In 2020 Rhyan was 22 and had just graduated from university, excited to start his career.
“I still remember it very, very clearly. It was 10pm and for some reason my Apple watch kept pinging about my high heart rate.”
An out of hours GP service signposted Rhyan to hospital, where it was later confirmed he had COVID-19. Rhyan was kept in hospital for a week. By the end of the week he was almost ready to go home, but was kept over the weekend because of his persistent high heart rate.
“I was lucky because early Monday morning my oxygen levels dropped and I struggled to breathe. Doctors and nurses came flooding in, doing so much, trying to talk to me, take blood. That’s when I realise things had got quite bad.”
Rhyan was moved to intensive care and was only able to briefly see his Mum. “Seeing her gave me the strength to fight.” Rhyan eventually recovered enough to go home but felt the lingering effects of COVID-19 before the existence of Long-COVID had been established. Months later, he received an invitation to undergo COVID-19 rehabilitation, which he immediately took.
Researchers involved in COVID-19 rehabilitation were also in the process of setting up the PHOSP-COVID study, to understand and improve long-term health outcomes for patients who have been in hospital with confirmed COVID-19.
“That’s when I met Linzy who was my main rehab person. She motivated me and kept me going. She was a massive help. She asked me to be part of the patient involvement group for PHOSP. I just wanted to help people, especially my age who might have thought COVID wouldn’t affect them or even that it was a myth.”
Dr Linzy Houchen-Wolloff, Senior Research Physiotherapist and Therapy Research Lead, said: “Rhyan was clearly very motivated from day 1 to improve his fitness and get back to work following his COVID-19 infection.
“He has used his positive experience to benefit other patients who are coming through research projects and clinical services in Leicester by joining our patient and public involvement group.”
Rhyan continues: “Now I help whenever I can – I’ve attended meetings, reviewed a lot of documents, and knowing I’ve made an impact is great. I’ve been treated like an equal in the project, not just a patient.
“I’ve enjoyed learning more about covid studies and talking to charities and finding out how long COVID has affected people has been interesting. It’s all made me realise how serious it can be, I feel lucky that I can attend these meetings and have my voice heard for people who can’t.”
The PHOSP project has now finished recruiting participants, but Rhyan continues to help the team develop sub-studies to test interventions to prevent and treat Long-COVID.
If you’re interested in helping researchers design their studies email: NIHRLeicesterPPIE@uhl-tr.nhs.uk