Working with long COVID: Guidance for people professionals

'Long COVID' is commonly used to refer to Post-COVID 19 syndrome. Post-COVID-19 syndrome is defined by the National Institute for Health and Care Excellence in the UK (NICE) as ‘signs and symptoms that develop during or following an infection consistent with COVID-19 [which] continue for more than 12 weeks and are not explained by an alternative diagnosis’.

A wide range of symptoms are associated with long COVID. The symptoms experienced, their longevity and impact vary from case to case. There are also currently no proven treatments for long COVID, although there are some self-management techniques that may help relieve particular symptoms. Symptoms may fluctuate and recovery is therefore uncertain and not straightforward.

Fatigue is the most commonly reported symptom of long COVID. This includes low energy and extreme tiredness, especially after activity. Cognitive impairment, often referred to as 'brain fog', is also a commonly reported symptom. This may affect memory, speech, concentration and the ability to multitask and make complex judgements. 

Other commonly reported symptoms include:

• shortness of breath
• pain (including chest pain, muscle and joint pain)
• headaches
• sore throat
• dizziness and vertigo
• hair loss and changes
• digestive difficulties such as bloating, diarrhoea, loss or gain of weight
• autoimmune conditions
• insomnia or poor sleep
• heart rate changes
• blood pressure changes
• throat and voice symptoms such as sore or dry throat, altered voice, loss of taste and smell
• menstrual changes/early menopause
• allergy-type symptoms such as skin rashes, streaming eyes, blocked nose
• poor mental health (including anxiety and depression).

People with long COVID experience some unique challenges:

• Symptoms can vary, are overlapping and affect multiple systems in the body and so no two experiences are the same.
• Symptoms can hinder individuals from performing certain work-related tasks or impact their ability to perform them.
• symptoms can be unpredictable and fluctuate, characterised by periods of recovery and sudden relapse, sometimes with new or different symptoms.
• Mild symptoms can be followed by more severe symptoms that impact on ability to perform day-to-day tasks.
• Relapse is common and can be caused by physical activity, mental activity, stress, heat and alcohol.
• Symptoms can last for many months, and recovery can be gradual over many months.
• Individuals with long COVID may experience uncertainty due to a lack of clear diagnostic criteria, treatment or management plans. 

Importantly, many people report that their symptoms improve with time. Whether an individual is recovering or learning to live with their symptoms, there is need for ongoing support.

As a relatively new chronic health condition, many people with long COVID face great uncertainty as they wait for a diagnosis and an effective management plan. This has significant implications for sickness absence, return to work and ongoing work. 

Many employees awaiting diagnosis are not offered adjustments to help them stay in work as most organisations’ policies tend to be diagnosis-led, rather than symptom-led. This is a particular challenge for people with long COVID, as they risk not receiving the support they need to return to, and stay at, work. It also means that many individuals often return to work too quickly over a period of weeks rather than months. Consequently, their return to work is less likely to be sustainable and there are longer-term risks to their health. 

Organisations should adapt their health and wellbeing plans and policies to take these unique circumstances into account while continuing to adapt their support as we learn more about this condition. 

See the CIPD guide on managing a return to work after long-term absence for tips on reviewing your absence management policies to support people with fluctuating conditions.

Long COVID shares many characteristics with other long-term conditions. The CIPD guide on managing and supporting employees with long-term health conditions outlines key principles for creating a supportive workplace. These can be useful in planning support for employees with long COVID. These principles are described in more detail in the sections below.

• Managers play a vital role in supporting the health, wellbeing and engagement of their team. Research shows that employees are more likely to return to work and stay in work when they are supported by their line manager.
• Organisations that have good people management practices are best placed to enable employees to thrive when managing a long-term health condition such as long COVID. Good practices include inclusive recruitment and assessment processes, training and support for line managers to protect and promote health and work, as well as access to information and support through multiple channels.
• When managers manage well and build trust-based relationships with their team, they help to create an environment that is open, respectful and kind, in which people feel ‘psychologically safe’. This means individuals feel able to speak up about a health or work issue like long COVID without fear of criticism and in the knowledge they will receive support and understanding. 

