Transcription for Episode 3
00:00:10:02 - 00:00:35:23
Beverley
Hello and welcome to the EDI Chronicles at Brain Sciences podcast. I'm your host, Beverly Isibor. The equality, diversity and inclusion coordinator at the Faculty of Brain Sciences. In this podcast, we sit down with an expert to learn about all the wonderful and impactful things happening in brain sciences, as well as higher education more widely in the equality, diversity and inclusion space.
00:00:36:00 - 00:00:56:18
Beverley
Or you can say it as EDI Space. So whether it's learning, working or researching. This podcast is dedicated for academics, professional staff, researchers, and any curious people willing to learn about embedding EDI in their practice.
00:00:56:20 - 00:01:22:13
Beverley
Today, we're talking about the impact of long Covid in a learning and working environment, a condition that affects 3.3% of the UK population, with 71% of those people having had it for more than one year. So joining me today is Rikesh Rajani, a senior research fellow at the UK Dementia Research Institute who has been living with long Covid since March 2020.
00:01:22:15 - 00:01:44:01
Beverley
Rikesh is also a member of the Disability Equity Committee at the Faculty of Brain Sciences, where I've heard him passionately advocate for raising awareness about the impact of long Covid at UCL. His personal experience offers a unique insight into what it's like to navigate life with this condition. So welcome. Rikesh. Hi. How are you doing today?
00:01:44:04 - 00:01:44:18
Rikesh
I'm okay.
00:01:44:19 - 00:02:04:10
Beverley
Thanks. So just a disclaimer. Rikesh has a mask on in the studio. So if you hear a bit of high and lows. that's the reason. But you should be able to hear Rikesh easily. So we're going to get straight into it. What would you consider as long Covid if you were to put in your own words?
00:02:04:11 - 00:02:19:18
Rikesh
So a few different definitions, but the most common one is any ongoing symptoms that, keep happening 12 weeks after a Covid infection? and these can be either continuation of symptoms that you had at your key stage of the disease or completely new symptoms.
00:02:19:23 - 00:02:38:24
Beverley
Okay. That makes sense. So, for example, people that contracted Covid, including myself, but I had no symptoms actually. But people who had symptoms, if, for example, they had, persistent cough during Covid and they had it 12 weeks after Covid, that will be considered as long Covid.
00:02:39:02 - 00:02:39:14
Rikesh
That's right.
00:02:39:15 - 00:02:49:13
Beverley
Okay. So there were obviously various symptoms, including, brain fog and, fatigue. those are symptoms that I'm guessing people will suffer from.
00:02:49:14 - 00:03:13:17
Rikesh
Yeah. So, so there's quite a wide range of symptoms with long Covid, and different people have different clusters of these. But the most common are persistent shortness of breath. fatigue and brain fog. And I think some of the problems with understanding Long-covid is that a lot of these terms are quite vague. And the definitions, I mean people have fatigue and confuse that with tiredness or sleeplessness.
00:03:13:17 - 00:03:14:09
Rikesh
But actually I would.
00:03:14:09 - 00:03:15:09
Beverley
Have said that myself.
00:03:15:10 - 00:03:23:11
Rikesh
Yeah. I mean I don't know the way I think that is. If you've ever had a migraine, the difference between fatigue and tiredness is like the difference between a migraine and a headache.
00:03:23:12 - 00:03:23:19
Beverley
Okay.
00:03:23:19 - 00:03:43:03
Rikesh
It's it's something it's almost a bone deep weariness. that can kind of make it hard to sometimes move your limbs at its most extreme. So they're some of the people that are most extreme, and with long Covid just struggle to get out of bed. and the same I think with brain fog we don't it's just kind of a vague term.
00:03:43:03 - 00:03:52:17
Rikesh
But brain fog can range from a difficulty concentrating right the way through to what we as neuroscientists would classify as mild cognitive impairment.
00:03:52:20 - 00:04:03:03
Beverley
Yes. Okay. That makes sense. So I'm guessing these symptoms obviously have an impact on daily life. So it would be considered as a disability.
