The need for employers to recognise Long Covid – and for workers to receive care, compassion, and treatment

Clare was an Honorary Lecturer at the Centre for Occupational and Environmental Health, University of Manchester, and worked as a Trainer for the National Education Project for Health and Work. Clare talks with first-hand experience of Covid-19 and has written several papers on the condition including editorials on returning to work after Long Covid, leaflets for workers and employers published by Society of Occupational Medicine, and a recent consensus document on management of Long Covid. She addressed the WHO as a spokesperson for patient groups with post-Covid health issues (an opportunity created through LongCovidSOS's 'Message in a Bottle' campaign).

We spoke to Clare to find out more about what occupational health is and how it relates to Long Covid, as well as the tremendous amount of work she has been doing and what her advice would be to employees and those who as off work as a result of Covid-19. An immensely inspiring advocate for those with Long Covid, I hope you enjoy the conversation as much as I did.

Takeaway quotes from the episode

1. On her concerns: “I'm extremely concerned about the number of people who have been off work for many months or more than a year. This is going to be an absolute crisis if it's not dealt with. Obviously, on an individual level like [Dr Nisreen Alwan MBE] has spoken about, you can see the slide down from you know, being having work to not having work and all that entails. When somebody has been off work for actually a few weeks, it starts to impact on their chances of recovery  and their chances of getting work again, so I'm very upset and very worried for the amount of people who right now are about to lose their jobs. Employers' patience have now run thin – which you can understand – but my heart is breaking for the people that are about to lose their jobs. We have been saying for the past year, the people that I've alongside, that this is going to happen. One of the reasons that has held people back is that they have not received medical assessments. Some people haven't had any medical assessment in 15 months. So these are people walking around with actual physical problems that have not had that assessment: now, if they had had assessment earlier, they could have had treatments that help their symptoms. Nobody's claiming to cure it. But we do know that with certain symptoms and certain treatments, their functioning can improve so quickly. I'm dismayed that so many people have not had this assessment. This has led to them being absent from work and not being able to function.”

2. On her message to employers: “My message to employers is, I realise that you've all been in horrendously difficult situation as well. Listen to the individual, ask what you can do to help with their recovery. Now, it's quite a standard thing for us in occupational medicine to say to employees, it may actually help everybody if you were to fund the tests that were needed, or fund an appointment with a specialist because that way the person can access some early treatment. That's one thing that I think they should consider, and it's quite normal. The other thing is to say to them, what are you going to do if you do have to lose these people who are long-term sick [with Long Covid]? What are you going to do about replacing them? Because we don't have the workforce waiting to replace them. We already have skill shortages in the UK, we have done for ages. So who is going to replace your employee with 20 or 30 years experience? Because this is the age group most impacted. I would also say, what can you do to help them start to come back? They do need a much more gradual return to work than with other conditions.”

3. On speaking to the World Health Organisation [WHO] about the potential Long Covid employment crisis: “In August, one of the groups [LongCovidSOS through their 'Message in a Bottle' campaign] asked Amali [Lokugamage] and I to come to a meeting with the W.H.O. with them. Of course, we were absolutely terrified. But we were asked to give a five minute slot and and that meeting was extremely fruitful. I think that's where the W.H.O. really realised was an issue. The messages Amali and I gave was 'Look, this is a real thing. These are people who have not been assessed and they need assessment – and by the way, if you don't do something to help these people as soon as possible, the crisis of losing their jobs is going to happen. We finished that meeting and the people running it said ‘We will now hand over to Dr Tedros [Adhanom Ghebreyesus, W.H.O. Director-General] for him to sum up’. Well, the beautiful thing was we didn't know he had been there. I think it was quite kind because we would have been even more terrified! He just said 'Amali and Clare, I've heard your message'. And he said to the Long Covid group, I've heard your message. And they have been true to their word.”

