Understanding the impact of long COVID

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hi good morning good afternoon to everybody joining us today uh my name is charlotteville i'm the senior project
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and program manager at cipd in the middle east joining you from dubai and i am delighted to be your host for this
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session and today we'll discuss the effects of long-term covet um
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and uh and how what employers and organizations can do to support the employees that are being affected by it
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before we get started and as some of you continue to join us i'll start with some housekeeping remarks
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um so the session is being recorded and it will be available on demand by the webinar section of the cipd uk website
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and share it on all of our social media so don't worry if you miss anything and the slides will also be made available
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for those who want them afterwards um don't forget if you are cipd member we do have a well-being support line for
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members in the uk and ireland with a free 24 7 helpline um staffed by
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qualified therapists and provided by our partner health assurance and we also have a helpline for those who have legal
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questions um with our partner croner who's actually joining us today we'll also be taking some questions live
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um and during the session we'd love for you to submit your questions your comments your thoughts if you agree you disagree with anything if yourself have
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had long covered or have put some measures in place that have been helpful for your employees we'd love to know so
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submit your questions through the q a button which we don't introduce anymore on zoom or in the chat box um and engage
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with the other participants to start with i think it'd be really helpful for us all to know where you're joining us
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from and what you're hoping to get from this webinar if you liked it as in the chat box
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so we've all heard of the term non-covered but what is it really according to
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recent government research in the uk um more than a third of those who contracted coronavirus reported
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sometimes lasting up to 12 weeks and even further for me there's worse debilitating fatigue and inability to
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focus my depression and a few months of improvements and setbacks but the challenge of long cover as we will see
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it today is that it may look different for different people um so what does the research really say
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about long curve it and its impact on working lives um how can our organizations and line managers play an
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active role in supporting employees who are grappling with the long-term effects um and what do we know about the
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organizations we're already responding on the ground and what have we learned from them um so to answer your questions today on
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this topic i'm joined by rachel who is the senior policy advisor at cipd
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and give us some word contacts about the topic dr steve warm and director of employee health at n packages among many
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other things they'll tell us dr joe yarker who's a chartered occupational psychologist and a senior lecturer at
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burbett university of london leslie macklin adventure of uk lancaster support group employment working group
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and matthew rainsko a legal manager at kroner who will not present today but who's here on
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call to answer any of the of your questions that might be related to the legal context around this
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complicated topic so rachel hi thank you for being here really nice to
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see you again and i'd like to start with you to give us some weird context around uh lancome if you will
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thanks so much charlotte and thanks so much everybody for tuning in to this webinar i think it's a really important
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one we're now over 18 months into this pandemic and the world's
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scientific and medical communities continue to respond to covered 19 as it
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continues to evolve there's new developments and evidence coming out about this disease all the
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time including around so called so long covered which has become an umbrella
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term for a long-term condition where people who've had kovac 19 the virus report
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ongoing symptoms for more than several weeks or even several months there's
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still an awful lot we don't know for sure about long coverage the nhs i just
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looked at the list of symptoms on its website and i mean it just went on and on chest pain tightness help heart
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palpitations brain fog depression anxiety rashes
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dizziness fatigue and it really shows how complex and
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chronic this disease can be i'm going to allow our health experts so glad that they're on this panel today to talk more
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about the illness itself its symptoms the impact and the effect on people's
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interaction with work as well and i think it's really important that we appreciate the lived experience of
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people who've had or still have long coverage and there's different evidence as well
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about how prevalent long covert is i've looked at different studies and they really vary in terms of what percentage
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of people carry on having symptoms but what's what's clear is that many people with
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persistent symptoms after kobig 19 are of working age and it's crucial that
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employers hr and managers are aware of the condition and we really raise understanding of it in
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the workplace next slide please christian thank you so and we are concerned at the
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cipd that there is a gap in knowledge and understanding and effective support for people experienced in long covid
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not all together surprising in one way because this is a new disease even the
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health and science communities are grappling with it and
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there is a real concern about job loss if people aren't effectively supported
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with it we're a member at the cipd of the council for work and health so really
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pleased that steve is here today as well because he's chair of the council for work and health and
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in june the council for work and health wrote to all the chief medical officers in
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england scotland wales wales and northern ireland voicing concern um
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about this issue and how it will affect people in the workplace because they don't you necessarily fit the more
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typical pattern of people coming back to work after being ill and i'll allow my
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colleagues on the panel to talk more about that and that letter that that letter did flag concern about people
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just falling out of the workforce completely if they're not supported properly but i've just
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repeated on the right hand side here um a description from the guide that we
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helped the society of occupational medicine develop there's a it's a return to work guide for recovering workers and
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i thought this really sort of highlighted to me um how this disease is complex it's
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different and it's unusual patterns relapses phases with new sometimes bizarre
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symptoms and i know my sister's experience very much experienced that
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but what we do know let's focus on what we do know about long covid we do know
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that recovery can be very slow and that the fluctuation of symptoms
