Catherine

Age at interview: 53

Brief Outline:

Catherine’s youngest son caught Covid at school in December 2020 just before his 16^th birthday. Initially he wasn’t particularly ill with Covid but in the following months was admitted three times to hospital and was seen by a number of different consultants, both privately and in the NHS, unfortunately they felt none of those appointments had been very helpful and some of them had been the exact opposite. Even though, as a GP, Catherine is used to navigating the health system, it was 9 months before her son was seen at a Long Covid clinic, where they did feel listened to but didn’t feel there was any treatment available that would help. They are considering going to Germany for private apheresis treatment. Catherine was interviewed in December 2021.

Catherine is a GP and a single parent, with three children aged 17, 21 and 25. Ethnicity: White British.

More about me...

Catherine’s youngest son caught Covid at school in December 2020 just before his 16^th birthday. Before Covid he was very healthy, fit and active, loved to mountain bike and had lots of friends and was doing well at school.

Initially he wasn’t particularly ill with Covid but had a loss of taste and a cough. A few weeks after he complained of dizziness which got worse to the point of not being able to stand up or walk without falling. In January he suddenly lost power and sensation in one arm, and was admitted to hospital. Following some brain scans he was diagnosed as having a migraine, his arm took a month to recover, and the dizziness improved. In February he was still short of breath but attending school though he had not returned to riding his bike. He then developed a really high fever, headache and rashes and was admitted to hospital again overnight. He still continues to have a fever of 38 most days 10 months on.

After his admission to hospital Catherine’s son continued to feel unwell and became very lightheaded when standing causing him to faint and by the end of March 2021 he wasn’t able to go to school and was admitted again to hospital. Catherine is a GP and had noticed her son’s heartrate during this period was doubling when standing up and she suspected PoTS (Postural Tachycardia Syndrome- an abnormal increase in heart rate that occurs after sitting up or standing), but this wasn’t acted on by her son’s health professionals until he was admitted to hospital at the end of March 2021 and he was diagnosed and started on some medication. She said, “I was shocked and appalled at the treatment we received from the NHS at one point. And I just could not understand why my colleagues were not able to hear what I was saying. I felt like I was speaking in another language. And why they didn't seem, I just felt like we’d been abandoned essentially.”

Catherine, a single parent, was juggling working as a GP, managing hospital appointments and looking after her son, it became a very stressful time for her.

As her son’s symptoms “just got worse and worse”. Exertion of any kind physical, social (talking) or involving too much noise could cause her son to crash making his symptoms worse for days and weeks afterwards. They saw private specialists including one who knew more about POTS and gave them a treatment plan, but local doctors were reluctant to prescribe the drugs in the plan as they had no knowledge of PoTS. During this time her son was not attending school and she was worried about her son managing or fainting on his own at home so tried to work half days where she could. His older brother returned home from university and looked after his brother over the summer holidays allowing her to continue to work full-time. Catherine was hoping that her son would improve enough to return to school at the end of the summer, but brain fog, concentration and memory problems along with his physical symptoms made returning, even online, to school impossible.

At this time Catherine felt very stressed and worried about her son and felt that her patient’s care was being compromised so took some sick leave, but she has since returned to work but on reduced hours as a temporary solution. The long-term impact of caring on her work and finances is of great concern to Catherine. A year on Catherine says it’s still “very up and down, it fluctuates. So, I think you know even day-to-day and if he’s having a good day, haircut and he’s had a shower, that was a lot for him in one day at the moment.” Catherine and her son find the uncertainty of how to deal with what’s happening difficult “We don’t know how long it’s going to last and what the likelihood is of recovery whether it be a full recovery or not. We just don’t know the answers to any of those questions.”

Although they have a supportive GP and have now been seen at a Long Covid clinic, where a least they felt listened to, they didn’t feel there was any treatment available that would help. At the time of the interview, they were considering going to Germany for private apheresis treatment (where the blood is passed over a heparin filter to filter out unwanted lipids and proteins, a process it says reduces the stickiness of the blood and improves microcirculation) but the uncertainty and cost of the treatment and the risk of her son catching a virus while travelling was a worry for Catherine.

Of the helpful advice given Catherine feels that pacing and rest are really important and a very slow increase in activity when you’re able. She feels professionals need to stop psychologising Long Covid, listen to patients and their carers more and stop dismissing the physical symptoms of the condition.