4. On collaborating with others in the Long Covid support community: “I find that quite magical. I mean, it's one of my favourite things to form collaborations and see and create new outcomes. It's something that I happen to have always done in all my jobs. So I love a collaboration that works. I find that energising and I think that's a sign that things are working. You don't necessarily want to know what things are going to lead to, but when you have a collective will to work together, to come up with new solutions, you do then come up with new ideas.”

• You can listen to Covid Matters on Spotify, Apple Podcasts, YouTube, Acast, and wherever you listen to your favourite podcasts.

Here are some links to articles/work featuring Clare:

• The Society of Occupational Medicine (SOM) – Urgent need for occupational health for people with Long COVID

• We have heard your message about long covid and we will act, says WHO

• Promises of Long Covid support have not materialised (a blog by Clare Rayner)

Episode transcription

This is an automated transcription which will contain imperfections. We’re looking for volunteer transcribers to brush these up, so if interested please get in touch!

Michael MacLennan  

It'd be great to know a bit about what you were doing before the pandemic hit.

Clare Rayner  

Oh, that's, that's really interesting. It seems so long ago. I have long term health problems, so I was not working full time. I was an occupational physician, I was teaching that at the university. I was teaching at the Centre for Occupational and Environmental Health, which is a world-leading one. Another strand of my life has  been teaching communications, that's kind of separate, but I teach communication using actors and so on. I love working with them. Yeah, so that's kind of what I was doing workwise.

Michael MacLennan  

And for those of us who aren't aware of it, what is occupational health?

Clare Rayner  

To be honest most people aren't aware – even within medicine, people don't even know that it's an actual specialty. We do a lot of different things, so it's hard to summarise it briefly, but basically we look after people of working age who are at work. But from two angles, we manage occupational diseases. That's a lot about prevention and all sorts of things like engineering so health and safety. So we know quite a lot about the angle of PPA and things like that. So preventing occupational diseases, but then also having a very low threshold for detecting them. So that's, that's quite specific. On the other hand, we have what we call the effect of health on work. So that's helping people to stay in work, trying to get managers to make adjustments, advising whether they're fit for work. And that's just a whole range of any crop, any health problem that an adult of working age might have.

Michael MacLennan  

And then, so when the pandemic hit was your own experiences off of that,

Clare Rayner  

We were doing quite a run on this communication teaching sessions, working with the actors, and that's in a simulated environment. So actually, it was like a simulated a new environment, we were pretty busy. We had 100 people in the department, in the weeks running up to the pandemic. And basically, people started coming in with lots of coughs and colds and things. Now in occupational health we have a very low threshold for suspecting something. So I saying listen, nevermind what the government putting out about what the symptoms are. Anyone who's got sore throat, whatever, do not come into work. Unfortunately, people did come in because we're all self employed.

Clare Rayner  

I was in a clinically, extremely vulnerable group. So I'm always a bit cautious anyway. But I thought just two days before lockdown: 'They sent me this letter, I better heed it because we don't know what's going on here.' But as soon as we then locked down a couple of days later, I became ill: very, very, very mildly, for the first two days. I thought, yeah, I think this is it, but at least I've got away with it because that's two days of really mild stuff. Then my other problems kicked in and I got a bacterial infection. I thought I was better, and then on day 10 thing – which as you know, is probably when a lot of people take a turn for the worse – I took the massive turn for the worse. I didn't have your classical presentation. I think I was more like some of what the very ill children get. It was just completely different. I went to A&E. I'm prone to sepsis anyway. They didn't recognise it, and there was quite strict rules about who they kept in. So I actually got sent home very ill. And my blood count was extremely low, negligible, so I was quite surprised at that. I then needed carers four times a day for three months. What's really interesting – I think it's probably a good place to say it – is that a lot of my medical friends got infected at the same time. I was very closely in touch with one of my friends from medical school, because we've been working on a book together. She's an obstetrician. And so I've been illustrating pictures fought for her next book. I'm an artist as well. 

