“TOO LITTLE, TOO LATE”, VALIDATION FOR PEOPLE WITH LONG COVID

Press Release: Inquiry exposes government failures behind the Long Covid crisis 

Long Covid Groups welcome the Inquiry’s recognition of millions still suffering, and call for urgent national action.

London, 20 November 2025.

Long Covid Groups (comprising the UK charities Long Covid Kids, Long Covid SOS, Long Covid Support and UK organisation Long Covid Physio) welcome the publication of the UK Covid-19 Inquiry’s second report and its recognition of the devastating, long-term impact of Long Covid.

The Covid-19 Inquiry has found that the UK Government should have acknowledged Long Covid and made the risks clear to the public. It has found that by October 2020 the UK Government knew Long Covid was a significant health and policy issue. Despite this, the UK Government failed to acknowledge Long Covid and failed to warn the public of the indiscriminate risk to adults and children.

The Inquiry’s Long Covid specific recommendations for future pandemics are: 

• Consideration of long term symptoms must be built into any strategy and supporting plans - there was no public health messaging on the known risk of long-term consequences of viral conditions

• The potential for long term symptoms arising from infection and any developing understanding should be communicated to the public  

More than 1.9 million people (including 100,000+ children) in the UK are estimated to be living with Long Covid, according to the ONS, making it one of the largest mass disabling events in modern British history. This is not only a health issue, but a national economic crisis: the latest ONS figures suggest more than 400,000 people are unable to work due to Long Covid. The Inquiry’s findings confirm that this crisis was foreseeable and worsened by decisions taken at the highest levels of government. 

Government failures laid bare

The Inquiry confirms that the government was warned about Long Covid repeatedly, and ignored those warnings.

From May 2020, scientists, doctors and patients were raising the alarm that Covid-19 could cause long-term, disabling illness. Frontline clinicians reported people who never recovered; researchers urged ministers to investigate; and thousands of patients, many of them NHS staff and key workers, shared their experiences publicly. Internal advice from the Department of Health that same month warned of “potential long-term health impacts.”

The inquiry has written  "There was sufficient information available by October 2020 for decision-makers to understand that Long Covid was a significant policy and health issue to be tackled”. Yet those warnings were dismissed as anecdotal. From its inception in May 2020 up until at least April 2021, the Cabinet Office Covid Taskforce did not meaningfully integrate Long Covid into its formal advice. 

Public health messaging focused narrowly on deaths and hospitalisations, leaving the public unaware of the risk of long-term illness.The lack of public health messaging about the known risks of Long Covid have compounded the stigma and dismissal that people with Long Covid face. 

By Christmas 2020, the Government had evidence that Long Covid was a serious and growing issue. Nevertheless, it proceeded to lift restrictions without accounting for the potential long-term disability and societal impact associated with Long Covid.

When the scale of Long Covid became impossible to ignore, the government finally announced research funding and a network of NHS clinics. While a handful of these clinics provided excellent care, the overall provision was far too limited to meet the need. Most were built around short-term rehabilitation rather than the complex, multi-system illness people were, and are, actually living with.

Many patients were told there was nothing the clinics could offer them, or were discharged as “too ill” for rehabilitation. The sickest people were left without care, and children were almost entirely excluded, with paediatric services appearing more than a year later in only a handful of areas.

Research was piecemeal and disconnected from policy, commissioned only after public pressure from patient groups in 2021. The Inquiry heard that these steps amounted to “tokenistic recognition without a national strategy” - damage control, not genuine care.

By refusing to listen at first and then by doing too little once it was too late, ministers turned a preventable crisis into a mass disabling event that continues to affect millions today.

Even to this day NHS services for Long Covid are absolutely insufficient to meet the needs, and what does exist is steadily diminishing.

The Long Covid Groups call to action:

1. Establish national surveillance of Long Covid and other post-viral conditions.

2. Fund specialist, multi-disciplinary care pathways for adults and children.

3. Ensure clear public communications about the ongoing risks of infection.

4. Embed Long Covid in all future pandemic planning and health resilience strategies.

5. Accelerate funding for all types of Long Covid research and incorporate patient and public involvement into research design 

Lucy Moore, Chair of Long Covid SOS, said:  

“Our stories do not end with this Inquiry and should be a wake-up call for what needs to change now as those with Long Covid still have more questions than answers. Despite initial government commitments, research and clinical support have been short-term and of narrow focus. We need long-term funding commitments for in-depth research, patient services, and prevention tools to fully understand this novel disease, safeguard those still affected years on, and to avoid further preventable illness and suffering.” 

Sammie McFarland, CEO of Long Covid Kids, said:

“We welcome the Inquiry’s recognition of Long Covid as an important step forward for many affected people. However, it remains vital that children and young people are explicitly included in this understanding. For too long, their experiences have been overlooked. Recognition of this disease is only the beginning, children need specific and meaningful, child-centred action. COVID continues to affect young lives, both through the long-term consequences of early infections and through ongoing transmission leading to new cases and reinfections. We urgently need measures that make our schools, homes and communities safer, so we can better protect children and prevent further avoidable harm.”

Nigel Rothband, Chair of Long Covid Support, said:

“For years, people with Long Covid have been dismissed and disbelieved. The Inquiry has recognised what we have long known - there was greater suffering than there needed to have been, as a result of the government’s decisions and its lack of ability to foresee long term consequences of the virus and make prompt appropriate decisions. Recognition is an important first step, but accountability and change must follow.”

We pay tribute to Ondine Sherwood, founder of Long Covid SOS, whose dedication and persistence were instrumental in securing a voice for people with Long Covid at the Inquiry. Her work was pivotal in bringing the reality of this condition into public and political view.

The Covid Inquiry’s second report focused on core UK decision-making and political governance, which brings together the work of Modules 2, 2A, 2B and 2C.

The Chair expects that recommendations are acted upon and implemented within the timeframes set out in the recommendations. The Inquiry will be monitoring the implementation of the recommendations during its lifetime.