Probing an inconvenient truth

Reflections from the Covid-19 Inquiry

Today’s guest post is from Jane Ryan, a partner at Bhatt Murphy solicitors. Jane represents the Long Covid Groups at the UK’s Covid-19 Inquiry

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In December 2021, several prime ministers ago, Baroness Hallett was appointed Chair of the Covid-19 Inquiry. The Terms of Reference require that she make findings and recommendations on preparations and the response to the pandemic up to and including the setting-up date of the inquiry, 28 June 2022.

The professional and the personal

I have been designated the recognised legal representative for the Long Covid Groups, comprising Long Covid Kids, Long Covid Kids Scotland, Long Covid Physio, Long Covid SOS and Long Covid Support.

I would like to acknowledge my client Ondine Sherwood, CEO and co-founder of Long Covid SOS who sadly passed away last week. On 8 June 2021, long before the Chair was announced, Ondine first instructed me to write to Prime Minister Boris Johnson asking him to ensure that Long Covid was a core part of the Inquiry. Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.

In this piece, I aim to give an insight into what we have seen and what we may expect as the inquiry unfolds. I am living with Long Covid as a ‘first waver’. I consider myself fortunate in that I have, unlike many others, been able to return to work, albeit with adjustments.

Living with Long Covid I have a particular empathy and anger that serve me well in my work. It has been confronting to bear witness to the devastating testimonies from those who experienced first-hand trauma (Professor Fong’s compelling evidence notably), whose lives were ruined, health destroyed and bereavements suffered.

I feel particularly angry over the disregard shown to children and young people who have been debilitated by Long Covid. The double disadvantage of suffering direct harm from the virus, as well as the impact of the pandemic-prevention measures generally, should be foundational to the inquiry’s investigations in the children’s module (Module 8). The creation of a new childhood disease, and the continued impact and growing numbers of those adversely affected, should be central.

Foreseeable impacts, disbelief and disregard

The evidence from Module 2 (central government decision-making) and Module 3 (the healthcare system response) was that Long Covid was foreseeable. However, the inquiry heard that the government, decision-makers and the healthcare system were ill-prepared for post-acute sequelae, and were certainly not prepared for the scale of Long Covid that the mass infection (and reinfection) approach has caused.

Sir Chris Whitty (in a witness statement dated 1 February 2024) stated:

“The initial planning for COVID-19 took no account of the group of chronic (prolonged) syndromes which have subsequently become known as Long COVID. It was not that the possibility of some chronic sequalae was not accepted (it was), but rather that the nature and scale of it was not foreseeable.

Post infectious chronic fatigue is well recognised for a number of infections, and several infections are particularly liable to lead to post-infectious syndromes specific to them. Examples include Subacute sclerosing panencephalitis (SSPE) after measles, Guillain-Barre syndrome (GBS) after several infections including recently Zika, post infectious reactive arthritis after several infections including Chikungunya, post-infectious irritable bowel after gut infections and post-malaria neurological syndromes. None of these are, however, easy to predict in advance of their first description by observant clinicians.”

Another point that has come strongly through the evidence is the disbelief and disregard that patients experienced – echoing the battles that patients with ME have fought for many years. Plainly, the infamous response by then Prime Minister Boris Johnson in October 2020 to the summary of the first National Institute for Health and Care Research (NIHR) review into Long Covid stands out, on which he scrawled “Bollocks”.

There is clear evidence that this dismissive attitude was profoundly harmful on a policy level and that it was reflected in patient experience. This is shown through various statements and on a national scale through the Every Story Matters (ESM) report for Module 3. ESM is a wide-ranging and commendable project from the Inquiry, which has sought to capture the broad range of people’s experiences through a series of nationwide events, as well as direct contributions through the website. ESM is unique in that it is adduced as written evidence in the inquiry and therefore can be used for questions to witnesses and submissions.

