New resource for people living with Long Covid
Following an international study funded by the Chief Scientist Office in Scotland to explore what support people need after experiencing COVID-19, researchers at Queen Margaret University (QMU) have created a new resource containing comprehensive guidance for people living with Long Covid, service providers, and policymakers.
The one-stop web portal includes a series of podcasts featuring interviews with people who are living with Long COVID, providing access to resources, insight, and advice. As well as signposting services relevant to people experiencing symptoms of Long Covid, the portal provides visual and written access to recommendations emerging from our research to inform policy and service design.
According to the latest UK government statistics an estimated 1.3 million people in the UK are living with symptoms of Long COVID which are adversely affecting their day-to-day activities. Signs of Long Covid include fatigue, shortness of breath, loss of smell, loss of taste, and so-called ‘brain fog’.
Professor Cathy Bulley from the Centre for Health, Activity and Rehabilitation Research at QMU said: “Our research showed that people living with Long Covid were not feeling supported, despite the debilitating effect the illness has on their lives. Nearly three-quarters of those surveyed told us they found it difficult to access the help they need. They wanted to know where to find practical and trustworthy information about what to do and who can help with day-to-day life, money, and their health issues. They also wanted help to return to work.’
“It became clear that people want support from others in their situation, who are also experiencing Long Covid and the series of podcasts has proved an excellent and very accessible way to share personal insights and experiences. The interviews help to convey sympathy about the condition, and respect for how people are feeling. As well as sharing advice about where to turn, we believe they can go a long way to managing listeners’ expectations and chances of recovery.”
People living with Long Covid often have difficulties processing too much information at once, so each podcast episode is short, lasting about six to twelve minutes, and transcripts are available. In each podcast, Professor Bulley interviews occupational therapists living with Long Covid, and discusses how they are managing life and work. Because of their lived experience and professional expertise, the interviewees have some valuable suggestions. Each episode has links to a library of helpful guidance, including advice for workplace managers on how to support people to successfully return to work.
Professor Bulley said: “Returning to work is a priority for many people living with Long Covid, and workplace managers play a vital role in making it possible by making work adjustments so they can cope with both their job and their health and help them to feel valued when they are not at their best.
"Long Covid is not yet fully understood, and we felt it important to provide practical support for managers to increase understanding of the symptoms that impact day-to-day activities, and how they can fluctuate. Good communication between the manager and the returning worker is paramount for a successful outcome for employers and employees."
The Podcast series ‘Support after COVID-19’ is also available on most major podcast platforms.
Linda is a senior lecturer in Occupational Therapy, a role that involves teaching and learning, and lots of face-to-face time with students. Because of Long Covid, Linda has had to have leave from the job she loves.
Linda’s experience started in May 2020 when she became ill with COVID-19. She returned to work full time after 3 weeks and went on to complete her doctorate over the coming months, but still felt terrible. Her symptoms included a persistent sore throat, overwhelming fatigue, sleep disturbance, and she noticed cognitive problems, most noticeably with her memory, concentration, and planning abilities. Eventually, she had to stop working to focus on her recovery.
“A big thing for me has been the unpredictability of the condition,” says Linda in her podcast interview. “I live a full life, make lots of plans and I hate the unpredictability. Now, I may have four good days where I can manage normal life, then I will dive and sleep for hours through the day and be unable to get up. I’m just managing a day at a time.’
“I now plan my days with flexibility built-in and try to do one activity a day, sometimes two. I always rest during the day and don’t feel guilty about it, sometimes sleeping for up to two hours. I now understand that things don’t improve sequentially or predictably. It’s taken a shift in attitude to cope, without which, I would be too miserable.”
Linda lives in an area where there is no designated support for Long COVID. Excluded from specialist services by her postcode, she has worked out a way of regularly communicating with her local doctor at a time when access to GPs has been limited.
“An important part of speaking regularly with my doctor is that it helps to validate that I have Long Covid and I’m not just tired. I also have access to a vocational occupational therapist whose role is to support people in work with long-term conditions. We meet once a month which helps me put words to what is happening to me and understand the nature of the condition and confirm my experiences. It has given me a voice to communicate with my manager and employer to explain what is going on.” Linda was interviewed for Episodes one and two of Support after Covid-19 podcast series. She is currently undertaking a gradual phased return to work.
Living with Long Covid
- one in five people have symptoms after four weeks, and one in ten have symptoms for 12 weeks or longer. For some, symptoms may last many months
- symptoms can be unpredictable and fluctuate over time
- common symptoms include extreme fatigue, breathlessness, muscle and joint pain, chest pain and mental health problems, among others
Notes to Editor
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