Catherine feels that if young people’s symptoms don’t fit into “an easy box with a label” doctors have a tendency to put it down to anxiety or chronic fatigue syndrome.

So, I think you know, at the beginning of the pandemic it was clearly the older people and people with diabetes and high blood pressure and so on that, that were more vulnerable to severe disease. And it’s, it’s still true that, that children rarely become very unwell with acute Covid. Some do, but not nearly as many as adults and particularly, as you get older and have other illnesses and diseases going on and children tend not to get so unwell.

But children are getting Long Covid and of course, children are also getting PIMS you know the, the multi system inflammatory disease which happens a few weeks after Covid which can be really severe in children, a number of children have ended up in ITU and a few that have even died. So, it’s certainly not something which is benign in children. And if we hadn’t had so many adults dying and being so unwell with it I’m sure the focus would be entirely different. But I think it’s not at all true to say that children are not affected by it and it’s and it’s far more than just being the disruption of education and social life and family life. It’s the actual illness is causing, in disease and problems which are really bad, but not the same rate as adults.

So, I think [our son] is quite unusual in that has severely affected his being. But he’s not alone. There are other kids his age and younger who’ve also been quite unwell. Quite a few that have been unwell enough not to be able to go to school. So yeah, I think it’s something which has been played down quite a lot and, and, and not always taken into account in the decisions that have been made about how it’s all been handled. That’s my opinion [laughs].

Yeah, well you know for instance vaccinating children, you know, the argument is that children don’t get very unwell with Covid. Long Covid was never mentioned when they first said they were going to make a decision about that. And if, and if they hadn’t had so much information about the rest of the effects of Covid then maybe we’d have been a bit more people would’ve been a bit more interested in what was happening in Long Covid. I don't know. I think there’s also a lot of people who kind of psychologised it. So, instead of looking, looking at a patient and wondering why suddenly this 16-year-old’s gone from sprinting up mountains on a bike to not being able to get up the stairs, they are being told that he needs to see a psychologist.

He’s gone from being super fit to not being able to get up the stairs and has all sorts of worries sometimes and chest pain and lack of [inaudible] and palpitations [inaudible]. I think the questions have been answered about why that’s happening. Interesting journey for me [laughs]. Yeah, I think because it’s, the symptoms don’t fit into an easy box with a label. And doctors tend to put it into whatever box they know that seems to fit which might be anxiety or chronic fatigue syndrome or something like that.

Catherine’s son’s symptoms ‘fluctuated’, and too much exertion made his symptoms worse. He was learning to pace himself and spend more time resting.

And actually, we found that exercise made it worse. So, if he’d been particularly was something very vigorous it seemed to trigger everything and make the symptoms worse for days and weeks afterwards so lots of post exertion malaise going on.

Lots of boom and bursts and crashes after he’d done too much. And that applied to not just physical exercise but if he did a lot just talking to people or a lot of social interaction, too much noise. And if any kind of exertion tended to create a crash which is quite common in Long Covid. So, we were learning, that actually he needed to pace himself and that rest was his friend.

Yeah, yeah. So, it’s very up and down, it fluctuates. So, I think you know even day-to-day and if he’s having a good day, haircut and he’s had a shower, that was a lot for him in one day at the moment. So, yeah. So, the fluctuations, I think that’s quite a common experience in Long Covid as well and people can go months with feeling pretty well and then suddenly the symptoms will come back again.

Catherine’s eldest son helped care for her younger son so she could work during the summer.

So, we got to May time and he, he started to improve a little bit and I think that was just a time probably was taking a few different medications by then, but not entirely sure that they were, were helping a lot. So, through the summer he was a little bit better and the summer was, was easier, because his older brother was at home. And his older brother had finished his university degree. And he was, and had was going onto Cambridge to do a Masters. But he had a four month break and he would have gone and done an internship or got a job except he knew what was going on and so he decided not to do that. But he was at home during the summer which was really helpful for me so I was able to just go to work without worrying about [son]. And I also picked up lots of extra shifts so that I kind of built up a little bit of time off in lieu so I could use it later. So, through the summer that was good.

Catherine described a period of “really crazy juggling” of work and her son’s hospital appointments.