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and new symptoms developing as well means that individuals often need to increase their activity very slowly
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over time if they aren't fit for work at all of course and some people will need to take time
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off work completely and be supported with a range of different work adjustments um
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but some principles of how organizations can best support people with this fluctuating chronic disease are still
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really really relevant and it's the kind of uh principles that we outline in in all our
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content particularly around absence policies i really want to highlight the importance
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of absence policies being flexible enough often they're not
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and they shouldn't unfairly penalize somebody who needs to take long term
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time off sick or sudden bouts of unexpected short-term
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absence as well and what we also know is that the symptoms can really affect people in
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very different ways even what the same symptom can affect somebody else in a really different way and so
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any support that's developed with a discussion uh with that person because it has to be
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on a case-by-case basis they have to be very tailored closely
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any adjustment to support that person and really running through all the
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support that's developed please do make the most of health professionals like occupational
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health this is a time when we really need if you've got that available to help understand the the condition um
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you don't have to be an expert in long coverage but it's working with occupational health with that individual
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trying to understand through that conversation how you can best support somebody and it goes without saying that
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compassion and understanding need to be called to anybody's approach in the workplace at an
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individual level next slide please have to say something about the
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importance of good people management because on a day-to-day basis we know how much responsibility there is now
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online managers to support people they'll be the key point of contact typically for that individual in their
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team if they're unwell on long-term sick or if they're coming back to work on some kind of basis and they really do
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act as a gateway of support but all the sort of policies and helpful changes and
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so on that that individual can access and so investing in your line managers um
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increasing their confidence their understanding and awareness about long and that compassion as well
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in terms of how they support people is really important we're not expecting managers to be
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medical experts they need to know what the limitations of their role is as well and when to refer to more expert sources
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of help but what is important is that they can have that empathy that compassion that
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concern that they will build a trust-based relationship with somebody
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so that conversation can really take place and i think it's important as well to
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flag that in terms of that return to work process if somebody is well enough to come back on some basis
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then it's not a one-off event because i think often it is seen as right now they're back and you know it's all back
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to normal but actually with long coved and with many other conditions as well but
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particularly with lancovid i think at the moment it is the start of a process and it has to be ongoing because then
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you could get a new more serious uh symptom uh coming that the person themselves don't expect so
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any review of um adjustments needs to take that on board
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final slide please just a flag we have developed a hub page
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and the url is at the bottom and we will be adding to this hub page we've got
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some resources already on there about long coverage and faqs and so on
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but we are developing new guidance based on research that we're sponsoring with
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dr joe yorker and affinity health at work uh it she'll talk more about it but
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uh we want that new guidance that we're producing to be evidence-based and really happy to be uh supporting jo with
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that work going forward so will be more coming up on that hub page thank you
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thank you rachel i think it's um we've really highlighted the importance of compassion and understanding which we've had
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we've known to become priorities throughout uh but also the very specific nature of long-term curving and the
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point of flexibility to which we'll get back and we'll talk about how employers can can really support people with these
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conditions and thank you to everybody who's shared their questions and concerns um to follow up on this i think um let's
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let's delve more into this what exactly is long covet what do we currently know about it even though
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there is ongoing research what what do we know so far and so i'd like to ask dr
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steve berman um to to enlighten us and share a few of your of your thoughts on
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the matter and research of course thank you charlotte and thanks for the opportunity to join this seminar um i'm
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not going to do death by powerpoint should be uh relieved to hear i'm just going to share a few thoughts with you
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and as rachel said in her introduction we've learned a lot in 18 months but there's still an awful lot we don't know
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and i think that's one of the things that we need to be very clear about i think the first thing to say about
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long covid is that actually there now seems to be a switch in terms of our concern about covid we're now uh
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since uh the vaccination became a game changer there is less chances of acute
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admission for those that have actually been double vaccinated but it's important to emphasize that the
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vaccination doesn't stop covid spreading about half the people that have been double vaccinated can still have covid
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and still transmit the disease although we know it does lower the chances of transmission
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and the important thing about long covid risk is that the impact of long covet
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doesn't necessarily in any way compare with the severity of
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your initial disease so you can actually have quite mild covid disease in fact you may not even know you've had covered
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disease and actually go on to develop quite significant symptoms in terms of this complex
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syndrome definition of long covert in the uk and i say in the uk because that's important
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um there are different definitions for long covered in different parts of the world but in the uk
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is symptoms that may be associated with covid lasting for more than 12 weeks
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since the initial infection and as rachel said in her introduction there's a huge variation in estimates of
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the numbers the numbers quite commonly quoted were one in 10 people with it may go on one
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in 25 people with it may go on you mentioned in your introduction chair one thing one in three people may have it
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part of the problem is um that actually there is under reporting and under testing now so people actually are
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actually just not actually um reporting the condition but we know we
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know that less than one in a hundred people will actually go and consult a a
