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Perspectives on Long COVID and Work: Experts by Experience

Posted by Ann Caluori | Wed, 24/03/2021 - 16:53


Long read: In this guest blog, in anticipation of our Perspectives on Long COVID and work Online Summit on 29th March, Lesley Macniven, Long Covid Support campaigner and Employment Working Group Chair and Long Covid Scotland Network Co-Founder, explores the complex emerging issues around work and Long COVID. 


“It is a regret… that we did not have the testing capability anywhere in the world to deal with this virus. It wasn’t possible… to spot this first wave until it started to encroach on the hospitals.”[1] (‘Ask Jonathan Van-Tam’, Channel 4, 27th January 2021)


Many Long Covid Support[2] (‘LCS’) Group members became ill in that first wave, a year ago. Apparently suffering from COVID-19, we were told to self-isolate at home and not to contact our GPs. We’d be “better in 10 days”. When we weren’t, we were told to stay home, untested, with our (relatively) ‘mild’ symptoms, to protect the NHS from being overwhelmed. The threshold for hospital admission – “Are your lips turning blue?” – was high. So we went online. The closed LCS Facebook group[3] started on 2nd May 2020. I joined as a moderator thinking I was well on the way to recovery[4]. We have admitted close to 40,000 members; all with symptoms, or as carers for someone too ill to join.


People read and wrote posts in tears; “It’s not just me”, “I thought I was going mad”, “I think I’m better... and then I’m not again,” and cried with relief when they left; “I think I’m there now, though I may be back”. We would welcome these ‘recovery stories’ posts with joy and cling to them in our darkest moments. The lack of these, though, and increasing group numbers, speaks to the extent of the long haul being experienced by many.


Many of us, untested in this ‘first wave’ have hit or are approaching our one year ‘Coronaversary’ (mine was this week); we are still at home[5], not working, or working reduced hours, thanks to the long tail of a plethora of ongoing, evolving symptoms in response to COVID-19 infection[6]. My business on hold, pro bono Long COVID advocacy became my flexible role, energy levels permitting, along with dozens more skilled professionals. Even with a strong team, the demand equates to more than a full-time job; still recovering, I don’t have the capacity to meet it.


I say ‘many’; no one has reliable, accurate Long COVID statistics. While the ONS does produce monthly prevalence updates, Long COVID statistics do not feature in the daily updates, despite months of appeals by Dr Nisreen Alwan and patients to #CountLongCovid. So LCS and other groups made sure we counted for something by connecting online to provide peer support, a space to ask, “Does anyone else… or is it just me?” and share insights and information they find it impossible to obtain elsewhere.


I say ‘apparently’; as Jonathan Van Tam observed, no one was tested for many months at the start of the pandemic. No resources were ready and waiting. Apparently, no one saw the long tail of COVID-19 coming, alongside overflowing wards, queues of ambulances and people saying virtual goodbyes to devastated loved ones via donated iPads. Perhaps, understandably, we were the least of their worries.  


This lack of recognition, testing and treatment has had long term effects. As a Long Covid Support Group moderator, and Chair of its Employment Working Group[7], I’ve observed a steady rise in posts flagging occupational health and return to work challenges beyond what is covered in official advice[8] that our multidisciplinary group identify and respond to. Long COVID threatens our whole future, not just our health. The threat is greatest for those facing any additional barriers to recovery. Previous inequalities are being exacerbated.


A significant new narrative dominated this International Women’s Day on 8 March; how, predictably[9], carers (mainly women juggling work and caring responsibilities outsourced pre-COVID[10]) were being disproportionately adversely affected by COVID-19 due to lockdown, job losses, furlough and closed schools and nurseries[11]. Add to that ongoing COVID symptoms[12] with no official treatment. Then add the additional barrier these first wavers face in accessing new routes to support, with no positive COVID-19 test on their medical records (although the NICE Rapid Guideline[13] issued in December does now state this is not necessary). On top of the impact on all of us, women’s progress out of the home, at work and in society, has been dealt a devastating blow[14].


Conscious efforts to support Diversity and Inclusion[15], a major strategic focus for many organisations in recent years, will therefore become even more pressing. As with all pandemics, those already at any disadvantage have been hit hardest. Long COVID itself appears to not discriminate, affecting around 1 in 5, or 1 in 10[16], who didn’t recover within 10 days, across all ages, fitness levels, socio-economic groups, ethnicities and genders. Our symptoms too were multiple and varied; cognitive issues, chest pain, debilitating fatigue to name but a few[17], accompanied by bewilderment at what was happening to us.


Thanks to campaigns for safe rehab[18], relevant research and widespread recognition[19], the hidden cost of COVID has started to emerge. Trying to build a boat while sailing it through a storm isn’t easy. Patients with Long COVID have been patient, as instructed. We knew no one would survive if the boat sank. But many of us who survived, but didn’t just recover, are still treading water, scouring the horizon for a life raft to support us back to dry land. The majority are of working age and were previously gainfully employed. In this last year we adapted our skills to search and rescue, raft building and sending out visible distress signals.


Those who don’t earn if they don’t work walk a precarious line between staying afloat financially and trying to get through their working hours. Not all have the luxury of being able to just be ill, or to have the chance to rest and make a full recovery. Many are cushioned by employment that provides sick pay if we get the flu for a couple of weeks. However, our absence management systems weren’t designed for Long COVID.