Clare Rayner  

We both were in at the same time. And we started to notice we were getting exactly the same symptoms. Only I was a few days ahead, and I would say, oh, now I've got this. And now I've got that. And then she would follow a week later. It's like it's part of the COVID. She's already a writer, and she said 'Wait, we've got to write about this'. In April, we passed published our first letter for the BMJ, and we wrote a series of letters and articles. There was something really going on . But strangely enough in that first three months, although I was very ill, I was also intensely working with a Molly on this book, and that I think kept me sane.

Michael MacLennan  

I guess you were amongst those people who first started speaking out about long COVID. So how did you find it at that time in terms of how that was being received?

Clare Rayner  

We coalesced together: a number of doctors all realised we were going through the same thing. We thought, right, we have to highlight this. It was just all around us. I think when you haven't done that before, I tend to think you will be received at face value. I tend to think that until proven otherwise. And I think we hit brick walls very early on. I wonder if people were actually they were a little bit more receptive then than they are now. Because we would have our articles published, and then other people like Dr Nisreen Alwan were publishing, and so the voice would start amplifying. So it seems like it would be heard, but I think it wasn't. And when and when people who hadn't experienced long COVID started hearing about it they thought oh, it's just post-viral fatigue. And then it's just long COVID, meaning, let's lump it all in one thing. So I think there's the people, the doctors and nurses and things who have had it. And I thought it was so important as a medical person experiencing it, or medical people, that we were able to articulate extremely well, what was happening. There are now some researchers who have really picked up on it, and some individual doctors who are just treating so many people, you know, they're really working hard, I find their voices are drowned out as well.

Michael MacLennan  

And so once you started speaking, it seems like one thing led to another in terms of how that then built up that voice. Can tell me a bit more about that?

Clare Rayner  

Yeah, that's the only way I can summarise the last 15 months! One thing led to another in a very, very rapid way. And things that I would have never dreamed of and and never wanted, I would know, I have no Media Presence, no online presence before that. happy with my art and whatever else. But I found myself compelled to speak out. And there came a point around about July when the Long Covid support groups had set up a bit. And because we were medical and speaking out, they contacted us. I think things started from there. In August, one of the groups asked Amali [Lokugamage] and I to come to a meeting with the W.H.O. with them. Of course, we were absolutely terrified. But we were asked to give a five minute slot and and that meeting was extremely fruitful. I think that's where the W.H.O. really realised was an issue. The messages Amali and I gave was 'Look, this is a real thing. These are people who have not been assessed and they need assessment – and by the way, if you don't do something to help these people as soon as possible the crisis of losing their jobs is going to happen. We finished that meeting and the people running it said, We will now hand over to Dr Tedros [Adhanom Ghebreyesus, WHO Director-General] for him to sum up. Well, the beautiful thing was we didn't know he had been there. I think it was quite kind because we would have been even more terrified! He just said 'Amali and Clare, I've heard your message'. And he said to the Long Covid group, I've heard your message. And they have been true to their word. Since then they have really, really engaged completely with this. Then I linked up with Mount Sinai in New York after that, because the chap that heads up the rehabilitation centre there and who had run the first the very first Long COVID Clinic in the world had written something in an article. And he said people need to realise that the problem and run with us so I emailed him. And we've and a handful of UK doctors with Lancome that and his department we've been in collaboration, trying to share messages and everything since. So those are just two examples really of how one thing led to another.

Michael MacLennan  

There are many other collaborations and work that you've been doing. A lot of that has been to do with working rights and people not knowing what their rights are.

Clare Rayner  

Yeah, that's right. And by this time, there's a big long COVID doctor's group. And now there's about 1000 people. And so we were we were kind of active in trying to get the message out. And I knew stuff about working rights because of my job, but also having ill health myself, I knew how to navigate the system a bit. You've got to understand that most people who have been hit by COVID haven't been that ill before. It's a completely new thing. So the doctors were completely bowled over by this and didn't know what they could ask for or perhaps even how work should be behaving to them. So I just told them and then, in the long COVID support groups it was happening the same I said no you can ask for this or know when Go back, you must have a really gradual phase return. And I took him mind, right like, again, with Mount Sinai working with them, they wanted us to write some information leaflets. So I thought, I'm going to write one on the returning work or what you can expect when you return to work with Long Covid. And I wanted it to just help people to have that conversation with their employer or their boss in an assertive way. But I kind of wrote it in a very conversational way. And I had one of my friends who's a communications expert to look at it. She edited it and made the language really easy. 

