CORONAVIRUS – VIDEO SIX
Video Q & A
This video was recorded on 28th July 2020 and answers some questions put to us by sarcoidosis patients about returning to work after shielding.
You can find the latest UK Government information here.
Henry: Hi it’s Henry Shelford, Chairperson of SarcoidosisUK. Really excited to have Dr Robina Coker here today to answer everyone’s question on returning to work and shielding. Hello Robina!
Robina: Hello Henry
Henry: It’s wonderful to see you and thank you as ever for your time. You and I both sporting very nice new haircuts
Henry: I think we’ve both been able to go out a bit bizarre. hairdressers are part of the removal of lockdown and the changes we’re all seeing which is obviously very important. We’ve had a lot of questions coming in on this and to everyone who sent them in, we’ve tried to consolidate as many as we can so if your specific question is asked we’ll try give you a name check and you should see your question in there. So look we’re really lucky to have Robina here, she is a consultant and honorary senior lecturer in respiratory medicine at Hammersmith hospital and imperial college of London. She is not only a doctor, she is a doctor twice over, she has a PHD in the development of lung fibrosis and she’s clinical director of the north west London NIHR clinical research network, one of 15 CRN’s in the country. This is an annual budget of over 14 million and supports clinical trials across north west London. So we could not have a better person, it’s fantastic that we’ve got her so thank you again.
Robina: You’re welcome
Henry: Right we’re ready for the start of the questions. We’ve started with keeping them initially quite generic in terms of the questions which were broader coming in from everyone and then they get much more specific about people’s individual situations, which I think to give people a heads up Robina is not a specialist in your workplace but I think she’ll try her best. We’ve had a lot of questions about people’s own or their partners’ workplace. We’ve had Claire who works in a hospice, Lisa as a theatre nurse, Shelly a lecturer, Tink in education, and Elaine’s partner works in a building site, and many more but that gives you an idea of the variety. And so the first main question is what should people do to stay safe?
Robina: Yes, well it’s a very important question and for people particularly who’ve been shielding of course it can be quite a change to go out and about, and many people may not have been aware of some of the changes that have been taking place in workplaces and in public settings. The first thing I think we need to remember is the key message is that washing your hands thoroughly and frequently remain, about maintaining social distancing which in this country has been set at 2 metres or a 1 metre plus, so if you can’t maintain that level of social distancing you should be wearing a mask. Wearing masks in indoor spaces is really important, those are the very obvious things that we can all do and should continue to do throughout regardless. Now there are a few exceptions obviously but those are the main messages and hand washing is absolutely key, and not touching your face, we’ve talked about that in previous videos. So those are the general things, I think the next thing to do is it’s very useful to go and have a look at the www.gov.uk website which has a lot of information on COVID-19, and has advice for employers in 14 different work settings, about how they can try and make their workplaces COVID secure. And I think if you start with that, you can have an idea of what sort of measures are being considered and what sort of things employers are being expected to do. I would say to anybody that is returning to work, that the employer and the workplace should have done a risk assessment, they should have shared that risk assessment and there should have been consultations with employees and all unions depending on the size of the employer. and the setting. Those things should have been done, and I think depending on all that, you’re in a very good position if you go back with the recommendations from the UK government and say well now look what’s been happening while I’ve been away and what measures have you put in place? And then depending on the size of your organisation, I think everybody should have a risk assessment and I certainly think anybody who’s working in the NHS should be having an occupational health assessment to judge your individual risk and what precautions can be put in place. Now obviously for some people, they can be re-deployed to a lower risk setting and that will depend on their individual circumstances, and we’ll come onto those later as you said. But certainly I think in an early conversation with the employer, some early questions about what are the measures that you have put in place as my right to keep people safe and if necessary a conversation with your union or your colleagues about what’s happening. Some of your colleagues may have already returned to work or been working throughout and could have some information which you may find useful. You may find it less daunting to approach your employer if you’re doing it as part of a group of their employees just having that conversation. And I think most employers are trying very hard to do the right thing by their staff because they don’t want outbreaks and they don;’;t want people off sick. We’ve seen that where people work in very crowded facilities with limited washroom facilities and so on, that is very much a predisposition to outbreaks, that’s probably no surprise to anyone, and those employers are being investigated. now although the government is not going to be able to visit every single workplace, there’s undoubtedly a level of inspection, so outbreaks will flag up the attention of local public health bodies and so on.
Henry: That’s a fantastic introduction to what everyone needs to do and you’ve done a fantastic job of jumping ahead and answering one of the questions that’s going to come later, but we’ll answer it in a bit more detail as well. Onto some specifics, so Claire works in a children’s hospice as a clinical support worker and specifically asked how far apart should she stay from others? And though she doesn’t specify, I think the ‘others’ include other staff members and of course patients, and that’s clearly something you can talk about what you’re doing in your role.
Robina: Well the guidance is 2 metres or 1 metre plus, so if you can’t stay within 2 metres apart then you’re going to need to wear a mask and remember again to wash your hands very frequently. There is again advice on the www.gov.uk website about chi8ldrens facilities particularly working with children and working with children in social care settings. I would expect those settings to have put as many measures in place as possible and to be sympathetic to someone who also has health needs themselves. Again it’s about that conversation with your line manager about particular circumstances.