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doctor or a specialist and we also know that the availability in the uk of specialist advice on loan covet is is is
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not uh is by far from universal there are only 88 specialist uh long
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clover clinics in in england at the moment and yet we know that for example
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over 150 000 healthcare workers healthcare and social workers actually are experiencing long-covered symptoms
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um as we speak as rachel said uh the impacts of long covey can be extremely variable
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and the important thing to emphasize as a clinician is that they may be on any bodily system
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but particularly disturbing are the neurocognitive impacts so you can have difficulties with memory and
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concentration and problem solving i clearly there's quite often severe
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fatigue and exhaustion lack of stamina some people may have breathlessness and
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cardiac problems insomnia can be a particular problem in some people
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and that compounds the the issues of fatigue but you can literally have virtually any
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symptom from ringing in the ears through to joint pain and rashes at the end of the day
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and as a clinician the one thing i would say is that actually we're all different and we're and particularly we're seeing
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that with long covered um long covered is not unique in terms of a response to
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a viral illness um so we've known for a long time that some people have flu
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experience long-term problems following it and it's it's common in in a number
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of viral conditions um but again a couple of sort of very brief messages um the first thing is
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that the symptoms are as rachel said recurrent and unpredictable
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and recovery may be prolonged and unpredictable and as an occupational physician and as
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a senior occupational physician i know how frustrating it is when an employer gets that medical report that says
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well i think this person has got issues but i can't tell you when it's going to get better and i can't tell you what
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they're going to be able to do on monday indeed i can't tell you what they're going to be able to do three months from
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monday but i can tell you actually and give you some advice about aiding and assisting their recovery um
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and i think it's important to to say recovery because from what we know long covert is
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it whilst it can be a very long tail disease and we're still seeing people
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that still have significant disability that have actually had the symptoms right from the very beginning of the
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pandemic but we from all we can predict as clinicians the likelihood is that there will be a
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recovery that in itself can give problems with hr management and hr policies
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and rachel mentioned the fact that uh via the council for work and health we've been quite concerned about the
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fact that many uh hr policies on sickness absence management and particularly policies on ill health
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retirement and support actually don't deal well with long covered because some particularly of the issues around her
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whether it's temporary whether it's permanent permanent or not but it is clear that employers are going
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to have to think about the fact that many people will need adjustments to their work
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we know that this is a very common disease we know it's going to be increasingly common disease going
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forward and i think the key in all of this is to understand individual needs and to be
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flexible thank you thank you so much steve
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um i think there are a few questions that's coming to my mind the first one you've said is
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as we know you might even know you've had long covered as the
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or not your case was then for employees who wouldn't even have been diagnosed and i guess my question
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is to the panel but for employees who wouldn't even have been diagnosed with curvature in the first place but who are suffering from electron covet um and
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that might be that might be revealed later or might not because it might even be too late to find out antibodies what
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can employers do and can it really can can we really diagnose them and how do we support these people
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um i think the issue of and not knowing whether you've got got the label or not
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got the label is quite an important one and increasingly i'm interested in a sick presence and i think that we are
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going to be seeing people that are underperforming in the workplace that actually are having significant issues
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that maybe haven't got the capacity that they previously had that will never have had a test or will never have had a
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clinical diagnosis of long covered but actually are going to impact on workforce capability and are going to
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need managing in the workplace in the workplace and as i said earlier on we know that less than one in 100 that
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actually think that they've got long covered will actually seek medical support and we know that the diagnostic
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process of of putting that long covered label on is not an exact science by any
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means so again i i think this is like any other long long term fluctuating
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condition where um the important thing is for employers to be more flexible in
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asking workers what they need and then being able to respond to it
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yes um thank you and we'll get to policies in a bit um you've also used earlier uh the word
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something i've discussed upline right before you've used the word disability can non-covet is it a disability can it
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can it be classified as one in which case and so i'll ask you but i think um leslie you were talking about this
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earlier and perhaps matthew to weigh in on that as well yes um i i wouldn't claim to be a lawyer
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but i've been involved in very many disability cases in terms of understanding what is a disability i
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think there's no question that long covered from the multiplicity of its symptoms
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and the severity of its symptoms can have an impact on day-to-day activity and we're now all now without seeing
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many cases that have lasted past a year so i suspect an employment tribunal or a
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court would actually consider it that it could be a disability and it's wise to treat it as such
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i don't know if matthew wants to say anything i need to agree really
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um yeah i mean when you're looking at it from an employment law point of view i mean the the test is whether there's a physical or mental impairment that has a
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substantial and long-term adverse effects on a person's ability to carry out normal day-to-day activities
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and as we know it's always a question of fact and degree in that particular case with that particular claimant as to how
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the tribunal will determine whether that thresholds be reached i think in some circumstances where it's very minor very
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low level uh sort of long covered then it may not be but i think in the vast majority of cases and certainly where
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we're talking about things like fatigue and cognitive impairments and so on and so forth it's likely to be um an
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important point though as well you mentioned steve in terms of the label being important for individuals and and sort of how they uh address it and how