So, after that, so during all of that time, the hospital admissions and just more unwell I am a single parent and so it’s just the two of us at home. I, I did a lot of really crazy juggling with work and [son] and hospital appointments which probably in retrospect wasn’t entirely sensible and I really should’ve taken a bit of time off work [laughs]. But somehow I managed to, to do it and it was in the middle of the pandemic I didn't want to not go to work because there’s a lot of pressure at work. So, I did a lot of juggling with running into the hospital and went back to work and back and forwards and so on. Quite stressful for me. But still I’ve managed to not miss any work days through all of that time.

After time off work with stress, Catherine worked reduced hours. She passed up opportunities for promotion and wondered if her long shifts were hindering her son’s recovery.

And I wasn’t feeling very resilient myself. I was very stressed and we hadn’t really adjusted to the idea of this being a long term illness and needed to work out quite how to manage it and how to look after him and ended up having some time off sick myself because I felt I think I was at work the week before I went off sick and found that really hard to concentrate on my patients when I started crying and I had letters about patients with their bad diagnosis and things like that. I thought, I can’t be a doctor when I’m not able to handle it emotionally because of what’s going on at home, so I had some time off sick. And then I’ve gone back, but on reduced hours. So, and that’s a temporary solution and that’s going to have to, and we’re going to have to come up with some more permanent solution quite soon. And I don’t know what that solution is at the moment.

So, that’s, that’s quite a big impact for me as well as for [son] and so there’s a lot on my work when I wouldn't, I, I’ve turned down opportunities for different—for you know a step forward in my career and taking on more work it’s what I wanted to do. But only that, I’ve now had to kind of reduce what I was already doing. And if I do that on a long-term basis that will have a big financial impact as well. And I’m the sole wage earner. There’s no easy answers actually not sure what the answer is at the moment.

Well there is that you know, if he hadn’t been ill, I would’ve stepped up at work and taken on more responsibility and more hours, so you know, it would be so that more, more money would’ve come with that. So, it was stuff that I hadn’t accepted because of that. Now, I’m thinking that I need, I need to work half days because he, when he’s having a bad day, he can’t get to the kitchen to get food. So, he can’t actually really look after himself. So, if I, if I have a half day then that’s okay, I just leave something out for him and then we eat when I get back. But my long days are quite long. It’s I think it doesn't help him very much [laughs] if I’m out 12 or 14 hours and he’s not eating properly. And he’s just on his own all that time feeling so unwell and stressful for him and I think that wasn’t helping with his recovery anyway. So, at the moment I’m on a phased return to work to, I’m using up annual leave, so that I can have some half days, but that will run out at the end of the month [laughs]. Don’t know what we are going to do after that.

Catherine is considering re-mortgaging her house to cover her family’s expenses, which has included travelling abroad for treatment.

So we, we’re actually about to go to Germany for some treatment which is not available in the UK called apheresis so I’m hoping that he will improve with that to the point where actually I can go back to my normal work pattern and hopefully he will be able to do a bit more and even go to sixth form college, which would be really nice, but we, we don’t know what the outcome of that will be. I think we’ll just need to wait and see.

Yes, has that like privately funded as well?

Yes, so I’ll have to pay for that and it’s not cheap. So, you know, flights, accommodation and then each apheresis treatment is £1,100. I don’t know how many he’ll need. So, you know, my options are to, I’ve had to save money for him for university, so I’m using that right now. I may need to re-mortgage the house in order to pay for it. So, I’ll just see.

Catherine’s son tried to start sixth form but it was quickly clear that he wasn’t going to continue because of his difficulties sleeping, fatigue after activity and brain fog.

We were hoping that he’d continue to improve so that he could start sixth form. But towards the end of the summer, I realised that was probably very unlikely to be, to happen because he still was far from well and actually couldn't do anything more than a gentle walk because he’d get chest pain and breathlessness. His sleep wasn’t very good and he had a lot of this [post-exertional malaise] and would feel very unwell if he did too much. In any case, he decided to give it a go at sixth form. So, he went off to sixth form for their induction day and he managed to just about last two hours felt pretty bad whilst he was there and then had a big crash afterwards and so that made it really clear that actually he wasn’t going to be able to manage it at all. And at the same time online learning at home wasn’t an option either because of he has quite a lot of ‘brain fog’ so has a lot of difficulty with concentration and was finding learning new things seems to be really difficult, short term memory, all sorts of things like that were really hard to for someone who used to read avidly he’d easily read a book a day. He’s not been able to read a book this year at all.

