I am a specialty doctor in anaesthetics and intensive care. I caught probable COVID-19 in March and despite not requiring hospitalisation experienced a horrifying illness and am left with ongoing symptoms including breathlessness and chest pain, which presents a serious challenge to my quality of life and ability to function.
I have tried hard to help raise the issue of "Long COVID" amongst people that avoided admission to hospital and have collaborated with others living with the condition to achieve this. We have interacted with researchers, clinicians, politicians, the global health community and the media to try to ensure that the voice of people affected by the long-term symptoms of COVID-19 is involved in informing the design of research, the commissioning of clinical services, broader policy decisions and the media narrative around the risks of COVID-19. I have written of my personal experience and issues pertaining to patient safety and collaborated with other doctors in a letter to the British Medical Journal. I gave evidence to the All Party Parliamentary Group on Coronavirus and am collaborating on a living systematic review of the evidence base surrounding the long-term symptoms and complications of COVID-19. I have been appointed a community and civil society representative to the diagnostics pillar of the World Health Organisation's Access to COVID-19 Tools Accelerator (ACT-A). Through my own experiences and my conversations with others affected around the world, I have come to understand the importance of the principle of "nothing about us without us" in a particular way. It is a principle with a long history of being effective in managing other diseases and I have seen how research and clinical services are improved by learning from those affected by Long COVID, especially in the context of so much uncertainty and emerging information.
My priorities now are to ensure that morbidity due to COVID-19 is accurately recorded and measured (i.e. count Long COVID), to ensure that clinics are provided that address/rule out underlying and/or non-COVID pathology (including in non-hospitalised individuals), and that the biological mechanisms underlying the persisting symptoms of COVID-19 are made a priority for research.