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they manage it themselves and seek sports and treatment interestingly from a legal point of view it isn't actually a medical diagnosis that the tribunals
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are looking for um it is literally just how does it affect that person and their ability from a really a common sense
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point of view to be able to carry out their normal day-to-day activities i think the day-to-day activities one is a
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really important point because i'm certainly seeing people that are functioning relatively well at work but
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are literally going home and collapsing at home and are unable to do the housework or the shopping uh and all the
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cooking yeah it's taking in the round i mean in terms of dealing with it through a claim
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point of view i mean the tribunal will ask the claimant to produce an impact statement uh where they
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explain the effect that it's having and then produce their medical evidence as well the respondent the employer will
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potentially be arguing in the alternative unfortunately it gets a little bit cynical at this stage of process um but um and then the tribunal
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will basically weigh up that one way or the other potentially with medical expert evidence if they feel as though
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that's appropriate in that particular case but otherwise it is very much you know how is it affecting you and and and
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what are the symptoms thank you yes thank you uh thank you steven thank you um
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um matthew um i think it was quite important to clarify this but we'll get back into legal questions if anybody has
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further ones towards the end of the session um so we've said this the definition of
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avalon curve it varies sometimes very too it's quite difficult to diagnose and we're still learning a lot about this
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um but we do know that we need to to to implement flexible policies and we have
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learned quite a bit as well so i'd now like to get into uh what many of you are asking about which is how exactly can my
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managers and employers support these employees who are suffering from these symptoms um and to start i'd like to
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invite dr juliaker um to to take us for a bit of your of your thinking and and
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the research and findings of the research long long fantastic thank you so
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in terms of our um our research if you go on to the next slide you'll see this picture of an igloo which some of you if
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you've read the new guidance for long-term conditions and managing managing
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long-term absence you might be familiar with but the perspective that that we've developed through our research is
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really that often when we're dealing with absence and when we're supporting people back from a return we operate in
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silos so we expect the individual to take on board lots of different exercises to rehabilitate themselves and
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and get stronger so that they can go back to work we expect things of the leader and the line manager we expect these these
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policies to fall into place but actually what we need to really do is think of these in a really
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synergistic way and build a protective shield for the individual so that they can have the
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best possible return to work or stay at work experience such that we're really responding in a joined up
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way to their needs and so the project that i'm going to share just some top-line findings from
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is drawing from work that we've been doing looking at mental health in the workplace and how we can support people
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to stay at work when they've been when they've been experiencing significant mental health challenges and we thought
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actually this model is really helpful in the context of understanding the needs of people with long covered
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and so on the next slide we'll have just a little bit of a picture here that you
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can see is obviously steve's talked through some of the the facts and figures behind this but what really
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comes through is that there are too many experiencing um long covered that we really need to
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have in place and practical solutions but also for many of the stories that we
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hear people are off work for a long time and we know that the longer people that stay off work the
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less likely it is that they're going to be able to return so with such a high volume of people experiencing challenge
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of managing their their condition at work we really need to be able to put in place
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um processes and practices that will enable people to manage work in the long run
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and stay at work such that they can work at their capacity in a flexible way so it really does link into all that rachel
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was saying and steve was saying about that that flexibility and adjusting work so that it can map
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into that fluctuating condition but what we also see is often managers
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have no idea what to say they don't know really what's presenting in front of them and as steve was saying this idea
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of sick presenteeism sometimes you might miss it as perhaps poor performance or
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not being attentive to the detail when actually there's something else going on and as a manager sometimes you don't
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feel confident in addressing that as the individual who's experiencing the health
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condition a whole wave of these new emotions and and symptoms and and
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physical symptoms that are really unfamiliar and not knowing how to deal with that and so often what we see is
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managers are unsure of what to do or say and they don't know how to make adjustments and how to make adjustments
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work employees themselves are unsure of what to say or what to do because it's all new to them as well so
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um what we've aimed to do is understand from those people who have got back to work and are managing work successfully
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what does that look like and what do they need and so we look at everything in terms of what are the individual
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resources and individual things that people need to do to get themselves back into work and sustain work but also what
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do we need from our group from our colleagues from our line manager and from our organizational level response
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and so if we go on to the next slide i'm only going to fly through these very quickly and we'll hopefully and share
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them share them in the next next couple of months when we've fleshed out the findings in more detail but what we've
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heard from individuals is the things that can be really helpful for them is that coming to terms with reduced
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work functioning it's incredibly hard to go from full steam managing home and work life
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to suddenly your body not allowing you to to operate in that same sustained way
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and so for for individuals helping themselves come to terms and accept that they perhaps cannot work or live at the
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pace that they were is something that's very hard but something that helps them on that journey to having more open
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conversations and better managing their health and well-being and this point about being open about
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their work functionality um is really important because what we see here is that many people describe that
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as being so hard to to describe what they feel able to do but necessary to really then achieve
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those work adjustments that are useful as with mental health as with so many other conditions prioritizing self-care
