Sarah Davidson* woke up on the Covid ward at Bolton Royal hospital in March to find she had been turned on to her belly. She had watched enough news reports to know what that meant. “The nurse from the critical care team turned up and said: ‘It’s for your lungs, your breathing stopped’. They pronged me for days and days. I was like a rotisserie chicken,” she said.
“The person in the next bed died. I thought people would be dying upstairs on intensive care, but they were dying around me on the Covid ward,” she said, explaining why she had been diagnosed with post-traumatic stress disorder (PTSD) at Bolton’s long Covid clinic. “I have this habit now, I wake at about 4am and I think, you know what, I’m alive. I’ll stay awake, I’m not going to go back to sleep: why push it?”
The 57-year-old teaching assistant is one of 285 patients undergoing extensive therapy for long Covid in Bolton, one of the local authorities hardest hit by coronavirus in the UK. Almost 40,000 people in the Greater Manchester town have tested positive for Covid over the pandemic, just over 20% of the local population. In May Bolton found itself once again in the eye of a Covid storm as the first place the Delta variant took hold.
Bolton’s health leaders believe they will be dealing with the fallout from Covid for many years to come. They do not know how many Boltonians will develop long Covid, but a report in June estimated that 37.7% of people in England who had symptomatic Covid experienced at least one symptom lasting 12 weeks or more – equivalent to 2 million people. Almost 15% experienced three or more persistent symptoms.
In January Bolton started its first long Covid pilot clinic, offering a mixture of group and individual therapy for the three main symptoms: respiratory issues, fatigue and speech difficulties. Of the 60 patients who took part, 45% were able to return to work and 43% felt well enough to resume hobbies.
It was deemed enough of a success to fund a full service, using £100m the NHS has invested in treating long Covid nationally. It operates out of Breightmet health centre, a few miles out of Bolton town centre, though the location is almost arbitrary. The vast majority of the clinic’s work takes place virtually, initially to comply with Covid restrictions but now because it is what most patients prefer.
“There’s still a huge anxiety there, particularly if you are asking someone to come into a health centre or hospital,” said Lynda Morris, a nurse specialising in neurological conditions who is one of three women in charge of Bolton’s long Covid pathway. “They worry they will catch Covid again and never get better.”
The Guardian was allowed to eavesdrop on a speech therapy session for Davidson, who caught Covid in March at the school where she works. An asthmatic who had previously contracted pneumonia, she shielded for the first year of the pandemic but was advised to return to work when schools reopened this March.
She went back to school on a Thursday wearing a mask and a visor and by Monday she was on the Covid ward. The experience has left profound physical and mental distress.
“I’m out of breath doing the slightest little thing. I describe myself as an old woman with dementia because I forget things. I have to write everything down – we’ve got post-it notes all over the house.
“I can’t sleep, I’ve got pins and needles all over,” she said. “I feel I’ve lost me, I’ve lost who I am. I am not the person I was pre-March.”
She is terrified of leaving the house. “It absolutely scares me to death getting back to a normal life. I was sociable, I was a shopaholic – I lived at the Trafford Centre – but I don’t even want to do any of those things. I just think it’s too dangerous. Going forward, will I ever want to do them?” she said.
“Covid isn’t going anywhere. It’s still going to be in schools. I associate school with getting Covid and I think about going back and think would I die?”
After the session, in which the speech therapist Sophie Chambers coached her through various exercises to encourage deep breathing from the diaphragm, Morris said Davidson was “one of the better ones”. Many will never fully recover because their lungs have been scarred by Covid, she said.
In another aspect Davidson is not typical: 90% of Boltonians being treated at the clinic were never hospitalised locally when they caught Covid. “There doesn’t seem to be a pattern as to who develops long Covid either,” said Morris. “The majority of our patients were managed in the community, either self-managed or via their GP.”
Although the clinic has seen patients as young as 18 and as old as 92, there seems to be a higher prevalence among women aged 45 to 54 and those working for the NHS or education and support worker occupations.
On Tuesday the team had one of their twice-weekly multidisciplinary meetings where they discuss new patients. Each had filled in a questionnaire about their symptoms, asking whether they were breathless when walking up the stairs, getting dressed or even just resting. They were asked to record levels of fatigue, anxiety, communication problems and whether they suffered nightmares.
Extreme fatigue – both physical and cognitive – was the most common symptom, and the pilot showed it could be improved with changes to diet and exercise as well as a regular stretching programme. The most complicated cases were referred to a consultant who specialises in chronic fatigue. Other patients had more niche issues: their hair was falling out, their voices kept changing pitch.
Listening in, it was clear how devastating long Covid can be. One new patient, a single mother in her 50s, said she had lost her job, her partner and all of her savings after contracting Covid in September. Constantly exhausted, she sometimes sleeps for 20 hours a day and can only walk a few yards before being completely wiped out.
“I’m anxious about everything,” she wrote in her questionnaire. “My finances give me extreme anxiety. I’ve spent most of my life as a single mum trying to make secure life for myself and my son. I feel it’s all slipping away from me.
“I’ve used all my savings to keep up with my bills and universal credit doesn’t cover them. I’m dreading what the future now holds for me.”
* Sarah Davidson is a pseudonym