'Five years of long Covid - I fear it will never go'

Five years on from falling ill with Covid-19, Sue Snelson, a retired critical care nurse from Scunthorpe, explains how she has been affected by ongoing symptoms, and fears her condition is only going to get worse.

"I'm sorry for taking so long," says Sue, as she answers the door.

We head to the living room to talk more about her health.

"I get short of breath, even walking a short distance. Going upstairs is difficult," she says.

"I still have very painful joints. Poor sleep and poor memory. You can tell me something today and I won't remember it tomorrow."

Life has changed for Sue Snelson - a former critical care nurse in Scunthorpe.

She believes her issues stem from a Covid-19 infection.

"It's a continuation of the symptoms that I had right at the very beginning. It's never stopped. It's never gone.

She caught the virus in May, 2020 - almost five years ago.

"I was in A&E, looking after a patient who had symptoms, and the anaesthetist said, 'can you get them a bed in ICU?'

"And then, he said, 'I need to see you. I think you've got it too.'

"I was aghast."

Her memory of being diagnosed with the disease is very clear. So too is the fear that she and other people felt at the time.

"I hadn't seen anybody come out of it well.

"So I was just absolutely terrified, because I thought, I'm going to die."

Sue was very ill and had pneumonia. She spent 12 days being treated by her colleagues on the ICU.

So when she did recover, it was a huge relief. Her colleagues at Scunthorpe General Hospital lined the corridors and applauded her when she finally left to go home.

But that, says Sue, was not the end of coronavirus for her.

"It was very gradual, but probably about a month or so on, I was thinking, I should be getting over this by now," she says.

"I started to worry that there was something else underlying that I didn't know about because, at that time, nobody had really ever talked about having long Covid."

Sue managed to return to work - though into a different role. She only retired last year. But her working life didn't end as she would have wanted - months of feeling unwell had turned into years.

"Now when we're getting to sort of five years on, I have this feeling that it's just going to carry on," she says.

"That's my constant fear - that I'm going to get less and less able."

I suggest there might be people who will read this and say - 'it was five years ago, it can't be to do with Covid.'

"I would have been one of those people who would have said that at one time," says Sue, "but I think the reality is it is a consequence of that.

Sue is not alone, but there can be a range of symptoms - one reason why estimating how many people have long Covid isn't straight forward.

The Office for National Statistics (ONS) found in March 2023, there were around 1.9 million people in the UK self reporting the condition.

Of these, 762,000 (41%) had (or suspected they had) Covid-19 at least two years before.

Fatigue was the most common symptom, followed by difficulty concentrating, muscle ache and shortness of breath.

New research has revealed the number of NHS clinics for people living with long Covid has more than halved.

The Humber Long Covid Treatment & Assessment Service, which supported adults with more complex rehabilitation and recovery needs ended in March 2024, due to a significant reduction in referrals.

However, patients can still access rehabilitation services.

Sue's life has been affected - she feels she missed out on things with her grandchildren. Now with her husband due to retire, the days out and travel they used to enjoy, have to take her mobility into account.

But she is also determined.

She slowly heads upstairs to find a few photographs for me. She has refused to get a stairlift.

"I keep going," she says "You know, I'm determined not to let it beat me altogether."

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