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is absolutely key and those individuals that prioritize their self-care and afforded that from their group from
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their their line manager are also those that are able to sustain their health and well-being because
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as many people with with long covered um describe often it's two steps up and
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one step back you think you're better so you push yourself a little bit more and then actually that exhaustion steps in
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and it's one step back so the prioritizing the self-care is absolutely key so at the group level if we move on to
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the next slide we can see here individuals found from their colleagues and their friends some really useful
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things so having instrumental support when they're at work so people stepping in and saying can i help you with that
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spreadsheet or you've got a presentation to do do you want me to stand near with you is there anything that i can do to
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help you prepare really stepping in to to give that support when needed
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and recognizing that people will need to take their work at pace so it's not going to be the same as it was perhaps
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before they um they experienced covid there will be times where there will be a need for a step back and perhaps as a
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colleague at the need to step in and then from family and friends also
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needing that that emotional social support this has been a significant change for many people and
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many of those aspirations of how life is going to be over the next few months have been dramatically changed and
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curtailed and so having that emotional support is really key and connecting
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with outside work activities for many people we hear from people working in the health profession teachers all sorts
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of occupations where work has often been the main focus of life and when that work capacity is reduced we need to
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think about what are those other activities that can restore us so that we can then manage
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our health and our work and then the line manager so much is put on the line manager and at the next
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slide what we can see is some of the things that have been mentioned from those individuals that have been kind
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enough to share their stories is the absolute um vital role of an extended phase return
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so far too often people have tried to get back to work um within that
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traditional six weeks and and that just doesn't work for so many people with long covert so an extended phase return
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that's um that the manager has the um the autonomy to to flex and and work
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with the individual but also making sure that we can flex those tasks offer home working where
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it's available um and giving that that manager the autonomy to flex the work
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adjustments week by week without having to check in with somebody more senior so
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that they can really respond on a day-to-day basis to help meet the team goals but also
32:24
help the individual manage their health and work what i think is striking and really echoes what steve was saying there about
32:30
the lack of expert support in this area is when we look outside to that leadership that often if you are say for
32:37
example experiencing mental ill health you might go to your gp there's certainly a lot it seems that
32:43
there's a lack of immediate support for somebody with long cover to go and access
32:48
and for me that that means in an organizational situation it's ever more important to have
32:54
occupational health to have a good um health provision so that your employees
33:00
can act on that and then when we look at the organizational level some of the themes
33:05
that are coming through here are those flexible work practices having strong legal policies
33:12
and also that culture where mental health and physical health are prioritized so if it's an organization you know that there
33:19
is a stigma around mental health it's likely that your employees with long covid are going to face challenge
33:26
as well so looking at mental health and physical health in the round is really is really key there and efforts that you
33:33
can put into supporting that open dialogue about health and and work
33:39
is really is really going to be a benefit and outside it's thinking about where we
33:45
can help to access um health and advice so for those organizations um that don't
33:50
have occupational health do you know where your local long cover clinic is are you able to
33:56
provide them with information that that can support them in other ways and that that is often seen as really
34:02
helpful so that's a whispen mentor of what we've found so far we're really at those early
34:08
stages of delving into into research and and stories that we've been so privileged to hear from people
34:14
who've been sustaining their work over time on the next slide i just want to highlight really
34:21
this role of the fact that in practice everybody's got a role to play in
34:27
supporting those individuals return to work the individual themselves needs to build up those um that toolkit that's
34:34
going to help them sustain their their work and health but also line managers colleagues and our organizational
34:39
professionals and this igloo approach really helps us to identify okay what is it that i can do
34:45
in my position to to play a role in that journey so we need to increase our knowledge our
34:50
skills our confidence so that we can help people return back into work but also we need lots more research we
34:57
need to understand what people's experiences are not only in terms of that lived experience but also
35:03
what's the experience of supporting people how what works what doesn't what kind of messages are are you finding as
35:10
hr practitioners um land with your managers to help them exercise that
35:15
extra support how do you build a supportive culture and one where adjustments are made and and realized
35:22
and so that's where um we'd like to do a quick call for for research as well because we're going to be running some
35:27
round table discussions over october and if you have
35:32
um anybody any experience of managing those with long covered if you are rolling out
35:39
processes and reviewing your absence management policies to to think about how you can better support people we'd
35:45
love to hear from you so if you'd like to take part in any of those round tables please do get in touch and um my
35:51
email address is there and also um rachel's if you if you have any questions and we'll we'll send out some
35:58
further information at that point
36:04
thank you joe i just dropped your contacts and rachel's in the chat for anybody who
36:10
wishes to get in contact i'd be great to do this in the chat but won't be able to capture it so that will be quite helpful
36:17
and um we'll have the guidance soon do you have a timeline for this so people can look out for it for the new guidance coming
36:23
out so towards the end of the year we're aiming for for the full report and new
36:28
guidance to come out so in the meantime i think um the the um revised absence management and
36:36
guidance is a really good first step and because it really helps to focus that mind on how do we think about
36:43
fluctuating conditions but the long covered research will obviously provide much more depth
36:49
great thank you um we'll go on with our next figure and then i do want to come back to you and talk about assets
36:55
management policies and attendance as this is the most questions we've received in the chat
37:00
um so kind of to bring it all together and talk about the work of the uk long-coded support employment working
37:07
group and lived experiences i'd now like to invite uh leslie mcnavin who's the
37:12
chair of that working group um leslie if you'd like to share a couple of thoughts and kind of help us bring
37:18
this all together sure i'm loving that the person in the room with the lived experience of long
37:24
covered and the brain fog is the one that's trying to pull it all together but actually i think i can probably say
37:29
some useful things about um how patient groups are doing exactly that so thank you to zpd for the invitation
37:36
apologies i'm a bit croaky today um and i completely endorse everything that has been said by the previous speakers which
37:42
might does make my life an awful lot easier um we are very um
37:49
much part of the story um and what people with long coved
37:55
have done in the last 18 months is basically organize ourselves so that we go from purely being passive patients who
38:02
need to be helped and fixed to thinking how can we be active participants in our own recovery and as you've heard from
38:09
people like steve so i wanted to speak to you um about this theme of how we all worked together
38:16
because multi-disciplinary working is what from a medical perspective is being found we need to be doing to treat
38:23
long-covered from a medical perspective but as has been said by other speakers it's also how we need to work
38:30
collaboratively to create that protective shield that joel talked about for the system to join up to support the
38:36
patient or the worker to be able to work their way through the system whilst ill so the first hat i'm wearing is i'm a
38:43
