What is the state of Long Covid support in the UK?
15th Mar 2024 Health Conditions
4 min read
Four years on from the start of the COVID-19 pandemic, patients in the UK are still waiting for the right Long Covid support. These groups are rallying to help
Fran Haddock has been mostly bedbound in Sheffield for over a year, unable to stand, walk, go downstairs or leave her house.
Although she’s had mild Myalgic Encephalomyelitis (often referred to as “ME/CFS”)—a complex chronic condition with the hallmark feature of post-exertional malaise (PEM), where symptoms worsen after minimal mental or physical activity—for six years, it became severe after she came down with a “horrific” case of COVID-19 in November 2022.
Since then, she has been diagnosed with Long COVID, Postural Orthostatic Tachycardia Syndrome (POTS), vestibular disease and neuroinflammation.
“It’s been an unimaginably hard year and is still a challenge to get through each day and has had a huge impact on my partner and family, too,” she said.
Fran is one of an estimated 1.9 million people in the UK—2.9 per cent of the population—living with Long Covid.
What is Long COVID?
A common symptom of Long Covid is extreme fatigue
The most common symptoms of Long Covid include extreme tiredness, shortness of breath, loss of smell and muscle aches, according to the NHS, but over 200 multi-systemic symptoms have been identified.
Long Covid is complex and, although research is ongoing, there is still a lot we don’t understand.
Like Fran, many people with Long Covid meet the diagnostic criteria for conditions often associated with post-viral illness.
"Although research is ongoing, there is still a lot we don’t understand"
66 per cent of people with Long Covid have developed “moderate to severe” dysautonomia—an umbrella term for dysfunctions of the autonomic nervous system like POTS, orthostatic hypotension and vasovagal syncope.
These conditions can cause symptoms like lightheadedness, fatigue, cognitive impairment, tachycardia and shortness of breath.
Others, like Fran, may be diagnosed with ME/CFS. Research suggests nearly half of people with Long Covid are estimated to meet the diagnostic criteria for ME/CFS.
How is the NHS treating Long Covid?
Many Long Covid patients struggle to get the right support from their GP
According to the NHS, your GP may order tests to rule out other causes of your symptoms, provide advice on how to manage your symptoms at home, or refer you to a specialist or rehabilitation service.
After being bedbound for eight months, Fran was referred to her local NHS Long Covid Rehabilitation hub, who then connected her with a vestibular physiotherapist.
Although the staff at the rehabilitation hub were friendly and understanding, they were unable to offer any other help, so she has paid for the majority of her care privately.
Unfortunately, many Long Covid patients in the UK and around the world report feeling abandoned.
The Office for National Statistics stopped publishing Long Covid data in March 2023, government funding is being cut for the UK Recovery programme and the Your COVID Recovery website closes on April 1.
"There are also still huge amounts of stigma and psychologising"
“When you get Long Covid, there is extremely little help out there for you, and few doctors that understand,” Fran said.
“UK Long Covid services are currently extremely lacking, variable and primarily based on rehabilitation rather than offering medical treatments. There are also still huge amounts of stigma and psychologising.”
For patients experiencing unproductive appointments with their GPs, Long Covid Support recommends maintaining an open dialogue with your doctor where possible or seeking a second opinion.
They also suggest preparing a list of questions before appointments and bringing along a loved one to help answer questions and offer moral support.
How are patients managing Long Covid?
Treatments for Long Covid include acupuncture and cold water therapy
From coining the term “Covid long-hauler” to leading research efforts, patients themselves have been at the forefront of Long Covid advocacy since the pandemic began.
Many patients have turned to support groups to share their experiences and exchange helpful advice.
When asked if they had any advice for patients who may be struggling to access care, a representative from Long Covid Support recommended:
- Joining a virtual support group. There are a wide variety of options from organisations like Long Covid Support and Dysautonomia International.
- Practicing pacing strategies like following spoon theory, staying within your energy envelope and using wearables to monitor health and activity levels.
- Managing sleep troubles by avoiding intense activity or using social media immediately before bedtime.
- Taking precautions to avoid reinfection, like wearing a high-quality respirator and ensuring there is adequate ventilation in public spaces.
Long Covid Support also said some Long Covid patients are reporting benefits from alternative therapies like oxygen therapy, cold water therapy and acupuncture.
“There is no magic cure right now,” the organisation said. “Until now, the most tried and tested antidote to any exacerbation of symptoms is rest. This is easier said than done when having to contend with the typical day-to-day responsibilities that life throws at us.”
What’s next for Long Covid recovery?
Researchers have documented inflammation, immune dysregulation, and autonomic dysfunction in Long Covid patients, according to Lauren Stiles, president of Dysautonomia International and research assistant professor of neurology at Stony Brook University School of Medicine in the US.
Clinical trials are attempting to address these findings through efgartigimod (a medication typically used to treat myasthenia gravis), intravenous immunoglobulin, vagus nerve stimulation and anti-virals.
“I am hopeful these trials will lead to more effective treatment options for patients,” Stiles said.
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