms of - so they really understand what the core principles - there are eight core principles of the LISTEN intervention. And they then think about the language and the strategies that they use around those core principles. 

But what we also want to do is to recognize that if you're somebody with long COVID, and you get then seen by long COVID service, although you may be provided with rehabilitation and screening and all of those sorts of services, the listen intervention is very much it's not fitting the structure of the service. It's actually focusing on you right from the start. And so for the practitioners, they had to sort of peel away their sort of tendency to want to fix and sort and jump in and give answers straight away. Which I'm not saying all practitioners work in that way, they don't. But when you work in a healthcare pathway, by nature of a pathway, people have to sort of move through. And it can be quite sort of formulaic in terms of that pathway. 

I have to say the work done in the long code space has been off the scale in terms of in England, in some areas, they have really been very innovative. And quite quick off the mark, which goes back to that original, thorny issue of like, usual care looks very different in different places as well. But I see part of this intervention as being about the power of the skills of that practitioner, and not under-estimating how powerful that can be, to provide a safe and therapeutic space. It's not a psychologically driven intervention, because I know people think Oh is this talking therapies, it very much comes from a sort of rehab basis. But it's absolutely about the personal story of that - the practitioner has to sort of stop themselves just, as part of this intervention, they haven't got their tick sheet of questions to answer to ask, you know, and there's no sort of formula. And that in itself does seem a little bit nerve racking for the practitioners. 

So, but we have 52 practitioners trained now. And we are a sort of a community now. So we're working with that community. So the quality of what they provide, tries to stay as really as high as possible. 

Jackie Baxter  21:35  
Yeah, really listening to the individual. That's important. You know, and with a five minute, 10 minute GP consultation, you know, you barely have time to get in the door. And you know, and that's not the fault of the GPs, because, you know, they've got to fit in so many patients but being heard, you know, as an individual, that's important. 

Fiona Jones  21:54  
Yeah. 

Jackie Baxter  21:55  
You're talking about the the training of the practitioners or clinicians. I think this is this again, it's really important, because, General, you know, GPs, for example. I mean,  there's a lot of people that are very happy to sit in bash GPs, and, and I think, actually, they've got an impossible job, 

Fiona Jones  22:12  
oh, completely 

Jackie Baxter  22:13  
they're trying to deal with all of these things that actually, you know, that they're not specialists, that's not their job. And yet, certainly in Scotland, you know, it's like, oh, you have to go to your GP, and the GPs will know what to do. And the GPs are like, Whoa, I don't know what to do here. So the training of the clinicians, you know, they need to be taught about the condition and all of these things that GPs, for example, just they can't know the specifics of so that's, that's big, isn't it? 

Fiona Jones  22:42  
Yeah, that's right. And I think it's the same. So we have allied health professionals, physiotherapists, occupational therapists, we also have nurses, we also have assistant psychologists, psychologists, all part of this group of practitioners. But in a way, what's nice about this, it doesn't matter what profession you come from. We call them our Listen practitioners, because they have become skilled and expert in this area. But the more that, you know, because I think if we have as our start point that we know quite a lot about some of the symptoms that people have, we know that there's drug trials, we know that there's things that can help. We don't have one answer to this - to long COVID. 

So what we're looking for - I say to people, you got to be a bit like a detective, and really try to help somebody to piece together what might be the right approach for them. And when I listen to my colleagues that are doing a lot of work around the whole notion of safe rehabilitation, it very much fits with that sort of movement around - This isn't just about you got to build yourself up again, slowly, you know, do your exercises, build up bit by bit? Because although we don't know 100% what works, we know what doesn't work. And what doesn't work, is that sense of, you know, you've got to push yourself on, you've got to try and set yourself goals, you've got to make sure you build up incrementally. And I've learned all of that in spades in through this co-designed, but also, this is the research that's emerging. That's very, very powerful around this area. 

Jackie Baxter  24:25  
Yeah, yes, exactly. And it comes back to you know, viewing each person as an individual person rather than a statistic or a number or someone to move through a pathway and to sort of clear off your desk kind of thing. 

Fiona Jones  24:37  
Yeah. And just to say, Jackie that the book that I mentioned, it embodies the whole approach. So, the practitioners have had to learn this book cover to cover, because we say to them, the answers are in there, you know, because these have come about through us collating information from people that are living with it and have built up a body of evidence themselves about what has worked. So I think when I say a book, I feel as if it does it a disservice in some way. Because it's, it's much more as people described it as like a community in your hand of support. 

