Heather Hogan / The Sick Times
Key points you should know:
- Fewer than half of Long COVID clinics will remain open across the U.K. through this year.
- The U.K. government set aside funding for Long COVID clinics in 2020, but funding is now up to local health boards. Although health boards are expected to provide services for Long COVID, NHS England is no longer checking that these services are provided.
- Not everyone with Long COVID found specialist clinics helpful. However, many were concerned that, without these specialist clinics, support will be harder to access.
- If specialist clinics close, people with Long COVID could be referred to myalgic encephalomyelitis (ME) services. ME services may not meet all patients’ needs.
- The closure of Long COVID clinics comes alongside wider cuts to government spending, including plans to cut certain disability-related benefits.
Fewer than half of U.K. Long COVID clinics will stay open this year, according to research from the charity Long COVID Support.
The U.K. government first set up Long COVID clinics in late 2020 to provide services for people with the disease. At their peak, there were 120 clinics across the U.K., but only 46 have confirmed they will remain open.
The Sick Times spoke to several people with Long COVID about their experiences with the clinics. Although some found the clinics offered no medical interventions, all were concerned that if specialist clinics are closed down, there will be even less support available in the future.
Long COVID clinics are also shutting down elsewhere. In the U.S., Long COVID specialty care is becoming harder to find. Both the University of North Carolina’s clinic and the Queen’s Medical Center clinic in Hawaii closed last month, and Washington University in St. Louis’ clinic is set to close this month. Funding for Long COVID clinics in Australia and New Zealand has also faced challenges.
The closure of Long COVID clinics in the U.K. comes alongside government plans to slash funding for disability benefits, including halving and freezing health-related social security payments for new claimants.
“I think it’s a bad signal to the doctors and the people suffering with Long COVID, and to the public, too,” said Harry, a person with Long COVID in the East Midlands. Harry and other sources with Long COVID asked that their last names not be used in this story. “It says: We don’t have the funding or the interest to invest in Long COVID.”
“I don’t know where they expect people to turn, because [general practitioners] aren’t equipped to deal with ongoing symptoms,” said Jordan, from Sussex. “No one really cares, because they think COVID is over and it’s behind us when it’s still very much ongoing.”
A hidden problem
In England, most of the National Health Service (NHS) health budget is allocated to 42 integrated care boards (ICBs), which are responsible for planning and funding regional health services. ICBs typically follow local authority and city boundaries, organizing healthcare for roughly 1.5 million people each.
Initially, NHS England delivered Long COVID funding as part of a centralized national program, but, in March 2024, that responsibility was passed on to ICBs.
NHS England recommends that all ICBs have a multidisciplinary team to support those with Long COVID. Services should help with managing symptoms like breathlessness, fatigue, and dysautonomia. However, many ICBs are still closing their Long COVID clinics or never had one to begin with, according to research from Long COVID Support.
“Nobody’s checking” on the ICBs, said Dr. Margaret O’Hara, a trustee of Long COVID Support who also has Long COVID. If the NHS doesn’t tell the boards, “Show us that you’ve used it for Long COVID or we’re going to kick you up the backside,” then they won’t meet those expectations, she added.
ICBs’ performance is monitored against some national targets, such as wait times in the emergency room. No such targets, however, exist for Long COVID services. NHS England told the BBC in March that it has stopped checking whether clinics are still open since passing that responsibility to ICBs.
“If they’re not being sanctioned, they’ll just do what they like,” said O’Hara. “And what they want to do is use the money for other services.”
If they’re not being sanctioned, they’ll just do what they like. And what they want to do is use the money for other services.
Dr. Margaret O’Hara, Long COVId Support
Many ICBs that have closed specialist Long COVID clinics have cited a sharp fall in referrals as the reason for the closure. For example, the ICB covering Cheshire and Merseyside reported a 60% drop in referrals in 2024 compared to 2023.
A fall in referrals, however, does not necessarily reflect a fall in the number of people who need support for Long COVID, said O’Hara. She cited research that found that many people with Long COVID struggle to get a general practitioner (GP) appointment in the first place, and that many GPs may not understand the referral pathway to Long COVID clinics. Plus, “A lot of people don’t even know Long COVID exists.”
Even if patients are aware of the condition, they may have to push for the diagnosis themselves. Sue, from Derbyshire, has two teenage daughters who developed Long COVID in 2021.
“It was only after months of me going ‘she’s got Long COVID’ that my daughter’s pediatrician started to believe it,” said Sue.
The decrease in referrals reflects a broader failure to prioritize collecting accurate data on the prevalence of Long COVID and myalgic encephalomyelitis (ME). While it is unlikely that the number of people with Long COVID has fallen sharply, there are currently no up-to-date statistics on the number of people with the disease in the U.K.
The Office for National Statistics (ONS) had published monthly surveys estimating the number of people with Long COVID but stopped in March 2023. Another Long COVID dataset, from the NHS, stopped updating in 2024. Similarly, there are no central datasets on ME referrals.
A 2024 review published in Nature estimated that more than 400 million people were affected by Long COVID globally.
Inside the Long COVID clinic
Satisfaction with Long COVID clinics varies — a survey by Long COVID Support found that half of respondents were not satisfied with their specialist Long COVID service (1 or 2 on a scale of 1–5). However, one in four respondents said that they were satisfied (4 or 5 on the scale).
Eventually, both of Sue’s daughters were referred to a Long COVID clinic for children, which, she said, offered only a few phone calls and no treatments. Both were discharged from the clinic despite neither making any significant improvements.
Other patients with Long COVID were disappointed by the treatment they received, often after a long wait for an appointment. “A multidisciplinary team is what they advertised,” said Harry, a person with Long COVID in the Midlands. “What I got was a recommendation to a pain clinic, more recommendations for antidepressants, and a referral back to my GP.”
