Disabled, Discharged and Disappearing. A Report on Long Covid Clinics.

Front cover.

A snapshot review of Long Covid services across the UK.

Vital Long Covid Clinics Closing Across the UK Despite Ongoing Need, New Research Warns

A study by Long Covid Support and Long Covid Kids has unveiled alarming gaps in Long Covid care, revealing that numerous specialist services across the UK are either shutting down or facing imminent closure. Despite NHS England confirming funding for Long Covid services through 2025/26, Freedom of Information (FOI) requests and direct communications with service providers indicate that many are already closing or operating under uncertainty.

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At its peak, more than 120 Long Covid services were operational across the UK.

However, only 46 have confirmed they will remain open, while 31 are under review, 24 have already closed or are expected to close, and 20 did not respond. The impact is particularly concerning for children and young people, with just 8 of the 13 specialist paediatric hubs established in 2021 confirming they will continue to function.

With NHS England’s ring-fenced funding for Long Covid services set to end in March 2025, there is widespread concern that more clinics will shut down, leaving thousands of patients without access to specialist care.

Key Findings

Front Cover - Disabled, discharged and disappearing from view.

Finding 1 Levels of disability

Finding 2 Insufficient awareness

Finding 3 Inadequate care

Finding 4 Lack of follow up care

Finding 5 Satisfaction with services

Finding 6 Diminishing services

Finding 7 Limited public consultation

Finding 8 Demand for Long Covid care.

Quality of Care in Decline

Beyond the closures, concerns have been raised about the quality of care provided to Long Covid patients. A survey of almost 700 individuals suffering from Long Covid found:

1. Long Covid is driving high levels of disability with over half of adults and children with Long Covid telling us they were disabled by the condition.

2. Awareness of specialist Long Covid services remains insufficient amongst those with Long Covid.

3. Specialist Long Covid services are falling short of NHS commissioning guidelines. 

4. Many patients are not followed up with or are discharged despite ongoing symptoms.

5. Satisfaction with specialist Long Covid services is low but is higher than that for NHS services overall.

6. Specialist Long Covid service provision in the UK is already limited and is set to diminish further.

7. Public consultation about specialist Long Covid service change is absent or tokenistic.

8. Health authorities are underestimating the true demand for Long Covid care.

The findings highlight Long Covid services fall short of NHS commissioning guidelines, which mandate physician-led care for Long Covid patients.

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A Growing Public Health Crisis

Contrary to the perception that Long Covid is diminishing, it remains a growing public health emergency. The 2023/24 Office for National Statistics (ONS) study recorded 2 million cases in England and Scotland, including more than 100,000 children, as of March 2024. Alarmingly, cases continue to rise, with 30% occurring in the year leading up to the study and 178,000 new cases recorded within the 16-week survey period.

The economic consequences are also staggering. Many individuals suffering from Long Covid are completely unable to work, while others struggle with reduced capacity, forcing them into part-time roles or prolonged sick leave. According to The Economist’s Long Covid Impact Report, the condition cost the UK economy an estimated £12.2 billion in lost GDP in 2024 alone. However, this figure likely underestimates the full impact, as it does not consider the broader economic fallout, including the strain on healthcare services, loss of productivity, and increased burden on unpaid carers.

Urgent Call for Government Action

The research was conducted by Long Covid Support and Long Covid Kids, two leading charities supporting and advocating for individuals affected by Long Covid. Both organisations are core participants in the UK Covid-19 Inquiry and have urged policymakers to take immediate action to prevent further clinic closures and ensure effective care for those living with the condition.

The charities are calling for:

1. An immediate halt to clinic closures and full utilisation of allocated funding to sustain and improve services in alignment with NHS commissioning guidelines.

2. The establishment of a comprehensive Long Covid surveillance system to track health, employment, education, and economic impacts.

3. The development and implementation of a National Long Covid Strategy to ensure the condition is adequately managed, treated, and resourced.