person living with the lingering effects of long covered and i contracted cover 19 in march 2020
38:50
unfortunately i have a very understanding employer i'm self-employed um i had two children at home i was home
38:56
schooling i thought you know what i'm just gonna rest and i will recover quickly if i do the right things
39:02
and here i am 18 months down the line a lot better than i was but still very
39:07
much pacing and still very much recovering but also very much contributing
39:14
in my in life in the last 18 months my preoccupation hasn't been what the
39:19
projects i was working on pre-copied which were very much around gender inequality in the workplace
39:25
but much more campaigning for rehab research and recognition um alongside other
39:31
people who have found themselves in limbo and becoming patient activists because
39:37
recognition has been touched on people didn't even realize long covered was a thing until patients noticed what was happening
39:44
talked to each other and started doing patient-led research so this is something that's been
39:49
um identified and named by patients so we call it long covered not the medical term because this is how it's felt for
39:56
us is that we've been affected by long coverage not stars
40:01
covered to 0.957 or whatever it is and but my third
40:08
hat that i'm very much wearing today is the fact that i am a cipd fellow i've been a member of the cipd for 20 years
40:14
um i 20 years experience doing um culture changing od work within very
40:19
large organizations including 5100 companies so my passion
40:24
um in those roles was very much trying to fix problems and optimize how we develop retain attract
40:32
and support our talent and and i think i'm looking at the long-hold conundrum
40:38
and returning to work challenges very much with that perspective it's very much about behavior led change
40:44
management and strategic hr and i agree um with what was just said there about occupational health have a huge role to
40:51
play managers have a huge role to play hr have a huge role to play but patients
40:56
have a huge role to play as well both as individuals and as collectives
41:02
so i call this workers with long covered experts by experience because this is so the national institute for health
41:08
research who has funded millions of pounds of research into um what lung covalence and how we
41:15
tackle it and having consulted patients as part of the process of evaluating
41:21
what needs to be done and who we want to give funding to to find these answers and they very much
41:26
see our role as being crucial and so more on that as we go through but i
41:35
very much um appreciate the fact that i already know majority of people in this call today
41:41
we've already been working together so the lung patient group has formed lots of allies and we are working in this
41:47
multidisciplinary collaborative way and i think it's just extending that into organizational practice because i spent
41:54
a long time designing and delivering management development programs and coaching line
42:00
managers and middle managers the squeezed middle and i know it's a thankless task often and it's a hard
42:05
task and it's not just about um expecting managers to be able to do everything by themselves and become
42:11
experts can i get the next slide please so this was an illustration done by one
42:19
of our colleagues who has long covered who is a gifted artist um and in the early days and i have
42:26
shared a blog post in the chat that i wrote in march this year reflecting on what the first six months
42:32
of uh the pandemic were like if you contracted covid you were basically
42:37
told to wait at home and be patient we're dealing with all the acute cases in hospitals we can't overwhelm the nhs
42:44
so we became our own case managers our own researchers and you know most people could tell you i'm at dave whatever and
42:51
we started off the first iteration of this cartoon had people saying d30 d40 we had to update it to do that now we're
42:58
looking at 500 days plus for people who got covered in the first wave so you
43:03
know that goes to show without any support of treatment
43:09
i suspect some people who are still recovering now may have recovered more quickly but that's that's my own perspective on
43:16
it and there wasn't research being done in support being given back at that stage so
43:22
it's also important to note that people with long coved got one covered at different points in the pandemic we've
43:30
had a first wave a second wave and a third wave and people getting along covered now may well end up in a clinic
43:36
and ahead of people who contracted covid in march of april 2020 and in scotland
43:41
recently i went to the stats um when i was giving evidence to some msps um
43:47
a third of people with long covered in scotland have been ill for over one year and there is a real
43:53
concern we get left behind um because there was no treatment there was no support we didn't know what was
43:59
happening and that was no one's fault that was just the reality at the time
44:04
next slide please the patient group that i started
44:10
moderating um back in may june 2020 now has 44 000 members and it's called long
44:17
code support and we're forming a charity to get funding so that we can
44:22
better um work with people trying to find solutions as steve outlined people experienced
44:29
debilitating symptoms sometimes months after infection i had a very mild case and that's why i was
44:35
motivating the group because i thought i was one of the lucky ones who'd recovered and sadly it came and bit me
44:40
on the back side um but it was really important that some of the things that joel was talking about
44:46
there about feeling that supportive shield in the absence of anyone knowing about one coveted or expecting the uncovered
44:53
we created that shield within patient groups and one of the quotes at least i know i'm
44:58
not alone and i think people who actually have had the disease tend to know a little bit more about it and i
45:04
actually think support group has given me more knowledge than the doctors there were no experts there even now
45:10
are very few experts um who knew all things but long covered i'm pretty sure steve says something to that effect
45:15
about we have to remember how much we still don't know so the good news is that the passive
45:21
patient who you're thinking how do i fix them how do i fix this problem how do i help this person
45:27
and they've probably given a lot more thought to that than you and
45:32
another thing i'm noticing somebody's saying about how can i
45:38
distinguish long-covered and languishing you know the the torpor generated by lockdown
45:44
again i think the patients themselves do not wish to prolong
45:50
the feeling that we are not capable of doing the key things that made us us um and i think again just listening and
45:57
believing what people are saying um is really useful and that's the very
46:03
first thing that people find when they join the support group is we didn't judge we didn't have any
46:08
answers but we listened and we shared and we started to try things and experiment and
46:16
what worked was shared and what didn't work was shared with the caveat that just because it worked for me it might not work for you but
46:22
you know we we have done lots of reasonable adjustments already in our um lives
46:29
uh next slide please so i came into this as an hr and change
46:35
management professional and occupational health was something i knew that we sometimes used in hr
46:41
for people and who needed a bit of extra support but i've come to realize just how
46:47
underutilized occupational health has been in the context of long covert
46:52
and how much more we could benefit from additional occupational health support and i went along to a
47:00
summit by the society of occupational medicine who i've been working with since january and as partners in
47:06
producing guidance with people like joe and claire rayner one of the doctors in our employment working group
47:13
and there's an issue about access only about 50 of people can have access to
47:18
occupational health the quality of the occupational health being provided is sometimes um
47:25
kept as quite minimal when actually it could be an investment in finding solutions and used much more in depth
47:32
but also the scope we've got occupational physicians we've got occupational health nurses and but we've also got occupational
47:38
therapists and we have several occupational therapists in our employment working group which is um
47:45
a subset of the steering group that i'm part of for long covered support who are trying to influence strategically how
47:51
patients can be part of the solution and part of co-creating the design of pathways to recovery
47:58
and this was a light bulb moment for me early on and when i saw this definition of occupational health is about
48:05
preventing departures from health as steve said the shift we've shifted perspective we
48:11
are now tolerating infection risk teachers are having to
48:16
um go into classrooms with uh children one child gets still following week 17 are off and that
48:23
teacher has been exposed to the viral load of 17 children and you know that is just being seen as
48:28
something we're having to live with to live with covered and in scotland at least we're doing a lot more preventative measures in the
48:34
classroom but we do not seem to be managing the risk of covered and long covered and in
48:40
particular terribly well and the final point this adaptation of
48:46
work to people for a different way to look at how we organize ourselves post pandemic
48:52
before hr was very much about writing job descriptions and fitting someone into the job description through interviews
48:58
why don't we look at the resource we have and how we can fit what we need to be delivering as a team
49:03
based on the capacity of the people within that team and and that for me is a call to action
49:09
to not write off someone who is underperforming i know a lot of people who have not had
49:15
covered and long covered who are underperforming because of other depression and anxiety and concerns that
49:23
have come about not to mention being at home managing ill people potentially looking after children who've got
49:29
covered in long covered you know no one has not been touched by the pandemic any any semblance of idea that people are
49:36
normal in this current state of affairs is is probably fairly unrealistic so