Henry: Now one of the things I’m hearing from your answer is that an inference that there isn’t a perfect
Robina: Yes, I think that’s right. When I was thinking about this earlier I think there are probably 4 things you need to consider. So you need to consider your own health and where you are with your health. Is your condition very well controlled, or has it flared recently, is it in the process of flaring? I think you need to consider your medication, because some medication may put you at increased risk of infection. Then I think you need to consider the environment you’re returning to, so that will probably be very different if you are for instance a landscape gardeners working from home 3 days a week making designs and then meeting customers outdoors socially distanced 2 days a week for instance, that will be very different from working indoors in a health care setting where you’ve got very vulnerable clients that you’re looking after and having to provide intimate care for, so that’s completely different. So I think you need to look at the environment, and I think that also an individual’s approach to risk and that is something that we all have to do and have had to do for all our lives on a regular basis, but we generally don’t think about it too much. So we have to make the decision whether we’re going to fly on a plane, or whether we’re going to go on holidays to, for instance, a tropical climate or we’re going to drive a car or we’re going to cross the road,. or we’re going to take up an extreme sport or a less extreme sport, horse riding for instance, if you want to do bungee jumping for charity, some people do!
Henry: And parachuting, think about it you’re flying through the air like you couldn’t be more outdoors!
Roibiner: That’s fine for COVID!
Henry: Well you have to be on your own
Robina: Mind you there are other risks attached, so I think we all have different approaches to risk, and we all know people who are very risk averse and other who are much more relaxed. The difficulty is with this virus, we can’t completely eliminate risk, I mean we’ve seen this very forcefully highlighted in the last few days with the government changes to holidays abroad, particularly in Spain, that at one point he risk looks to be acceptable and the next minute it doesn’t and the situation changes very quickly, so I don’t think it’s possible to eliminate risk, I think we all need to decide how to manage the risk for ourselves so that we are comfortable. And to some extent, and I do think it’s very important that these conversations with employers take place, and that employers are supportive and if your employer is not supportive you get additional support as I say either from colleagues or a union, or a friend, but at the end of the day you also have to make a decision about your long term financial situation and your future, and that is something that nobody else can do for you. Or are you someone, I had a longstanding patient of mine a few weeks ago say to me “Dr Coker if I don’t return to work I will go mad, my mental health will not support this, my employers been fantastic they’ve put in every possible measure they can and I want to go because I need to see people, I need to have contact with people, it’s driving me completely insane being indoors all the time and not seeing anyone expect from on Zoom. Now they made that decision because they decided that was what they needed to do for their own mental health, and I think that’s perfectly right, we have to have adult conversations about what’s right for us, some people are much more introverted and have actually enjoyed lockdown, and have learnt a new skill, but not everybody does, some of us are more begarious than others.
Henry: I’m very jealous of those that have had lots of time and learnt a new skill, I have a 1 year old and a 2 year old at home, it’s been busy. We have an office at SarcoidosisUK, we’ve been mostly working from home and then some working in the office, we’ve seen more working in the office through recent weeks. And I think that balance is probably going to be our permanent, our new norm. Now I’m going to jump to some questions, I want to quickly talk about Claire, Claire talked about being in a clinical setting, and this 2 metre/1 metre plus apart, and I think the bit that needed to be talked about was if you are in a clinical setting then you may be touching people, and your employer be it the NHS or someone else needs to have done a risk assessment on that and put measures in place but there isn’t a no you mustn’t touch anyone rule, there must be a risk assessment in place and proper procedures put in place.
Robina: And yes most employers in that situation would have put in place that you need to wear a mask, usually a surgical mask in a healthcare setting, you’ll need to wear a disposable apron and you’ll need to wear disposable gloves and they will all be readily available.
Henry: Yes, talking on masks it would be completely remis of me if I was not to point out these fantastic SarcoidosisUK masks with our branding on them, it says ‘I support SarcoidosisUK’ and for those that are able to wear a mask they are available on our shop and essentially provides a donation for us at the same time, For those that can’t wear a mask, and I think this is an important one for us to cover, we have a badge that says ‘I can’t wear a mask I have a lung condition’ and we have 2 other badges, one is ‘My cough is not contagious, its sarcoidosis not coronavirus’ and we have another which says ‘I have a lung condition be extra careful around me’. Going back to the workplace, having a statement there saying look, I think we’ve all seen people who are a bit careless with themselves, and in doing so can be a bit careless around other people, it helps draw that line saying you need to be careful. They’re available on the shop and if you’re watching and can’t afford them, 2 badges are £2.50 and 2 masks are £7.50, we’re a charity so we will send them to you for free. If you’d like them or like to donate through buying them that would be great, particularly as we can’t do events right now. Right, the advert over I’m going to jump to Tink who asked, and I think you’ve covered this quite a lot, Tink emailed in, she said ‘I’ll be returning to work next week. At present, no risk assessment has been completed. I work in education and we are being encouraged to wear masks’ I assume this kind of mask not medical masks, ‘and this causes concern once all the kids return in August. How do I ensure I’m safe?’ And we had another similar one from Craig saying my workplace is refusing to implement social distancing, what can I do?’
Robina: As I say I think that’s very difficult, and I think maybe some education establishments have not got their risk assessments processed and finalised because they still think they’ve got a bit of time, so we’ve got 4 weeks before September when schools have to go back to is may be a question of time, it may well; be if they’re struggling with their facilities to work it out because it is quite a challenge.
Henry: Though schools have been back, they were open for key workers although with fewer people.
Robina: Absolutely, it was very reduced numbers so I think that may be the case, maybe worth finding out, I assume there’s either occupational health or an HR department that could also answer queries. Obviously there are some environments where socially distancing is extremely difficult, particularly with small children, the government advice says that employers should try to maintain small groups and keep those groups together so that there isn’t a lot of moving around of individuals or one staff individual from group to group so those groups are kept together almost like support bubbles during the day. Of course if anybody does fall ill, it does facilitate contact tracing very inconsiderably. But I would encourage people to talk to their other colleagues, and say this sI what I’ve heard, what’s your understanding>and should we be speaking to somebody> Because I o think there is some power and authority in speaking as a team and saying how can we help, will allow me to have some input into this but and what is it that’s needed.
