Long COVID: what we’ve learnt
Amanda our Long COVID project lead takes us through what we’ve learnt from Long COVID, and what we’re doing to help people living with their symptoms.
As the world starts to emerge from the pandemic, there seems to be a collective sense of learning to ‘live’ with COVID-19. With over a million people in the UK living with the longer-term symptoms of COVID-19, we recognise that for some, the pandemic is far from over.
Many people are experiencing symptoms weeks or months after initially becoming ill with confirmed or suspected COVID-19. These symptoms are wide-ranging, from breathlessness and fatigue, to brain fog and trouble sleeping.
People are also suffering from emotional problems related to longer-term symptoms, such as depression and anxiety, all of which can have knock-on effects on other aspects of people’s lives, such as work, education and caring responsibilities.
Long COVID is used to describe signs and symptoms that last for a few weeks or months after having a confirmed or suspected case of COVID-19. Just how long it takes someone to recover from a COVID infection varies from person to person and Long COVID doesn’t only effect those who experienced severe symptoms.
What are we doing to help?
It’s been nearly two years since we at Asthma + Lung UK faced the challenge of how to support people remotely via a new digital offer. Since then, we have been busy creating resources to help people living with Long COVID and working with researchers to understand it in more depth.
Research
Since the start of the pandemic, Asthma + Lung UK has worked closely with the academic community to understand Long COVID. We are the lead partner on the UK’s flagship project to understand how Long COVID progresses, what might be done to improve outcomes and what might be its underlying causes.
The project, PHOSP-COVID, is leading the world in our understanding of this condition, as it recruited thousands of patients and linked institutions and data across the NHS to provide rapid understanding of this new syndrome. Without the NHS being a bedrock of academic research, this programme simply could not be done. A+LUK provided an important link back to patients and helped ensure the research reflected the needs of people with Long COVID.
Resources we have developed
When it became clear that people were developing and living with longer-term symptoms of COVID-19, we decided to utilise the health advice gap. Seeing what was needed at the time, we filled it with our own information that could help people living with what we now know as Long COVID.
This began life as the Post COVID Hub, which transitioned into the Long COVID health advice that now sits on the Asthma + Lung UK website. Over the pandemic we’ve updated our health advice and created new content, in line with the problems we know people have been living with.
This has included the development of a series of videos to help manage Long COVID breathlessness, alongside comprehensive advice on managing lung problems associated with Long COVID. As leaders in breathlessness advice and support, this is the area we have been able to support on to the greatest extent, with Asthma + Lung UK already having a wealth of breathlessness advice, which we have been able to apply to Long COVID.
However, Long COVID is a multi-system condition with a range of symptoms, not just breathlessness. We needed to ensure the tool provides the comprehensive advice for the diverse needs of people with the condition. With the help of NHSE&I and our charity partners, we created My Long COVID Needs, an assessment tool to help people identify and prioritise the physical, emotional and practical problems they’re having while living with Long COVID.
The answers are summarised into a simple report, listing a person’s needs with suggestions of what to do next and links to further information and support. More than 70 people living with Long COVID gave feedback and helped test the tool, which we’ve used to make changes in the beta testing phase.
After listening to what you need, we’ve added:
more links to UK-wide resources
more advice on managing your emotional wellbeing
added tips on keeping up a healthy lifestyle
information on social prescribing and how to access a link worker
more advice on returning to work.
My Long COVID Needs is a work in progress and the site will change as the months go on, depending on the feedback we receive.
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