05 - Dr Amy Small - GP, long-hauler & advocate

Episode 05 of the Long Covid Podcast is a conversation with Dr Amy Small. Amy has had Long Covid having caught Covid-19 at work and has been heavily involved in advocating for those who are not able to advocate for themselves. Her combination of medical knowledge & lived experience gives her a unique ability to help and perspective on the situation.

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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  
Welcome to this episode of the long COVID podcast. My guest today, Dr Amy small is now a familiar name in long COVID circles. I'm really looking forward to picking her brains about all things long COVID. So I'll go ahead and welcome Amy to the podcast. You music.

Jackie Baxter  
Thank you so much for coming onto the podcast. I'm really excited to have you here. Maybe we'll just start with an introduction to who you are, if you're comfortable saying a little about who you are and what you did before COVID struck.

Amy Small  
Okay, thank you for having me. Yeah, I'm Amy small I'm a GP. Prior to COVID, I had been a GP partner in East Lothian for 10 years. I am a mum to two boys, and also married to a Frenchman and generally a very busy person. So yeah, that was me prior to COVID.

Jackie Baxter  
So many people just seem to have been active doing stuff without any thought for how it would be to not be able to do all of that stuff. It's all the things we take for granted, isn't it, so probably don't want to dwell on this bit too much, but can you maybe just talk us through your experiences with COVID. Like me, you were a first Weaver, weren't you?