00:04:03:05 - 00:04:21:24
Rikesh
Yes. So because certainly for anyone who's had them for more than a year, automatically cancer's a disability. someone who's not had it for a year yet. There's, some debate about whether you can be expected to necessarily have it to last year or more, and therefore whether it would be considered a disability under the Equality Act.
00:04:22:00 - 00:04:23:02
Beverley
Okay.
00:04:23:07 - 00:04:37:09
Rikesh
So, I mean, I think the fact that, you know, 70% of the people currently suffering with long Covid in the UK have had it for more than a year, means I think you can reasonably expect to treat it as something that will last a year or more, and therefore it should be covered under the Equality Act.
00:04:37:11 - 00:04:50:15
Beverley
Okay. That's good. so I want to actually highlight your kind of if you if you're comfortable in stating that your symptoms of, persistent, Covid long Covid.
00:04:50:17 - 00:05:07:06
Rikesh
So I have, fatigue, brain fog. I did, in the kind of early stage of my long Covid, have very bad brain fog and shortness of breath. But those over the first year got better. They're not back to normal, but they're better than they were.
00:05:07:08 - 00:05:09:19
Beverley
Since March 2020. Yeah. Oh, wow.
00:05:09:23 - 00:05:36:10
Rikesh
So. So, I mean, the biggest thing that's very common is what's known as post exertional malaise, sometimes also called post exertional symptom exacerbation. So this means that any time you do any physical, mental or emotional activity afterwards, your symptoms get much worse. So people who suffer from long Covid and other conditions, like me, would describe that as a crash sometimes.
00:05:36:12 - 00:06:01:06
Rikesh
Sometimes you have people talking about, spoons, which is their way of quantifying the energy limits they have. So part of managing the condition is keeping within your own personal energy limits, because if you go above that, you will crash. And then for kind of hours or days, depending on the of the person and the extent of that, all your symptoms will be much worse.
00:06:01:09 - 00:06:23:13
Beverley
Okay. So when did you actually realize mean I know we give a time period to, long Covid, which is, 12 weeks, right? And then after a year, you said a year up until that point. When did you actually realize that? Oh, I have long Covid. What was one of the things that made you go and seek help for it?
00:06:23:18 - 00:06:51:01
Rikesh
So it was quite difficult because early on in the pandemic, it wasn't defined. And most doctors, I mean, even now, many doctors don't fully recognize and understand that. But certainly at the time, many were dismissive of that. So, for me, the earliest symptom was, persistent shortness of breath. So if, a couple of months after my Covid infection, I just had real problems breathing.
00:06:51:03 - 00:07:12:13
Rikesh
and at the time, because not more not much was known about Covid, this was thought to be kind of, just a persistent part of that. and actually, there are some things which in retrospect, I can see were actually also early symptoms, but because at that same time, transition to working from home and not being able to leave the house much, with lockdowns.
00:07:12:15 - 00:07:24:02
Rikesh
So actually there was, fatigue and brain fog, right? Quite early on, probably about a month out from that. But I don't think I necessarily noticed it when working from home and not doing physical activity. You don't necessarily notice that.
00:07:24:04 - 00:07:31:13
Beverley
Yeah. Okay. That's interesting. So at what point did you go to the doctors or did you read up about it first?
00:07:31:14 - 00:07:56:07
Rikesh
Yeah. So so, you know, with breathlessness, every kind of month after my initial infection, I was just kind of contacting the GP, and eventually after 3 or 4 months, they were like, okay, maybe we'll send you for investigations. but most of what I learned was reading up online on other people suffering with the condition. and that's certainly for the first couple of years was far more informative than anything.
00:07:56:13 - 00:08:00:03
Rikesh
Even the long Covid clinics in the hospital, which is about that.
00:08:00:05 - 00:08:14:09
Beverley
Because they were also new to the condition themselves. at UCL, you, I'm a senior research fellow at the Dementia Research Institute. So in that case, how has it had an impact on your work life at UCL?
00:08:14:10 - 00:08:37:13
Rikesh
So I think there are the two. The two biggest factors that impact me are the this post exhaustion malaise I mentioned and also the clinical vulnerability that comes with the disease. So the research, the actual research on this still isn't very strong. But everyone with long Covid knows from experience that if you get another Covid infection and makes you a long Covid much worse, okay.
