01 - Barbara Melville from Long Covid Scotland

Episode 01 of the Long Covid Podcast is a chat with Barbara Melville from Long Covid Scotland. We talk about her personal experiences with Covid-19 and Long Covid, as well as Long Covid Scotland which she has set up to help campaign for better care in Scotland.

Long Covid Scotland Website: https://www.longcovid.scot/

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(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Welcome to the long COVID podcast with me. Jackie Baxter, I am really excited to bring you today's episode. Please do check out the links in the show notes where you can find the podcast, website, social media and support group, as well as a link to buy me a coffee if you are able, you should not rely on any medical information contained in this podcast and related materials in making medical health related or other decisions, please do consult a doctor or other health professional. I love to hear from you, if you've got any suggestions or feedback or just want to say hey, then please do get in touch. I really hope you enjoy this episode. So here we go.

Jackie Baxter  
Thank you so much for joining me on podcast. It's It's awesome to have you here. So I think first of all, could we have a bit of an introduction to sort of who you are, if you're comfortable with saying a little bit about what you do and or maybe what you did pre COVID, sure.

Barbara Melville  
So hello, I'm Barbara or Barb very occasionally, Babs, never Barbie and yeah, so my work is actually in language and linguistics and so on. And I basically look for forensic stuff in language bias and so on, which is why I'm really interested in the term long COVID. I think it's a really, really good term. I think we could have had worse. So that's my day job. I've obviously had to take quite a bit of time away from that, and from being ill, and from campaigning as well, and I run long COVID Scotland, that's obviously the other thing

Jackie Baxter  
I do. Yeah, so we'll come come on to that a little bit more. But maybe just to kind of give us an idea, you obviously have long COVID, like so many of us. Can we maybe just talk through your experiences of when you got ill, how it was for you, maybe a little bit any support that you got initially, sure.

Speaker 1  
So I'm what you call the first waver. I got unwell in mid March, 2020, and it started as this really benign, weird, but benign illness, and I just felt like I had kind of a cold type thing, and I had a feeling like I was breathing in dust. And as it went on, it was a bit like breathing at the wrong altitude, but it was tolerable and but then one day, it just suddenly turns and I collapsed at home and had to go to hospital, and I just couldn't breathe properly. And I remember lying on the floor for several hours waiting for that ambulance. And you know, my partner was like lying on the floor with me and holding my hand and radiating heat, and I really thought I was dying, and I just felt so, so unwell. And

Jackie Baxter  
sounds terrifying. Yeah, it

Speaker 1  
was absolutely horrifying. But the most horrifying thing for me was the lack of support. So when I phoned 111, and said, I'm going to collapse, they were not interested. They insinuated strongly that it was anxiety, that it was all in my head, which I've since complained about. And yeah, they changed their tune when I phoned back, or rather, when my partner had to phone back on my behalf and see she's lying on the floor. She just collapsed. But even one of the paramedics was rolling her eyes at me because I said I couldn't walk because as soon as I tried to get upright, I just felt really, really unwell, and had to lie down again immediately. I couldn't even go to the bathroom. My partner had to pick me up and put me on the toilet. It was awful. So awful when I got to hospital, which was like, I say, just for a day, I got treated really well there, there was a lovely doctor. I remember him. His name was ollie, and he said, I think this is your autonomic nervous system. So he was on the ball really early on about that kind of stuff, and because it was months and months and months before the idea of nervous system issues sort of came up in the media and that he kind of spotted what it was. And as it turned out, I found out in a research scan later that I also had heart damage. So that might have been in play as well, because it doesn't always show in your standard blood chest X ray ECG type presentation, you know. So that's what was going on. And, you know, I think I ended up going back into hospital at sort of five or six week mark, going I still feel like this, you know, I'm not collapsing, but when I stand up, I feel so unwell, and I still can't breathe properly. What's going on? And they had no answers. They're the only term, and this term, it's just, it's not my favorite term, because I prefer a long COVID. Post viral fatigue kept coming up, and