Extracts from ESM for healthcare Module 3 include:

They reported dismissive attitudes from healthcare professionals. One contributor, after months of bed rest and isolation, received only a cursory check of their vital signs before being dismissed by their GP.

“It was like I had 50 different diagnoses, but 50 things left undiagnosed with no treatments, cure or help.” Person living with Long Covid

“After 6/7 months of bed rest and no socialising we finally got a GP appointment, and he gave me a once over of my vitals and said he doesn’t know anything about Long Covid, signed me off and that was it.” Person living with Long Covid

There will be many more stories like this. The ESM events have finished but there is still an opportunity to contribute directly to the inquiry by submitting your experience here.

The impact of removing mitigations

It has also become clear that the removal of mitigation measures – or “high prevalence” planning – in 2022, reflected an approach where the long-term ill-health and disability of hundreds of thousands of adults and children was accepted. Sajid Javid in oral evidence in Module 2 on 29 November 2023, explained:

“[…] it was well understood that, as we start removing the NPIs [non-pharmaceutical interventions], albeit keep some of them in place, but start removing a large number of the NPIs, that I think what the words "high prevalence" then referred to is there would be at least for some period an increase in the number of infections. […] around Long Covid, it would mean […] you know, to get Long Covid you have to be infected in the first place -- that as infections rise there would be a rise -- no one I think at the time knew to what extent perhaps, but there would be a rise in Long Covid, at least had to be considered.”

It is, of course, notably incongruous that even to date there has been no warning to the public of the risk of Long Covid as mitigation measures were, and remain, removed. Instead of accepting long-term ill-health and disability, the government could have approached decisions to ease restrictions armed with data on the impact of long-term morbidity. They could have used this data to take informed steps to maintain simple Covid-safe measures. Plainly, this was not the case.

As Sarah Hannett KC memorably submitted, there are people “in the hearing room” that will unfortunately go on to develop Long Covid. It is concerning that the current government has picked up the baton of the previous government in ignoring the inconvenient truth that Long Covid presents.

A real and enduring threat

There is an immediate question for those of us living with Long Covid: how does the inquiry grapple with the very real and enduring threat of Covid-19 in the context of the “Living with Covid” policy enacted since 2022?

In closing submissions and a joint letter, numerous Core Participants in Module 3 sought an urgent interim recommendation from the Chair to relevant stakeholders UKHSA (UK Health Security Agency), NHSE (NHS England) DHSC (Department of Health and Social Care”) and other public health agencies (including those in the Devolved Nations). The letter asked that they review the evidence heard in Module 3 on airborne transmission, and revise and review the Infection Prevention and Control (IPC) guidance in light of that evidence.

On 27 January 2025, the Chair declined to make such a recommendation, indicating that she required further time to consider the evidence. Whilst that was disappointing, it speaks more to the requirement of due process and significance of the mountains of evidence before the Chair.

In any event, why should the stakeholders need to be told what to do? The legal process, and the need for fairness to all parties, will necessarily entail months of consideration, whereas the government, NHSE and UKHSA have an immediate imperative to protect public health from infectious airborne diseases. There is, of course, nothing stopping any of them from reviewing the evidence and current IPC guidelines, as a matter of sensible public policy and practice. It would seem to be entirely obvious that careful consideration should be given to the evidence heard in the Inquiry.

What comes next

I remain convinced that the inquiry will make findings and recommendations that make a practical difference. Baroness Hallett did not hold back in the Module 1 report, which was damning about the UK’s failure to prepare for a pandemic. The vast task facing the Chair and her team cannot be underestimated and they have shown through Module 1 and the considered approach in other modules that they are up to it.

As the inquiry traverses procurement (Module 5), care homes (Module 6) and test, trace and isolate (Module 7) in the next couple of months, I have every confidence that it will continue to be fair, critical and an immensely important mechanism of accountability and change. The inquiry must step in where the government has not and make foundational recommendations that recognise what went so badly wrong.