Managing Long COVID

In November 2020, NHS England , the executive non-departmental public body of the Department of Health and Social Care, announced that it would launch a network of more than 40 specialist clinics.

These were due to start opening at the end of November to provide support for the thousands who are experiencing enduring symptoms after being infected with the coronavirus (referred to as Long COVID). These symptoms include continuing fatigue, “brain fog”, breathlessness and pain.

Many thousands of people report they are still suffering symptoms weeks and even months after being infected.

Last August, for example, a survey by the BMA medical union questioned over 4,000 doctors in England about their experiences over the previous two weeks. It found that almost one third had seen or treated patients with symptoms they believe are a longer-term effect of having COVID-19.

Symptoms most commonly reported in both doctors and patients included chronic fatigue, reduced exercise capacity, muscle weakness, memory loss, concentration difficulties and loss of sense of smell.

In October 2020, researchers at King’s College London (KCL) published an analysis showing that one in 20 people with COVID-19 are likely to suffer symptoms for eight weeks or more.

Dr Claire Steves and Professor Tim Spector led the research, which focused on data from more than 4,000 people who have been consistently logging their health through an app and tested positive for COVID-19 through swab PCR (polymerase chain reaction) testing. This test gives a fairly accurate indication of whether or not people are currently infected with coronavirus. Steves and Spector found that older people, women and those with a greater number of different symptoms in the first week of their illness were more likely to develop Long COVID.

The research also identified two main symptom groupings. One was dominated by respiratory symptoms such as cough and shortness of breath, as well as fatigue and headaches. The second was “clearly multi-system”, affecting many parts of the body including the brain, gut and heart. Sufferers more commonly reported heart symptoms such as palpitations or fast heartbeat, as well as pins and needles or numbness, and problems concentrating or “brain fog”.

Most people with COVID-19 reported being back to normal in 11 days or less. But around one in seven had COVID-19 symptoms lasting for at least four weeks, around one in 20 remained ill for eight weeks, and one in 50 were suffering for longer than 12 weeks. The researchers say these are conservative estimates which, because of the strict definitions used, may underestimate the extent of Long COVID.

The Long COVID Support Group (LCSG), set up by people experiencing ongoing symptoms to provide peer support and share information, estimated that by the end of August, around half a million people in the UK were already living with Long COVID.

They include many who served on the front line of the response in the earliest days of the pandemic. The group also expects many more to become ill with subsequent waves of infection.

And it points out that the vast majority of people with Long COVID “were never hospitalised and never tested”. It also warns that “acquiring coronavirus can lead to long-term debilitating and distressing symptoms no matter your age, underlying health or fitness”.

The KCL research found that Long COVID affects around 10% of 18- to 49- year-olds who become unwell with COVID-19, rising to 22% of over-70s.

Action required on Long COVID

In a letter to Jeremy Hunt, the chair of the parliamentary health and social care committee, the LCSG and several partner organisations highlight six actions to address the urgent needs of those living with persistent, ongoing symptoms. Top of the list is improved (continuing) professional education. It says few medical practitioners are well informed and able to support people seeking help for continuing and worsening symptoms.

More and better research is the second priority. Tim Spector’s ZOE team (backed by health science company ZOE) is doing excellent work, it says, but there is an urgent need to scale up the full range of research including biomedical, psycho-social, and behavioural research.

The BMA’s demands include sufficient capacity to support and treat COVID patients, including a comprehensive long-term plan for the winter and beyond. It also called for the public to be informed with more clear and consistent information about the risks of infection and how to avoid it, with easing of lockdown measures informed by the latest transmission rates. Both the BMA and the LCSG and partners are also calling for employers to do more. The BMA said the government and the NHS must do more to protect the medical community from infection. A quarter of the 4,120 doctors who responded to the BMA survey believed they have, or may have had, COVID-19 and many reported continuing symptoms.

The LCSG says the government must improve economic support and social safety nets. It should also “help employers to understand why many of us need more time to recover and recuperate, with staged returns to work and appreciation of the relapses and resurgence of symptoms”.