Jackie Baxter  
I sounds like it was so much more than that. And

Speaker 1  
yeah, and post viral fatigue, you know, it is actually more than that, but the language doesn't, doesn't tell you. That it's more than that, and it's it's so stigmatizing, and people that go through it know how horrible it is. But I immediately got put into, like, this waste heap, um, with this term. And I remember I phoned up my GP as well just to try to get some kind of follow up, and I said, my nails have turned white, and they were kind of, they're white with a red band at the top, and this is called the Terry's nails, and it can indicate liver disease, it can indicate heart failure. It's not something you want to ignore, but it seems to be something that's taken more seriously, and it's been in the UK. And the doctor, you know, he pulled me back, and he said, they're just pale. And I was like, no, they're not pale. They're white, there's a difference. And he said, No, you're just done well, you know, they just did a good cut. And I thought there's no way, no way that a man would have got that, you know what I mean. And men are being treated incredibly poorly around long COVID as well. I just couldn't believe it. So, yeah, horrible experience. Felt absolutely rotten for so long, and on top of that, not being believed. As I said in hospital, I did get some good care as well, and I think that kind of echoes what we see in the action group that I run. Some people do get the sympathetic doctors and healthcare professionals. Others don't, but either way, they still, they often don't have anything for you.

Jackie Baxter  
Yeah, again, because at this at this point, long, COVID didn't really exist, did it? I mean, obviously it did, but you know, nobody really talked about it. You know, we were sort of told that, you know, you you'd maybe be unwell for a week, but you know, if you were fit and healthy, you'd be fine. Now we know that not to be true in so many cases, but at the time, you sort of think, well, everyone else is better. Why? Why am I not better? There's nothing there to help us there. This was sort of the peak of the first wave, wasn't it, where everything was so bad that you know, so long as you weren't actually dying, this sort of didn't want to know,

Speaker 1  
yeah, the bar for hospital admission was so high. And I think, had I had symptoms like that, the breathing difficulties and, you know, the tachycardia and so on, and just feeling so unwell and that the temperature, I think in different times, there's no way I would have been sent home

Jackie Baxter  
exactly for millions of different tests, wouldn't you straight away, you know, chest pain, straight and, yeah, because of the circumstances, you know, you're sort of left to deal with it on your own, which, which is incredibly scary. Yeah,

Speaker 1  
the mental health effects of that, it's unbelievable. I was traumatized, but because I was so frightened of being told it was all in my head, I didn't really want to phone up the doctor and say, you know, I could use some support for my mental health here. And I think a lot of people feel like, I think a lot of people are anxious about being called anxious, yes, yes, exactly. That's not what's driving the physical symptoms. That's not a side effect. But, you know, just the trauma that goes along with

Jackie Baxter  
each other as well, don't they absolutely, you know, as soon as you start getting anxious, you know, I felt that, you know, it's when my breathing was bad. I then started panicking, and then the breathing got worse, and then my heart rate started, you know, going insane. And, you know, in this, this whole you get into this cycle, don't you where? Where you end up, basically having a panic attack. But, you know, to somebody else panic attack looks awfully like all sorts of other things. Yeah.

Speaker 1  
I think it's when that gets missed, when you know it's not understood. And again, not all health professionals do this, but the ones that see the anxiety, they think that's what what started it, and you're having to say, No, it was the fact that I couldn't breathe. Is what started that cycle? Yeah,

Jackie Baxter  
yeah. This is all going to be kind of long, long, longer lasting than long COVID even probably, you know, the anxiety and the trauma that a lot of people have have had. So I guess that's a big concern as well, isn't it?

Speaker 1  
Yeah. I mean, I got that that care on that day, but there were many times where I just felt like I'd been left at home to die. And I know a few people that have said the same thing, and that's going to take, that's going to take time I don't want to go outside anymore, and for, you know, various reasons, because I've had myocarditis, I'm having to hang off to make sure that that's clear before I can get Pfizer. And so I haven't had the vaccine yet. I'm very pro vaccine, just to be clear, but there was a medical reason. But even when I get it, I don't know how I'm going to feel about it going out, so I'm totally

Jackie Baxter  
with you on that. Yeah, vitamin D, yeah, I don't even do the shopping most of the time. My son, my partner, to do it because, you know, being near people is terrifying, and I've actually had my second vaccine last week, but it doesn't really make me feel any less scared. So Me

Unknown Speaker  
neither. We get the shopping delivered and we just, they just leave it at the door. Oh my goodness,

Jackie Baxter  
it's pleasant to that old anxiety thing we need. You realize that you know, obviously your symptoms have changed your life, but the way you view things as well, which is quite scary, isn't it? So obviously, throughout that sort of horrific experience, you've guessed, almost a year and a half on, for marchers, aren't we still, still not right?

