Why is Long Covid so hard to diagnose? And what can employers do to support workers who are suffering? Our Clinical Governance Officer, Suzanne Marshall RN OHND shares her learnings from a real-life case study.
After the initial shock of the Covid pandemic, stories started to hit the headlines of patients whose debilitating symptoms just wouldn’t go away. Derek Draper, for example – a former political aide, and husband of TV presenter Kate Garraway – was hospitalised in March 2020, only returning home a year later, still unable to talk and receiving around-the-clock care. And last week we heard the tragic news that Jason Kelk, the UK’s longest-known Covid patient had died, choosing to end his treatment after more than a year on ventilator support in a Leeds intensive care unit.
These high-profile cases are well known, but as with so much about ‘novel’ – literally meaning ‘new’ – coronavirus, there’s still very little known about Long Covid itself, leaving employers asking how best to support affected employees.
What is Long Covid?
NICE, The National Institute for Health and Care Excellence, use a variety of definitions in their guidance for managing the long-term effects of Covid:
- Acute COVID-19: signs and symptoms of COVID-19 for up to 4 weeks.
- Ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from 4 to 12 weeks.
- Post-COVID-19 syndrome: signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.
In addition to the clinical case definitions, 'Long COVID' is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. It includes both ongoing symptomatic COVID‑19 and post‑COVID‑19 syndrome (defined above).
These definitions raise two inherent challenges in confirming cases of Long Covid: firstly, the timescales involved, and secondly, the fact that the patient may not have been aware that they’d been infected at all… And without a positive diagnosis, there are barriers to accessing the correct support.
A Long Covid case study
I recently met with a Long Covid sufferer and FirstCare member, and with his consent, compiled notes of our conversation as a reference case study.
The member is a young, healthy, and active male in his early 40s, with no concerning medical history or previous medication, who hadn’t been ill or needed to see a doctor in years. He and his partner have both been particularly careful to socially distance, being wary of her existing health condition.
Before lockdown, in March 2020, the member’s partner attended a social event, and both she and he felt a little unwell the following week. Much later in the year, around Christmas, they met with family, outdoors in a park. And on New Year’s Eve, the member collected a takeaway. So, it’s most likely that he was exposed to Covid in late December or early January 2021.
The member began to experience symptoms of Covid, so he arranged to be tested. After a six-day wait, the result was inconclusive. A second test came back negative, but his symptoms were getting worse and he attended an out-of-hours clinic, where the on-duty doctor informed him “you have had Covid”. He was prescribed antibiotics to prevent secondary chest infections and sent home for bed rest. The member describes his joints and limbs as feeling like ‘heavy lead’ at that time.
By mid-February, the member was beginning to feel a little better, so he attempted a 30-minute walk with his partner. He began to feel dizzy and short of breath. They called 111 who sent an ambulance. The paramedics advised him to continue to rest and take it easy.
The member has a good work ethic and was keen to return to work, but unfortunately was not ready and had to go absent again. He had become short of breath during a meeting and was taken to hospital following a 999 call from his partner. A chest X-ray and blood tests came back normal, but the member’s consultant decided to refer him to one of the few NHS Covid Respiratory Clinics in late February. The following day, a further set of blood tests found that the member was borderline vitamin D deficient, which the doctor put down to lockdown and the winter season. However, the member had been taking vitamin supplements for many months before.
What are the symptoms?
The member describes that his illness has affected him in many ways, which his specialist has helped him to categorise into three main areas:
- Cognitive – brain fog, stutter.
- Physical – severe fatigue, hoarse voice, joint and muscle aches/pains, shortness of breath, tinnitus, dehydration (drinking two litres per day) and dizziness.
- Emotional – the shock of feeling so ill for so long, anxiety, and fear for his future recovery timeframe.
During our conversation, I noted the slow but steady deterioration of his condition. His eyes became dark and his face very pale, the stutter worsened and the ‘brain fog’ became more apparent. It was obvious that he tires easily and that he can only manage to talk and focus for short periods of time.
Interestingly, he says he’s never been ‘bored’ since getting Covid; this is how he knows he is so unwell – his symptoms are never far away, and his body is just so desperate to rest.
Diagnosis and management of Long Covid
A referral to the Covid clinic is formed of three elements:
- A 90-minute telephone assessment to diagnose Long Covid
- On-site physical assessment and testing
- Referral to a local therapist, such as physio etc.
At the time I spoke to our member, he’d had his telephone assessment, but a month later was still waiting for a date for his on-site appointment.
He has been told to ‘not let his batteries go under 50%’, as it will be harder for him to re-energise. To help him pace himself throughout the day, the specialist advised using ‘the spoon theory’ (explained in a great infographic here).
The member has an app on his phone to report his daily symptoms. He is attempting to do some post-Covid physiotherapy for himself and takes ibuprofen for the muscle pains.
He describes his recovery road map as “up and down”; one day is good and the next day, not so much. He points out that there is so little known about the recovery from Long Covid that it makes him worry about slipping back.
When we spoke, the member had recently had his first dose of the Covid vaccine, and immediately suffered with severe symptoms lasting 48 hours. I wondered – if his body is still fighting the virus so much and still in recovery – whether delaying his vaccine might have been the better option.
I was surprised at the extent that management of the member’s condition focussed on physical aspects of his health, with little in the way of mental health support offered. Fortunately, in this case, his family is incredibly supportive and the member himself is being very sensible.
What can employers do?
Despite his ongoing debilitating symptoms, our member has returned to work on a reduced hours programme, which he feels has been incredibly supportive, and he is now about to attempt his first full week. To support him further, he is due to have a workstation equipment assessment to assess his comfort working at home.
While the specifics of treating Long Covid are still emerging, there are a number of common-sense steps that employers can take to support employees with confirmed or suspected cases:
- Educate your staff on Long Covid symptoms: make line managers aware of the signs and effects of Long Covid, and the available treatments, to support affected employees through the process. Some Long Covid symptoms align with widely known signs of coronavirus, but don’t forget there are cognitive and emotional effects too – all of which can spiral without support.
- Add Long Covid to your absence policy: ensure affected employees are not treated less favourably because of their illness, and consider the reasonable adjustments you could put in place to support them in their work – a phased return, for example, or a flexible timetable that accounts for ups and downs in the employee’s condition.
- Signpost your support services: in our member’s case – and in light of the skew towards physical health support in his NHS treatment – we ensured he was aware of the counselling support available via his employer’s Employee Assistance Programme (EAP).
- Don’t delay! Make fast-track Occupational Health (OH) referrals: our member’s case highlights the ongoing pressures that NHS services are facing in responding to the pandemic, and the delays that people suffering from Long Covid might face in getting diagnosed and accessing support. Referring to OH as soon as possible will help to speed up their treatment and recovery. You may even consider private referrals to cut down on wait times.
- Minimise the risk of infection in your workforce: our member was extremely cautious to avoid the risk of Covid to himself and his family, but there is no failsafe way to evade an invisible virus. Fortunately, workers are now able to access the national vaccination programme, and some employers – such as Amazon – are going even further and paying for on-site vaccination events to protect their staff.
- Use FirstCare: with our 24-hour absence and advice line, your employees have around-the-clock access to registered nurses, trained to spot early indicators of Long Covid and a myriad of other conditions. We ensure our members get the best medical advice and signposting as soon as they need it and can make fast-track referrals to your wellbeing providers without delay.
Let’s not risk Long Covid being mismanaged in the same way as Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), where it’s reckoned 80-90% of cases remain undiagnosed, and people remain ‘in the system’ for years before recovering.