Speaker 1  
Yeah, I got sick in april 2020. Being a doctor, I was working on the front line. I did catch COVID At work, and the first day, I always just had a bit of a headache. Wasn't really sure what was going on. Little bit in denial. I had a little bit of fever, but I didn't sort of tick the three boxes of having lost my sense of smell or a tempo for 37 and I didn't have a cough. So I thought, Well, maybe it's not COVID. The next day, my husband got ill, and I then got confirmation from work that a colleague had tested positive, so I was pretty sure that that was what was going on. And then in the coming days, my sons both got it, and we then, after six days, started coughing. And I think initially I'd sort of thought, Okay, fine, I've got COVID. I don't appear to be dying right now, so maybe I'll just get better, like the who said I would, after 10 days, I'd be just fine. I'd then have some antibodies, and I go back to work, and I could be a bit more safe. And, you know, Good, fine. But as things went on, my temperature just kept going up rather than going down, and been seen at the COVID assessment center after a couple of weeks because my temperature was just getting higher and higher, and they said, No, it's It's just COVID, and gave me some antibiotics. Sort of said, well, try these and see what happens. But nothing did. About three weeks into it, I couldn't breathe. I was feeling so breathless. I spent the whole day just with a really high respiratory rate, and I was then panicking I had blood clots in my lungs, because I've been reading about that and thought, God, this is this what was happening to me. So I ended up in the west and where they checked me over, did all the tests and everything, and said, No, this is COVID, and you just go home and rest and sleep it off four weeks. Then by this stage, my husband was a little bit better in the sense that he could leave the house now that he wasn't explaining displaying any symptoms of COVID that might infect others, so he was sort of able to take the kids out on sort of short walks. But I hadn't left the house for four weeks, except for medical appointments and and kind of was going a bit crazy. My mental health was deteriorating because I hadn't left the house and thought, gosh, you know, I've still got fever. Am I going to be fever. Am I going to be Typhoid Mary if I go out and go into the world? So I emailed an infectious diseases colleague and said, you know, am I still contagious? Or can I go out? He said, No, you're not contagious, but we need to see you know, it's not normal that someone has fever for four weeks. So I eventually ended up seeing them, and they said, Yeah, we're seeing quite a few of people like you, but not really sure what's going on. We think this is just COVID and and did lots of random tests, which all came back negative, and said, Look, we'll give you a call in three months and see how you're getting on. So off, I went on my way, and I was just every day exhausted like a fatigue that I'd never experienced. I. It was like there was just no battery left in my mobile phone, but in my body, if you like, I had never experienced anything like it, but trying to soldier on. You know, we had two young children. They were three and five at the time. We didn't have a choice. We had to get up every morning at the crack of dawn and feed them. You know, we took it in turns to put Disney plus on for them and the other one would rest. Wasn't the best parenting I've ever done, but it was a pandemic, and no one could help and and you just had to get on with it, didn't you? And bit by bit, you know, I still had fever every day, but I sort of felt a little bit better. I wasn't quite as breakfast as I had been, but as long as I took it very gently, I'd be okay. And so I contacted my colleagues and said I'd really like to come back and do a little bit of work. You know, maybe if I go back to work, it'll be fine. I mean, this is all just in my head, and I can just snap myself out of this and I'll be okay. And so I went back to work and did a half a day of paperwork, and the next day I did a half a day of clinical work where I just did a normal surgery. I phoned my patient and saw a couple and then that left me bed bound for 10 days. I couldn't eat. I couldn't speak for a couple of days. I it was just exhausting to even chew cereal, because my jaw was so fatigued that that hurt. I really struggled to drink or anything, because just lifting my arm up was painful and exhausting. And I realized at that point that this was a much bigger beast and something that I really, really had no control over. And it was at that point I contacted a friend with me and said, Oh, what have you found that's helped you, because I was actually terrified this was going to turn into me, and I wanted to then try and do whatever I could to make this better. And that's when I learned about pacing. That's when I really learned about pacing. People on Twitter shared resources, and I bought a book, which was amazing and really helped me to understand what pacing meant. I went and saw a nutritionist to get a better diet and supplement. I saw an osteopath to help do some lymphatic drainage. I don't know how much it helps, but at least I felt like I was doing something. And bit by bit over the coming months, I started to get better. But the turning point for me was really at the point when I found that I still was very breathless, and I couldn't keep up with my four year old. I couldn't walk as fast as him, and if I did, my brain just wouldn't work properly. My legs wouldn't work properly. I just couldn't think straight. My speech would slur. If I overdid it, my temperature would rocket, and I just didn't understand what this was. And at the time, I was hearing a little bit about pot syndrome on the internet and people saying that this was happening. People with long COVID Were getting diagnosed with it. It was actually at the final meeting with my partners when I found out if I was going to lose my job or not, that I took some out of date beta blocker that I had, I thought I would just take that I had it from when my dad was dying, and I thought I'll just take that and see if it helps me get through the meeting, because I was just really anxious of what was going to come. And I actually noticed that day that I felt a lot better in a lot of ways. You know, I could walk up the stairs without being breathless. I didn't feel quite so achy. My brain seemed a bit clearer. And it was at that point that I contacted my GP and said, Oh, I wonder if I've got this pot syndrome that everyone's talking about. I wonder if this is why I've got fever. I wonder this is why my heart's racing all the time. It was at that point I started on a beta blocker, and for me, that was such a turn. Such a turning point in my journey. And I think that's what really opened my eyes to the fact that we, as long COVID sufferers, need expert care, and need to have doctors that understand what's going on with us. We need doctors who've heard about it, who understand all the peripheral complications of it, and if we can get people access to that care early on, then people might not lose their jobs, they might not become as disabled as they are being. And I think that's what really started me on the sort of campaign trail to raise recognition for the condition and for the appropriate services that we need and deserve.

Jackie Baxter  
Yeah, it's unfortunately a story, isn't it? It's just it's so tough. Did you find that your medical knowledge helped or made things worse, or was it sort of useful to understand a little bit more about what was happening? It's