Speaker 1  
I stopped counting there. I don't know how many. In the beginning, it was all about the days, yeah, I can tell you how many days it's been. I've just,

Jackie Baxter  
yeah, yeah. It was once it hit the year mark. I, you know, there was something mentally a year, you know, I sort of, I knew that nothing was going to change. But at the same time, hitting that marker was kind of, kind of soul destroying. And then, since then, I've, sort of, you know, it was only it was when I started, started doing podcast, I thought, How many months has it been now? I sort of feel I got to be able to put a number on it. Yeah, it's almost 17 now, you know, and in a couple of weeks, that will be, and it's, it's horrific, isn't it? So within that, that time you had the idea to set up long COVID Scotland. So can you maybe sort of explain a little bit about what gave you the idea, and sort of how did it, how did it happen? Yeah, I was

Speaker 1  
thinking about this earlier because it feels more just. It wasn't really an idea so much as the necessary pile of bricks that landed in front of me, if that makes sense, I'd been campaigning, and was one of the founding campaigners of the UK group, not not the founder of the group as such, and it was a support group started by Claire Hastie. But I think a few of us got on the phone and said, What can we do, and what can we do about this? And I remember, because I couldn't sit up right at all. I was lying, climbing in my bed, having these phone calls with these people. And, you know, they were, some of them were like, going on Sky News, and so on that day, then we'd come back on the phone and be kind of giggling while you were on the news and stuff like that. And then we were working out these campaign strategies. And it was like a kind of magical, horrific time. But of course, Scotland being different, you know, just just meant we needed something else here. Because even though they were a fantastic group, and still are fantastic about, you know, you know, bringing in the devolved nations, and sometimes the letter that's written for Westminster can't just copy Scotland down. It's not, it's not going to work that way. And so I decided we needed something else. And couple of my colleagues I started the group with, called Leslie and Tess were quite involved in the ideas early on as well. It was just, we just needed to do it. Somebody needed to do it. And I have this habit of being that person, and I could see something needs done. I really wish someone else would do this, but I don't think anybody Yeah, yeah. And although I have had issues with brain fog, which I'm sure will come out more and more as we speak, I do tend to have better days than a lot of people in that regard. I'm not sure why, but I have so I can sometimes sit from seven in the morning until midnight and work on campaigning and not have a crash. That's the other thing. I don't get the same kind of pattern as of post exertional malaise that some people describe very, very lucky there. I'm still very unwell. I saw the orthostatic intolerance, and, you know, I spent a year not being able to walk because of that, but I certainly could sit on my backside and type and campaign and fight and push. And you know that that fire in my belly as well said cortisol around my body probably immensely unhealthy. I'm not saying for anybody out there that this is what you should be doing, and I think I set a very good example. But, yeah, that's how it's been. Yeah, it

Jackie Baxter  
sounds like it's given you a bit of a purpose as well. Absolutely, I certainly find, and I'm sure a lot of other people you know, that you've had so much taken from you, you know, all of the things that I would normally do, and I feel like, you know, I am not really the same person I was a year and a half ago. So actually, having having some sort of purpose. I mean, I chose to learn violin, which is a much louder purpose, and I'm not sure it's making me very popular with my neighbors, but, you know, I just, I feel like we need something, something to kind of hang on to. We'll be right back. I'm interrupting myself for a second to tell you about long COVID breathing. The Fabulous Vicky Jones and I have teamed up to bring you long COVID breathing. We are both passionate about sharing our expertise and experience of the breath and how incredibly helpful that can be with long COVID We've worked together to develop a course that is specifically tailored to those with long COVID It's a six week course with 12 sessions all delivered online. The community feel and learning that we're all sharing is such a joy to find out more information and to sign up for our courses, workshops and other shorter sessions. Please check out the link below long covidbreathing.com or email long COVID. Breathing@gmail.com to start your breathing journey with us.

Speaker 1  
Heard a few other people in the kind of campaigning world saying the same thing. It keeps you going. You know, I felt I had purpose before in linguistics, I love language. I'm obsessed with it. It's amazing, and I'm wanting to work in it and study it more. But in order to get through this, this horrible illness, and, you know, and support the people around me, I needed to do something. Yeah, definitely needed to do something. I couldn't have sat and waited.

Jackie Baxter  
Yeah. I mean, you can sit and we wait for a few weeks, can't? You can't sit and wait for a year and a half, absolutely, you know, or, you know, plus, you know, yeah, it's, it's, it's tough, isn't it? Yeah, so, so, you know, going back to the campaign group, what, you know, what, what? What are we hoping to achieve? And then better care is an obvious one, what's sort of on the agenda and what? What have we achieved so far?