Jackie Baxter  25:21  
Is this book available kind of generally? Or is it just through the intervention at the moment, 

Fiona Jones  25:26  
just the intervention, but everybody that takes part in the trial, even if they are, unfortunately, around about, I say unfortunately, I shouldn't say that. But if they are randomized to the usual care carried on and the usual care, they will get a copy of the book once they've done their three month measures. So they will get that from us. 

But I guess the other thing to say about taking part in research is it is - it's about one of the most valuable things you could do to try and inform how we support this growing number. You know, I was just catching up on some of the statistics around long COVID, the prevalence of on COVID in the UK alone, and it's frightening, isn't it? In terms of the numbers, and we know that the incidence is lower with the Omicron variants, but because of the increased number of people that actually got Omicron, then it doesn't make any difference, there's still going to be, you know, 2 million people living with long COVID symptoms. 

Jackie Baxter  26:26  
But yeah, it is it's frightening, isn't it? And, you know, this, this "living with COVID" thing, it's gonna keep going up, isn't it, you know, if people are going to keep getting infected, then the numbers of long COVID gonna keep rising. So it's, you know, it really is something that we need to kind of get on, like yesterday. 

Fiona Jones  26:44  
Yeah, and I'm really, really so grateful for anybody that actually refers themselves to take part in this research, because this research, in the majority of areas where we have the trial sites up and running, people can self refer. There's some inclusion, exclusion criteria, but you can self refer. But we talked about ethics before we started. And that was one of the things that the ethics committee really applauded us for - was actually to, you know, if you've seen your GP and you know, you've seen someone, then you can self refer, and just expression of interest. And the way to express interest is through that listen trial link that's hosted by Cardiff University, which I know you'll put on as a link at some point, Jackie, but just, you know, just have a look and see what you think about it. 

Jackie Baxter  27:42  
Yeah, that's great. I'd love to talk more about recruitment. But maybe first, could we maybe talk a little bit more about say, somebody did get recruited or recruited themselves or referred themselves? What would the next phase of the study look like for them? 

Fiona Jones  27:59  
Yeah, so there's a website where you can just do an expression of interest. But you can also just request a phone call back. So it doesn't have to be everything online, you can just request a phone call back. And then there, of course, there are information sheets, there is a film that you can - not a film, like an audio that you can access, that is people with long COVID that took part in this sort of initial work, talking about the project and saying how you can take part. 

Once you've sort of thought about it, then there will be a sort of initial lot of screening questions. It's extremely broad, because we wanted to cast our net wide. And then, now this is the bit that people need to have a bit of tenacity for, there are some questions to answer at baseline before the randomization happens. But the good thing about the Cardiff team is that they're very happy for people to do that in sections. They don't need to do all the questions in one go. And also they can do the questions for people over the phone if necessary, not just having to do all online. Because we've been very aware, we've cut it down as much as we possibly can. But as with any research, I'm sure you've spoken to other researchers, they've said the same. The burden of questions for people is a problem often. 

And once you've been randomized, and you'll get told You're either part of the intervention or you're on usual care pathway. There are two more sets of measures that will be taken - a sort of interim set of measures and then at three months as well. And the intervention you would just get allocated as slot or you will say if you can do some slots, some intervention slots. 

One of the things just to say is that if you live in Wales, you can basically self refer from anywhere in Wales, because there's a sort of central group of practitioners. But in England, it has to relate to where the trial sites are. So we haven't got this sort of core group of practitioners in England that can take people from everywhere, we'd love that. And we have thought about how we could do that. But at the moment, we've got trial sites in the Midlands, in Yorkshire, in London, in Essex, and but not everywhere. So that's the downside is that it's best to go on to the website to look at where the trial sites are, because they're not everywhere, unfortunately. 

Jackie Baxter  30:36  
Sure. And I'll put a link to that in the show notes. So people can hit that and go and have a look. So somebody gets recruited, and they go through all the questions and things and they, they make it that far, and then they get on to - either onto the intervention or not, did you say three months that runs for? 

Fiona Jones  30:53  
Yeah. So once you've sort of come out the other side, at three months, if you've done the intervention, hopefully, you're feeling better, I really hope you're feeling better and a bit more in control. But after three months, you can then do any other form of rehabilitation or anything at all. So what this can be quite attractive to is if you're in an area where there's a very long waiting list for something, to get seen by somebody, then you can actually self refer on to the trial in advance. Or equally, and our trial sites know this as well. And actually, they were very - there's only one area that aren't so happy about the self referral, that's just one trial site. But in every other area, they're very happy for people to be self referred, while they're waiting for other treatments, because it's a window of three months, to do the Listen intervention, and to do the questions and everything. 