Speaker 1  
interesting because in the early days, and you'll remember this, you know, we were told to stay at home, stay at home, stay at home. And being a doctor, I already had an oxygen probe. I had my thermometer at home. I had the knowledge to you know, I could listen to my own lungs, I could listen to my husband's lungs. I could check my children and make sure they weren't too breathless. So there were some advantages to that, but there are other disadvantages in knowing too much and knowing the possible complications. And perhaps stayed at home. Maybe we shouldn't have stayed at home, and now we know the criteria has changed, and when I look back at us, neither of us should have been at home with the oxygen saturations that we had. I remember saying to my husband, if I start speaking gobbledygook or I'm confused, that's the point at which I need to be in hospital. But that's really showing massively low oxygen saturations. And actually, before COVID, if I'd seen anyone my age with an oxygen saturation of less than 95 I probably would have sent them into hospital. But that was very different then, and I think in other ways, yes, I would probably get myself into a tears about blood clots and all these things, because I knew all the worst possible scenarios and maybe over thought some of those things. But then, on the plus side, certainly in terms of being able to access the medical. Knowledge, being able to use my networks to gain information. You know, I only saw infectious diseases because I emailed them. You know that there's all these things that occurred because I was able to access that stuff. So I think, yes, I had an advantage in terms of being able to recognize what was going on. I had access to what I needed to get the appropriate treatment that I needed to and I think that's partly what I've been trying to do is helping patients to advocate for themselves, to get the right treatment, because not all doctors are aware of this and and the complications of COVID. So, yeah, advantages and disadvantages.

Jackie Baxter  
Yeah. I think, you know, back at the start, all the services were so overwhelmed, and the bar for hospital admissions was as as you know, so, so high certainly, personally, I find having zero medical knowledge. I'm a musician, so I don't know anything, and it was the sort of, do I need to worry about this or not? And it was so hard to know. And then you Google things, and sometimes that is the worst thing you can do, because then everything Google tells you is like the worst case scenario. So I'm sure it wasn't the only one doing that. It's a frightening experience, whether you you know what's happening or not, doesn't stop it from happening, just because I understand it. And yeah, having your family ill at the same time, I had my partner looking after me, and he was fine, and it was tough enough for us, so I can't imagine how much more difficult it must have been with other people to look after as well. So obviously, long COVID has had a huge impact on your life. A worry for so many people is employment. If you're not well enough to work, some jobs can be done from home. Some things can be done flexibly, but you ended up actually losing your job, which, given that you're a trained medical professional in the middle of a pandemic, must be devastating and incredibly frustrating at the same time.

Speaker 1  
I think in many ways, I just felt so betrayed. You know, this was an infection I caught at work during the pandemic, and we know that health and social care workers have a disproportionately high rate of long COVID and COVID and death from COVID compared to those who don't work in the health and social care sector. It was doubly difficult because my husband also had it. So at the point at which I lost my job at six months, his salary was about to halve, and our roof was leaking, and we were in the middle of a remortgage. And you sort of sit there and think, this isn't, this wasn't the plan going from me being the main breadwinner to no income and to my husband potentially dropping to half. And at that point, I contacted a medical charity, which I never in my life would have thought I would have had to do, but I didn't know how we were going to get out of this hole. I didn't know when I was going to be well enough to work. I didn't know when my husband was going to be able to well enough to work. We weren't quite clear what was going to happen with his salary. And I was fortunate enough that there is a the Cameron funded a charity for GPS, that I contacted and submitted lots of information, and they sat us down, and I had access to a financial advisor who could talk us through everything. And luckily, I was then able to start locoming. And luckily, my husband's salary didn't drop, because his university was very understanding. But there are many others who are nowhere near as fortunate as I am, and I will always be able to be a GP God. We need GPS, like anything, you know. So no matter what work I can do at the moment, I'm lucky enough to be well enough to do that. I will always be employable. But, you know, I think to people who are in their, you know, mid 40s laborers, that's all they've done ever in their in their lives, for 25 years, their work is very physical. They can't now do it, but it's, it's a waxing and waning condition. So we know that benefit system is not fit for purpose. We know that for many people, it doesn't recognize waxing and waning issues. So Joe Bloggs down the street, who's been a labor for 25 years, who gets long COVID and can't work anymore, really runs huge risk of not having anything and also not qualifying for the benefits that they actually need. And I think these are the people that I really worry for, because they're not going to be recognized, and we simply don't have the statistics and the backup to help support people like them. Absolutely,

Jackie Baxter  
yeah, the unpredictability of it is just so hard, isn't it? You planning ahead? You just can't really plan, make plans and say, Yeah, I'm going to plan this, but you know, there's a sort of 50% chance that I won't be able to do it when it's friends and family. It's frustrating, but you're not going to lose your job over it. But with work, as you say, it's just so, so difficult, and with no support there as well, you've been quite vocal in advocating for better care. I've been hearing your name right from the start of when long COVID became a thing. And how have you got involved? Is that a lot of it will be through your contacts, I guess. Yeah.