If patients do not find the clinics helpful, GPs might be reluctant to make more referrals, said Margaret O’Hara. “We hear of GPs who think that the local Long COVID service is just rubbish, and there’s no point in referring people to it,” she said.
Though Long COVID clinics should be led by a medical doctor alongside other healthcare professionals, several of the people who spoke to The Sick Times said they were offered only supportive therapies like talk therapy or occupational therapy.
“The clinic’s response was essentially cognitive behavioral therapy,” said Jordan, from Sussex. In six months of appointments, she saw “no progress, no improvement.”
“Cognitive behavioral therapy was useless for me as someone who’s been in therapy for over a decade,” she said. “I need help with my physical reality: I can’t walk very far. I can’t stand up for longer than a few minutes.”
Cognitive behavioral therapy was useless for me… I need help with my physical reality: I can’t walk very far. I can’t stand up for longer than a few minutes.
Jordan, person with Long COVID
Cognitive behavioral therapy (CBT), a type of talk therapy, is controversial as a treatment for ME and Long COVID. Treatment guidelines in the U.K. have recommended CBT in the past, bolstered by U.K. government-funded research, such as the now-debunked PACE trial. As of 2021, however, official U.K. guidelines no longer recommend CBT as a treatment for ME.
Other people with Long COVID had more positive experiences with the clinics. Jonah, from London, was referred to the clinic at King’s College Hospital in 2021.
“My doctor wrote a letter for me outlining the long-term nature of my condition, where she used the term ‘disabled.’ Before that, I hadn’t really considered myself disabled,” he said. That letter “reoriented how I thought about myself.”
Jade lives in Sheffield and cares for her partner, who has had Long COVID since 2022. “The clinic’s not been life-changing, but it’s certainly been helpful,” she said. “I think he would have deteriorated more without that support.”
Jade’s partner suffered a bad crash, which left him less able to work. An occupational therapist at the local Long COVID clinic helped him plan rest strategies and wrote a return-to-work letter. “She supported him through that crash,” Jade said.
However, Jade added, their local ICB is considering closing the Long COVID clinic. “If support like that goes, we don’t have anywhere else to turn to.”
Transfer to ME/CFS services
When Long COVID clinics are closed, GPs may have to refer patients to clinics for ME, also called chronic fatigue syndrome (CFS), of which there are only about 60 in the country.
Estimates suggest that about half of those with Long COVID meet the diagnostic criteria for ME, so the care at these clinics is unlikely to be appropriate for everyone with Long COVID, said Dr. Charles Shepherd, a trustee of the ME Association.
Long COVID includes a “spectrum,” he said. Some people can be helped by an ME clinic, but others have health issues like lung damage, heart damage, and loss of taste and smell, which ME clinics likely won’t be able to address.
Even for people who do have both Long COVID and ME, these specialist clinics may not meet their needs. Only 28% of healthcare authorities in England have implemented national guidelines on ME, according to research from the charity Action for ME.
“Some ME services can’t even provide a diagnosis of the condition they’re dealing with because they haven’t got a physician,” said Shepherd. “They’re not able to prescribe drugs for pain or sleep.”
Some ME services can’t even provide a diagnosis of the condition they’re dealing with because they haven’t got a physician.
Dr. Charles Shepherd, ME Association
No healthcare, no welfare
Cuts to Long COVID services come as part of a broader push by the U.K. government to reduce spending.
One target for cutting spending is disability-related benefits. Since the start of the pandemic, the U.K. has seen a surge in the number of people who are unable to work due to ill health. Spending on disability benefits for working-age adults has increased by £20 billion, which the U.K. Department for Work and Pensions has described as “not sustainable.”
People with Long COVID are three times more likely to leave work than those without the disease, according to one U.K. study, which could leave them depending on these benefits.
Currently, disabled people in the U.K., including those disabled by Long COVID, can claim certain benefits if they are too unwell to work. These include Universal Credit, a means-tested social security benefit for people on a low income. People who claim Universal Credit are eligible for an extra £423 per month if they have a limited capability for work, on top of a standard rate of £400 per month.
Many people currently receiving Universal Credit are set to face significant cuts to those benefits due to a recent welfare reform bill. The government is set to cut additional benefits for those with work-limiting health conditions in half and freeze the amounts for people newly claiming benefits starting in April 2026. Those new claimants will receive £2,500 less per year than they would have under the prior rules.
The government had also threatened to tighten the eligibility criteria for Personal Independence Payment (PIP), a program intended to help cover the increased costs of living that come with a disability, regardless of whether they work.
However, under pressure from disability rights organizations and a rebellion of over 120 MPs, this policy was scrapped earlier in July.
Instead, any changes to PIP eligibility will be reconsidered in 2026, following a review of PIP led by the Work and Pensions minister, Sir Stephen Timms. The government has not ruled out any future cuts to PIP next year.
“A lot of people have been scared that they’re going to lose the benefits that are a lifeline to them,” said Karen Hargrave, co-founder of the #ThereForME campaign. “At the same time, they’re also not receiving any healthcare that would help them get better and be able to work.”
In 2023, the last year for which data is available, the ONS estimated that 762,000 people with Long COVID had been unwell for at least two years. One in five said their activities were limited “a lot.”
“How are you meant to live?” said Hargrave. “You’re not able to work because you’re sick, you’re not being offered any healthcare to get better, and you’re scared about losing the benefits that help you survive.”
You’re not able to work because you’re sick, you’re not being offered any healthcare to get better, and you’re scared about losing the benefits that help you survive.
Karen Hargrave, #ThereForME
Hannah Buttle is a journalist based in London. Her work currently focuses on the intersection of business, economics, and Long COVID.
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