Henry: Now you obviously have the medical answers and I wanted to have some of the other kinds of answers, to make things clear so all employers with over 5 full time staff or full time equivalents, so if there’s enough part time staff to equal 5, must have a written risk assessment. And below that they can have a verbal, discussed one but above that it must be written and in these scenarios it seems clear that they’re talking about that with Craig talking about refusing social distancing. Where individuals are flouting the rules you can call the police on their local number rather than the emergency number. Where businesses are flouting the rules you’ve got 2 groups you can contact; you can contact your local council, I’ve look here and they have a specialist webpage and I assume setup for that, you can also contact the Health and Safety Executive, who also have a specialist area setup for that and they do have inspectors and the ability to shut down businesses as well, so those are 2 groups you can definitively talk to. If you’re not getting anywhere with your personal direct conversation, or with lots of redundancies around you could sometimes feel like if you’re the one sticking your head above the power pit you’re putting yourself at risk, you’re the difficult one, now obviously it shouldn’t happen but you may feel it,. so being able to talk to one of these organisations so they approach without reference to you and bring that forward for you, I think that can be a very useful mechanism.
Robina: That’s extremely helpful Henry, but I do also think it may be useful to do it as a group because if a number of you say we’re not happy they can fight you much harder to think that it’s one person agitating who’s not happy and they’re probably more likely to take it seriously,. Although I’m not suggesting an individual shouldn’t if that’s all they can do, absolutely.
Henry: I think it’s all good points. I’m going to go back into some of the more general questions, there’s only 1 more actually. Scott told us he works in an office and asks ‘Should I still work from home as much as possible?’
Robina: So the government advice actually despite the move to try and reopen the economy was fully still that if you can work from home you should. It’s a slightly mixed message
Henry: It is, but don’t you think hat for us, for people shielding, it’s fine if you’re young and you’re healthy the difference is not so big for you but for someone shielding it can add that risk
Robina: I think it makes sense for people to work from home if they can or as much as they can providing they can do their job from home of course and that leaves a need for agreement with your employer and your line manager about how you’re going to work from home, what you’re going to do and what your arrangements are for supervision support ands so on. And it may well be that your employer will want you to come in one or two days a week because there may be things that you can’t do physically or are needed to take part in certain activities on site that are essential. But it makes sense for people to work from home not only for people who are vulnerable but actually for everyone else who is trying to avoid overcrowd non public transport, crowded roads, there are a lot of people who are driving and so on, so I think it’s actually not unreasonable at all to try and work from home where possible but I know that many employers would like to see their employees some of the time.
Henry: Yes, it is very nice seeing Leo, he’s helping with the video, thank you Leo and thank you for all the good work you’re doing. So you’ve been talking a lot about the need for us to talk with our employer, and so Liam asked a really great question. I work in a factory which has measures in place: face masks, daily temperature checks, social distancing, and I’ve been asked to return to work in mid- august where a special risk assessment will be carried out for me. It does sound so far very good. Is there anything special extra that I should be looking for? So when he has that risk assessment, I think that’s a really great question particularly for those people who maybe are following this and going to be going to their employer and saying I would like a special frisk assessment, what are the special things they should be looking for?
Robina: That’s a really great question, the first thing I would say is have on your phone, assuming you have a smartphone, have your list of medications, so scan that and upload, have if you can a letter from your clinic, your consultant, respiratory specialist, your sarcoidosis specialist, or something from your GOP just outlining your condition, I think it doesn’t have to be a special letter but just as I say your latest clinic letter or something that’s been written that summarises your condition. You should for some time now be getting copies of your clinic letters. So I think it’s very good practise to have the latest last 2 or 3 or most informative on your phone so that you can show them to anyone that wants to see them and so I think that’s the first thing, and that will give your employer the specific information about you which needs to be taken into account when doing the risk assessment.
Henry: And if you want to convey anything, if the letter just says you’ve got sarcoidosis, we have trouble, some doctors aren’t that familiar with sarcoidosis, so employers aren’t going to know
Robina: no it’s going to be difficult to get someone to write a specific letter at the moment but you may have some idea from the letter whether your condition is well controlled, what your symptoms are, what medication you are on, are you still requiring a lot of immunosuppression, those sorts of things, And the letter will usually say something like ‘appears well, symptoms well controlled, we will continue with maintenance treatment or struggling,think we need to increase treatment, so I’d expect a letter should have some indication of where people are. Possibly some lung function, and you will have many organisations, the large ones will have doctors in occupational health, or have access to occupational health physician who will then be able to review that or an occupation health nurse who will then be able to contact your sarcoidosis specialist, But I think having some information is good and helps you to be prepared, the other thing I would do is go to www.gov.uk website, have a look at what the government is recommending for your type of workplace, and look at that and think does that well does that meet my needs, so I think I need more. for instance, if I’m sitting in a shared office for long periods of time do I need sneeze guards or whatever, that’s just an example
Henry: I think that advice to look at the government website is very important and useful. So your advice is take a letter so they know a bit more about it, look through the government advice on the specifics on his industry and then in terms of the risk assessment make sure that it does consider sarcoidosis properly. so someone does actually understand and doesn’t just do something very general.
Robina: Yes I think that’s right Henry, and the other of course is that SarcoidosisUK produced some very good leaflets on sarcoidosis for the employer
Henry: You’re very good
Robina: So I were if it were me would go on those of those as well or even send it in with a brief note or email it beforehand and say I’m looking forward to our meeting, thank you very much for offering it, this is just some information from SarcoidosisUK that you might find helpful when we do my risk assessment.
Henry: I already adore and I adore you even more for mentioning it. We have our leaflets and we worked very hard on them, usually with the involvement of specialists and I know you were involved too in some of them, they’re available to download as a PDF on the website and we can post them to you as well. On the other side of the coin, Bafine asked the question I think for lots of people who are in remission which is ‘My sarcoidosis is dormant and I’ve been asked by work to return in September. What discussions should they have with their employer|?