Speaker 1  
This is where I get idealistic, very idealistic. What I want is for somebody with any symptoms of chronic illness to be able to go into their doctor and get diagnosis, evidence based treatment and support empathy, and for them to also have that extended to other areas of their life. So when they mention it to their mom or their aunt or their best friend or their boss that they get the same support and empathy now, that is incredibly idealistic, and if we see that in my lifetime, that would be a miracle. But that is, that is what we're moving towards. And I think, as you say, the care is the key part. If we can get lived experience at the heart of the, you know, the services and so on that are being designed and delivered, that would be a great start. And for that to then translate into to treatment and care. That would be brilliant. But I would like it to be wider and more cultural. I think it's a culture we've got issues with how we view the Chronicle and and that really, really needs to change. I would say I would like to see everything change in terms of what we've achieved so far. I think we've we've started to make a dent, and in all of that, we have our relationship with the clinical priorities team Scottish Government, and it can be hard to get that kind of relationship as quickly as we have. And I'm not saying that we've, you know, necessarily done more than other, you know, similar groups have. I think it's partly just the context, but it's still an achievement that we're very proud of. And yeah, we're just we're working away. We've got different subgroups within long COVID Scotland. So we've got campaigns group, and they take care of their relationship with government. We're looking at setting up a cross party group as well. They do a lot of work on campaigning. We've also got an Employment and Social Security Group that's just started up, and they're looking at more well as it sounds just, it sounds the employment side of things, because some people are losing their jobs, or they can't find work, or they're too on well to work, they're being pushed back to work.

Jackie Baxter  
That's such a big concern as time goes on, isn't it? Massively.

Speaker 1  
So there's that, and we have a research strand as well. And I think they're kind of more research and medical and partnerships. So they are really, really big on making sure that the lived experience and the patient voice, I can use the term patient, are kind of central to everything that's happening, and that we can get towards that place where we've got that evidence based care. So there's a lot being chipped away at all all the time, a lot happening. I think it's hard to kind of just list the achievements. I struggle with that, but we really need to make that list and put it on our website. But there's a lot of work we've done, a lot of studies that we're part of, a lot of partnerships that we've made, and a lot of people have learned from us, and we've learned a lot from them, too. So we're definitely, we're definitely going places. Yeah,

Jackie Baxter  
no, it's fantastic. And so much has been achieved in such a short space of time as well. Yeah, because as much as you know, to a year and a half to you or I, it's, it feels like a lifetime, doesn't it? You know, since, since we got help. But, you know, in the context of actually achieving things. You know, it's, it's an awful, awful lot that's what's going on with it that's really impressive. And, you know, obviously incredibly necessary as well. You know, having that, I guess base of people that all felt the same, that something has to happen, and if I don't do it, no one will. Yeah, exactly, you know, I guess, you know, with the different groups that you've got, you know, you you've got, you know, different, I suppose, different people being put into different camps, raising awareness. And you know, which is important. And. But you know, also, you know, you know, fighting our corner as well and saying, This is what we need. I guess it's two sides of, you know, the same thing. Both are necessary, absolutely,

Speaker 1  
and it can, it can be challenging. There is, there is too much to do. Yes, yeah, maybe more volunteers. So if anyone's listening and thinking, Oh, I fancy doing that, do, come

Jackie Baxter  
along. We're a collection of ill people who are kind of trying to fight for care and recognition and everything that we need, aren't we, which is obviously quite difficult when you're when you're not well. Yeah,

Speaker 1  
that's a huge challenge. It's really, really difficult, and something that we're very clear about, even if we don't always set the best example in the as in terms of the subgroup leads, like myself, we really don't want people pushing themselves, pushing through and when they're not well, I feel I have to do it, and I don't have post exertion. I'm always so I can push my stuff a little bit further, but it's it's a problem. And so we can always use, always use more help. And people don't have to have long COVID, they can be an ally, as long as they've got an interest and it's close to their heart in some way. You know, we could absolutely use their help. I was just chatting to a friend this morning. Is saying, Well, I can do a few hours a week. And I was just like, yes, yes. I'm Heather, definitely,

Jackie Baxter  
totally Yes, yes. It's hard to say no. I struggle with saying no, do things. And I've always said yes. I've always been a yes person. Oh yes, totally. I'll take on all of that, you know. And they say, if you need something doing, give it to a busy person. And that's that's always me. And I certainly have had to learn sort of when, to say no,

Speaker 1  
my boundaries are actually, despite what I'm saying, are actually better than you were. And I just feel this really strong sense of duty sometimes. But I think maybe we could it's

Jackie Baxter  
that feeling of letting people out as well as you know, if you sign up to a meeting, and then you realize that you can't do it because you're feeling that bad, and you sort of think, oh, but then, then you worry, because, you know, you don't want to let people down, so you just end up with this big pile of guilt on your head, which makes you feel bad as well. So it's difficult.