Catherine finds it especially emotionally hard when her son has a relapse. She doesn’t have a social life anymore as everything is taken up by her son’s needs.

But when he’s crashing and having… and getting worse we’ve both found that really hard emotionally to deal with. So, we got to the end of the summer and he caught a cold, which was very minor but it seemed to trigger all the symptoms. And then he had a huge crash where he’d been able to do a little bit every day to, to where he was essentially bed-bound again and not able to, to even get up or stand up or do anything. He couldn't walk, you know, he couldn't even bear to be in a bright room or have any noise so he would be lying in a, a dim and quiet room. Couldn’t watch any television even.

For [son] the impact is huge, his life has essentially just stopped. He’s just had his seventeenth birthday and he was saying that I’ve had my sixteenth birthday and I haven't done anything, which is true. He’s spent most of the time on the sofa. So, you know, that’s had and of course, his education has stopped, and his social life doesn’t happen. I don’t have a social life either because you know, the most I can manage is to fit work in and then come home so yeah [laughs]. Everything is taken up around what he needs.

Catherine says she didn’t find it easy to navigate and access care for her child. She says some clinicians are “more on the ball with it than others.”

Well, easier to navigate the system you’d have thought it would be wouldn’t you as a GP. Booking his vaccination is easier, but the navigating, accessing care actually wasn’t. And you know, that’s from somebody who knows the system and works in the system and still, I really struggle to get appropriate care for him so it wasn’t really until the sort of private cardiologist in May that we had anybody who was, you know, had listened to the whole story and understood the at least PoTS (an abnormal increase in heart rate that occurs after sitting up or standing) part of it and was able to give us treatment, a proper diagnosis and treatment for that. And then it was August before he was seen in the Long Covid clinic and up until then we’d seen, we’d been admitted three times and had seen quite a number of different consultants and none of those appointments have been very helpful and some of them have been the exact opposite actually.

Not given us good advice such as, you know, you should just get back on your bike when actually you need to pace and that’s a very well-established thing in Long Covid just like in any other overactivity syndrome if you over-exert it tends to exacerbate symptoms. Pacing is really important and a very slow increase in activity when you’re able. But you know, if you suddenly do some strenuous exercise, I think that can cause, have a big detrimental effect and make the symptoms much worse and that’s certainly been our experience.

So, I think, you know, Long Covid is a new thing and that some clinicians are more on the ball with it than others and we’ve encountered both kinds of clinicians. Some have been really helpful and others have not. And that’s with me telling it, speaking in medical language and being able to describe exactly what’s going on, being able to provide blood pressure and pulse readings and some kind of understanding or idea of what’s going on and we still struggle with that I feel. And even with paying for it we still weren’t able to implement the treatment plan we got from that private appointment.

While Catherine felt relieved that the team at the Long Covid clinic spent time listening to her 17-year-old son’s story, she was disappointed at the lack of treatment available.

So many things like that, and being kind of mislabelled though eventually he was seen in the Long Covid clinic which was quite helpful because they listened to the whole story and not just one half of it and spent you know, a good hour with us and that was really, really good that felt much better for us to be heard and also not to be dismissed and for them to understand that actually this is Long Covid and it’s a multi system disease which you know we can’t understand and that they’d do what they could to help. So, that felt better. But there’s still really no treatment available.

Catherine is taking her son to Germany for apheresis, a private treatment that’s not available in the UK – she says she may even need to re-mortgage her house to fund it.

So we’re actually about to go to Germany for some treatment which is not available in the UK called apheresis, so I’m hoping that he will improve with that to the point where actually I can go back to my normal work pattern and hopefully he will be able to do a bit more and even go to sixth form college, which would be really nice, but we don’t know what the outcome of that will be. I think we’ll just need to wait and see.

Yes, has that been like privately funded as well?

Yes, so I’ll have to pay for that and it’s not cheap. So, you know, flights, accommodation, and then each apheresis treatment is £1,100. I don’t know how many he’ll need. So, you know, my options are to, I’ve had to save money for him for university, so I’m using that right now. I may need to re-mortgage the house in order to pay for it. So, I’ll just see.