Robina: This is of course a slightly evidenced free zone, if your sarcoidosis is dormant, and by that I assume you mean that you’re well and you’re not taking medication…
Henry: Yeah I took that to mean in remission
Robina: I would hope your risk would be relatively low. I suppose I would be a little more concerned if you had residual lung disease for instance, so if you had residual scarring of the lungs, there probably is an increased risk, we don’t know what that is. It’s going to mean, I don’t think you’d be at greater risk of catching infection but I think it could mean that if you do get it the effects could be more severe as you already have some damage to the lungs. We’ve talked about this before in previous videos, so there isn’t really good evidence, but I think it would depend as I say on where you were on that spectrum, so do you have a chest x-ray is that to all intents and purposes that is normal , in which case I would hope your risk would be low, or do you have some lung damage, in which case I think your risk is a little higher, but not as high as somebody who’s got a very active disease who requires a lot of immunosuppression. Because those people who have taken a lot of immunosuppression of catching the disease and then possibly not responding to it as well, if you’re not taking any immunosuppression you shouldn’t be at greater risk, but it may be that if you have scarring of the lungs you’re at a disadvantage if you do catch it.
Henry: That brings us very well to a question from Tanya, she said ‘my employer has asked me to have a chest x-ray to make sure that the sarcoid in my lungs is not active or worsened. Should this be something we should all have?
Robina: Well I think your employer is being quite careful, and I definitely think it’s a good idea if they’re recommended. I think it’s so tricky, because saying everybody should have a chest-x ray, if they’re feeling well and they’ve not noticed any change in symptoms, shouldn’t be necessary but it may be that there is some doubt, and if that employer wants to organise it, great.
Henry: That was a cunning answer, if it’s a private or not inflicting the costs on the NHS then you’re going for gold, otherwise only if you feel that there has been change in your lungs and if you feel there has been change in your breathing then its advisable to do anyway because it might be symptomatic of a change in your sarcoidosis.
Robina|: Yes I mean everybody should be aware that our chest x-ray and CT scanning resources are really quite limited and so we do need to be quite careful about how we use those resources.
Henry: Yeah and I think although we’re coming out of shielding there are as=till a lot of very ill people in hospitals and these resources remain in intensive use, I think that’s a very good point. We had a lot of questions from teachers, and I think it expresses the double challenge in that sector with the deadline coming up very fast of schools coming back, and the fact that we’re talking about risk assessments and there just doesn’t seem to be crystal clear guidance, especially since it is very complicated, you compare it to Scotland where they’re saying anyone under the age of 12 as I understand you don’t need to nsicla distance, which certainly is one of the reasons we haven’t been out with our kids age 1 and 2, is they do not know how to social distance, they have no idea, no plans, so I think it is very complicated. Haley’s question was a very good summary, ‘I’m a reception class teacher for 4 year olds. I’ve been shielding since March, I’ve had multi-symptom sarcoidosis since 2016’ – and we know that multi-symptom sarcoidosis carries much more significant risk – ‘I am now on 3mg of prednisolone a day, my last appointment showed no active sarcoidosis’. Congrats Haley, and her question is an absolute killer, ‘Can a classroom be ever considered COVID secure?’ That nails it as a question.
Robina: Absolutely, it’s a very good question, and it’s a very difficult one. I think education, particularly with young children, who just can’t socially distance, it’s one of the most challenging settings.
Henry: The reason I’m looking so fit right now, obviously I’m always very fit, is that I have to run after my children who are just running towards the nearest person, the more vulnerable the better, they’re just charging in that general direction. I have to catch them before they get within 2 metres!
Robina: I think it’s very challenging, I think there are a lot of school that are working really hard on it, they’re trying to keep class sizes small, they’re trying to keep groups together as I said, they’re trying to avoid, sort of stagger groups and breaks, lunchtimes, and so on. But clearly you’re never going to be able to eliminate that risk because you don’t have control over what happens to those individuals when they leave the classroom. So I think it’s a really tricky one.
Henry: Where’s the data, so obviously Scotland has made a different decision to England., Do you know what the data is saying about children and their ability to transmit the disease?
Robina: Not specifically, I mean what I should say is that obviously the younger children are at much less risk, and so that is a key factor I think in that advice. So it’s not so much the children that are at risk, there are obviously rare exceptions, but they make the news because they are rare, generally children don’t get disease badly, and it’s probably going to be the staff at greater risk. I think the other thing to really think about is how you try and ensure that children with symptoms if they have symptoms or if anyone in their nhosueolf has sorption doesn’t come to school and there will be employers that are implementing temperature checks and questionnaires, and you’d hope that everyone behaves responsibly of course you can’t actually enforce or police that, and that’s the tricky bit of it.
Henry: I think a part of the answer is that, I’m answering Haley’s question in that we touched on it earlier, there is no thing as 100% COVID secure, there is a balance of risk and we’re learning more all the time. And actually talking on that balance of risk something very fundamental has changed, previously we were asked to isolate, and because we needed to make sure the NHS didn’t get overwhelmed, that was collectively that was a part of what we were doing, The NHS now has the capacity we don’t think there’s that risk right now, although as we can see from sudden shutdowns in Spain and second peaks in an other countries we need to watch the numbers and change things if we need to. What that means is that that risk choice has returned to us as individuals and we have to start to try and make our own decisions with the benefit of a risk assessment and working with employers and colleagues.
Robina: The other thing we haven’t talked much about is testing.
Henry: We have no questions on that so you’re free, go!
