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Heather Hogan \/ The Sick Times<\/p>\nHeather Hogan \/ The Sick Times<\/p>\n
Key points you should know<\/strong>:<\/p>\n Fewer than half of U.K. Long COVID clinics will stay open this year, according to research from the charity Long COVID Support<\/a>.<\/p>\n 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.<\/p>\n 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.<\/p>\n Long COVID clinics are also shutting down elsewhere. In the U.S., Long COVID specialty care is becoming harder to find<\/a>. Both the University of North Carolina\u2019s clinic<\/a> and the Queen\u2019s Medical Center clinic<\/a> in Hawaii closed last month, and Washington University in St. Louis\u2019 clinic is set to close this month<\/a>. Funding for Long COVID clinics in Australia<\/a> and New Zealand<\/a> has also faced challenges.<\/p>\n 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<\/a> for new claimants.<\/p>\n \u201cI think it\u2019s a bad signal to the doctors and the people suffering with Long COVID, and to the public, too,\u201d 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. \u201cIt says: We don\u2019t have the funding or the interest to invest in Long COVID.\u201d<\/p>\n \u201cI don\u2019t know where they expect people to turn, because [general practitioners] aren\u2019t equipped to deal with ongoing symptoms,\u201d said Jordan, from Sussex. \u201cNo one really cares, because they think COVID is over and it\u2019s behind us when it\u2019s still very much ongoing.\u201d<\/p>\n A hidden problem<\/p>\n 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.<\/p>\n 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.<\/p>\n NHS England recommends<\/a> that all ICBs have a multidisciplinary team to support those with Long COVID. Services should help with managing symptoms like breathlessness, fatigue<\/a>, and dysautonomia<\/a>. However, many ICBs are still closing their Long COVID clinics or never had one to begin with, according to research from Long COVID Support.<\/p>\n \u201cNobody\u2019s checking\u201d on the ICBs, said Dr. Margaret O\u2019Hara, a trustee of Long COVID Support who also has Long COVID. If the NHS doesn\u2019t tell the boards, \u201cShow us that you\u2019ve used it for Long COVID or we\u2019re going to kick you up the backside,\u201d then they won\u2019t meet those expectations, she added.<\/p>\n ICBs\u2019 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<\/a> that it has stopped checking whether clinics are still open since passing that responsibility to ICBs.<\/p>\n \u201cIf they\u2019re not being sanctioned, they\u2019ll just do what they like,\u201d said O\u2019Hara. \u201cAnd what they want to do is use the money for other services.\u201d<\/p>\n If they\u2019re not being sanctioned, they\u2019ll just do what they like. And what they want to do is use the money for other services.<\/p>\n Dr. Margaret O\u2019Hara, Long COVId Support<\/p><\/blockquote>\n 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<\/a> reported a 60% drop in referrals in 2024 compared to 2023.<\/p>\n A fall in referrals, however, does not necessarily reflect a fall in the number of people who need support for Long COVID, said O\u2019Hara. She cited research that found that many people with Long COVID struggle to get a general practitioner (GP) appointment<\/a> in the first place, and that many GPs may not understand the referral pathway<\/a> to Long COVID clinics. Plus, \u201cA lot of people don\u2019t even know Long COVID exists.\u201d<\/p>\n 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.\u00a0<\/p>\n \u201cIt was only after months of me going \u2018she\u2019s got Long COVID\u2019 that my daughter\u2019s pediatrician started to believe it,\u201d said Sue.<\/p>\n The decrease in referrals reflects a broader failure to prioritize collecting accurate data on the prevalence of Long COVID and myalgic encephalomyelitis (ME)<\/a>. While it is unlikely that the number of people with Long COVID has fallen sharply, there are currently no up-to-date statistics<\/a> on the number of people with the disease in the U.K.\u00a0<\/p>\n The Office for National Statistics (ONS) had published monthly surveys estimating the number of people with Long COVID<\/a> but stopped in March 2023. Another Long COVID dataset, from the NHS, stopped updating in 2024<\/a>. Similarly, there are no central datasets on ME referrals.<\/p>\n A 2024 review published in Nature<\/a> estimated that more than 400 million people were affected by Long COVID globally.<\/p>\n Inside the Long COVID clinic<\/p>\n Satisfaction with Long COVID clinics varies \u2014 a survey by Long COVID Support<\/a> found that half of respondents were not satisfied with their specialist Long COVID service (1 or 2 on a scale of 1\u20135). However, one in four respondents said that they were satisfied (4 or 5 on the scale).<\/p>\n Eventually, both of Sue\u2019s 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.<\/p>\n Other patients with Long COVID were disappointed by the treatment they received, often after a long wait for an appointment. \u201cA multidisciplinary team is what they advertised,\u201d said Harry, a person with Long COVID in the Midlands. \u201cWhat I got was a recommendation to a pain clinic, more recommendations for antidepressants, and a referral back to my GP.\u201d<\/p>\n If patients do not find the clinics helpful, GPs might be reluctant to make more referrals, said Margaret O\u2019Hara. \u201cWe hear of GPs who think that the local Long COVID service is just rubbish, and there\u2019s no point in referring people to it,\u201d she said.<\/p>\n Though Long COVID clinics should be led by a medical doctor<\/a> 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.\u00a0<\/p>\n \u201cThe clinic\u2019s response was essentially cognitive behavioral therapy,\u201d said Jordan, from Sussex. In six months of appointments, she saw \u201cno progress, no improvement.