49:42
let's get real about what how we actually deal with people and what they can do in
49:48
in the day-to-day from a realistic perspective and next slide please
49:56
so the nihr the national institute for health research they commissioned a survey of um what evidence we knew
50:04
about long coved and then they updated that with a second review and this is some information produced by them so
50:09
they were looking definitively at what to be known therefore what research gaps exists that we need to fill
50:14
and they were very clear that as has been said long cover can be very debilitating
50:20
um months after the initial infection we now know more than a year 71 percent of respondents in their own
50:26
survey said long covered was affecting family life you know it's hard enough being a working mom or
50:32
a working dad you know but to try and balance your long-covered recovery your um family and your job is
50:40
incredibly difficult and then we're also finding that um
50:46
slightly more women than men are getting long covered definitely more women than men are doing a lot of caring responsibility in the
50:54
home during the pandemic and so you could argue and coming as someone with a gender in a
51:01
quality perspective previous to covert i have been watching from my couch as
51:06
progress made with gender and equality and diversity and inclusion in recent years goes backwards so this is also a
51:13
diverse student inclusion issue and has been said as has been said 80 percent of respondents found that
51:20
long covered impacted on their work so this is the biggest mass disabling
51:26
or impairment causing um effect or event rather that we've experienced
51:32
since the flu pandemic in 2018. next slide please
51:38
so i will leave that information for you to look up afterwards if you're interested in who we are and what we're doing and as i say we i'm the chair for
51:46
one of the working groups there are others and we are absolutely part of the
51:52
um project team that needs to be putting ourselves back together post-covered
51:58
um next slide please our purpose we basically came together
52:04
because there was no support for a long voter there was no understanding of long covered and again we have been told
52:10
numerous signs that we have earned a place at the table when designing services and planning new research so
52:15
all of the the previous speakers did an amazing job and said amazing things but what they can tell you is what it's
52:21
actually like to be a patient and to share the tacit knowledge that we've amassed in closed private groups where
52:27
we tell people what it's really like and so there is a wider pool of knowledge and information
52:34
that and we bring to the table that add to the research that joe's doing that add to
52:40
the perspectives and the rachel's commissioning and
52:45
we have effectively taken the lead where there was no leadership for people with long covid so again for me and my my
52:52
background i see this absolutely as a leadership opportunity for um organizations to step up for hr
52:59
to step up and i know what drove me in previous um
53:04
roles was to try and make a difference and i think this is an opportunity as well as a
53:11
threat for hr for occupational health to really look at how we
53:16
support people with chronic health conditions not simply long cover there have been other chronic ill health conditions
53:21
before us but we are the ones who are getting ill right now who are doctors who are pharmacists who are
53:28
nurses who are teachers who are change managers you know we bring those collective skills to the the
53:36
conversation as well as our lived experience next slide please and i'm conscious i need to quiz through the last couple and
53:42
we have been a lifeline for people and i'll let you read the quotes at your leisure but that's the sort of thing that needs to be replicated in the
53:48
workplace to create that protective shield because people want to leave when they recover and go into the real world
53:55
but still need some element of support and next slide please
54:00
our values if if any of these values resonate with your culture as an organization
54:06
you will be well placed to support people with long coverage and
54:11
we don't conform to typical patient stereotypes and that we had incredibly driven and this idea of torpor and lying in our
54:20
beds and doing nothing we have i've never been so busy i've got a full-time job as a patient advocate and
54:27
what i don't have is the energy to physically do all the things i love doing and used to do so i can talk at length as you can
54:34
see and i can write better now than i could at the beginning and because my brain fog is clearing and i'm getting my
54:40
cognitive ability back and i'm working with patients as well to do creative writing to help again do some sort of
54:47
therapeutic work to help them find themselves and find their way back to themselves again people are improving
54:53
slowly but steadily and need to be cared for carefully next slide please
55:00
now this was an amazing article i read in june i think um about how to lead in the changing world
55:07
from the cipd website so again the link is at the bottom and i'll let you follow that up but this has been my perspective is
55:16
we are trying to do the biggest change management um program management um exercise that
55:23
we've ever had to do and i know that hr and occupational health have done an amazing job just keeping the wheels on
55:30
and keeping things going in you know today so this is the next stage of this is how to kind of look at
55:36
how to build back equal how to build back better and there are lots of people with od skills who you can bring in
55:42
there are people with occupational health skills that you can bring in it's not about asking the line manager to do everything it's very much about bringing
55:48
resources into your hr teams who can help you and as
55:53
an employment working group we do lots of things including support people to take
55:58
to represent themselves in an employment tribunal where they've been treated incredibly badly and very disappointedly
56:06
given the the amount of um commitment and
56:13
care that they put into their work because sometimes we you know people who are ill are just seen as a problem to be
56:18
get rid of and swept under the carpet but we are still there we still have all the
56:24
qualities that we had before we just have a different way of
56:29
engaging with things and whilst people were in furlough and like whilst we were working from home as steve said there
56:34
was a lot of people who were managing but asking people to come back into the workplace and suddenly to transform back
56:40
into their old selves when they can't do that is going to be a disaster so we need to be
56:45
flexible we need to be listening to people and we need to be trying to find solutions
56:50
uh last slide i think uh next slide
56:58
yeah i love this i have a friend who's trying to get a job as a receptionist and some of the things they ask in the job descriptions
57:04
that they want receptionist to do it's like applying to be a brain surgeon you know why don't we focus on what we can
57:10
do you know you don't have to be brilliant at everything and i might not be able to
57:15
i'm trying to for example um jump in flights down to london and deliver workshops in person without thinking
57:21
about it but i can do amazing conferences and and zoom um
57:27
training sessions and so can the others in my employment working group and that's what we're doing we are making ourselves available
57:33
to be able to support people to rise to this challenge because that's
57:39
what we need to be doing is working together i will stop there i've clearly gone over apologies
57:47
please help very much that's my final say is you know we need
57:52
allies we need support we need help but please involve us don't don't try and fix it for us but involve us
57:59
thank you so much leslie and uh i am on your vote had it too and i can't relate to this more i think what this panel
58:05
reminds us often which is really important is the the importance of getting together i mean
58:10
here we're experts from different fields you've got people who suffered from it you have people who have experience um
58:17
we've heard today parallels with mental health challenges other long-term conditions from which we've learned
58:22
where we've been able to make adjustments um so perhaps um that that's an idea to also get together as working
58:28
groups whether within your industry or just within your organization and remember that um that the more people
58:33
you involved and the more diversity you have on your group the better you will be able to address this um
58:39
mindful we're sharp on time so we'll just be seven minutes late just to address some of your questions um while
58:45
i take them out i'll i'll start asking for a few questions if you have any last-minute questions or any employment
58:50
or questions that we haven't addressed yet please do submit them through the chat as we only have in two minutes
58:57
um i think one of the things that you said leslie is um how this provider how could the pandemic in general has
59:02
provided us with the biggest opportunity to and this is something we've been saying over the past year
59:07
and and have the biggest opportunity to rethink our practices our policies and the way in which we do work and support
59:14
our employees we've heard uh all and all with current mental health with herd well-being we've
59:20
heard about the duty of care of employers and how all of this has become and come back at the center
59:25
of our preoccupations and on top of hr hr's list but also really really a thought for leaders today
59:32
um it brings us back to the biggest lessons launching lockdown um empathetic leadership and support
59:39
the importance of having open communications and to create a culture where it's safe for employees to express
59:45
their concerns and what they suffer from without without having a few repetitions or it impacting their their employment
59:51
altogether um and then what we've learned what where you've shared with you've shared a lot
59:57
with us uh joe in terms of how exactly line managers and organizations can help and and so has the rest of the panel
1:00:04
the biggest thing has been flexibility and the idea that cipd has championed all throughout that flexibility is never
