Living with Long Covid and the role of Occupational Therapy

and Sian Burgess

Most people will have known, or know of someone, who has been diagnosed with Covid-19. In whatever way the Coronavirus pandemic has affected us, we will all have dealt with and experienced the impact differently.

However, we are becoming increasingly aware of the number of people who are living with ongoing challenges following their initial infection, and rehabilitation services across the UK are beginning to consider and plan how best to deal with this evolving new condition of post-Covid-19 syndrome, or ‘Long Covid’. 

Those people diagnosed with Long Covid are living with a range of symptoms and challenges which span the areas of physical, sensory, cognitive and emotional functions. The condition is thought to occur in approximately 962,000 people living in private households in the UK, or 1.5% of the population (ONS 2021), with symptoms lasting more than four weeks.  

Different degrees of symptoms are being experienced, and these can jeopardise pre-existing health conditions, life roles and, in some cases, a return to work. Some people will also have experienced increased anxiety and isolation, impacting on their ability to engage socially with family, friends, and their local community.

It is this difference in long term symptoms and the unknown outcomes which have been the starting point for many health services and staff teams. Many NHS trusts were quick to respond, setting up Long Covid clinics to support and advise people diagnosed with it. In October 2020, the Chief Executive of NHS England announced that £10 million was to be invested to help set up Long Covid clinics across the country.

The current challenge is ensuring these clinics can meet demand. Recent findings show that a third of people who had Covid-19 report symptoms lasting 12 weeks or more. This may amount to over two million people in England (Gov.UK 2021).

Occupational therapists are well suited to working with people with symptoms of Long Covid. They work with people of all ages and are experts in supporting those who have difficulties carrying out day-to-day activities (occupations), habits and roles because of a disability, an illness, a long-term condition or ageing.  

These complexities can be the result of physical or mental health, or social impacts. The role of an occupational therapist is to understand a person’s motivations and goals and help identify aspects of their lives which hold meaning to them. As a result, occupational therapists can then facilitate and support them to understand how to live with their symptoms post-illness and establish new goals, routines, and habits to live a meaningful and purposive full life (RCOT 2021).

To demonstrate, let us consider the effect that Long Covid has had upon one sufferer:

“The first symptoms I noticed were dizziness, earache, and very dry eyes. It was only on day four that I developed a cough and was sent for a PCR Covid test – when it came back positive the next day, I was stunned. Although I became quite unwell, and had to call the paramedics out one night, I was extremely lucky not to be hospitalised.

“After six weeks of little change in symptoms, I was referred to the Long Covid Clinic, had blood tests which came back clear and a chest x-ray, which showed I had Atelectasis – a partially collapsed lung which was putting additional strain on my heart. I have been told that my autonomic nervous system is dysfunctional which means I am breathless, fatigued, regularly have a racing heart. I am dizzy when I move, unable to regulate my body temperature and have a lot of chest pain and swollen joints. I cannot focus, concentrate or talk for long periods of time; I also cannot produce enough tears – I cannot cry.”

In these initial stages of the illness, intervention is predominantly medical and focussed on preserving life. Individuals are often not able to be with their family or friends. These experiences may impact on them psychologically and emotionally. In addition, many people are left with extreme fatigue and shortness of breath, alongside pain, and changes in sensory systems including perception.

Occupational therapists can help people understand how to pace activities differently in these initial stages. They may support people in understanding those initial medical stages to help them make sense of their experiences and manage their symptoms of anxiety which have resulted from these interventions and stages of diagnosis.

Living with a long-term condition requires life adjustments. For some people this can mean psychological or environmental adjustments, or both. These can be significant life changes for some people, impacting on their finances and relationships. Occupational therapists understand the distress that life changes can bring. Their skills in supporting people to understand this impact while retaining key roles, identities and purpose are key to facilitating the process of beginning to live alongside and managing their long-term symptoms.

Here is the perspective of another Long Covid sufferer on the changes to their life and the role of occupational therapy:

“Work gives me an important structure in my life. I am someone who has always had to keep an eye on my mental health, and I have had good solid wellbeing strategies for recognising and addressing the signs of anxiety and low mood. These strategies however have had to change dramatically because of Long Covid, because I do not physically, psychologically, or emotionally have the energy to engage in them.

“I am a positive person by nature, but no one in the medical profession can tell me how long I will be unwell for or how much better I will get from Long Covid and that is scary.

“I am grateful for the occupational therapist friends and colleagues, who have helped me manage my limited resources for occupational engagement and see the things I still can do.”

In December 2020, the National Institute for Health and Care Excellence published a guideline for managing the long-term effects of Covid-19. The Royal College of Occupational Therapists has also published information available to the general public on recovering from the virus and how to live with post viral fatigue.

The vocational rehabilitation team at University Hospitals of Derby and Burton NHS Foundation Trust has produced a range of videos to support individuals and employers in assisting people to return to work. These can be viewed at www.bit.do/Derby-videos.

There are many free resources available to the public and sometimes working through them can be overwhelming. Occupational therapists can help people view these from their own experiences and support them in personalising this information to their own situation.

Occupational therapists understand how important it is for the health and wellbeing of individuals that they can continue to have a valued role in their families, communities and society.

Adjusting to living with any long-term condition is challenging. Occupational therapists are uniquely placed to understand these challenges and work with individuals and communities of people to ensure the best outcomes are achieved to enable people to live life to the best of their ability.

For more information on studying Occupational Therapy at the University of Derby, visit our website.