Long Covid, or post Covid-19 condition, was formally defined by the World Health Organisation (WHO) in October 2021 after emerging from the Covid-19 pandemic. In January 2022, the Office for National Statistics estimated that 1.3 million people may be living with long Covid related symptoms, with fatigue being the most prevalent. We now know there may be over 200 long Covid symptoms in 10 organ systems which can heavily impact on people’s everyday life. In July 2021, the National Institute for Health Research (NIHR) funded 15 research projects to help diagnose and treat long Covid. One of these was the Long CovId personalised Self-managemenT support co-design and EvaluatioN project – or LISTEN for short.
LISTEN is a two-year research project jointly led by Professor Fiona Jones of Kingston and St George’s, University of London, and Professor Monica Busse of Cardiff University. Adopted by the NIHR Applied Research Collaboration (ARC) South London, the project aims to work in partnership with individuals living with, or supporting those with long Covid, to co-design and evaluate a personalised self-management support intervention. The project has several phases: a co-design phase where an intervention comprised of self-management resources and rehabilitation training for practitioners is developed, and a randomised clinical trial which will recruit around 558 adults living with long Covid from across England and Wales.
Six months in, we are coming to the end of the co-design phase with the LISTEN intervention almost complete. Across eight virtual group meetings and 12 one-to-one interviews, we have listened to the experiences of over 25 people who have or have had long Covid, and nine rehabilitation practitioners who have supported people living with the condition. At times, these have been challenging experiences to hear, and stories have been overflowing with feelings of uncertainty, fear, shame, and burdensome physical symptoms. To engage with people from marginalised, seldom heard groups, we have connected with charities and organisations such as Diversity and Ability and National Voices, and provided alternative methods (e.g., one-to-one informal telephone and virtual discussions) to listen to their experiences.
By working with, and really listening to the collective ideas, needs and priorities of people with long Covid, and rehabilitation practitioners, we have co-designed a practical resource book in paper and accessible digital versions, and a series of one-to-one rehabilitation training sessions. Together, these form the LISTEN intervention that we will be evaluating in the coming 18 months.
Taking this opportunity to stop and reflect, we have learnt a great deal from our co-design participants. Firstly, while appreciating the lack and disparity of healthcare support, we did not anticipate just how ignored and unheard people with long Covid feel. For many, we provided the first safe space in which people felt able to tell their story uninterrupted from start to finish and feel listened to. During the interviews specifically, many participants expressed substantial gratitude for allowing us to let their story be told, and to breathe. People further found solace in group meetings where they found validation and reassurance through connecting with others who understood and believed them. Although co-designing the intervention was the primary aim, participants’ feelings of being heard and validated illustrate the empowerment of co-production for people who described feeling like they had been “stuck on a mountain top without a torch, in the dark”.
People with long Covid have further helped us to understand the influence of the wider context and the Covid-19 pandemic on their experiences. They have explained how they feel political action and inaction has resulted in their long Covid, and how this has led to feelings of injustice within the long Covid community. It was only by listening to peoples’ experiences that we realised how important these feelings were to people’s interpretations and views of their condition; many people felt they could only move forwards after accepting that developing long Covid was not their ‘fault’. As a result, this injustice is acknowledged within the LISTEN resource book and the training for rehabilitation practitioners.
It feels like I shouldn't be in this position. I didn't go to a nightclub, I didn’t meet up with anyone, my kids had no social life, everything stopped, and I did everything right, and I still got it. For a resource to acknowledge not just the pandemic, but 'this is a thing you tried to avoid and you're still in this position', I think that would be incredibly powerful
Finally, we have observed the power of collective experience in the absence of effective medical treatments for long Covid. Continuously learning first-hand about the condition, and what does and doesn’t work, people have described that although everyone’s long Covid is unique, through the collective endeavour, there is always more to learn, and crucially, to try:
There’s still so many unknowns with long Covid. The only knowns are from other people who have had it
Ultimately, collective experience can be the illuminating for people with long Covid who were previously isolated and lost. This is captured in the resource book, where people with long Covid share advice and ideas for navigating their everyday lives they would have valued earlier in the journey, as well as now.
The co-designed LISTEN intervention will be delivered as part of a randomised control trial across sites in England and Wales from April 2022.