Long COVID patient helps develop research study into condition
Listening to patients is crucial when it comes to their care.
But it’s not just during treatment that clinicians listen to patient feedback – it also provides valuable information for new research studies into certain conditions.
That’s exactly what happened when Nicola Marsden developed Long COVID.
Nicola became ill with COVID-19 in April 2020. Before masks, before the vaccine and before anyone knew the long-term impact of the virus.
Her own experience with the condition helped shape a new research study at ESNEFT to understand what it’s like for people living with Long COVID.
Nicola said she was incredibly poorly for months, having to stop work and rely on her daughter to look after her.
She said: “I couldn’t even sit up for about six months. I couldn’t walk, I lost my speech, I couldn’t write my name. I was exceptionally unwell.
“My 14-year-old daughter had to become my carer. She was cooking for me, cleaning and had to do home school herself.
“I just kept getting worse and worse but I wasn’t dying.”
Nicola said no one knew at the time she’d developed what has now been labelled Long COVID – a long-term condition as a result of the virus.
Nicola had to take long periods of time out of her job as a PALS and complaints officer, and has battled with the condition which has left her with extreme exhaustion, cognitive issues, a heart condition and many other symptoms affecting her organs.
She is still unwell, but felt there was so much more for her and the healthcare system as a whole to learn about the condition that’s having such an enormous impact on so many people.
She added: “I’ve felt very desperate at times, and as I work for the Trust I knew there was a research department – so I emailed them, shared my situation and asked if I could use my experience to help them and others through my experience.”
Kate Harrall replied.
Kate Harrall, allied health professional (AHP) and clinical academic research lead
Kate with her colleague Rebecca Impson, both allied health professional (AHP) clinical academic research leads, set about pushing forward a research study into the condition.
With the input from Nicola about her experience, the team worked together to design a questionnaire that could be sent to other willing patients with Long COVID.
Kate said: “We wanted to do something to help patients in the same position as Nicola and it’s been a really positive step in pushing forward with our own research at the Trust.
“The study is a longitudinal observational study focusing on the experience of the participants with the condition. We’re asking them to share the impact of the condition at regular intervals so we can see how their condition changes over time, and if there are any links or similarities.
“Talking to people at different points over several months is also helping us get a deeper understanding of how it’s impacting them.”
Kate said the Research Team is working alongside clinical services and hoping the results of the study will help future care and treatment for patients.
She added: “It’s changed some of the ways in which we have continued with the research. We didn’t initially realise the extent to which people were suffering with anxiety and depression as a result of Long COVID. We sought the advice of the clinical psychology service who advised signposting our participants to wellbeing teams, crisis services, and to inform their GP to ensure they’ve had the support they need.”
Rebecca Impson, allied health professional (AHP) and clinical academic research lead
Rebecca added: “Long COVID, as well as COVID, has had a huge impact on everyone and this research is important for understanding what that means for people and their lived experiences of the condition.
“We know – as Nicola has experienced – that recovery isn’t just a continuous upward journey, but is very up and down. Initially we thought the study would go on for a little over a year, but we’ve already extended it to collect data for three years after initial COVID infection, as it become apparent after our first contact with patients that the impact on people’s lives was continuing for much longer that it was initially predicted.
“We want to then embed this work into how we go on and care for patients.”
If you are living with Long COVID and would like to find out more about this research trial, please contact R&D@esneft.nhs.uk