Robina: So there is for instance an NIHR COVID-19 app, so it’s run through the NIHR biomedical research centre at Kings, and that allows people to log on daily and report any symptoms. It also gives access to research studies that are looking at prevalence both of active infection and antibody response in communities. It also gives a lot of data, so if you take part in it, if you enter your data daily, you get a chance to see the UK prevalence and data and incidents data, so you can see where cases are clustered and where there might be cases near you. And you may be offered the chance to enrol in a research study, which might be quite straightforward, it might just mean being sent a swab testing kit at home every few weeks or being asked to go to a centre for a blood test. It’s just something to think about if you’re keen to access more testing, because taking part in research is one way to do that and there are quite a lot of research studies in community settings going on, so just one thing to consider.
Henry: And I think it’s important that more people who have sarcoidosis do get involved with research. It really helps everyone, we’re a rare disease so going and getting involved is a big deal and very important. We will tweet out and put on Facebook the links to that research. Now do you have any links with it because obviously it’s NIHR?
Robina: Yes I’ll share it with you later if that’s alright.
Henry: That’s great but I actually meant you personally have you got any involvement with that piece of research?
Robina: So I’m taking part in the COVID-19 app, and through that I have signed up to 2 research studies now, I’ve expressed interest in 2 and one of them I’ve already been enrolled in and am being tested. But I’m a volunteer participant as well, and most of my colleagues know we’re all trying to take part in research whether that’s vaccine studies or whatever.
Henry: Yeah I signed up for one I actually didn’t know about more so I will sign up for more. It is actually incredibly important, we have very few data points on people with sarcoidosis because of its rarity so it is very important, so everyone watching that is a great thing to do. If we’re doing testing the other thing to say is if you do feel like you’ve got symptoms the testing is now very fast, so you can get tested I think the same day or the next day and result are generally within 24 hours and that’s very important in being able to get you the treatment you may need or get you the knowledge so you know you and everyone around you needs to self isolate. Have you been tested for COVID?
Robina: Yes I’ve had 3 swab tests so far and 2 antibody tests.
Henry: Ah okay and what have they said?
Robina: Well so far they’ve all been negative
Henry: That’s obviously a good thing
Robina: Yes, but I think the more knowledge we have the better. Another important thing to flag up is that the swab test has a 20% negative rate
Henry: What do you mean by that?
Robina: That 20% of people who have COVID who are tested will come out swab negative.
Robina: And the antibody tests aren’t perfect either, so there is no perfect test, there can’t be by definition. So people just need to understand that, and be realistic about what the tests can do. No test is perfect, and I think anybody with sarcoidosis knows that because you have a lot of tests and there’s a lot of umming and ahhing in the clinic about what tests mean. It’s just the same for COVID – if you get a straight forward negative test that’s easy, but if you get a negative test and you’re still symptomatic you might need a repeat test and so on, just to be aware of that.
Henry: I think that’s an important point. So continuing on to the teachers questions, we got a good few so someone anonymously (they didn’t want to say their name) and Chris and Rachel all ask a similar question which was concerns on returning to work and getting children, especially special needs children, to socially isolate, and Rachel’s question sums it up well: ‘What should teachers do regarding returning to work? We’re expected to move around the classroom, I’m worried about the risk to my health considering I’m on steroids and suffer with fatigue’, and the question is different from the one before and it’s ‘should I seek a different role that I can do from home? This is people considering changing their career choice because of the concerns.
Robina: I know and I’ve already had a slightly similar discussion with someone else, one of my patients, about this. It is really difficult because you’re going to have close contact with people. There may be PPE, you may have to wear a mask, should you be wearing aprons and gloves, what is your employer providing for you and how long do you really want to keep that up? And I think this is so difficult and this is where it comes down to really weighing up the risks to you not only health wise which is vital but also economically. Because you may think about seeking a different role, but is there a role available? Can your employer provide a role, or are you going to have to change? And I think that’s going to be quite difficult in the economic environment that we find ourselves in. We’re looking at rising unemployment for obvious reasons, I don’t think it’s going to be straightforward to get new jobs out there. If there are jobs, you know there’s a lot of cleaning jobs that are needed, there’s a lot of fruit picking, vegetable picking jobs that are needed, there’s IT jobs, but I’m not sure that somebody who’s been working in an educational setting is necessarily either going to want to do those jobs, be able to or have the skills. So I don’t feel able to give individual advice obviously, and I think it’s something that has to be weighed up really carefully, with you, your family, and thinking about employment prospects and your financial security. And so those circumstances are going to be different for every single person, and I know that sounds a little challenging, but I think that’s the reality of the situation we find ourselves in.
Henry: We’re not in a time of easy answers here
Robina: No we’re not, my team will not allow me to use the word unprecedented because they’re so fed up with it, so I’m not allowed to use it so I won’t say it again but that is the truth
Henry: You’ve edged one in, edged in an unprecedented
Robina: We haven’t seen anything like this for 100 years and 100 years ago our society was in a very different situation.
Henry: Absolutely, now you’ll be glad to hear that all our questions are not from teachers, we have a wide variety as I touched on earlier. So Nita is a dentist, and she asked about her workplace and I thought it was very interesting. So a dentist clearly will have advice from her association, her dental body. ‘I am a dentist diagnosed with sarcoidosis and I’m concerned about wearing a mask and PPE and breathing. I would like your advice about whether to resume clinical duties or not’.
Robina: Sure, well again it’s very difficult isn’t it because if you’re a dentist then clinical duties is a really big part of your vocation, what you do.