1:00:10
a one-size-fits-all approach that is all about individualism and all about yes
1:00:15
being flexible but not as a blanket provision but rather being able to to adjust and we have been able to make
1:00:22
these adjustments down to schedules to teams to team to to performance management during lockdown and i guess
1:00:28
what we are saying is you know perhaps and what we're we're thinking about right now is to not forget these lessons
1:00:34
and being able to keep taking them forward i know when i have highlight like you leslie ledon curved
1:00:41
i mean fatigue and we have peter today who's talking about who's talking about us and saying that he's joining us from his bed and he's really struggling with
1:00:47
long-term coverage he's saying that in chat what i needed is to be able to tell my manager hey listen i can't do a full
1:00:53
day right now i need to i need a nap i i have to tell my manager i need an app i'll resume later but that's what i need
1:00:59
right now and having that ability to say well you know we've done a drink of it we've allowed parents to you know end
1:01:05
their hours earlier to go and pick up their kids so we can take some of these assemblies and take them forward even though there
1:01:12
is no blanket guidance available as us yet and we're all kind of learning together
1:01:17
um so i hope this brings back a lot of what we've talked about today but i want to finish on uh bring back to you rachel
1:01:24
and back to you joe the biggest question that we've been asked today was around managing attendance and and absence
1:01:31
management um so i know we're developing guidance but is there anything that you would tell organizations for those who
1:01:37
are seeking to to be flexible but also still have their previous uh their previous uh um
1:01:45
rules in place and and and policies in place yeah i mean thanks so much everybody
1:01:50
i've learnt so much from what everybody has said and i think the first thing around absence management because obviously this is a
1:01:57
really core issue for organizations and i was really struck by research that
1:02:04
university of oxford have carried out showing a very very low level in the uk
1:02:10
of people um suffering from lancobut have actually got a formal diagnosis from it now
1:02:16
obviously that's incredibly challenging for the individual because when you're not well you you want to have that
1:02:23
diagnosis and you've got all these different symptoms going on and you really don't
1:02:28
know what to expect but that also presents a real challenge for organizations as well because their
1:02:34
absence management processes and procedures and so on you know you you rely in line managers especially who
1:02:41
will be managing day-to-day absence they rely on that fit note and that diagnosis
1:02:47
and you know they'll then record it you know they'll use a code but actually
1:02:52
long covered and the symptoms being so varied they almost it does defy that
1:02:57
kind of process so this really is as leslie says an opportunity for hr to
1:03:02
step up and really look at your absence management policies and process and make sure that they really
1:03:09
have got that flexibility and that responsiveness in them that you really are guided by that discussion by that
1:03:17
medical advice and by that individual on an on a case-by-case basis in terms of
1:03:23
what support and what they can do and be wary of using approaches like the bradford factor that will penalize if if
1:03:30
you have so many short-term absences you might need to as you just said charlotte
1:03:36
i'm just not feeling well you know i just can't do it today so we shouldn't be unfairly penalizing somebody so do
1:03:43
bring that flexibility and that compassion into your actual absence reporting policies as well and beware
1:03:50
sick presenteeism steve said as well people who actually should be absent
1:03:56
when they're when they're at work because they they haven't got that diagnosis or they're feeling under pressure to be there and just carry on
1:04:03
when they're collapsing when they go home
1:04:08
yes thank you so much rachel is there anything that you wanted to add uh i know you've shared already so much about
1:04:14
about it and uh and i know a lot of you a lot of people today will be looking out for for this slide but is there
1:04:19
anything else you want to add yeah i think just to to really build on rachel's point there is that element of
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where are your trigger points and for people with long-term conditions for long covered for mental health for any
1:04:33
long-term condition if there is a meeting with hr after three consecutive
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extra bits of absence if there is a disciplinary after a certain point of time that means that individual is going
1:04:44
to be so worried about that meeting that that detracts from their rehabilitation as well and so there's a balance between
1:04:50
having those things in place to safeguard undue absence and then ensuring that we provide an
1:04:57
environment that really is supportive for that rehabilitation so that's one thing and then the other thing is to
1:05:02
just make sure that our line managers have the autonomy to have conversations and to test and learn so whatever
1:05:08
adjustment you put in might work or it might not and it might work this week but it might not work next month and line managers that have
1:05:15
the confidence to have those conversations and feel skilled to do so are much more likely to create that
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environment that will help people stay at work which means that they're likely to thrive in their careers and keep
1:05:27
their careers can i just add i think we've got to be very careful that attendance policies don't drive sick presence in safety
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critical roles particularly amongst drivers high pressure decision makers and those that
1:05:39
are working in hazardous environments because that pressure to stay at work may actually mean that that's absolutely
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the wrong thing to be doing agree stephen when we we did a survey of
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our members to find out the impacts on the wider um life and and work um a majority of
1:05:58
people who responded were health care workers so they're under huge pressure as we go into the next wave of the pandemic to be
1:06:05
back at work on the ground and having to do 12 hour shifts and you know work with our colleagues so a
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big part of this is about looking at the whole team and the whole system and not just
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saying to one person but you're a critical person you have to be in there because as you say imagine if someone
1:06:23
goes in and does a job where they make a mistake and that costs something you know some in their life if
1:06:30
they're a train driver or a healthcare worker just you're thinking about the other thing i was going to just add to what rachel was saying you know this
1:06:37
takes me right back to the basics of management development you know one of the first management development models we
1:06:43
introduce managers to is mcgregor's theory x and y where we have an implicit bias where we
1:06:49
either see people as inherently wanting to work or not wanting to work as inherently self-motivated or lazy and
1:06:57
it's this is what disability does to people it triggers bias and
1:07:03
when we're in crisis as well even if we've learned good management techniques
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we still go back to our default position which is what do we trust and if we think if i
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let my people work from home they'll just be sitting watching netflix all day um you know you're going to
1:07:21
find a different dynamic than if people are like okay well the team know what they're doing i'll get them to you know
1:07:27
we'll arrange weekly one-to-one so that we can find out what's happening and you know it it it creates a different
1:07:33
culture so the point joe made about if people feel they're being disciplined and this is the kind of words that are
1:07:39
being used if people are being pulled up um on capability being disciplined as opposed to
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i'm getting support from my leg manager i'm getting support from my employer my employer is trying to find ways in which we can find ways for me to get a
1:07:52
diagnosis or an assessment because the nhs is not able to do that maybe we can look at the health care provision that
1:07:59
hr has put in place for workers you know so again it's about being solution focused and seeing
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not seeing the person as the problem come to me comes all the way back to see the x and y and we need to remind
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ourselves that the person in front of you is not trying to be difficult they're actually trying their best and
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and that would be sorry i have to to cut you off thank you so much leslie for this and
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again a really important one that we've learned to incur it we've learned to understand to build trust within
1:08:29
employees and it's just not to forget all those ways and trying to rush back into into our old ways of working thank
1:08:36
you so much everybody for uh for joining us um it's been really a pleasure talking to
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you today um thank you for those who've joined us today the recording will be made available on
1:08:46
cfd.co.uk and please don't follow us on linkedin and our social media if you wish to get this live as well um you
1:08:52
will also find a contact at rachel andrew who are conducting research on the topic and we'd love for you to share
1:08:59
your experiences whether you've been a patient whether you've set up provisions or policies um anything that has worked
1:09:04
or hasn't worked for that matter that would be helpful and help us collectively bring solutions to the community thank you so much have a great
1:09:11
evening