Speaker 1  
I mean, it's just through social media and just generally being mouthy. It's about stuff that annoys me, and I've never I've worked for a long time with the British Medical Association. I'm an elected representative to the Scottish Council of the BMA. I'm currently going to be sitting on the Scottish GP committee and the UK GP committee, so I'm I'm lucky that I have networks. I have people that I can link in with and back. I think it must have been last May, June, there was a Facebook group that was set up for doctors with long COVID and others who had an interest in it. And it was through that that I really made connections with others who were going to the same. Thing, and then got to know people who were running long COVID clinics or involved in setting them up in England. And that's where I really started to do quite a bit of just work off my own back, to find out what was working, what wasn't working, trying to see what was available that we just didn't have access to here in Scotland, trying to lobby for Scottish government to release funds for us to then have better care here in Scotland, because we certainly seem to be behind the mark on that one. And I think just through my own experiences and learning about all these illnesses that I wasn't really aware of before, and realizing that actually so many bits of long COVID are treatable. And I think that's where I got very frustrated with our government, who kept saying that while we've plowed the money into research, because we need the research to show what treatments are available, intimating that there wasn't anything we could do for people with long COVID, and that's absolutely wrong. And I think, you know, my condition is basically cured through medication, and I am able to function, I'm able to work, but that was all just haphazard, that that came about, that I knew about it, and I've had an excellent GP who who's supported me throughout. And I think many people have been saying they've had, actually very good support from the GPs who simply just don't know enough about it, and no one's got the time to go away and read up about it. I had the time because I was off sick, you know, and I I had the networks to share that information. So there are so many different facets to long COVID and so many different illnesses within it. And you know, we have those that seem to have more chronic fatigue. Me type pictures. We have those with organ damage, heart disease, kidney damage, brain damage because of it. And we need to really combine what we already know from post viral illnesses with the new research that's coming out and what people are seeing in long COVID clinics. The only way we can do that is by communicating with each other, and that's where I think, actually, social media has been instrumental in long COVID. I mean, long COVID in its name came from social media. It came from the people who are suffering from it. And boy, what a what a group we've become. And, you know, greatest advocates. So I think people deserve the best care. People deserve the most up to date information. And I think there are enough of us out there that are interested in it, that can share that information. We just need the funding and support to allow to deliver that care. And in my dealings with NHS Lothian, who've been fantastic, they want to set up staff, but there just isn't the money, or there wasn't until yesterday's announcement, but hopefully, now that we've got an injection of money coming into Scotland, we can provide expert services for patients. I'm not going to use the word long COVID clinic, because it's not popular, but you know, expert services where patients get to see a doctor who understands what long COVID is. Who knows who has access to the investigations they need, and then has access to the multidisciplinary teams that can help that patient get better. And when we've seen from long COVID clinics in England, if you purely put patients into rehab with no investigations, they don't get better. And equally, if you put people purely into investigations but with no rehab, they don't get better, and we need both. Until now, we've not had that in Scotland, and that's desperately what we need. And I'm hoping that we can shape that

Jackie Baxter  
absolutely. Yeah, and the GPS have been a total lottery for a lot of people. And your ill people trying to advocate for themselves. Some people are too unwell to do that. Those, those who are able to do it. That's great for them. But like you say, somebody needs to take charge of centrally managed almost.

Speaker 1  
We have got, you know, we have got the chest Heart and Stroke Scotland advice line for patients with long COVID, who can provide advice on breathlessness, pacing, fatigue management and emotional support. So, you know, we do have that, those services out there, and I think they also can help patients to advocate for themselves. For themselves, because, as you say, when you're ill, you can't do that. And I think that's the problem that a lot of us got sick in the first wave when no one knew about this, and we feel very much abandoned, and we were left to get on with it by ourselves. And I think sadly for some of those people, the relationship between them and their healthcare providers is broken down. And I think this is where we need to really help build that up again and help people to speak out for themselves by providing the irrelevant information to our healthcare providers so that they understand a bit more what's going on. But it's not

Jackie Baxter  
easy. Yes, it's a tough one. So you mentioned chest heart stroke, Scotland, you're working for them now, aren't you? Yeah, initially,

Speaker 1  
I was doing some consulting work for them on long COVID, and then now I've now become their clinical advisor for all their conditions. They've

Jackie Baxter  
been given a lot of the funding for long COVID In Scotland, haven't they? What does it what does your job involve, and the lived experience to influence how they set things up? Yeah.