• Many employees find telling others about any long-term health condition challenging. In the case of long COVID, this could be even more challenging because they may not be able to obtain a clear diagnosis or treatment pathway.
• Employees working in supportive environments are more likely to discuss a health condition, to ask for help when needed and to return to work following sickness absence. Build a culture of psychological safety, where good working conditions and open conversations are prioritised, and mental and physical health are given equal standing.
• It’s important to remember that it’s unlawful for an employer to ask any job applicant or employee about their health or disability and an individual doesn’t have to disclose a health condition. However, people often find that talking to others about their condition and its impact on their work can bring a number of benefits, including access to support and helpful work adjustments, improved working relationships and peer support, and feeling they can bring their real self to work. By communicating these benefits, organisations can help to foster an inclusive culture where someone is more likely to share their experience of long COVID.
• The CIPD people managers’ guide to mental health has useful tips and a conversation checklist to open a conversation about someone’s health and its impact on their work. 

Information on legal obligations for employers relating to health, wellbeing and absence is available in section 7 of the guide on managing long-term health conditions.

• Absence and return to work are often managed as a one-off event, but many employees with long COVID will need to take multiple absences as their condition fluctuates over time. Some of the most common approaches to managing absence in organisations include return-to-work interviews, trigger mechanisms to review attendance, and disciplinary or capability procedures for unacceptable absence. These approaches are often an additional stressor for employees with long COVID. Taking a flexible and individualised approach can help prevent unhealthy presenteeism.
• An understanding of the condition and its likely impact on a person’s capacity to be in work and to perform in work by their line manager should be the foundation of a more individualised and sensitive approach to managing absence.
• Line managers should also be sensitive to the affect that a diminished work capacity due to long COVID may  have on an individual’s sense of self. Many people with long COVID feel they are stigmatised and may thereby require affirmation that their experience is valid.
• The CIPD guide on managing a return to work after long-term absence sets out the guiding principles to follow when navigating the key steps to managing an effective return to work:

1. 1. maintaining communication while absent
   2. preparing for a return to work
   3. supporting the employee and manager during the immediate return
   4. supporting the employee and manager on an ongoing basis on return.

• Ensuring employees have access to appropriate work adjustments can help them to sustain work. The nature of an adjustment will differ depending on many factors, including the nature of the job, the organisation and the employee’s unique needs. It could be that someone needs a number of different adjustments. As the symptoms of long COVID are likely to fluctuate over time, different work adjustments may be needed at different times. It’s vital to have ongoing and supportive conversations to review work adjustments.
• Providing that the employee has given their agreement, it may also be helpful to contact the employee’s doctor, GP or consultant for advice about their condition and the most appropriate work adjustments that need to be made to enable them to remain in work.
• CIPD research on working with long COVID identified a number of specific work adjustments used by employees with long COVID to help them stay in work, such as:
  
  
  • home or hybrid working
  • other flexible working arrangements
  • reduced or off-peak commuting time
  • adapting work tasks to make them less physically, mentally or cognitively demanding
  • a wellbeing room for downtime during the working day. 

• Wellness action plans are a simple but empowering tool to look after wellbeing while working, and to help employers know how best to support employees. The plan sets out how an individual feels and behaves when they are well, what they need to do to maintain their wellness, any signs or triggers known to impact health, and the preferred action or response if these signs are noticed by others. Mind has downloadable wellness action plans that can be readily adapted for any condition.
• Health passports or a written adjustment agreement approach can empower individuals to manage their health condition with the organisation’s support.
• Specialist support from occupational health or vocational rehabilitation professionals can help employees stay well in work. Early engagement with specialists can help employees supplement advice and treatment from their healthcare practitioner with guidance specifically related to their work. In doing so, employees are better able to find strategies to manage their work and health, and work productively. 