Speaker 1  
We tried very hard to make people feel okay about that, yeah,

Jackie Baxter  
personality thing as well, isn't it? I think the sort of people that wanted to campaign and raise awareness of the sort of people that are terrible at saying, No,

Unknown Speaker  
yeah, because they're nice people. It's it's yes, it's

Jackie Baxter  
really difficult. Are you able to talk a bit about the work you've been doing with the Scottish Government?

Speaker 1  
So we've been working with the clinical priorities team of the Scottish Government, and since around December last year, and there's various bits of work in place around long COVID, and we've got a lot of time for this team at the same time, though, I think that we need more. You know, the work that's been put in place so far, we don't really feel is translating into the care that people need. And so, you know, we're hoping to meet with the Cabinet Secretary for Health soon so we can discuss things. We'll continue meeting with the clinical priorities team monthly. It's fantastic. We've got those meetings. And, yeah, so, you know, the ball, the ball is rolling, but it's got some way to go, is what I'd say.

Jackie Baxter  
No, it's, it's amazing that you know that you've got that like so you've got that relationship with your foot in the door,

Unknown Speaker  
yeah, yeah. There's, there's some decent people there.

Jackie Baxter  
That's, that's great. And I guess we have to hope that with with time, that will translate into more of what we need. We'll be right back. Hey there. I'm just jumping in for a second to see if you're enjoying this episode. If you're finding it useful, maybe you would consider sharing it somewhere, a friend, a group, or even on your Twitter feed. If everyone was able to share just once, we'd be able to get this information out to even more people who really, really need it. So please consider sharing somewhere if you possibly can, I hope you enjoy the episode, and thank you so much.

Speaker 1  
Yeah, I think so. I think it can be difficult for anybody who doesn't have lived experience to really step into our shoes. I think that's part of the challenge, and it's a it's a busy time. We're in the middle of pandemic, and so I do have empathy for them, but I have a bit more empathy for people with long COVID, I have to say. So there's, you know, we're off to a good start, but there's more to be done,

Jackie Baxter  
I guess. And maybe that's where the campaign angle of it comes in. You know, the more is, the more that is known about, you know, non COVID, and people that are suffering with it, the easier it might be for people who don't have it to kind of understand, yeah, absolutely, getting that side of it out there as well, isn't it? You know, I've found just from speaking to, you know, my friends, my boss, or just, you know, anybody that that I'm sort of in contact with, and you know, they can be empathetic and. They can sort of, you know, they can be nice, and they can sort of say that they get it, but unless they actually have, have seen it, have experienced it, even, you know, it's very hard for people to understand. Even my partner, he's lived through every minute of this with me, you know, he, he still doesn't quite it's, yeah, you know, he'll understand to a point, but he doesn't understand how it feels. Absolutely,

Speaker 1  
absolutely people don't quite get it. And there is this kind of cultural idea around chronic illness. We had a summit recently, and this was something I talked about people have did they want to preserve themselves and to imagine the oppression that they would feel as they were in this situation is quite a tall order for people. We're kind of programmed not to look like that. And, you know, we're programmed to believe that if you get sick, you go through a series of rituals and you come out the other side. Well, that's what's supposed to happen. And people that don't do that are kind of breaking the rules a little bit, and it makes people very, very uncomfortable. They don't want to sit without discomfort, and so they create this narrative whereby, if they got sick, they would, I don't know, take probiotics and yoga juice or whatever it is, and that they would somehow magically feel better. And it's very, very common. I've had chronic illnesses on and off my whole life. But I am sure when I was 16 or 17, I probably felt the same kind of thing. It's, it's just, it's just who people are, and this is definitely something that we need to challenge. But yeah, everyone is vulnerable to it, and civil servants and parliamentarians are no exception. People need to be really, really open minded, and yeah, hopefully, hopefully there will be absolutely

Jackie Baxter  
and, yeah, the idea that there isn't a, there isn't a drug to take, and you'll be fine, is scary to people, isn't it? So, you know, rather than being scared, they kind of maybe try to avoid the issue. Yeah, you mentioned the long COVID summit, so maybe we able to talk a little bit more about why, why that happened, and maybe what, what, what it was for anybody that wasn't there? Yeah, absolutely.