Speaker 1  
I mean, it's sort of unique position of being both a clinician and someone with the lived experience of long COVID. So I understand how the NHS works, I understand all the difficulties that we have. And I think through my previous work with the BMA and other things, I have networks that I can communicate with people. So what I do for chest stroke Scotland is help them in the material that they produce for doctors. And potentially, we are working very closely with patients who have long COVID. So we have support groups within chest, Heart Stroke Scotland. So we're working closely together to produce material for people with long COVID, so advice, leaflets on breathlessness and pacing and that kind of thing. We're looking at setting up education networks, perhaps tying in healthcare providers across Scotland, maybe even across the UK, to help share what we've learned through our work on the advice line and learn from others through their work in non COVID clinic, to make sure that we can help then influence what happens across health boards, because we also work closely with health boards. Chest health straight Scotland have a hospital to home service and a couple of the health boards where they would take people from ICU and look after them as they come home, and a lot of those people will have had COVID, and then obviously go on to develop long COVID. So again, it's just making sure that we learn from all of that and provide the best, the best care that we can for people with with long COVID. Yeah,

Jackie Baxter  
we'll be right back. I'm interrupting myself for a second to tell you about long COVID breathing. The Fabulous Vickie 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 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 covidbreathing@gmail.com to start your breathing journey with us.

Jackie Baxter  
Maybe that's brilliant. So you mentioned the people that had been in the ICU and had then gone on to develop long COVID. There seems to be quite a big divide between the hospitalized patients and the long COVID patients who didn't go into hospital, whereas, I mean, surely this shouldn't be so much

Speaker 1  
of a divide. By divide, you mean divide amongst the patient groups, or divide in the care that they've received.

Jackie Baxter  
I feel like bits of funding, they've been targeted towards ICU or former ICU patients, when a lot of again, like you said, the people that stayed at home like you and I are sort of still feeling sort of almost abandoned, and sort of, what about us? We weren't in hospital because we weren't quite that ill, but we were still very unwell. I think that's

Speaker 1  
the thing that's been very frustrating. The Scottish Government is trying to acknowledge the fact that if you weren't in hospital didn't mean you weren't suffering and didn't mean you didn't have a debilitating illness. They managed to secure funding for psychological support for anyone who had been admitted to hospital. Didn't have to be ICU, but they still had to be admitted. Whereas we know that many people with long COVID are suffering from post traumatic stress disorder, from having been suffering alone at home, I think people who were in ICU are going to have extreme needs to build themselves back up again. Their recovery seems to be a little bit more linear. From what we're seeing a sort of typical post ICU patient, for whatever reason, will have a huge amount of need in terms of physio and OT and nursing needs, but their recovery tends to be more linear. Whereas what we're seeing in people who have long COVID that were in the community, who perhaps didn't have such a severe illness initially, tend to have a more relapsing remitting illness, and I think as a patient group, we all need to come together and just fight for good, long COVID care. But I think the government needs to recognize that just because we weren't in hospital and we weren't in intensive care, that we weren't sick, and we don't need those needs now. So I think it's important for us as patients to stick together, but I think it's important for the government to recognize that we absolutely need appropriate funding for those of us who weren't in intensive care, because there has been so much support put in for those who were, I

Jackie Baxter  
think you touched on it earlier about concerns about current guidance and lack of treatment. Is there a worry that people are likely to get worse if they don't get any treatment? Well, I guess that will vary very much, people to people.