And equally, you know, the same goes for people, you know, if you've had rehab, and you still have symptoms, then you can refer yourself to the Listen trial as well. So, you know, again, we just wanted to make it as easy and open for people to be able to - having said that, the issue for me is the fact that we haven't got trial sites open in every area in England, but it is what it is. And, you know, we're still confident that we're gonna, hopefully be able to recruit from those regions in England, ultimately, for them to hit their recruitment targets as well. 

Jackie Baxter  32:31  
Yeah, I mean, that's great that it's open to such a wide variety of people, kind of wherever they are in their journey, I guess. 

Fiona Jones  32:38  
Exactly. Exactly. And I think, so as long as you've had symptoms for more than 12 weeks. And you know, if you are sort of 13 weeks after having your episode of COVID, then you absolutely can refer yourself. And equally if you are, as many people are, coming through still actually first contracted COVID in March 2020, or even before as we know. Somebody on that codesign group said that he felt he was sort of the first person to get Covid - he was sitting next to somebody from Wuhan in December, and he caught symptoms afterwards. So he was convinced that he got it then but, you know, as we well know, it was certainly circulating around a lot earlier. 

Jackie Baxter  33:26  
Yeah. And there's a lot of studies that are excluding people that don't have a positive test. Where do you guys sit on that one? 

Fiona Jones  33:34  
No, we don't exclude people that don't have a positive test. Because of those people in the early stages that couldn't get a positive test. So it's more about the symptoms, you know, and we know that there could be 205 symptoms at the moment, or it certainly was last time I looked, it's probably more than that now, across 10 body systems. So no, you don't have to have a positive test. 

Jackie Baxter  34:01  
Yeah. And that's definitely a source of frustration among a lot of people that I've spoken to who were ill early on, you know, they have the most data because they've been ill for the most time. And yet, they can't actually get involved in quite a lot of different studies, because they don't have that positive test. So that's really great to hear. 

So yeah, you said the intervention will run for the three months, assuming it will take a bit more than three months to get results? 

Fiona Jones  34:25  
Yeah, yeah, definitely. So the the intervention itself is six sessions, so six of these sort of one to one support sessions. And the final measure is at three months. Because we started in August 21. We are with a lot of the studies that were funded by NIHR. At the time they were all the non hospitalized, all from people who are non hospitalized after COVID. People who are living with long COVID. Because of the nature of this work, a lot of us are under a lot of pressure to get this project through and our results out much, much quicker. 

So we are due to be a two year project, which means we will be looking at Autumn 2023. We would have, but we will, I'm sure there will be some sort of interim, you know, we'll gradually start to sort of share some of the key aspects of this work a little bit more. But we're really looking at autumn 2023 for the final results to be ready. Which is a year from now 

Jackie Baxter  35:31  
A year from now, isn't it? Yeah. I was just trying to do the Which year are we in now thing? 

Fiona Jones  35:36  
Oh, I'm so glad I even remembered it we started in 2021. 

Jackie Baxter  35:41  
So yeah, of course, because you know, if you're running a three month intervention on what, 500 people or something, you can't necessarily do all those 500 people at the same time, can you? 

Fiona Jones  35:50  
That's right, 

Jackie Baxter  35:51  
not with their 50 clinicians. 

Fiona Jones  35:53  
That's right. Each area has a target, usually of about 30 people that they're recruited locally. And I have to say Wales is winning hands down at the moment. They did an amazing publicity drive. And we've got many, many people now expressed interest and are consented and on that pathway, which is really great. 

Jackie Baxter  36:18  
Yeah, that's awesome. But you're still looking for more? 

Fiona Jones  36:21  
Yes, we want more, we want more. We've got sites that are nearly ready to open as well. So there's a big sort of lot of sites in Oxfordshire and Essex that are due to open. They're very close, and Sheffield as well is really close. But we've already got sites in Wigan, Coventry, South Warwickshire, all of Wales, as I said, and areas of South southwest London. So those are the main sites at the moment that we've got open, but you know, that Oxfordshire area is going to be really well covered, Essex, Sheffield, a lot of the sort of, you know, Coventry and Warwickshire area is covered really well as well. 

Jackie Baxter  37:04  
Great. So anyone who lives in those sort of areas - Look at the website. 

Fiona Jones  37:10  
Yes, yes, definitely. Definitely. 

Jackie Baxter  37:13  
Yeah. Fantastic. And obviously, this is a bit location -  I was gonna say location limited. I'm not sure if that's entirely fair. But you know, you've got to be in one of the locations where you've got a site in order to take part. 