By mid-November 2020, neither the employment conciliation service Acas, the Health and Safety Executive (HSE), nor the Equality and Human Rights Commission (EHRC) had produced guidance for employers on how they should support staff living with Long COVID symptoms. However, the EHRC provided a statement to Labour Research.

“Although we are learning more about COVID-19 every day, we are yet to see the full extent of the long-term health impact on those who have the virus,” a spokesperson for the EHRC said. “At this point, it may be difficult for employees to prove that the effects of the virus will be long term.

“But if the medical evidence suggests that the effects are substantial and will last longer than 12 months, employers will be under a legal duty to provide reasonable adjustments for employees who are suffering from Long COVID. [See box below.] Employees may find it easier to prove that the effects will be long term based on future medical evidence and as we continue through the pandemic.”

Employers should therefore work on the basis that Long COVID may be protected under the Equality Act in the future and should consider making adjustments for staff accordingly, the spokesperson added.

Many of the LCSG who are health and social care workers are “struggling to return to work in a way that lets us recover well and continue to serve the NHS”. It says the service must, like all employers, “make reasonable accommodation for its staff who are facing Long COVID” and should be a “beacon of good practice as an employer”.

“Trusts should be ensuring continuing access to full sick pay to reduce financial pressures and reassuring staff they won’t be penalised through sickness management processes,” said Sara Gorton, head of health at the UNISON public services union.

She added: “Especially as many people are likely to have contracted the disease at work, fast tracking access to rehabilitation and Long COVID clinics will be important to help get staff back on the road to recovery.”

UNISON wants employers to be sensitive and supportive with affected staff.

As well as fast-tracking to rehabilitation and long COVID clinics, this also means: removing financial pressures and worries by ensuring they continue to have access to full sick pay; ensuring that staff are not subjected to absence management processes and triggers; supporting phased and flexible returns and recognising that this may be a stop-start process; considering other adjustments such as working from home or adjusting hours or shift times.

Employers should also conduct individual risk assessments with any staff experiencing Long COVID and make reasonable adjustments for these staff, says UNISON. The union advises employers to follow its COVID-19 guidance for disabled workers and workers with an underlying health condition.

Paul Holleran, North West regional education and health and safety officer for the GMB general union, says employers and unions, preferably the health and safety committee, should develop short-, medium- and long-term strategies for dealing with the effects and impact of Long COVID.

Speaking at a recent Hazards Campaign talk on the challenges of Long COVID, Holleran reported that the GMB has a COVID risk register in place to capture information for benefit and personal injury claims.

He also emphasised the vital role of workplace reps in negotiating protection for workers with Long COVID, including decent sick pay, and reviewing absence management and grievance and disciplinary procedures in the light of COVID.

The UCU lecturers’ union published new guidance on Long COVID in November, setting out what the condition is, what potential health problems it can cause, and what branches can do to support members. UCU health and safety officer Alex Lancaster said most people affected by Long COVID have not been tested or diagnosed, and many were not hospitalised, “so they may have very little evidence other than their symptoms.

“In order to get employers to act, we need to raise awareness so they recognise how this is affecting people and impacting on them in different ways.”

Hazards Campaign chair Janet Newsham said: “It is a big challenge for unions and union reps. “There is a lot of work to do to educate managers about what they can do to support workers.”

She said unions have successfully used reasonable adjustment “disability passports”. These provide a live record of the adjustments agreed between a worker and their manager to support them at work because of a health condition, impairment or disability — and they could play an important role in discussions with employers about reasonable adjustments for Long COVID (see box on page 17).

There is a clear business case for employers to take action. As LCSG founder Clare Rayner made clear at the Hazards Campaign event, these are chronic conditions that will affect a lot of people for a long time. Employers who do not take action could lose valuable, experienced staff.

Holleran has called for a joint political, legal and industrial trade union campaign to tackle Long COVID.