Cancer nurse struggling with coronavirus sets up recovery website to help other patients

Jane Ireson, 42, is encouraging COVID-19 patients to share their own stories to illustrate that the road to recovery can often be an evolving and unclear picture.

It comes after Jane, who is also employed as a hospital cancer nurse, was diagnosed with COVID-19 on the first day of lockdown following a test at work, despite not displaying a cough or fever.

The virus caused unpredictable swings in her health where the most enduring symptoms have been breathlessness and fatigue. 

Jane, a mother-of-two, was left feeling better one day until then being struck down by another wave of the illness, with new symptoms to deal with like a rash or infection.

Things are now improving after 13 long weeks, but it is still not clear if the virus is behind her completely.

It is now recognised there are a small but significant number whose symptoms from Covid-19 will vary and persist for weeks and even months after falling ill, a group now known as ‘long-haulers’.

Jane decided to set up the patient-focused website based on her own experience after realising there was a lack of information for those who weren’t hospitalised or only showed mild symptoms.

It’s hoped by bringing to life the lived experience of the illness through story sharing, the website can help others manage expectations and deal with the personal impact of the infection – with eight people having already contributed.

Over time it’s then thought that these experiences might be used to form the foundations of more formal research projects into recovery journeys, as doctors try to understand what long-term health effects of COVID-19 look like.

Jane who qualified as a nurse in 2003 and has since worked in London and Sheffield specialising in cancer care, said:

“Many people who have experienced coronavirus are really struggling to understand their illness. With limited information out there, I found it to be a confusing and scary time, and we know the experience of the illness can vary significantly from person to person.

“There are a lot of people who are anxious and looking for information, so hopefully we can come together as a community to try and fill that gap as much as we can.

“It’s not a linear recovery and it’s not a straightforward experience, I didn’t have all the symptoms and other people will have had a different experience to me.

“I think it’s important to be open-minded about what the illness can be and how it can present, making sure you get help when you need it.

“We have still got a lot to learn about the illness and this website is hopefully going to help with that.”

The website is solely patient-focused and independent from her professional role as a Clinical Academic Macmillan Nurse Specialist.

Jane’s PhD research is about routinely capturing the lived experience of a rare cancer and making that part of the medical understanding of an illness, informing the way care is delivered.

In partnership with LBU, Jane is planning for future research around COVID to explore the lived experience of the illness through the stories shared on her website.

Georgina Jones, Professor of Health Psychology in the Leeds School of Social Sciences at LBU, said: “The website that Jane has developed is a testament to her commitment and dedication to try and help others in their time of need.

“Jane has not only given her time to care for patients, but by sharing her own experiences of recovering from coronavirus is working to help many more people.”

Patients can share their own stories by filling out a form on the website. For more information, visit https://covid19-recovery.org/