Speaker 1  
I think yes, it will vary person to person, and it will vary according to what kind of long COVID They've got. I think the one thing I've been trying to get the message across from the beginning is that people post COVID need to learn how to pace, and that can't start early enough, because if we know how to pace and we know not to push through, we won't develop the post exertional malaise. We're less likely to develop chronic fatigue syndrome or me. Because actually, those of us who keep pushing, keep pushing, keep pushing, and every day, we're pushing our bodies deeper and deeper into an abyss that's harder to drag itself out of. You know, we can start doing that from day one, and there's no harm in learning what pacing is. I would love it if there was some way of contacting every person after their COVID honors after four weeks, and saying, Do you feel better? Fine, great. If not. Here, learn about pacing. But. Because the earlier we get that in there, the better. I think there are some who are going to have organ damage that going to find out about that a lot later on. You know, there are those who are concerned about developing myocarditis, which is inflammation of the heart, or pericarditis, which is inflammation of the SAC surrounding the heart, and that aren't aware of it, because there just simply aren't the mainstream tests. At the moment to do those in the NHS, there isn't the capacity. The question is, is, How dangerous are those things? You know, maybe a lot of us do get those illnesses post virally anyway, and we have a bit of chest pain, but we kind of get on with it. So that's where the research will tell us what we need to know. I mean, I think it was a long COVID clinic at UCL in London who did 300 echocardiogram scans of people's hearts, ultrasound scans of the heart, and they all were virtually normal, but they went on to MRI, 70 of them, of which 50% had some degree of cardiac damage. But the question is, how much is that cardiac damage actually a problem? You know? Will it just resolve? Would they have had it not known about it. Do we all get that after the flu? You know? So that's again, where they were saying the money needs to be, the research needs to be in those areas to know, what are the tests that we need to do specifically for specific patients? Because you hear

Jackie Baxter  
heart and you just go, Ah, so certainly, exactly, doesn't know. Your first reaction is, that sounds awful, whereas, like you say we just don't, don't know how bad it could be and and it will vary so much. Yeah, it's kind of scary to think. You know, people back 18 months ago, could have had any amount of organ damage and never got scanned. And for some people, that may not matter, you know, it just went away and and hasn't affected them. But then, you know, some people could have started being more active and actually made it worse. I guess that's why we need more scans, more tests. We need.

Speaker 1  
Well, what we need is the research to know which scans and tests need to be done on which people. That's the big key. The scan

Jackie Baxter  
is just insane.

Speaker 1  
But it's not so much that. It's that people talk about wanting full body MRI scans, but then you'll pick up all sorts of things on there that you didn't want to know about. To know about, that you could never do anything about. Years ago, I had an episode of demyelination, which essentially, if I'd had another one, that would have turned into into Ms. And I remember speaking to the doctor at the time because basically half my top half of my body was numb and felt really weird, and I couldn't touch hot things or whatever they felt wrong. And I remember having a long debate with a doctor at the time saying, we can MRI you if you want. And I said, Of course, I want an MRI, you know, I want to know what's going on. Well, you know, we might find a really little incidental blood vessel that's a little bit bigger than it should be that we couldn't do anything about. Would you want to know about that if you didn't, or we could a little tumor in there that would be completely benign that would never turn into anything, but you would never know that unless you then started going into digging into it. How much do you want to know? Because you can't predict what you're going to find, and therefore doing routine scans on people, you know, we've got to think very carefully about the damage that can be done from that as well. So I think the time, yes, I did go off and I had my MRI, and yes, it showed I had some degree of demyelination, but I was lucky that they didn't find anything else that then potentially would have been playing on my mind for years to come, wondering, would that become something? Would it not become something? Would I need lots of investigations on this little thing that I didn't know that I had, that I didn't you know? You get my point that scanning everyone is not appropriate. It's not an appropriate use of resources, and it's not good for patients, but we need to learn who needs those scans and who doesn't.

Jackie Baxter  
So as as a GP you you must know what guidance do GPS get, and watch what more could they have that would be helpful if they get somebody with long COVID, because GPs are the first person the patient would go to. So what happens? What should happen when dual blog shows up as GP saying, I think have long COVID?