00:08:37:14 - 00:09:01:02
Rikesh
And depending on the person and the situation, sometimes that can be for a couple of months at significantly worse, sometimes just permanently, it's much worse. And when you're kind of you've already had to compromise your lifestyle in so many ways, you don't want to take that risk at all. So that means that, you know, as you said at the beginning, I'm wearing a mask right now, and any time I'm indoors with people, I will be wearing a mask.
00:09:01:03 - 00:09:01:13
Beverley
Yeah.
00:09:01:13 - 00:09:19:03
Rikesh
So that means, you know, I can't if I want to go to a restaurant or a pub, but can I be in good weather so I can sit outside? It means that at work, I need an isolated office space. At the very least for me to be able to have lunch or have a drink of water, even.
00:09:19:05 - 00:09:28:05
Rikesh
Yeah. so that's. Yeah. And that can be quite limiting because, you know, not every department has space to provide you with that.
00:09:28:07 - 00:09:33:14
Beverley
I was going to say sometimes we're always fighting for space that you see. Okay.
00:09:33:16 - 00:09:54:16
Rikesh
yeah. and the other side of it is the, the, the post exhaustion malaise. So it it basically involves a lot of planning. so I, you know, I'm a lab based researcher, and I know that if I've got a couple of busy days in the lab, I need to plan that the weekend before that, I'm doing nothing.
00:09:54:18 - 00:10:03:07
Rikesh
And resting the day after that, I'm working from home because then I avoid the extra exertion at the commute. being at home, I can take longer rest breaks during the day.
00:10:03:11 - 00:10:04:18
Beverley
Yeah.
00:10:04:20 - 00:10:24:06
Rikesh
Kind of, because in order for me to keep working full time, it means having to cut out everything else. So, no, obviously no physical exercise at all. But even socializing is bare minimum, because kind of doing anything else other than my work takes me beyond that energy envelope that I have.
00:10:24:08 - 00:10:35:14
Beverley
Oh, wow. So it's actually had a very massive impact on your life and on your work life in general. How have you found it in navigating that with other people?
00:10:35:17 - 00:11:01:11
Rikesh
I guess it's been difficult because because there's so little recognition of that. So for example, kind of in many ways it was easier during the kind of semi lockdown period because people would be doing things online anyway, and they are much more accessible to me, both in terms of the clinical vulnerability and the reduced exhaustion. and there are various levels of understanding that people have.
00:11:01:11 - 00:11:25:21
Rikesh
So, you know, it's I guess in many ways it's the same as any other invisible disability beyond the fact that I'm wearing a mask. You wouldn't know that was anything different about me. So, for example, when I use the lift to get up one story, you can see people charging. Yeah. Or sometimes even actively making comments. And almost as a backlash to the initial lockdowns, there are still, you know, people who will comment on you for wearing a mask.
00:11:25:21 - 00:11:34:00
Beverley
So let let me just button that politicization of the mask wearing. Yeah, I guess do what is considered as an impact as well.
00:11:34:03 - 00:12:15:09
Rikesh
Yeah. So I mean, I guess, you know, within UCL not so much, but yeah, I mean occasionally still but and certainly wider, wider and in life that's, that's had a big impact because people judge different people don't necessarily want to give you the accommodations. And I think, I think some of the kind of rush to return to normality, has also led to kind of both by wider society and the government and everything to downplay the impact of long Covid, because even post vaccines, yeah, there is still a the risk is reduced, but there's still a risk that with every Covid infection, you face between a one and 5% risk of getting long Covid.
00:12:15:13 - 00:12:35:24
Rikesh
Oh, wow. and obviously, if you if everyone realized I think the full impact of long Covid and that that chance is still there, people would be maybe maybe people wouldn't. But I think if people truly understood what it was like, there would be a lot more cautious about returning to normal. And obviously it would have downstream impacts on the economy and things like that.
00:12:35:24 - 00:12:50:18
Rikesh
So I think that's been a wider desire to to downplay the effects and that that kind of impacts society, like, people's wider understanding, but also the provision of services, research and things like that.