Henry: My understanding is the ability for droplets to be created is particularly strong in dentistry
Robina: Yeah, so you can do some work remotely you can have telephone consultations with the patients, you can prescribe antibiotics, but at the end of the day that’s not going to sort them out long term. It’s where you’re doing the drilling and the scaling and the polishing and the fillings and all those things that you’re basically going to be doing an aerosol generating procedure and you’re going to have to wear full PPE. If you work in large dental practices that may already have been procured and be available. But you’re absolutely it is uncomfortable to wear, it’s hot, it’s quite tight, there’s doctors up and down the country and all over the world have discovered it’s quite cumbersome. You do need regular breaks, so certainly it depends on your air conditioning and where you work, how well they can keep the environment cool but if it gets hot it can get very uncomfortable. I don’t think it will impede anybody’s breathing, but there’s no doubt it’s claustrophobic so there’s a sensation of possibly restricting breathing and that is quite tricky to deal with. The first thing you need to do is make sure that you work, your employer or whoever it is, your colleagues, have procured the PPE and it is available and what is there, and it may be worth you having some practise runs. Certainly in the NHS we have PPE buddies, so everybody works with somebody else who helps them put on the PPE and then helps them take it off safely. That’s just as much a concern, not so much of the breathing challenges that you’ve raised, but just for the infection challenges because if you rip off all of your PPE at once at the end of the procedure and you don’t do it correctly and you don’t wash your hands or use hand sanitiser at the right points you may well end up contaminating yourself and everyone else and everything near to the waste bins. So it’s quite a procedure putting on and taking off the PPE it does need to be done correctly and it is worth watching videos and it’s worth having sort of assistance so help from an assistance who can help put it on and off, help secure anything behind that needs to be secured like ties, and then help you take it off and remind you what to take off first, when to use hand sanitiser that can all be useful. The other thing I’d say is you do need breaks when you’re wearing PPE, simply for it getting very claustrophobic, but my understanding is that in most settings and it will vary from workplace to workplace, the room where you’ve done the from of aerosol generation procedure, or the AGP, will not only need to be physically cleaned, but there’ll need to be a certain number of air changes for the next patient coming in. And that will depend on how efficient your ventilation and air extraction is. So that should give you a natural break and you won’t find that you will be working at the same rate or that your capacity to do procedures is as great as it was before, nothing like. So that actually may give you a bit more rest than you think.
Henry: Do you have a different buddie every time you do your PPE or is it the same each time?
Robina: So where I will need to do aerosol generating procedures is in the endoscopy suite I’m doing bronchoscopies and they are set up with a nurse, might be a different nurse each day, but there will be a nurse who’s trained to support in the donning and the doffing, the technical terms.
Henry: It sounds like something from the 18th century
Robina: It does yes!
Henry: We had a comment online saying we are providing badges. I can’t wear a mask but dentists absolutely have to wear FFP3 for many hours. I think that’s a fair point, there’s only so much we can do with our badges but it is some profession I think we’ve talked about. And she does say she has training in donning and doffing, thank you Justine. On the masks and the pressure, the challenge it gives to breathing – I just did a bad COVID touching my face – if you’ve already got fibrosis, you’ve got damage in your lungs, is there an additional pressure with your breathing when wearing a mask and if so can that in any way cause damage to you?
Robina: No it shouldn’t cause any damage to you but it is claustrophobic
Henry: So is the feeling not an actual breathing part?
Robina: You’re not going to be exercising, nobody’s going to put you on an exercise bike or ask you to cycle uphill while you’re wearing it. What I would say is I think it’s a really good idea to practice and see how you get on. You can take a clean mask home if you’re allowed to do that.
Henry: And you’re talking particularly about the higher medical level masks which are much more claustrophobic than the very fine cotton ones we have for sale in the shop.
Robina: Yes they’re very nice and I don’t think anybody could feel claustrophobic wearing one of those Henry
Henry: We’ve had lots of very very nice comments about them which has been very kind. I’ve got a lovely question from Cathy which I can’t resist doing, we’ve still got a few more don’t you worry, but I can’t resist putting this in. ‘My husband is in the army, he works in London travelling home to Wales periodically. I’m on immunosuppressants and steroids, is it low risk for him to sleep in the same bed when he comes home? It’s 5 months shielding and I need a cuddle!
Robina: yes, well this is about working out the balance of risks and benefits, I’m sure you do need a cuddle and actually that may be much more important than some risk from him working in London and coming to see you and you being immunosuppressed. We can’t eliminate physical risk but we also have to think about our mental health as well.
Henry: So she’s got a prescription from you for a cuddle
Robina: Yes but I can’t eliminate risk
Henry: Very good, that’s wonderful. We talked about this before and I want to cover it again, so Kate said she needs to use public transport to get to work. She wears a mask and avoids peak times when she can. Are there any other precautions she should take? And I know you take public transport so the better question I quite like is Robina what are you doing when you take public transport and what precautions are you taking?
Robina: Well actually I’m driving to work at the moment
Henry: Well you’ve just gone out of that
Robina: Well unfortunate, I have a parking permit at work but yes I’ve got colleagues who are using public transport
Henry: If you were to use public transport what would you do?
Robina: I would do exactly what you’re doing. Obviously wear a mask, you need to be really careful you need to put it on at home with clean hands, wash your hands first, you then need not touch it until you get to your destination and you can take it off, and then you need to take it off by the ear loops and not touch the front of it. You might need to dispose of it if it’s disposable in a suitable bin, or you need to put it in a clean plastic bag which you can then seal and take it home and wash it in the evening and you should bring a clean mask for your journey back. So that’s the masks, obviously try to touch as little as possible while you’re out and about in the underground, carry hand sanitiser with you and use it if you have touched surfaces, wash your hands when you get to work, wash your hands before you set out so frequent hand washing, try and sit as far apart from other people as you can. I don’t think, if it were me I would not be using my mobile phone on the tube because we know our mobile phones get very heavily contained, so if you’ve touched the surface and then you touch your mobile phone and then you use that phone later and put it to your ear you could contaminate all parts of you. And mobile phones are not necessarily very clean so I would avoid using your mobile phone. I would think about everything that you’re touching during that journey, careful where you pout your oyster card. These are only things that are hopefully pragmatic and common sense, no official no evidence but I think just reducing contact with everything, touching as little as possible, remembering not to touch your face, just the other things you could do.
