Inside UK’s first long covid clinic: 400,000 Brits left needing specialist care

Over two million people suffer from a variety of ailments, like fatigue and brain fog and many have quit their jobs.

According to The Mirror, Long Covid is devastating the lives of sufferers [1]. With 400,000 Brits needing specialist care, they were able to see the UK’s first clinic for this condition. As one sufferer put it: “Covid is not over for me. It has completely changed my life.”

A number of ailments, including severe fatigue and brain fog, affect around two million people. Many have stopped working because they can no longer stand up without gasping for breath.

As the world recovers from the pandemic, these patients suffer in silence as the virus is no longer declared an emergency. According to experts, around 400,000 people have significant disabilities and would benefit from this type of care.

Only 100,000 have received treatment to date, according to Dr Melissa Heightman, head of the pioneering clinic at University College Hospital London. It’s not some nebulous, imaginary phenomenon caused by a lack of moral fiber or anxiety, as she said.

Covid hasn’t gone away, and if all of these people can’t get back to work, it would be catastrophic to the UK economy. While some patients undergoing tests like the “stand up sit down” test, it was astonishing at how breathless they were after a few simple tasks.

Inside UK's first long covid Clinic: 400,000 Brits left needing specialist care

Patients also shared how minor physical activities, like a trip to the doctors, leaves them bedbound for days. Dr Heightman added: “Fatigue is the most disabling thing. They are also often affected by ­cognitive effects such as brain fog, ­memory problems and multitasking.”

The other common symptoms are muscle and joint aches, headaches and palpitations. These can severely affect their ability to be active. 

The shocking thing is, they are quite young. Michelle King, 46, said she suffers dementia-like symptoms. She said: “It’s completely changed my life. I’m fed up because I’m not like this. “People just think about the initial virus and say, ‘I just had a cough.’ They don’t realise how it can stop your life.”

Two-thirds of patients with Long Covid syndrome are women and most of them have not been hospitalized. More than 100 Long Covid clinics in England see about 3,000 patients per month.

Dr Heightman’s clinic is the largest in the UK and was one of the earliest in the world to identify patients with Long Covid three years ago today at the outbreak of the disease. In the long waiting room, patients can be seen by physiotherapists, psychologists, respiratory physicians, cardiologists and neurologists who assess each patient individually.

The clinic has launched a trial to help understand what is causing the expansive array of symptoms, including chest pain and depression. Dr Heightman warned any new ­variants of the virus, while not as deadly as earlier ones, could still trigger a new wave of Long Covid.

She said: “We don’t know what is going to happen next. It’s getting longer and longer since we had vaccinations.”

We might see a new wave of this syndrome. We are dependent on research funding to keep making progress on this. “With the public’s enthusiasm to think that Covid has gone, we worry that we may deprioritize this.”

Dr Kiren Collison, GP and Chair of NHS England’s Long Covid Taskforce, said [2]: “The NHS has now helped over 100,000 people affected by ongoing health issues associated with Covid-19, and we have over 100 specialist clinics across England that can provide a range of support, including care for long-term physical, cognitive and psychological effects.

“If you are concerned about long-lasting symptoms after having Covid-19, please come forward for support – either by getting in touch with your GP surgery or visiting the NHS’ Your Covid Recovery’ website for further advice on the support available.”

What is Long Covid?

Long Covid is considered a syndrome, a collection of common symptoms, while what causes them remains a mystery [3]. However there are five main theories. One is that a form of Long Covid is an abnormal response of the immune system which could explain fatigue, muscle and joint aches.

The second is that it is a disease impacting the nervous system which could explain high heart rates and breathlessness. Another is that tiny clots could be affecting blood flow. Others are an allergic response or a mitochondrial or muscle dysfunction.

Dr Melissa Heightman, of the UCLH Long Covid clinic, said: “It’s very clear this virus has different impacts. “They could be happening all at once, overlapping and to different extents in different people. So we are unlikely to discover one single drug or treatment.”

The story of Timea

As a mother, Timea Gere managed to avoid Covid for some time but caught it in December. What followed was an unpleasant illness, although she was not hospitalised. 

However, the 47-year-old is now breathless even when sitting and needs to lie down after ordinary tasks such as washing up. She said: “I could not have imagined this kind of fatigue. It totally paralyses you.”

The mother-of-four, from Enfield, North London, says climbing stairs leaves her breathless and dizzy. She suffers palpitations when sitting still, and a dry cough which gets worse in the mornings and evenings.

Michelle’s story

Another mother, Michelle King struggles with her short-term memory, often forgetting what she is talking about mid-sentence, and has dementia-like brain fog. Previously outgoing, 46-year-old Michelle now avoids socialising in groups and spends most of her time sitting or lying down.

She says: “It feels like everything has gone into slow motion. I can’t think. I can remember things from a long time ago but I can be having a conversation and I’ll totally forget what I’m talking about. I can’t find the words.” 

Michelle, from Harlow, Essex, worked in advertising for 20 years before setting up her own gardening business. She also cares for her 18-year-old daughter, who has special needs and requires a wheelchair.

Since catching Covid a second time last September, Michelle has had to close her business and relies on support from her parents at home. Her symptoms include fatigue, breathlessness, palpitations, dizziness, headaches and coughing.

The relentless grip of this condition, with its myriad symptoms and profound impact, is a reminder that Covid’s story doesn’t end with the virus itself.

While the urgency may fade from the headlines, these individuals continue to navigate the challenging terrain of Long Covid, often in silence.


Photograph: Ladanifer/Envato
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