   
   

Expert Warnings and Political Responses

The Clinical Post Covid Society (CPCS) echoed these concerns in its October 2024 position paper, emphasising the unintended consequences of NHS restructuring. Since April 2024, Integrated Care Boards (ICBs) have been responsible for commissioning Long Covid services, supported by ongoing funding. However, financial constraints have led some ICBs to repurpose this funding, leading to clinic closures—a direct violation of NHS England’s commissioning guidelines.

Dr. Margaret O’Hara, Trustee and Co-founder of Long Covid Support, stated:

“The NHS is under immense pressure, but closing Long Covid clinics is not the answer. Funding for these critical services is already allocated through ICB budgets and must be used to keep them running. Long Covid remains an ongoing public health crisis, straining both our healthcare system and our economy. These clinics have proven their value by improving patient outcomes and enhancing healthcare efficiency. Rather than closing them, effective treatment of Long Covid will allow thousands upon thousands of affected individuals to take a more active role in the economy, in their communities, and in society—yielding significant financial benefits through increased autonomy and reduced costs of inactivity.”

Sammie McFarland, Founder and CEO of Long Covid Kids, highlighted the urgent need for action:

“Clinic closures must stop immediately, experienced staff must be retained, and closed clinics must reopen. Many people have endured devastating symptoms for over five years, while new cases continue to emerge. More than 100,000 children and young people are living with Long Covid (ONS), yet the infrastructure needed to support those who require ongoing care into adulthood is being dismantled. Demand is growing, yet services are being cut instead of expanded. We need urgent action to keep clinics open and a long-term strategy for research, treatment, and specialist care.”

Jo Platt, MP, Chair of the All-Party Parliamentary Group on Long Covid, affirmed:

“This latest report on Long Covid clinics highlights that Long Covid is still prevalent today and continued support is needed for those affected. As Chair of the All-Party Parliamentary Group on Long Covid, I hope to work with the Government to take meaningful action and ensure that the over 2 million people in the UK living with Long Covid have access to the care they need.”

Lord Strasburger, Liberal Democrat peer and officer of the All-Party Parliamentary Group on Long Covid, added:

“Closing Long Covid clinics is the exact opposite of what is needed. We should be ramping up our support for the 2 million people (ONS) suffering from this debilitating illness, not cutting back. There is still a lot of Covid around, and a proportion of those patients are going on to add to the total with Long Covid. This is a public health crisis that is seriously diminishing the quality of life for many of its sufferers. Many are unable to work and so are significantly increasing the number of people who are economically inactive due to ill health, at a cost of many billions of pounds to the UK economy. The Government should be redoubling its efforts to support Long Covid sufferers and researching new ways to fight this illness. Instead, some specialist clinics are being closed and others are being merged with general clinics.”

Professor Mark Faghy, Professor in Clinical Exercise Science and Trustee, concluded:

"It is clear from empirical research and reports such as this that the unmet need of adults and CYP living with Long Covid is on a trajectory towards a critical health incident. In the absence of treatments, services that can support data acquisition, understanding and providing support mechanisms are pivotal to help people living with Long Covid. This report and the supporting data that is included sets out clear recommendations that can be used in conjunction with NHS services to ensure continued progression towards the development and implementation of efficacious services. It is acknowledged that Long Covid services were developed at pace during the heights of the pandemic. Still, now more than ever, these services need to work collaboratively with partners and evolve to provide the support that is required for those living with and those yet to develop Long Covid."

Authors

This charity report was authored by volunteers from the charities Long Covid Support and Long Covid Kids. The co-authors from Long Covid Support are Margaret O’Hara, Sarah Weston, Oonagh Cousins, Yanto Evans, Michael Natt, and Mike Ormerod, and those from Long Covid Kids are Helen Goss, Sammie McFarland, and Kirsty Stanley.

Acknowledgment

We are grateful to Long Covid Support members Jo Dainow, Andrea Galley, Ruairidh Milne, Nikki Smith, and Russell Watkins for their time, expertise, and insight. We are also grateful to the hundreds of people in the Long Covid community who gave their time and energy to complete the survey. All contributors are patient researchers and advocates with lived experience of Long Covid. All work has been done voluntarily.

Final Report Release and Further Information

For further details, the FOI data can be accessed HERE.

Long Covid Kids - 4 Pillars