Clinic helps long-haul patients in London’s “COVID triangle”
LONDON — Gary Miller drove a London taxi. Rohit Patel worked behind the till in a supermarket. Barry Bwalya was in customer service.
When the coronavirus tore through their London neighborhoods in early 2020, they all got sick. More than a year later, they are still struggling.
“It’s like a rollercoaster,” said Miller, a previously fit, gym-loving 57-year-old who is coping with leg and joint pain, headaches and breathlessness. “There are times that I see light at the end of the tunnel. I feel like I’m taking one step forward, and then all of a sudden — bang — I’m ill again and I take two steps back.”
Even as London looks to life after lockdown, thousands of people are still grappling with long-term physical and mental effects of the virus. Help is coming through “long COVID” clinics, where medics, patients – and Britain’s overstretched health system – are confronting the virus’s enduring effects.
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At King George Hospital in the east London district of Ilford, respiratory consultant Adam Ainley began noticing last summer that some coronavirus patients who had been discharged were not getting better. They had a wide range of symptoms, including fatigue, muscle pain, breathlessness, headaches, anxiety and depression.
The hospital serves an area dubbed the “COVID triangle,” three outer London boroughs that have had some of Britain’s highest infection rates. It’s a multi-ethnic area, home to many Black and South Asian Londoners, groups that saw higher rates of serious COVID-19 illness and death than white Britons.
High rates of poverty, crowded housing and residents in frontline jobs — including medics, taxi drivers and retail workers — all helped the virus spread.
Ainley began drawing on the expertise of colleagues from multiple disciplines to treat what has been labeled “long COVID,” or long-haul COVID. His clinic was one of the first of 83 set up across England, backed by the state-funded National Health Service.
Ainley said it aims to offer “a one-stop approach” to a complex problem.
“We will try and address all the components of your illness,” he said. “When you get to the clinic you’ll see myself, you’ll see a physiotherapist, the occupational therapist, our clinical psychologist. I have access to other specialty members from cardiology, rheumatology, as I need to, based upon your symptoms.”
Some patients have even been given singing lessons as therapy.
There is no universal definition of long COVID, a term applied to a range of persistent post-viral symptoms. While most people recover from coronavirus infections within a few weeks, Britain’s statistics office says almost 14% still report symptoms 12 weeks later.
Ainley’s clinic has seen 700 patients, with another 120 on the waiting list. Their symptoms are often mental as well as physical. Psychologist Marc Kingsley said many experience memory loss and “brain fog,” as well as loneliness and low moods.
“Some of the people I’ve spoken to have survivor guilt,” Kingsley said. “They actually feel guilty about having survived where they saw people in front of them passing away.
“A lot of our patients say to us they don’t feel that they can just talk to friends and family,” he said. “They don’t want to upset people.”
As well as home visits from physiotherapists, Miller gets phone calls from a therapist where he can talk about the frustration he feels.
“It’s nice to talk to other people and get a load off my chest,” he said. “And to find out through her that there are people in the same boat as I am.”
The U.K., which has seen almost 128,000 coronavirus-related deaths, has recorded almost 4.5 million infections, so long COVID is likely to be a burden for years to come. But the clinics face competition for resources in a heath service facing a backlog of undiagnosed and untreated cancers and other ailments. Some long COVID sufferers say they can’t get referred to one of the specialist clinics.
The NHS has allocated 34 million pounds ($48 million) to the clinics, and chief executive Simon Stevens has promised more funds will be coming.
Britain was relatively quick to devote resources to long COVID, but it was still months before many patients received specialist help. The King George clinic is still treating patients who fell sick in spring 2020. Now it is starting to see those infected during Britain’s even bigger winter outbreak.
“The first wave, I feel gutted for,” said physiotherapist Jane Clark. “It is lovely to see them improve so quickly and you think, ‘I just wish I was aware of you earlier.’”
Ainley says “there’s no gold standard or evidence-based treatment yet for long COVID,” but he’s encouraged to see many patients getting better.
“I’ve followed some of their journeys from their first admission,” he said. “People admitted last April we have now discharged from our clinic because now they’re back to functioning in life. We’ve had people attend weddings … people reunited with their families … people who were essentially housebound, who are now going out.”
Progress can feel agonizingly slow. Bwayla, 66, struggles with his breath and his memory and relies on around-the-clock support from his wife, Barbara.
“I never thought I would walk, but now at least I can walk with a stick,” he said. “But at times I get so frustrated. … I love my granddaughter, but I can’t even play with her.”
Miller, Bwalya and Patel all know many people — workmates, relatives, friends — who became ill with COVID-19, and some who died.
“Sometimes it makes you wonder, how come I survived and a lot of people couldn’t?” Patel said.
The 62-year-old supermarket cashier spent three months in King George Hospital with the virus last year, including six weeks in an induced coma.
Almost a year after being discharged, he still is short of breath and suffers from numbness in his feet. But he can make a cup of tea, and he’s able to walk slowly around the block. He hopes to return to work next month.
“It’s been a long haul, but I think I’m getting there,” Patel said, defiantly optimistic. “I am seeing this as a second life.”