Speaker 1  
I think it's just got to the point where there really isn't enough. It's this has become a crisis for Scotland. It's an emergency. And so it was put together quite quickly. And yeah, that that was, that's what it was about. It was about the fact that what's been put in place, while extremely well meaning, we're sure of that just isn't translating into, you know, diagnosis and care for people. There are people who are, you know, sitting at home with chest pain and breathlessness, and they're going to the doctor, and their doctor can't help, or the tests are coming back normal if they're getting them. And some people aren't getting anything at all. People getting repeated like, chest infections and so on, too. People with neurological issues, and some of these are really, really severe and serious symptoms that people are experiencing, including, like, I say, the chest problems, so symptoms of heart attack, symptoms of stroke, and people are sitting at home with this, and they're not getting help. And the sign guideline, although, you know, definitely got time for sign, and we were happy to input into that, the implementation note that went along with it, that was worked on by Scottish Government. And we did input into that. It just doesn't seem to be, again, translating into anything. It's not helping people, as far as we can tell. And we just thought, we need to do something here. We need to get people in a room. So some that's traditionally, are about getting the kind of the most important people in the room, and in this case, that was the people with a lived experience. And that was also including people with lived experience of other conditions as well that overlap, that are similar, that some people may get diagnosed with. So I'm diagnosed with or provisionally diagnosed with postural tachycardia syndrome, and I use the term long COVID as well. So we had other, you know, groups in the room to represent those people, as well as parliamentarians and just other experts that were doctors there too. So just for bringing all those people together and saying, what are the problems and what are the solutions, potentially what we work towards? And it was very positive and a great turnout. And given that it was something that was like kind of crisis, put it together really fast and brilliant event, and that will yield our report of recommendations, which we're working on at the moment. So we should be seeing those soon, and those will go to Scottish Government and any kind of other players in the game that can can benefit from seeing seeing those recommendations. So it was, it was a good event. The powerful. And I don't know if you were there, Jackie, but

Jackie Baxter  
it was, I missed the first half of it because I had a really bad night's sleep and and managed to let myself sleep in but I saw the second half, and it was like, drawbacks, problem. I was just definitely gonna get up for this. It's great. I set my alarm and then I sort of didn't sleep by the time my alarm went off. And I was like, You know what it

Unknown Speaker  
is on our website? And.

Jackie Baxter  
They want to flash back the first

Speaker 1  
half long COVID. Dot Scott, for anybody that wants to have a look at it, because the personal stories are, they're just, they knock your socks off. And I think that is the key to the you know that that problem of how people really get into your shoes when you see so many stories like, absolutely. I mean,

Jackie Baxter  
there was one, there was one person that said something like, you know, maybe I should have just died, you know, if this is what it's going to be like, and that was just like, you know, I'm sure, I'm sure we've all thought things like that, exactly that. That's how people feel. Someone actually sort of spoke it. And you just sort of, how many, how many millions of people are there sitting out there feeling like that, you know, it's

Speaker 1  
absolutely tears were shed. Yes,

Jackie Baxter  
it was pretty hard hitting some of it, but, but yeah, I mean, so, I guess you know, the hope is that you know that will get fed into government policy. I guess is it? Yeah, so are we? Are we hoping that the Scottish Government will go through with things like long COVID clinics, even though they've made clear that they they're not planning to, but it's something that we would support. I

Speaker 1  
think so. I think that's the dream. I mean, if you ask people in the Action Group, what's the one thing that you feel you need right now, it's specialist, integrative care. That's what everyone says. And I think, to be clear, because there have been some criticisms and the media, I don't know where they've come from, some people say, Oh, well, they're just seeing what's what's out there in England, and they're just saying, we want that. It's not that people are people have thought it through. They want to be able to go to the one stop shop. And as we were talking about earlier, about how it can be difficult to leave the house, and if you're on several different pathways, one day, you're going for a respiratory appointment. A few weeks later, you might be going for a cardiology appointment. Again, this is if you get on the pathways which many referrals are written, rejected, left, right and center. But you're all you're all over the place. Imagine being able to go into one space and to see a respiratory specialist, a neurology specialist and a cardiology specialist, and maybe other specialisms as well, like rheumatology, you know, allergy, and it's much more than three let's face it, just imagine being able to have that experience where it's all done at the one time, and those people, crucially, are communicating with each other, and they know about long COVID And then your you know your infection risk is incredibly low because you're you're going to one Place, and imagine that the effect on your mental health, even if at the end of the day they say, like, there's not an awful lot we can do about this, but we can tell you that you're safe and or here maybe you should try some antihistamines or maybe beta blockers would be right for you just to have

Jackie Baxter  
that. It's the central, you know, the central kind of thing, I think that that we feel that we're missing, isn't it? You know, if you're able to get referrals and stuff all over the shop, and that's great. But like you pointed out, you know, we're, we're ill, it's very do it yourself, whereas, you know, a clinic is a central, kind of, you know, some one, one person is kind of, you know, overseeing.