\u201d<\/p>\n \u201cCognitive behavioral therapy was useless for me as someone who\u2019s been in therapy for over a decade,\u201d she said. \u201cI need help with my physical reality: I can\u2019t walk very far. I can\u2019t stand up for longer than a few minutes.\u201d<\/p>\n Cognitive behavioral therapy was useless for me\u2026 I need help with my physical reality: I can\u2019t walk very far. I can\u2019t stand up for longer than a few minutes.<\/p>\n Jordan, person with Long COVID<\/p><\/blockquote>\n Cognitive behavioral therapy (CBT), a type of talk therapy, is controversial as a treatment<\/a> 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<\/a> PACE trial. As of 2021, however, official U.K. guidelines no longer recommend CBT as a treatment for ME.\u00a0<\/p>\n Other people with Long COVID had more positive experiences with the clinics. Jonah, from London, was referred to the clinic at King\u2019s College Hospital in 2021.<\/p>\n \u201cMy doctor wrote a letter for me outlining the long-term nature of my condition, where she used the term \u2018disabled.\u2019 Before that, I hadn\u2019t really considered myself disabled,\u201d he said. That letter \u201creoriented how I thought about myself.\u201d<\/p>\n Jade lives in Sheffield and cares for her partner, who has had Long COVID since 2022. \u201cThe clinic\u2019s not been life-changing, but it\u2019s certainly been helpful,\u201d she said. \u201cI think he would have deteriorated more without that support.\u201d<\/p>\n Jade\u2019s 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. \u201cShe supported him through that crash,\u201d Jade said.<\/p>\n However, Jade added, their local ICB is considering closing the Long COVID clinic. \u201cIf support like that goes, we don\u2019t have anywhere else to turn to.\u201d<\/p>\n Transfer to ME\/CFS services<\/p>\n 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<\/a>.<\/p>\n Estimates suggest<\/a> that about half<\/a> 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.\u00a0<\/p>\n Long COVID includes a \u201cspectrum,\u201d 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\u2019t be able to address.<\/p>\n 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<\/a> have implemented national guidelines on ME, according to research from the charity Action for ME.<\/p>\n \u201cSome ME services can\u2019t even provide a diagnosis of the condition they\u2019re dealing with because they haven\u2019t got a physician,\u201d said Shepherd. \u201cThey\u2019re not able to prescribe drugs for pain or sleep.\u201d<\/p>\n Some ME services can\u2019t even provide a diagnosis of the condition they\u2019re dealing with because they haven\u2019t got a physician.<\/p>\n Dr. Charles Shepherd, ME Association<\/p><\/blockquote>\n No healthcare, no welfare<\/p>\n Cuts to Long COVID services come as part of a broader push by the U.K. government<\/a> to reduce spending.<\/p>\n 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 \u00a320 billion, which the U.K. Department for Work and Pensions has described as \u201cnot sustainable.\u201d<\/a><\/p>\n People with Long COVID are three times more likely to leave work<\/a> than those without the disease, according to one U.K. study, which could leave them depending on these benefits.<\/p>\n 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 \u00a3423 per month if they have a limited capability for work, on top of a standard rate of \u00a3400 per month.<\/p>\n Many people currently receiving Universal Credit are set to face significant cuts to those benefits due to a recent welfare reform bill<\/a>. 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 \u00a32,500 less per year than they would have under the prior rules.<\/p>\n The government had also threatened to tighten the eligibility criteria<\/a> 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.\u00a0<\/p>\n However, under pressure from disability rights organizations and a rebellion of over 120 MPs, this policy was scrapped earlier in July.<\/p>\n 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.<\/p>\n \u201cA lot of people have been scared that they\u2019re going to lose the benefits that are a lifeline to them,\u201d said Karen Hargrave, co-founder of the #ThereForME campaign<\/a>. \u201cAt the same time, they\u2019re also not receiving any healthcare that would help them get better and be able to work.\u201d<\/p>\n 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 \u201ca lot.\u201d<\/p>\n \u201cHow are you meant to live?\u201d said Hargrave. \u201cYou\u2019re not able to work because you\u2019re sick, you\u2019re not being offered any healthcare to get better, and you\u2019re scared about losing the benefits that help you survive.\u201d<\/p>\n You\u2019re not able to work because you\u2019re sick, you\u2019re not being offered any healthcare to get better, and you\u2019re scared about losing the benefits that help you survive.<\/p>\n Karen Hargrave, #ThereForME<\/p><\/blockquote>\n Hannah Buttle<\/strong><\/a> is a journalist based in London. Her work currently focuses on the intersection of business, economics, and Long COVID.<\/p>\n All articles by\u00a0The Sick Times\u00a0are available for other outlets to republish free of charge. We request that you credit us and link back to our website.<\/p>\n The Sick Times\u00a0is dedicated to independent Long COVID journalism, without denial, minimizing, or gaslighting.<\/p>\n By donating to this non-profit publication, you:<\/strong><\/p>\n Help us keep this work going into 2026 by donating during our summer fundraiser. <\/strong>We\u2019re aiming to raise $30,000<\/strong> and have 100 readers<\/strong> set up new monthly donations during the month of July. Learn more about the fundraiser here<\/a>.<\/p>\n Make a monthly tax-deductible donation:<\/strong><\/p>\n Not ready to give monthly? A one-time donation of any amount also has a profound impact.<\/p>\n Related storiesLike this:<\/p>\n Like Loading\u2026<\/p>\n\n
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