Can most people with Long COVID return to their previous jobs? We simply don’t know. Given the significant number of our working-age population affected[20], disproportionately in frontline healthcare[21], it will devastate our workforce if we do not do what we can to retain these skilled workers, leaders and specialists, not least healthcare staff while we are still living through a pandemic. To date it has been too easy to dismiss people due to disability and it is still too early, and experiences have been too varied, to know what to expect but also be optimistic effective treatments will be found.


Meantime, this cohort of workers have become their own case manager, researcher and scientist running experiments in every aspect of our lives. We are motivated to get back to our previous level of function; not live a half-life, or even a quarter of what we lived before.  However, impatience is penalised with relapses, sometimes with no obvious cause, sometimes due to cognitive rather than physical exertion. We don’t want to let down colleagues, bosses, ourselves, our families. Our mental health may deteriorate along with our quality of life and self-esteem to create a smokescreen that masks underlying issues that need investigation. We know as case studies we are not straightforward; if so, we would have worked it out by now. But we have learned a lot that we are keen to share; as patients, healthcare professionals and to repay the peer support we received. The medical establishment are recognising the value of our individual and collective experience; “If we have learned one thing over this year, it is to listen to the patient[22].


I’m a Chartered Fellow of the CIPD[23] and pre-COVID had 20 years’ consultancy experience advising organisations on embedding employee engagement, talent management, diversity and inclusion. Too often these aims are HR initiatives bolted on to rigid, core operational HR processes, such as absence management, not designed to support progressive ambitions. The pandemic has also laid bare that no guidance or rule book written is now fit for purpose in this scenario. Employers are looking to experts on occupational medicine to provide answers. As patients we looked to medical experts for answers. There were none. People with Long COVID found our own and are now co-creating pathways to healthcare. In the same way, we need to inform our return to work, alongside our recovery.


Healthcare has for some years now had aspirations to be more patient-led and patient-centred. Forward thinking businesses too have been re-engineering workplace design and culture to better enable employee engagement, inclusion and a healthy diversity of talent. The disruption caused by this pandemic truly is our opportunity to build back better; changing demographics and technology advances were already driving a revolution in healthcare to empower patients and workers. The approach to supporting workers’ return to health and work following COVID-19[24] will only further these aims if designed with them in mind. 


We are grateful to forward-thinking institutions like the National Institute for Health Research (NIHR). Their Long COVID themed Review refers to us as “experts by experience”[25] and their Webinars[26] advocate strongly for patient involvement. They recognise that these last 12 months patients have become the ‘experts by experience’. We’ve completed a Long COVID degree; facing daily practical challenges, swotting up on research papers and tackling some really tricky tests based on an outdated curriculum. Those of us running peer groups, reviewing NIHR research applications, speaking to media and consulted by researchers on PPI feel like we have unintentionally embarked on an unfunded PhD.


Long Covid Support are also grateful to the SOM, the CIPD[27] and other organisations sponsoring and supporting the critical dissemination of guidance[28] for all those affected. Unions too are supporting their members[29].  And to SOM for inviting me, and fellow group member Dr Clare Rayner, to share more from a patients’ perspective among an illustrious line up of medical professionals at the forthcoming SOM Online Summit[30] on 29th March.


However slow the path to recovery, while people with Long COVID are making progress, support, encouragement and trust that they know their own bodies and what they can and can’t do will improve function and capability to return to work. Our economic recovery is following a similarly slow pace, as we collectively put public health before profit. Could occupational health and HR professionals be instrumental in providing strategic support and advice to employers to look beyond short-term incapacity, to advocate for a strategic response that puts the health, wellbeing and diversity of our workforce at the centre of business recovery? COVID has shown that people are the economy, as illustrated in a short Women’s Budget Group video about the importance of having a caring economy[31]. How we treat vulnerable people is a mark of society, and an employer’s reputation[32]. Claims to value our employees, diversity and inclusion will now be tested.


Patient groups discovered[33] and made Long COVID visible, with support from medical groups. We now need the informed support of wider professional allies, like Long COVID physios[34], regarding our employment and safe return to work, to help us advocate for a response that is considered, inclusive and aligned with business values. 


How would you treat a previously good performer who got ill in March 2020, never had a COVID test but has tried, and failed, to return to their previous role? What would your advice be? 


If you start with ‘listen to the patient’, allow them to ‘plan their own recovery’ as far as possible and ‘be as flexible as you can’, you will give that person the best chance of both recovery and continued employment, in some form.


We don’t expect you to have all the answers to this new phenomenon. This is where patient groups, and the patients themselves come in. Please do follow up references made in this article, attend the SOM Summit and contact me and my colleagues at Long Covid Support if you still have questions. Questions about Long COVID and employment are as significant to long term impacts of COVID-19 on individuals, and society, as any currently being asked in healthcare and research. We all have work to do to answer them in ways that consider equality, fairness and sustainability.


Lesley Macniven MA, FCIPD is a Writer, Coach & Consultant. Lesley is a Long Covid Scotland Network Co-Founder and Co-Founder of Equality Starts at Home. Contact her on Twitter @lesleymacniven or LinkedIn.   


Download our COVID-19 return to work guide: For recovering workers here.