Speaker 1  
That's too much to put on GPS just now, they're working so hard, it's such a difficult time for them. And you know what I've had to do is go down the private route, and I'm very privileged that I can do that. It hasn't been easy, but I am thinking about the people who are in the less affluent post codes, or who have other disadvantages, other protected characteristics and so on, what it must be like for them to have to deal with this. They can't go private and a lot of people. But being able to do that has meant I've been able to go down different paths and get the different things I need. And that has improved my situation so much. But it was incredibly expensive and incredibly difficult. I'm still not I'm still not there, and I know that still not right. That's on the G my GP, and there are some sympathetic GPS my practice, don't get me wrong, but most likely I'll get dismissed, and I'll get told, you know, we're not doing that. I mean, a cardiologist is quite happy to tell me that it could be dangerous for me to get the vaccine, but the NHS wouldn't pay for the MRI. I had to work out for that, yeah, so they were quite happy to for the sake of the cost to gamble with my life. That's not right. That is a broken system. It's so so broken, and it's so unfair, and it's so dangerous and it needs to change, and we're here empathizing with the challenges that Scottish Government have, and we're willing to have the difficult conversations. And I met with a health economist the other day. I don't know if they've ever met with a health economist. We have to try to. Solve some of these problems, because we know it's difficult. And, yeah, this, this is where, this is where we are. It's, it's, it's so hard. It's so hard for the people who are unwell, just trying, trying to get that and that, again, the clinic would just it, would it would help so much. I think it would actually be cheaper than, than leaving people at home sick?

Jackie Baxter  
Yeah, I mean, I guess that, you know, the longer more people are ill. It's a really bad way of saying it. But you know, you've got the economic cost as well, actually, haven't you? You know, if that many people are off sick and can't work, you know, the longer that goes on. You know you're you've got, you know, you're balancing up more than one thing, aren't you, absolutely

Speaker 1  
but even even in the health budget, I think the Cabinet Secretary for Health said the other day something along the lines, and I'm paraphrasing, but you've got to, you know, be careful about how you move money in the health budget, because you don't want to take it away from other areas that need it, which I think was quite difficult for people to hear. But is it not costing a lot when people are going back and forth to A and E with chest pain and breathless once a week? I mean, my understanding is it's hundreds of pounds for every time someone does that, you know, if you had the the care for them the clinic. And I think we just need, we just need to have these conversations and maybe be a bit

Jackie Baxter  
creative. Yeah, I need to think outside the box a little bit, maybe, and they have been,

Speaker 1  
and I think I can't remember the exact details of this, so forgive me if I'm kind of half making this up. I know in Hertfordshire, they have the Hertfordshire model, and my understanding in the Hertfordshire model is that there's a GP who has a little bit more referring power than most GPS do, so they can send someone for an echocardiogram, and they're the long COVID GP, and people come to them and like I say, they can get referrals, and they can that person understands what long COVID is, and they get to call themselves a clinic. And although I don't know for sure, I imagine that that's a cheaper model than getting a big, glossy building and getting lots of consultants. You know, there are ways using what you have, and we need, we need to explore that, rather than shutting it down because people are sick and they're sitting at home with severe and serious symptoms, some of them. We have someone in our group who found out that he needed heart surgery, for example. This isn't just about a little bit of tiredness, you know, and that's true for people with other chronic illnesses as well. They've had the same stigma to deal with. This is about people who are really, really unwell, who've just been left to rot. It can't go on.

Jackie Baxter  
No, it's It's still something needs to be done. Absolutely. There is plenty that has already happened, that it's great and it's going in the right direction. And as you say, there's also, there's so much more that needs to happen. You know, it's great that you know that things are happening, yeah, steering things in the right direction,

Speaker 1  
which is awesome. We're on the journey. It would just be nice to get a little bit further forward. Yes,

Jackie Baxter  
yeah. I suppose my kind of thing things take time, don't they? But, you know, but there are so many people that you know that isn't that much time.

Speaker 1  
Yeah, that's it. And the numbers are only, you know, going to rise.