Clare Rayner  

This is another example of one thing leading to another. Somehow this I got involved with the Society of Occupational Medicine, and  one of my professors on there, I said to him, Listen, I've just written this leaflet, would you cast your eye over it and see what you think. And he said, It's brilliant, the Society of Occupational Medicine will take it up. So we've now got that out there.  think that's been a huge part of what I've done, just helping people to know what their rights are a bit. And now we're employed involved in an employment Working Group, which is part of the Long Covid Support group. There's a band of us who are really trying to support people. And we're trying to work with the union, so they know what's going on. 

Michael MacLennan  

One of the things I was curious about is, when you've been doing this work, because with long COVID, obviously, there's a variety of symptoms. So how do you manage to be able to compact that into doing a workflow or theory? That's our work?

Clare Rayner  

Oh, my goodness, well, I can't explain the effort involved. I have a slight brain injury from sepsis prior to Covid – and that actually affects my ability to write. I would tend to be very verbose in writing. Writing is now the hardest thing ever. That's why I got other people to help me. So the effort? Yeah, it feels almost superhuman. Yeah, it really does. My brain: I think one other thing that's really affected me with it, is my speech. And you might notice it's quite jerky, or sometimes words can't get out. And I think this is a very typical thing. So I go with it now. I just think people are gonna notice that what?

Michael MacLennan  

The amount that you've been doing is, seems like an amazing effort on your part, but alongside such an amazing, you know, array of other people, invoices, and so on. So how have you found there?

Clare Rayner  

I find that quite magical. I mean, it's one of my favourite things to form collaborations and see and create new outcomes. It's something that I happen to have always done in all my jobs. So I love a collaboration that works. I find that energising and I think that's a sign that things are working. You don't necessarily want to know what things are going to lead to, but when you have a collective will to work together, to come up with new solutions, you do then come up with new ideas. I've done it a lot in my occupational health work, because everything's a bit different. Better anyway. So you have to do it. So yeah, I love the collaboration, it makes it enjoyable. It usually makes it more effective. And then there are those that I shrug my shoulders that you kind of think Well, okay, we'll put these people together and see what happens and nothing happens. And that's fine, that doesn't have the energy to run, you know.

Michael MacLennan  

What's the most recent activity that you've been involved with?

Clare Rayner  

Oh, well, the most recent one was last weekend, when the TUC report came out about how many people are affected, in terms of not able to go to work or losing their jobs. And so I think it was last weekend, we were madly sort of trying to respond to that and twittering about it and trying to get messages out

Michael MacLennan  

For people who haven't been aware of the TUC report, what was that?

Clare Rayner  

As I understand that a number of experts, the TUC, they're kind of like the overseeing body of all the unions. They have done their own survey of nearly 4000 people regarding their job status. And they were looking at things like you know, who's lost their job, who's managing to work their normal duties, what support they'd heard, I think I didn't see the actual questionnaire but but basically work things to do with work status, because it really has not been looked at and this is crucial, because we have so many people on long term sick. So so their report came out with some quite shocking things. goes. And I think it is to be the start of a campaign where the TFC will feed out to the other unions and highlight issues and save rights. How are you going to help your members?

Michael MacLennan  

And so at this stage, what are your concerns going forward?