Henry: And what about clothes like the clothes you’re wearing you’ve got a coat and you’re sitting on the seat?
Robina: Well again just think where you put your coat when you get to work, can you hang it up somewhere where it can be unobserved and out of the way for a few hours before you put it back on, those sorts of considerations. I think there’s a limit to what you can do, but those are things you can do.
Henry: We’ve had a lot of questions from those that have been shielding and are worried about members of their household, obviously Kate and her husband in the army is an example. Gary asked, ‘My partner, a care home nurse, and my daughter are returning to work. Should I increase distancing within my household? And in the same vein ‘my husband has lung and cardiac sarcoidosis on 10mg methotrexate and 7mg prednisolone’. Do our children have to go back to school and if so should my husband keep away from them?
Robina: That’s a very good question, I don’t think we really know the answer. Again there is an increased risk the more circulation there is, the more we move around the more people we meet, the greater risk. And I think it depends on what you can manage realistically in your household., If you think you can distance, that may be a safer option. But we’re in this I think for the long haul, at least for several more months if not more and it’s how you do that long term. And again it does probably go back a little bit as well to what I was talking about data. If you know the prevalence in your area, and I know there were some questions about this as well Henry, you will have a better idea of what the risk is where you are at the time, and actually are there very few cases, in which case the risk is probably lower, or are you in an area of high prevalence where you may need to be more careful. So this answer may need to be modified geographically and in time.
Henry: Yeah I think that is a very important point and you can get on a daily basis I think your council area COVID rate, and I think one of the things we need to recognise is the reason we are able to go back to work, that shielding is getting dropped as a formal thing, that lockdown is getting dropped as a formal thing, the amount of infection out in the populous is much lower so your changes of getting it are much lower, but it is here, we are in for the long haul, and for us to maintain a life we need to keep that number low. In terms of the shielding in the home, one of the things we do at home is you know the home is a safe space, as soon as you come in you wash your hands, I bicycle my wife takes the tube but she gets changed out of those clothes and into different clothes before she’ll come into the main rooms. So our interpretation, our balance, is to create the safe space of our home, and really be very careful with how we’re letting things into that and always washing hands, always taking anything we think might carry high risk like clothes changing out of those. Because I think as you pointed out for mental health, for life, because I think this is a long time we need to be with our loved ones.
Robina: Absolutely, really important
Henry: We had a really good question from Kevin, and it allows me to get irate at the people who think they’re too inconsiderate to wear masks ion shops., You know it’s quite one thing to be careless with your own life and if you wish to do that then that’s on you, but to be careless with other people’s is not right. Kevin wrote: ‘ I work in a small shop and there are shields up for the staff. Some customers have been refusing to wear masks and staff have been told not to approach them. How can I keep myself safe in this situation, I’m thinking about not going back as I’m on a 4 week flare up with my steroids up’. So this is about how Kevin can keep himself safe and is considering not going back to his job because some people don’t want to wear masks. We have lots of people with a lung condition who can’t wear masks, but these are people who just don’t want to. Obviously as someone who goes to the shops they’re the people who really worry me because they are the more careless people, not only are they not wearing masks but they’re probably riskier people to be around. Okay over to you, what can Kevin do?
Robina: Yes that’s a very good question Kevin, very difficult. I guess if you’re serving customers you have a shield up, one option might be for you to wear a mask and a visor, a clear plastic visor, I think they’re probably quite good. You’ve got 2 levels of protection so you’ve got the aerosol droplet protection and immediate protection.
Henry: A nice summary is that, so basically you get to double up you wear a mask and a visor and hopefully that will give some benefit.
Robina: Because again I would just be a bit cautious about just not going back to work because at the moment I’m not sure what your employer is going to do with that.
Henry: That’s a good question because it becomes a refusal to work and it becomes very challenging and he said it’s a small shop we don’t know if it’s a small Tesco which’ll have the resources and a big HR department to be able to look at this or not. I have to say Kevin I’m very sorry that some people are doing that to you, putting you in that position, and I wish those people would look a bit harder at their actions and their actions on other people. We had a question on screen from Denise, we had a lot of questions on screen actually, Denise summed it up: ‘I’m worried about returning to work in the pub. Will a screen give enough protection or will I need to wear a mask as shielding?
Robina: I think if you’re in contact with somebody it’s face to face through a shield that should be enough. It’s if you’re moving around different areas where you’re not separated by a shield then it may be worth thinking about a mask.
Henry: Yeah and one of the things is that wearing a mask is something you can do at an individual discretion, and it will help and it’ll help with the people you’re serving and yourself in part, so therefore why not, but obviously they are after a long period slightly claustrophobic. And we’ve had a lot of questions on Facebook and before. I’ve got the grandparents to my kids and one that has an underlying condition and for my kids to be able to see their grandparents and for the grandparents to be able to see the kids. We had AlI ask what I needed to put in place when my stepdaughter came to stay. She’s 18, and at the same time we had Gillian she said my granddaughter is going back to dancing. Is it safe for me to see her and her 2 brothers?
Robina: I think inevitably the risk is greater the more people you meet. We’re in a slightly unenviable situation at the moment where we have to prioritise who we meet, how often and who we spend more time with. So I think for people for whom it’s essential that you meet, if they are out and about meeting other people they need to be careful doing that, and then of course it depends how much space you have at home. do you have more than one bathroom, can that person use that bathroom and you don’t use the same bathroom so you avoid those shared facilities. I’d hope they have their own room, and then it’s about socially distancing, it’s difficult isn’t it in a kitchen or a living room or a dining room or sitting area, that’s very difficult, there isn’t a right or wrong answer or a particular set of guidelines in think it you can give. You just have to think about it on a case b y case basis,. think about what the other person is doing and how that might affect you.