Fiona Jones  37:25  
Yeah, unfortunately, yes, I mean, but what I would say to people is that literally as soon as we get the results - so alongside this project, we are doing a really in depth what's called process evaluation, so that by the time we get to October, we hopefully, October 23, we'll know exactly what this package of support needs to look like for people, you know, around the UK. And we will submit those findings, we will involve  NHS England, Department of Health in all of this work, to then inform what we hope will be something that can be successfully spread into other areas. 

Jackie Baxter  38:08  
Yeah, I mean, that was my next question. What what happens next? And obviously it you know, if even if it was an area that didn't have a clinical trial site - the intervention will hopefully be rolled out much more widely? 

Fiona Jones  38:21  
Absolutely. And people that took part in the codesign, many of them don't live in the trial sites. And, you know, some of them were saying, Oh, he's such a share, or I'd really do with this in my area, you know, but that's why actually, helping with research is such an altruistic thing, it really, really is, you know, people giving the gift of their time, their expertise is really, really important. 

And that codesign group, I will be always so grateful to them. But anybody that puts themselves forward for this trial will be helping us understand about the support that people, that will hopefully be there for people. 

Jackie Baxter  39:00  
Yeah, and I think it goes both ways as well, obviously, you guys, you need people to be involved. Otherwise, the research doesn't work, does it? But you know, the people who were involved, it's going to help them as well, because, you know, I mean, I find, you know, a sense of purpose is quite important when you're not working, but benefiting from the intervention as well. You would hope. 

Fiona Jones  39:20  
Yeah. Absolutely

Jackie Baxter  39:22  
Is this something that you know, once you get your results, sort of next year - that could be certainly used to inform other countries, other areas, for example? I mean, I'm in Scotland, and Scotland health is devolved, and I think the same in Northern Ireland, isn't it? But you know, might your results be useful to other places as well? 

Fiona Jones  39:42  
Yeah It was one of the reasons why I was really delighted to be asked to take part in that panel at the, you know, the long COVID physio, the international forum that was hosted  in North America and is that there is so much shared experience. And I just hoped, I think with any sort of project like this, you need to understand your route to impact right at the beginning. So we have this sort of, if you like, our route to impact is what ideally we would get to the end. And we then share, and we have a ready made training package for healthcare teams, we have resources ready to go. It can either be integrated into what's already there, or it can be used as the main intervention. That's what we're hoping for. 

We've already started a collaboration in Canada, with a project that they want to use the basis of listen to inform an application in their area, they're going to do the CO design work. It's a grant application. So we don't know whether it will be funded. But that's the sort of thing that can happen. It's that people can take, you know, maybe the CO design, the way we've done the CO design and take that and adapt it. Yeah. So that's, that's my wish, as well. Because otherwise, you know, we have to ask ourselves about the value for money for research that, you know, you need to be sort of be able to fast forward and get this route to impact speeded up as much as possible. If it's something that's going to work, then it needs to be out there. And being used. 

Jackie Baxter  41:19  
Yeah, exactly. And the sharing the learning and the crossovers and everything. You know, there's yeah, there's a lot of stuff out there now, isn't there? So it would be really, really great if people could, you know, really share that and listen to each other. 

Fiona Jones  41:31  
Yeah, could I just say thank you to people that have helped us be more informed about this area. So Margaret O'Hara who founded the long COVID Support Group was, I hope she won't mind me saying, but she asked me some very tough questions when I first met with her and help sort of shaped thinking about our PPI even more than we're doing, you know, than we had originally planned. And so I found that incredibly valuable, but also, you know, just the group of people with long COVID, those people that took part in the codesign, those 30 people, but also the people that I just got on the phone to engage their time when I was preparing for the presentation, so that I could get to try to understand so just like to, to thank them. 

And then the whole Cardiff University team are absolutely awesome in terms of managing this clinical trial. And then my colleague, Fi and Nero, and Nick and Jess, that are all part of the - who else have I forgotten about - Bernie, who are all part of the Listen project management group. They're amazing. 

Jackie Baxter  42:43  
Yeah, because it really is a team effort, isn't it? 

Fiona Jones  42:45  
Yeah. Yeah.

Jackie Baxter  42:46  
Fantastic. Well, let's hope we managed to get you a few more participants. 

Fiona Jones  42:52  
Thank you, Jackie. 

Jackie Baxter  42:52  
I'll definitely stick that link in. Yeah. Well, thank you so much for joining me today. It's been so interesting hearing about all of this, and maybe you can come back and talk to me when you get your results? 

Fiona Jones  43:03  
I would love to. I'd really love to thank you very much for asking me. 

Jackie Baxter  43:07  
Thank you so much for your time and yeah, all the best with the study.

Jackie Baxter 
Thank you so much to all of my guests, and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast - it's available on all the usual podcast hosting things and do get in touch - I'd love to hear from you.


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