Speaker 1  
We currently have the nice and signed guidelines for patients with long COVID, which came out in the spring, and it kind of provides recognition of the illness, but it is scant on what we can actually do for our patients that said it's what we call a live guideline. So it's going to be continuously modified. There is going to be adjustments and addendums and all the rest of it, as we get more and more information, the very nature of nice guidance is it has to be evidence based, and that's very difficult in this because it's going to be waiting for quite a while before we get the evidence base that we need. So yes, there is that guideline for GPs to go to and say, Oh yeah, I can read this and say, Yeah, very much. Sounds like long COVID But it isn't hugely helpful in terms of actually practical management of patients day to day. So there are various articles that have come out in medical journals from people who run long COVID clinics. You know, there's a top 10 things you can do for patients with long COVID in the various medical rags, but it's really only going to be those GPS that have patients with long COVID that are going to go away and have to find out about it for themselves. I mean, the Royal College of GPs have provided a produced, I should say, a education module on long COVID, which is. Very good, but that requires a GP to go away and spend an hour of their time in their evening after a very long, busy week when they're exhausted, to go away and do that. And I think that's the problem is that we're currently facing a workforce that's completely exhausted, completely understaffed and under resourced. And this is, sadly, I think, probably where some people are coming up short, because they're just there. Just isn't the time to go away and read and learn about every condition. You know, the more, the more people we see with long COVID, the more than I guess, and people are going out there to find more about it. But it is difficult for those who who maybe only have one patient with long COVID And don't know anything about it, you know, for those that have three or four, they might think, Oh, I'm still in a pattern here, you know. So, yes, it is very difficult. And I'm hoping, you know, through some of the work I do with chest, heart stroke, and through some of the networks that that I'm in, that we can just keep sharing knowledge. I'm giving talk to left Ryan sensitive medics, anyone who's willing to listen. I have a 20 minute talk that I trot out just to try and get medics on the page, learning more about the pots and these sorts of things. And it's generally been really well received. And people have, you know, acknowledged that they haven't heard about those things. So people want to learn. They just, they just haven't got the

Jackie Baxter  
time Absolutely. And like you say, we are still in the middle of the pandemic. As much as people like to say that it's all over, it really isn't, is it? And like you said earlier, so many medical professionals are still off ill, because if they get so hard with it. So yeah, do you have any advice to people who are struggling to get help? You know, I think a lot of people are worried about hounding GPS when they think, well, there's nothing they can do without the more services. And worried about making a nuisance of themselves when they're not going to get any answers anyway.

Speaker 1  
I think one of the things to do is to write down everything that's happening, you know, write down all the symptoms you have, and then try and break it down into the things that are affecting you the most. There's, if you put yourself in a GPS position, you've got 10 minutes to deal with someone who's come in and every aspect of their life is just a mess at the moment, from their mental health to their physical health to the financial situation, etc, and it can be quite overwhelming, because it just all looks terrible, and you've got 10 minutes, and how on earth you're going to deal with that? So I think sometimes trying to hone down a little bit, and it might take several consultations, and I think sometimes it's about empowering patients to say, Okay, can we discuss this thing today? And then I'd like to make another appointment to discuss this thing another day, and then trying to break it down into sections that feel more manageable. So if, let's say your breathlessness is the thing that is keeping you back the most, that you can't function because you're so breathless and that's making you worried and all the rest of it. But yes, you've also got aches and pains, your guts not working so well. You've got some weird tingling sensations. Try, try to pick the thing that's bothering you the most, but keep a list of all the other bits to then bring and say, well, actually, these are also things that I'm concerned about, that I'd like to also tackle at some point, but acknowledge that it can't all be done in one session. And I think, as I said, if there are things like breathlessness and fatigue. Those are brilliant things to go to chest, Heart Stroke Scotland with, and on the advice line, I've had brilliant feedback from patients. I've referred to them, and because they have time that you know, you can spend 45 minutes talking to someone who really understands what you're going through, who can advise you, and they will be very honest about what they can't manage, but they might help you be able to advocate, you know, for yourself, to then bring that forward to the GP. So, yeah, I think it's about breaking it down, keeping lists, and just keep going back. We don't know that you're stuck struggling, unless you keep telling us you're struggling. You know, if you disappear into the ether, we think you're better.