00:12:50:19 - 00:13:14:20
Beverley
Yeah, I agree and and I guess is that including when Covid happened, you can look in a way of the government and like organizations and institutions had to balance the majority versus the minority and in a lot of decisions that were made. And that is unfortunate. I understand it from the business point of view. And, you know, returning to normal.
00:13:14:20 - 00:13:30:06
Beverley
But at the same time, it does give some form of isolation to those who do suffer from long Covid, even though it is recorded at 1.8% of the UK populations are from Covid. I can imagine that there are a few more people.
00:13:30:08 - 00:13:50:17
Rikesh
Yeah, I think, I think, you know, understandably there is that desire. You know, it was a traumatic period in many people's lives, and there's obviously that desire to move past that and kind of imagine that we're beyond that and we don't have to worry about that anymore. But that in some ways makes the problem worse because it means there are no mitigations.
00:13:50:17 - 00:14:13:17
Rikesh
And I, you know, even the data collection on how much Covid there is currently around. So, you know, if I there are occasions when you have to risk being indoors without a mask, whether that's hospital appointments or dentists or whatever. And if I'm trying to kind of, you know, take personal responsibility as the as the phrase says, it helps me to know what the current level of Covid cases are.
00:14:13:17 - 00:14:27:22
Rikesh
But a lot of that data has been, is a lot, less stringent than it was being collected before. So it's hard to even kind of try and make my best decisions. Yeah, because it's largely not being considered.
00:14:27:24 - 00:14:55:16
Beverley
I think when we speak about disability in general, we speak about the how society can help those with disabilities as opposed to the individuals themselves feel like they have to take on the work. Do you think that at your work, for example, they have done enough, or at UCL more widely, they've done enough for people like you?
00:14:55:18 - 00:15:17:08
Rikesh
I think me personally, I'm been lucky. And I think for me, I've managed to get all the accommodations I need. Yeah, but it has, I guess, you know, coming to being disabled later in life. That's kind of quite a kind of eye opening for me to, to realize that that mental load that is placed on you to try and get there.
00:15:17:08 - 00:15:40:15
Rikesh
So I've been very lucky that I have a very supportive line manager, and that helps with kind of the advocacy needed to get the accommodations from other other people in the department. But I'm not sure that, that, everyone would be able to get that as easily. So I think it's been very dependent on having a good relationship with an understanding line manager.
00:15:40:15 - 00:16:09:17
Rikesh
But even beyond that, there is only so much my line manager can do because they don't control department of Funding or resources. They if, for example, the provision of separate, isolated office for myself, I've been lucky that there has been one available, but it is on the understanding that if someone, you know, a more senior person is recruited to who would have an automatic right to that office, potentially that could be withdrawn.
00:16:09:19 - 00:16:11:13
Beverley
Okay.
00:16:11:15 - 00:16:37:11
Rikesh
and, you know, because that's kind of what the general policy is and they don't have the resources. And while UCL is, you know, much better than many other universities and, and talking about disability and equality and trying to provide these things, the resources aren't necessarily available from Central University, to filter down, to actually provide the accommodations needed in every case.
00:16:37:13 - 00:16:53:10
Rikesh
So you can have, you know, a very understanding line manager, a very understanding department, report from occupational health. But ultimately, if the, the funding and resources aren't provided centrally, that doesn't always translate into the accommodations being able to be provided. Okay.
00:16:53:10 - 00:17:36:06
Beverley
So resourcing is very important when we're speaking about, helping those with long Covid. And as you said, it depends on department, departmental faculty to faculty. And I'm guessing like UCL already is very restricted to space. So I can just imagine how, even though your experience has been good, there may be people who have been, not as successful with such accommodations, but I guess overall, would you say the free tier, H.R. policy around flexible work in, the 20 to 80% work from home versus, like, coming into the office?
00:17:36:11 - 00:17:41:04
Beverley
Would you say those policies are helpful to people like yourself?
00:17:41:04 - 00:18:05:02
Rikesh
I think so, because it normalizes hybrid working. Yes. And that is very important, I think, because you need that that flexibility in how you so even, you know, I mean, even though if you're a lab based researcher, you inevitably have to be in a certain amount of the time. But kind of having that normalized flexibility so that when you don't have to be doing lab work, you can be working from home.