Jackie Baxter  
Yes, yes, exactly. You know, with with things opening up, they already can't cope with the numbers they have. And, you know, opening things up when there are so many, especially young, unvaccinated people, it's, it's only going to get worse. So it's, yeah, it's a problem that's, that's not going to solve itself, I guess. So we should mention the online Cafe sessions,

Unknown Speaker  
yeah, sure. So following

Jackie Baxter  
on the sheet of the summit, isn't

Speaker 1  
it? Yeah. So following on from the summit, we decided to have a long COVID Cafe, which is a similar event at the summit, but a bit more relaxed, but like coffee shop environment, where people can come along and learn more about lived experience. So obviously, want people with lived experience there, parliamentarians can come along. Anyone who missed the summit, in fact, can come along, because we are aware that, you know, it being a an emergency event, something we felt had happened immediately, that that might, have, you know, made a few people feel excluded, or some people might not been able to attend. And so therefore it's a follow up, and we will absolutely capture what people say as well, so it will get taken on board.

Jackie Baxter  
Yeah, it's fantastic. So this is so it's all online, isn't it? This cafe session. Yeah.

Speaker 1  
It'll be 18th of August, and I believe it's at five o'clock and

Jackie Baxter  
and they the plan is, are they going to be Is it monthly or a couple of weekly? We're

Speaker 1  
not sure how many we'll be having yet. So something we need to figure out, because it's just about the capacity issue with volunteer and we're we're firefighting about the amount we have to do, but it would be good to have another one, but it might culturally, something like that. So yeah,

Jackie Baxter  
just Yeah, I guess you know for people to sort of keep their eyes out for that, yeah. And are there any other relationships you mentioned one with the government, the health secretary and everything. So any other relationships that have been cultivated through this?

Speaker 1  
Absolutely. I was looking at the website the other day and thinking, we really need to update the partnerships page, because we've made links with so so many different people and so many different groups. So various researchers and the research group are stellar, and they have fantastic relationships with universities. But one of the things that's really important to me is that we're building relationships with other chronic illness groups. I think that's really important. And if we, if we do go ahead with a cross party group, I think that would be really fruitful to have them at the table there. I just think that's important. I think that you know people who've had conditions like I mentioned postural Tachycardia Syndrome or pots earlier on me, CFS is another one. Lyme disease, lupus, you know, all of these illnesses, fibromyalgia, these, you know, these people have been through a lot of the same things that we have, and there's a lot of learning to be shared. So I think those relationships are really, really important, and that we can, you know, foster more of them, cultivate more of them, absolutely.

Jackie Baxter  
And I guess if you know, they've been fighting for this for years, haven't they? So, yeah,

Speaker 1  
they have, and they, you know, they deserve a seat at the table. And some of us, like I say, are being diagnosed with, you know, some of those illnesses. So it's, yeah, it's important that we're all, you know, communicating

Jackie Baxter  
yes and help each other out. Hopefully, yeah,

Unknown Speaker  
that's I've had so much support, you know, a lot. So

Jackie Baxter  
I guess the only other thing is plans, plans for the future with long COVID Scotland. I mean, you know this, this, like you said, this, there's so much more that we're currently trying to carry on with all the you know, the campaigning is there, is there anything else? Like, yeah,

Speaker 1  
I was dreading this question. I'm just firefighting with what's on my desk already. But I guess moving towards that, that place where someone can go to the doctor and have that conversation and get what they need, I think that that's it. This is the treatment, and we can get get to the clinics or find a suitable alternative to that. And with a bit of cynicism and skepticism in my voice, I will be honest, that's, you know, that's the next thing for us. How do we get something for these people who are so unwell and suffering so much that's that is the goal, absolutely. But as far in terms of, like, we don't have another summit planned or anything yet, but there will be, there will be more. You know what space long COVID Does, Scott, there will be more

Jackie Baxter  
well. Thank you so much for talking to me today and and for all the work that you've been spearheading. Thanks

Speaker 1  
for listening, and a huge thank you to everyone who has supported us, especially amazing. So,

Jackie Baxter  
yeah, just so it's long COVID. Scott, the website,

Unknown Speaker  
I hope it is, because I've said it about four times.

Jackie Baxter  
And anybody interested in campaigning, do they get in touch through the website? Yeah, they can get in touch there. Yeah, and yeah to look out for the online Cafe sessions those will be coming soon. 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 buy me a coffee.com. Forward slash long COVID pod 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 you.

Transcribed by https://otter.ai