Henry: And I think the point you’re conveying as well suits not just all about seeing that person it’s about how you see that person, has everyone washed their hands, are they maintaining a sensible distance, are they not shouting and singing and doing things that are going to cause a lot of droplets. Because those are the things,m you can see someone and really reduce the risk profile of that, the risk will still be there, but you can see someone on a very high risk profile if you;re hugging sand singing and all the rest of things that are going to increase that droplet and increase that risk. And I know we’ve got you for a few more minutes, because I think you’ve got to go at 25 past, you’re as ever very generous with your time. So Gillian has written about vaccines
Henry: And obviously we’re very lean not to engage in the antI vax lobby and as vaccines have been shown to evoke an immune response, that is the definition of a vaccine people, to COVID-19 regarding antibodies and T cells, how will this possibly affect those on immunosuppressants and could it cause a sarcoid flare up? I think there is a fair question there because you are causing an infection and the vaccine is dependant on your immunosuppressant response,
Robina: It is a very good question, there’s a couple of things I’d like to say generally about vaccines. I think there’s always at the back of one’s mind a slight concern. or there could be for many people, about the speed of vaccine development, I mean it’s been quite incredible and a huge effort and that’s where I spose, pot sanitary concerns about vaccine safely in that regard, but actuall;y there are a number of reasons the vaccine research has taken off so quickly and is there has been outstanding international, commercial and academic partnerships and collaborations and financing, because of the will globally to find a solution to the dilemma we’re all in.
Henry: With regards to financing yes there’s a lot of things that money can just speed up. like for instance some of the research we’ve done, it’s taken 4 or 5 or 6 months just to go through some of the regulatory hurdles, which is not because they’re particularly time consuming it’s just because there aren’t many people reviewing them.
Robina: Yes so all of those things are making a huge difference, the science of course and the technology are advancing all the time at a very persistent speed so that’s another reason.
Henry: Also importantly people vaccines aren’t new, so it’s not like we’re creating something entirely new, we’re building a new building having built many buildings in the past, it’s not like we’re doing something completely brand new.
Robina: And the other reason they’ve advanced so quickly of course is because there’s been a real pool of volunteers who’ve been ready and willing and eager, indeed, to take part.
Henry: Okay I’ve signed up but you’ve actually done them
Robina: So you know that’s not always the case so I think that explains the speed of the vaccine development in terms of clinical trials which I think is really great. Now could the vaccine worsen your sarcoid? Well most vaccines do work by stimulating the immune system, because they’re training the immune system to recognise a foreign protein. And I’m not aware of any evidence that sarcoidosis patients are particularly vulnerable to flares of their condition after vaccination of any other kind. And I don’t think there should be a huge difference with the COVID-19 vaccination, I don’t think the data is there, but that is something that will be monitored very very closely. The advantage of taking part in the search is that you almost get private healthcare from the NHS because every possible side effect or symptom monitored and every possible change in somebody’s condition will be monitored very very closely.
Henry: Mal Beckly on Facebook has asked that question is it safe to sign up for vaccine trials?
Robina: No, if you sign up for vaccine trials and tell people you’ve got sarcoidosis they’re going to be very very careful about that. And that’s going to be part of the risk assessment whether you’re eligible. So I think that we don’t any evidence that they do, we don’t have any evidence that they don’t at the moment but vaccines have not been a particular problem generally for patients with sarcoidosis in the past
Henry: People with sarcoidosis are recommended to have the flu vaccine
Robina: And pneumovax. So yes there’s no evidence that it would, but I do recognise that the it’s a completely unknown entity so there’s always going to be a little bit of concern until we get more data
Henry: And they are looking to sign up a very large number of people to test on before it goes national. So I think to Gillian it’s not expected to affect those immunosuppressants or cause a sarcoid flare up and in fact is an important thing to reduce the risk of something much worse happening, fundamental to vaccines generally. We are 24 minutes past according to my clock and I know you’ve got to go at 25, so that gives me exactly a minute which is not enough time to say thank you. It’s been extremely insightful, a lot of very important answers I know we’ve answered I think the broad brush of everything that was asked, there’s a few on Facebook which might be a bit more specific which we didn’t quite get to but hopefully people have got the broad answers as well as could be given. Because as we all know it’s a changing circumstance, and unprecedented, no one told me I can’t say it! Thank you so much, it’s meant a lot you’ve done a lot of these and it’s meant a lot every single time and it’s helped a lot of people so thank you very much indeed. Thank you for everyone who’s watching, we wish you very well and thank you again.
Robina: Thank you Henry it’s always a pleasure
Henry: Great well bye and bye to everyone who’s joined us, thank you very much for joining us and being part of the SarcoidosisUK community. We are obviously here to help, we try put up as much information as we possibly can on the website, if you want to have personal conversations, through your donations were able to fund a nurses helpline, anyone can call and call length is unlimited in time so you can call for as long as you need, and they’re there to help and have obviously talked to so many people and have a really high level of expertise. If you come off that call thinking you want to call them again we can set that up as well so that’s not a problem. We’ve built out our information with the help of Robina and others on our Clinical Board, and as you know on the shop we’ve got the masks and the badges, badges show to people that you need more care around you or you can’t wear a mask for those who can wear them and we are starting to do virtual events, we’ve got some great events with people climbing Everest in their home going up and down their stairs and we’re signed up with credentials for the cycle race, for people to do the cycle at home as well and look out for more of those. It’s obviously incredibly important this would normally be our big fundraising time but it’s not there so if you’re able to support those people or if you’re able to donate there’s no more important time than now. We, like every other charity, are massively suffering but at the same time trying to do much more than we’ve ever done before and we are helping to help. So look, it’s again a thank you for being part of our community, thank you for joining Robina and thank you everyone, goodbye from me and I look forward to talking to you guys again soon!