00:18:05:05 - 00:18:09:17
Rikesh
Yeah, allows you to plan your day better, plan your week if your energy levels better.
00:18:09:19 - 00:18:34:18
Beverley
That's really important because I want to kind of go back to the importance of your line manager. as much as you've said that, you know, resourcing and, you know, other factors may play, a role as to what lengths your line manager can support you. But if your line manager is advocating on your behalf, that is is super important.
00:18:34:20 - 00:18:43:01
Beverley
for those that suffer with, long Covid or any other condition that require some form of reasonable adjustment, would you agree?
00:18:43:02 - 00:18:57:15
Rikesh
I think that's the most important thing is, is a line manager had the advocates view and and because a lot of the things like flexible working arrangements, it's entirely within that gift to provide. Anyway, a lot of the time. so I think that's the most important thing.
00:18:57:17 - 00:19:27:09
Beverley
And a lot of it boils down to awareness as well. There may be some line managers that probably don't know how to deal with, you know, reasonable adjustments. Hopefully they do by this point because UCL do offer reasonable adjustments training for line managers. So if you're a line manager and you don't know about it, I think at the discussion such as this should kind of prompt you to go for such training, because it gives you an idea as to how to deal with, disability.
00:19:27:11 - 00:19:52:15
Beverley
from a line management perspective. Okay. I'm very happy that we've discussed that because we've covered resourcing, we've covered line management, we've covered policies that exist to support long Covid, but by end of the day, there needs to be some form of institutional advocation and kind of look between the fine lines as well. and the gaps that, you know, may exist for individuals that have long Covid.
00:19:52:17 - 00:20:02:05
Beverley
So this is my magic. One question I ask this in every episode, if you could change one thing to help people with long Covid, what would it be?
00:20:02:07 - 00:20:22:11
Rikesh
Well, there's a few different things. If we have time ranging from kind of the most optimistic to maybe some which, more feasible. but I guess if we could do anything, it'd be trying to find a treatment or a cure for for long Covid. So right now, we don't really know what causes the condition. So I, I'm a neuroscientist.
00:20:22:11 - 00:20:43:07
Rikesh
I have my ideas, but the research isn't really there yet. So, the understanding the biological mechanisms by artists that we can either cure it or at the very least, treat it would obviously be great, but, you know, that's that's a while away. But the the key there is, is kind of more funding for research. I guess that's down on the the realistic list would be cleaner everywhere.
00:20:43:07 - 00:21:03:04
Rikesh
So, you know, after, the kind of cholera outbreak in the 1850s, we realized that we need clean water everywhere to prevent the spread of diseases. I kind of like to see this. See that, the Covid pandemic trigger something similar for respiratory diseases. So, kind of putting proper air filtration on ventilation in all public buildings.
00:21:03:04 - 00:21:31:19
Rikesh
So university schools, hospitals would just make life much. Not the only way to make life much easier for people with long Covid, but also for other clinically vulnerable or immunocompromised people. And and more widely, it would have other benefits to society. So, for example, you would have children missing fewer days of school because, of sickness, you would have, employees missing, fewer days of work.
00:21:31:20 - 00:21:57:10
Rikesh
The economic benefits that would bring, you'd have, less stress on the NHS during winter. And, I guess the most realistic end of that would be just greater awareness and understanding of non-COVID mobility. And for people to, to, understand the condition, realize how severe its impact can be on people, and ultimately know how best to support people.
00:21:57:12 - 00:22:05:02
Beverley
Yeah, I think there needs to be more stories because like, your story would be very different to someone else who has long Covid.
00:22:05:07 - 00:22:32:23
Rikesh
And I think, you know, positive from that is this you almost, almost by definition, you never see the worst impacts because the times when I, I'm at my worst because I've, I'm going through a fatty crash or something similar. People won't see me. I'll be at home resting. Right. So it's almost that it's, you know, it's a it's another form of masking, when I'm, when I'm out in the lab or out seeing friends, I'm.
