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On this page, we share guidance and advice for our members living with the condition and those who support them.

Ngaire Cox is an RCN steward and has supported a number of members to successfully return to work while managing their Long COVID symptoms.

There are two cases that stand out. Both caught COVID during the early part of the pandemic when nobody understood the possible long-term health issues and how to treat them. Many would try to return to work, but relapse, or find that they didn’t have the stamina to carry out their normal duties.

One of our members, desperate to regain her health and get back to work, contacted me early for advice around the sickness absence processes. She was pursuing private, fairly experimental, treatment outside of the UK. She had contacted me early and so, as well as giving her advice and signposting her to the right services and resources, I made sure I was at all the review meetings and available as a point of contact.

I was able to advocate for her but was very aware that she was the expert in her condition and her lived experience should ultimately guide us. It was also important to make sure that the treatment and advice she was getting from the clinic was acknowledged as credible and taken into account. When she was able to return to work, we negotiated reducing her hours and put some reasonable adjustments in place to help her manage her fatigue.

In the other case, the member had a very physically demanding role - driving from patient to patient – and that made a return to that job impossible. We were able to find her a different role that was more sedentary and in a fixed location. The challenge with that case, was that I came to it very late in the day. They had already been off sick for a very long time, and it had reached a crisis point with the employer considering terminating their contract. 

Members often feel that they can manage things on their own, but employers can be very quick to progress sickness absence processes. If a rep is at meetings, they will have the confidence and the objectivity to say: ‘Bear with us. Be patient. We think this can work itself out. This person has significant nursing knowledge and experience, please don’t be so quick to let them go.’

Support and adjustments can be put in place to help make sure that a return to work - from any long illness - can be successful. It is also worth contacting your local NHS Long COVID assessment centres as their recommendations can be vital in securing reasonable adjustments.

As a rep I know what I can do, but I also want to keep working in partnership with employers to make sure that line managers have the guidance and the key skills to help them to play their part.

Lesley Cunningham is a full-time RCN steward. She has been supporting a member, following a diagnosis of long COVID.

For a while I’d been supporting one of our members who had a range of different physical health issues, helping her to stay at work in a health surveillance role, with a hybrid model involving some working from home.

During the pandemic, although she should have been shielding at home, unfortunately she was required to attend her workplace, rather than working remotely. As she didn’t drive, this also involved taking public transport, potentially increasing the risks of contracting COVID – which is what happened. But she recovered and came back to work.

Sadly she became unwell again, at which point her GP diagnosed her with long COVID. It’s been quite devastating for her and she’s been unable to return work since 2020. Healthwise, it’s been hugely debilitating, impacting her respiratory, cardiology and neurology functions, alongside her existing chronic conditions. Financially, although initially she was on full pay, then a period of half pay, since last autumn she hasn’t received any salary.

However, she’s now been deemed unfit to work and we think she is the first person in the UK to retire early through ill health, caused by COVID. As her RCN steward, I’ve supported her throughout the process, involving outside agencies as necessary so we could ensure we’re doing the right thing for her.

Although I feel she still has a lot to contribute, it soon became clear that seeking alternative employment just wasn’t an option, as she can only function for about an hour-and-a-half without having to have several hours of rest, because she’s exhausted.

I’ve supported three members now who have long COVID, managing to secure alternative roles for two. It’s a very individual condition and needs tailor-made solutions designed around each person. Our knowledge of the long-term effects of COVID is growing all the time, but it’s still at the very early stages of research and we don’t understand enough yet about how it affects people and who might be at greater risk.

For our member, this is a great result as it’s removed so many anxieties about the future, giving her much more financial stability. At one point, she thought she might have to leave her home as she couldn’t afford to stay there. Receiving a regular pension will make such a difference to her quality of life and is a big relief.

She is someone who has given a lot to the NHS in Scotland, who is a nurse through and through, so I’m delighted that we’ve been able to help her achieve this outcome that will support her during the next stage of her life.