Clare Rayner  

I'm extremely concerned about the number of people who have been off work for many months or more than a year. This is going to be an absolute crisis if it's not dealt with. Obviously, on an individual level like [Dr Nisreen Alwan MBE] has spoken about, you can see the slide down from you know, being having work to not having work and all that entails. When somebody has been off work for actually a few weeks, it starts to impact on their chances of recovery  and their chances of getting work again, so I'm very upset and very worried for the amount of people who right now are about to lose their jobs. Employers' patience have now run thin – which you can understand – but my heart is breaking for the people that are about to lose their jobs. We have been saying for the past year, the people that I've alongside, that this is going to happen. One of the reasons that has held people back is that they have not received medical assessments. Some people haven't had any medical assessment in 15 months. So these are people walking around with actual physical problems that have not had that assessment: now, if they had had assessment earlier, they could have had treatments that help their symptoms. Nobody's claiming to cure it. But we do know that with certain symptoms and certain treatments, their functioning can improve so quickly. I'm dismayed that so many people have not had this assessment. This has led to them being absent from work and not being able to function.

Michael MacLennan  

So what would be your message to employers?

Clare Rayner  

My message to employers is, I realise that you've all been in horrendously difficult situation as well. Listen to the individual, ask what you can do to help with their recovery. Now, it's quite a standard thing for us in occupational medicine to say to employees, it may actually help everybody if you were to fund the tests that were needed, or fund an appointment with a specialist because that way the person can access some early treatment. That's one thing that I think they should consider, and it's quite normal. The other thing is to say to them, what are you going to do if you do have to lose these people who are long-term sick [with Long Covid]? What are you going to do about replacing them? Because we don't have the workforce waiting to replace them. We already have skill shortages in the UK, we have done for ages. So who is going to replace your employee with 20 or 30 years experience? Because this is the age group most impacted. I would also say, what what can you do to help them start to come back? They do need a much more gradual return to work than than with other conditions.

Michael MacLennan  

What would be your advice to people who are worried about losing their jobs.

Clare Rayner  

It's so difficult because many people are self employed as well. And I think it would be raising that awareness of what the problems are the medical problems that need to be excluded, so that they have access to something simple, which says these are the types of problems you get. Take this to your GP. I've just been involved in publishing what's called Adelphi consensus, so 37 doctors have scoured the literature for what we know so far. And for each of the types of problems that you can get with long COVID for instance, that autonomic problems, there are treatments that can help. So we have written some guidelines, and they are about to be published in the British Journal of going to practice and I would like to think they could think that through their GPS, as soon as they get the symptoms, really, you know, if you start with chest pain, you need some investigations, and get those things moving really as soon as possible. And then if they're in a union ask for their advice, or the employment working group that we have in the long COVID support. The other thing is peer support is just very, very helpful

Michael MacLennan  

In terms of the governmental level I guess you'd be looking for more support in terms of for people living with long COVID right now?

Clare Rayner  

Absolutely. It's what we've been saying for the past year, early medical assessment – you can see the theme! – early medical assessment, these are the checklist of things you need to ensure that doctors look for, you need to understand the impact of being off work for more than a few weeks and see that as a red flag to help these people. And there are going to be some workers who need who will have acquired this in the course of work. And they will, at some point, we do some compensation some of those people so that it has to be looked at as an occupational disease in certain circumstances.

Michael MacLennan  

Finally, I was wondering, in terms of things that you've taken away from this, and things that we can learn for the next time around.

Clare Rayner  

Because, you know, I've been so in, it's actually been very hard to do that kind of step back. I think it's an opportunity to really listen to what people are experiencing, I think the healthcare professionals need to listen to patients, they will tell you their story, and they will help come up with solutions. I think we need to build in some flexibility as a society, in the workplace. And by that, I mean, if somebody is ill just having that flexibility to adjust a little bit, you know, sort of a bit of push-pull to help over that hump of getting back in. So I think it's an opportunity for some of those practices to coming to play.

Michael MacLennan  

Personally, what are you hoping to do across the rest of this year?

Clare Rayner  

I really, really want to get back to my art. I really, I mean, I'll still carry on doing all those these things. But more than anything I want, I need to get on top of my art and be able to come back. That's my relaxation.