• Typically, an individual with long COVID will need to make a series of adjustments to treatment regimens or lifestyle to manage their symptoms and keep well. These self-management strategies can play a vital role in enhancing work and health outcomes. However, many employees with long COVID, particularly during the (often challenging) early stages of diagnosis, are not fully aware of what self-management strategies will benefit them or how to access them in the workplace.
• Treatment or medication may impact an employee’s mood, behaviours or wellbeing and have several side effects. Self-management support in the workplace can help employees to develop skills and techniques to manage the impact of their symptoms and treatment. Different symptoms require different strategies, and self-management means different things to different people. Individuals will also have different preferences, but examples may include attending therapy or treatment sessions, completing cognitive fitness exercises, or using technology to remind people of appointments.

Everyone has a role to play in supporting employees with long COVID at work. 

The IGLOO framework for thriving at work, developed by the University of Sheffield and Affinity Health at Work, outlines the different resources at individual, group, leader/line manager and organisational level that can help an employee when managing a long-term health condition such as long COVID.

CIPD research on working with long COVID identified a number of recommendations for supporting employees with long COVID to return to and stay at work. These included:

Individual actions

• Wherever possible, employees with long COVID should prioritise self-care and take responsibility for managing their condition. This includes understanding their condition, being able to identify early warning signs of symptoms and knowing how  to manage their symptoms.
• Employees may need support to develop their ability to manage their condition effectively, for example in areas of self-management strategies, resilience and confidence in their ability to manage their work and health. 

Group actions

• Friends, family and colleagues play a vital role in supporting people with any long-term health condition, including long COVID. They can help them to identify early signs of onset and step in to support them in doing tasks that could exacerbate their condition.
• Employees are best able to stay in and thrive at work when their colleagues support them through constructive feedback on tasks, helping when completing challenging tasks and treating them as the person they were before experiencing long COVID.
• It’s important to agree with the employee what information about their condition and symptoms they would like to be shared with others, how this will be communicated and how they would like the team to support them. This helps to avoid misunderstandings and uncertainty. 

Leaders/line managers actions

• What leaders and managers say and how they behave can affect whether the employee feels able to manage their condition in work, to take early action to mitigate deterioration and, ultimately, to stay in work. Managers are often the first contact point, and responsible for day-to-day management of the employee. They are also key to providing access to work adjustments and the implementation of job modifications.

Actions taken by their organisation

• Organisations should design and implement compassionate and flexible absence management policies that accommodate individual needs.
• They should also be symptom-led rather than diagnosis-led when considering work adjustments.

Help and support from outside their organisation

• Outside services such as occupational therapy, physiotherapy, and long COVID clinics and support groups should be signposted so that employees with long COVID can access specialist support.

These actions are summarised in the checklist below. Use this checklist to see what you can do to help employees with long COVID. Read the statements in the ‘Do I…’ column. Answer ‘yes’, ‘no’ or ‘sometimes’, marking your answer in the column.

The prevalence of long COVID is a reminder that the effects of the pandemic will continue for some time. If people with long COVID don’t receive appropriate understanding and support, the risk is that work could exacerbate their symptoms, and some people could even fall out of work. 

It’s important that HR professionals review their existing provision to ensure adequate support for employees with long COVID. By embedding this support within their wider health and wellbeing framework, employers can help to ensure their support is sustainable and long term.

Working well with long COVID involves everyone taking a shared responsibility. HR professionals can share the guide for line managers with colleagues and employees long COVID, to support this shared responsibility.

This guide has been developed by Affinity Health at Work, the University of Sheffield and the CIPD, and outlines practical recommendations developed from the CIPD working with long COVID research. It draws on evidence and research with returning workers, line managers, occupational health, employment advisers, and rehabilitation professionals as well as HR professionals and the Long Covid Support group.