Jackie Baxter  
I guess the nature of long COVID That you know, we're learning new things every day as well. A lot of advice will work. A lot of it may not work. And certainly I found that the support groups have been very helpful for that as well. Someone says, Oh, well, I spoke to my respiratory consultant the other day, and they suggested this, and 300 people will try it, and it will work for some of them. And you sort of think, well, surely that's a win. Yeah,

Speaker 1  
the peer support groups are so important in whatever guys they come, whether it's through Facebook or Twitter or organizations like chestro. You know, any peer support that you can get in whatever format is vital, I think, to get through this

Jackie Baxter  
absolutely. I'll put the advice line number in the show notes. If anybody's wanting to use that Pete, you obviously become a bit of an expert on long COVID. I guess you've been in a good position to do it with both your medical knowledge and your lived experience. Have you discovered anything else that might be helpful to people? Oh,

Speaker 1  
that's a tricky one. I don't really view myself as an expert. It's kind of funny. Is that the imposter syndrome, but I think, I think there's new stuff coming about this all the time, and I think it's going to be a few years before we really understand how this really affects our bodies in so many different ways, and particularly the neurological aspects of it. And I think these are things that are going to slowly come out in papers, slowly, that we're going to discover. As I said, you know, I'd never heard of pots before, really. Ly, before I got it, I've learned all about mast cell activation syndrome, which is a lot of people are talking about that in the long COVID world, something I don't really understand. I think a lot of doctors don't really understand it. And as a doctor who's an expert in it, beautifully explained that he had over 250 patients with mast cell activation syndrome, and only two of them had the same symptoms. So again, it's a whole minefield in itself, but it's opened my eyes to these other things, you know, things I'd never thought about before and I'd never heard of before, you know. And even if I sometimes say to patients, I think I might, you might have this, I don't we know what we can do about it, but go away and read about it and maybe change your diet a bit, or we can try some drugs here and there, and a lot of it's just trial and error. And I think as long as we're not using medications that potentially damaging, as long as we are holding our hands up and saying, I don't understand this fully, but you know, this could be a thing, I think, you know, it's a journey that we're on together. So for me, yeah, it's really about being open to everything, acknowledging every symptom that comes through the door, and not dismissing any of them, and I think if we can hold our hands through it, we will come out the other side a much wiser, a much wiser bunch. But it's going to take a long time for us to really get down to the nitty gritty and find out what's actually happening inside our bodies, and definitive treatments that might help. I think,

Jackie Baxter  
like you say, sometimes putting a name on something can make a huge difference mentally. Can't it? You know, you sort of think, well, at least, I might not understand that much about it, but at least it's a starting point, isn't it? Yeah, yeah, somewhere to go from. I think we've talked quite a lot about it already. But what else would you like to see introduced help with care? Is there anything specific or just general.

Speaker 1  
I would like to see that everyone has access to multidisciplinary care. So I would like to see that GPs have somewhere to refer their patients to that that would then also be an educational hub. You know, whatever we learn from patients going to that can be fed back to GPS, that GPS can then understand and learn more we write to each other, and that's often how we learn. I would very much like to see the benefit system acknowledge this illness, and I would very much like to see our government really put this on the forefront as part of our COVID recovery. You know, we're talking about COVID recovery, and how is Scotland going to recover from this pandemic? And this has to be part of it. When you look at the sheer numbers of people living with long COVID and how that affects our workforce, how that affects us who have caring roles, etc. It's not just about the medical aspect. It's got to be about the bigger picture and the whole picture, and making sure that people can contribute to society in a meaningful way and feel like they're doing that in a meaningful way. Because I think there's no one wants to be at home sick, not working. No one wants to be in that role. But sadly, that's very often what happens. And we need to help enable people to get better, and we need to help support them through that. So yeah, I guess it's the whole picture, not just the medical one, and making sure that we are nurtured and looked after. It's

Jackie Baxter  
such a big scale on so many different levels, isn't it for everything? Well, thank you so much. It's been an absolute pleasure to speak to you, and I hope some of that is useful to people listening as well. So thank you so much. Thank you. 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