00:22:33:00 - 00:22:46:22
Rikesh
I have people don't see the kind of, rest and preparation that's gone into that and the rest that's required off the bat to make me be able to kind of appear almost as if I wasn't suffering from this.
00:22:46:23 - 00:23:09:20
Beverley
Yeah. And I guess that that goes on to someone like myself and others, not to prejudge before you kind of understand or even even if you do not know, even if the person does not disclose to you that they have long Covid, anything could happen. And I guess that's just the, grand principle that I hope everyone follows at UCL.
00:23:09:22 - 00:23:23:05
Beverley
So it'll be really good for you, Rikesh, to provide practical advice on people who might have, long Covid or probably don't know that they have long Covid. Well, what would be advice to them?
00:23:23:07 - 00:23:40:13
Rikesh
I mean, if you're if you've kind of got any ongoing symptoms after the Covid infection, I'd go see your GP and see if you can get referred to long Covid clinics. I mean, here at UCL, we're lucky that, DCH has one of the biggest and best long Covid clinics in the country. I'm gonna.
00:23:40:14 - 00:23:41:01
Beverley
Just close.
00:23:41:01 - 00:23:42:02
Rikesh
By. Yeah, just.
00:23:42:02 - 00:23:44:08
Beverley
Across the road.
00:23:44:10 - 00:24:07:00
Rikesh
and I guess, you know, within within the workplace that the, the first place to go to is talk to your line manager. And if, if you don't necessarily have the best relationship with your line manager, I guess maybe a departmental head or an HR person within your department, he might be able to help you with getting the, the best accommodations that can help you.
00:24:07:00 - 00:24:32:07
Rikesh
I think the key is that it's because, you know, one of the, one of the symptoms of this condition can be, problems with cognition. And at a university, one of the things you're most employed for is the way an ability to think. Yeah. so it can, I know, be quite, sometimes difficult to own up to admit to having long Covid and to having problems with thinking.
00:24:32:07 - 00:24:50:06
Rikesh
But I think, yeah, you know, if you as long as you have an understanding line manager or a HR person that you can go to to kind of discuss this openly, that's the best way to actually get the the accommodations you need to be able to kind of carry on working to whatever capacity you're able.
00:24:50:12 - 00:25:03:04
Beverley
Yeah. That's thank you. That's really good advice. And, menu mentioned the H.R. Representative. specifically, I'm aware of, workplace health. Yeah.
00:25:03:04 - 00:25:28:07
Rikesh
So, so workplace health, very supportive. Yeah. But ultimately all they do is make recommendations to your line manager, which a line manager then has to admit. So if you, I mean, sometimes, depending on your line manager, you won't even need that. They're understanding enough often. having that recommendation from workplace health, helps for them and for you to advocate for accommodations, especially if more resources are needed.
00:25:28:09 - 00:25:48:10
Rikesh
Yeah. So that that is definitely something about doing. But I was thinking more in the case of because I think, like as we discussed earlier, that, a supportive line manager is the most important thing, I think, to getting the accommodations. And if you don't necessarily have the best relationship with your line manager or you don't, you're not, you're concerned they won't be fully supportive.
00:25:48:12 - 00:25:55:07
Rikesh
I don't if, an HR, representative within your department might be a good place to start. Yeah, right. it's.
00:25:55:07 - 00:26:20:06
Beverley
A good start. Local. Yeah, yeah. Thank you for sharing your journey and insights with us today. For our listeners who may be experiencing long Covid, it's important to reach out for support. Probably start with your GP and contact them for medical advice at work. I would advise you to inform your line manager and Rikesh, as also mentioned that as well.
00:26:20:11 - 00:26:52:15
Beverley
Inform your line manager or local HR representative and don't hesitate to seek advice or information from Workplace health at UCL. Additionally, if you're suffering from long Covid and would like further support in terms of just someone who's experienced that first hand, Rikesh has kindly offered to be contacted and you can contact Rikesh through fbs.edi@ucl.ac.uk. We hope this episode has provided some valuable information and a reminder that you're not alone on this journey.
00:26:56:14 - 00:27:04:20
Beverley
Thank you for joining the EDI Chronicles at Brain Sciences podcast. I'm your host, Beverly Isibor, and I hope you join us next time.