But there’s still really no treatment available. Although you know, sometimes I’ve felt with them treating the PoTS and he’s taking a different tablet now, which helps a little bit. He’s having something to help with his sleep and that’s better, he’s found it a little bit better. And there’s various vitamin supplements as well. But almost no treatment for the actual underlying disease process because they’re not entirely sure what’s causing it. Although there is a lot of new evidence for microscopic blood clots and inflammation of the blood vessels, endotheliosis. And some new treatments being tried, which is what we’re going to Germany for. We’ll have to go and see what happens. But I’m quite hopeful that they have pretty much 100% of their patients have improved some degree or other. Some of them not very much and others very, very much so. We will see what happens.

Catherine said there were so many uncertainties about her son’s illness and future. She has found it helpful to accept that the situation won’t resolve quickly.

We were wondering, is it going to get better? What’s the cause of it? How can we help that and there still aren’t really any answers. So, a lot of uncertainty to deal with about, you know, what’s happening to his body and what the mechanism is for that and do we have any effective treatments, not really. We don’t know the problems, we don’t know how long it’s going to last and what the likelihood is of recovery whether it be a full recovery or not. We just don’t know the answers to any of those questions. And whilst he’s, you know, I’ve found that when he’s kind of making slow improvements, we can handle that and that’s good or we take each improvement and I’m really pleased about it and even though he’s not functioning as he should do and not able to go to college and or see his friends, lots of things he can’t do.

Thinking about the future, how do you feel looking forward?

It’s hard to—I think, you know, I think we’ve kind of come to a place of kind of accepting where we are at a bit more. And I think that that’s helpful with your, you know, initially I was thinking, ‘Oh that’ll just be a couple of weeks and he’ll get better’ or I might be thinking as time went on, ‘Oh another month or two and he’ll get better. He’ll be better in time to go to sixth form.’ He’ll be, you know, and that was actually said to us, he’ll be better in time to go to sixth form. And so, I think with the big crash he had in October I realised that actually this was going to go on for longer. I don’t know how long, and it might be years, might not just be one year, it might be several years or many years or forever. I don't know. I hope, I really hope it won’t and I hope he’ll get better in the next few months. And that’s really what I’m expecting. But there is the possibility that actually that’s not going to happen.

As a doctor and a parent of a teenager with Long Covid, Catherine recognised how important it is to be seen at a Long Covid clinic early on. She said the service is still evolving “they’re building the aeroplane while it’s flying.”

Well, I think GPs are educating themselves and there’s a lot of GP education going on, but that needs to carry on. I think that’s probably that, you know, more GPs need to be educated following because we’re all seeing it, we’re all seeing patients with Long Covid and that will make a difference. I think the Long Covid clinics are up and running and that’s good. But there, there are things that could change there as well. Some Long Covid clinics go straight to rehab. And without a doctor being involved. For somebody like [son] it would be you know, the, the patient journey would’ve been far better if he’d, you know, if there’d been a Long Covid clinic at the beginning of the year which there wasn’t at that point.

He could’ve been referred straight onto that team via a doctor and then discuss with a multi-disciplinary team of specialists so that we could’ve had the cardiology input and neuro input and maybe infectious diseases you know, a whole range of different specialists who, who could all discuss it as needed, so that we didn't have to wait for all the different referrals which have eventually taken a whole year to eventually get into place very slowly with an awful lot of effort from me and our GP has had to do a lot of referring [laughs]. So yeah, there’s room for improvement and I think it’s you know, they like to say they’re building the aeroplane while it’s flying, which you know, so that it’s evolving and changing as we, you know, all the time.

But certainly, just saying, I’m sorry you’re feeling unwell here breathing exercises and leg exercises or whatever doesn't really help very much if you’re already doing those and accessing our services online. So, what we really needed is some five or six you know, why has he got chest pain? Why is he short of breath? Does he have myocarditis and what’s going on with the ‘brain fog’ and all of the neurological symptoms he has? It’s taken a long time to even find someone who is willing to think about that and getting to find some answers.

Yeah and to hearing someone who’s actually invested—

There, there are some really good people involved now, people I talk to who have gained a lot of experience and are very interested and that’s really good, if it’s a little bit patchy across the country. So, some patients are getting better service than others. And then there’s the wait. So as a GP I’ve referred someone six months ago and they haven't had their appointment yet with the Long Covid clinic, I know she’s struggling at home. And I’m struggling to find the right help for her. So, the NHS I know is little bit broken [laughs] at the moment.