Intended for healthcare professionals

Opinion

Hancock’s covid inquiry evidence offers few clues as to why long covid was sidelined

BMJ 2023; 383 doi: https://doi.org/10.1136/bmj.p2902 (Published 07 December 2023) Cite this as: BMJ 2023;383:p2902
  1. Ondine Sherwood, co-founder
  1. Long Covid SOS

Questions remain as to why long covid wasn't a political priority, writes Ondine Sherwood

In the early weeks and months of the covid-19 pandemic, it was left to patient advocates like us at Long Covid SOS to bring the issue of long term morbidity after a covid-19 infection to the notice of the UK government. Despite a series of letters to policy makers, some of which were published in The BMJ,1 2 we and other groups struggled to get our voices heard. Notwithstanding the creation of NHS England’s long covid taskforce and ministerial roundtables on the subject, it became clear to us that policy making decisions throughout the pandemic were not being informed by the prevalence and risk of long covid. This was reinforced by the dearth of public messaging on long covid, resulting in widespread ignorance of the condition and missed opportunities to promote protective behaviour.

We are part of a group of long covid charities who are core participants in the UK covid inquiry. The long covid groups have established six framework questions that we would like module 2 of the inquiry to answer.3 We looked to Matt Hancock to provide clarity and answers to two of these questions: firstly, was the prevalence and the risk of long covid taken into account when decisions, like the imposition and then easing of non-pharmaceutical interventions, were adopted; and secondly, how, and to what extent, did decision makers warn the public about the risk of developing long covid and take the disease into account in public health communications.

We learnt earlier in this part of the inquiry that Boris Johnson was sceptical of the condition, likening it to “Gulf War syndrome stuff.”4 According to Patrick Vallance, the UK government’s chief scientific adviser during the pandemic, Johnson “didn’t really think about it” during 2020.5 It wasn’t until 2021 that long covid began to be taken seriously, but nevertheless very little evidence has emerged so far from the inquiry that it was a consideration when the government made decisions about non-pharmaceutical interventions, including easing restrictions without mitigations in place and public health communications on the risks.

Matt Hancock’s evidence was heard in the face of accusations from multiple witnesses that he was unreliable. Dominic Cummings, former chief adviser to the prime minister, Patrick Vallance, and Helen MacNamara, former deputy cabinet secretary, to quote Hugo Keith: “have made reference to you lying, to you getting overexcited and just saying stuff, that you say things which surprise people because they knew the evidence base wasn't there.”5

As Hancock was the secretary of state for health and social care for 18 months of the pandemic, we and the other long covid groups were keen to see if he would reveal why the condition was sidelined throughout this period and beyond. In a ministerial roundtable meeting that he chaired in early 2021 he told us that long covid was a subject “close to his heart.” Was he in fact a champion for the condition but was ignored because of his tendency towards “overenthusiasm” (to quote Vallance)?

Why did long covid languish on the political agenda?

Hancock’s evidence was characterised by a determination to take the higher ground and distance himself from accusations of lying. However, at the same time he appeared unwilling to criticise either Boris Johnson or Rishi Sunak, directing much of his blame towards Dominic Cummings. This left him floundering when questioned about his role in getting long covid up the political agenda.

For example, Hancock acknowledged that the existence of long covid makes the virus “even worse” and that “the best way to avoid long covid is to take the measures necessary to reduce the amount of covid, full stop.”6 Yet we were given no evidence that he managed to promote this view successfully to other members of government. He was after all secretary of state for health and social care yet had to rely on “personal communications” and his own social media to publicise his concerns.

Bizarrely, when asked by our barrister, Anthony Metzer, why, given Hancock himself had agreed that communication is an important non-pharmaceutical intervention, was the lack of communication to the general public about long covid not raised across government, he replied, “I don't know, you'll have to ask people across government.”6 Later in questioning he described trying to get the government to respond to the problem of long covid as like “wading through treacle.”6 We are left to speculate whether his inability to influence policy was owing to his lack of authority or deep scepticism on the part of Boris Johnson.

Another theme in Hancock’s evidence on long covid was his tendency to blame clinicians for the lack of public campaigns and delays in action, deflecting the responsibility away from policy makers. Describing long covid as a “range of conditions,” he claimed that the NHS “found long covid quite difficult to categorise at first.”6 This rather contradicts his assertions that Chris Whitty, the chief medical officer for England, had raised concerns early on about post-viral syndromes, which are of course nothing new, and that he was “alive” to the risk of post viral syndromes even before the infection “reached our shores.”6

Hancock's suggestion that a public campaign on long covid didn't launch until October because of dithering on the part of clinicians strikes me as unlikely. Between the long covid roundtable that he attended on 31 July and October, there were no major breakthroughs in our knowledge of the pathophysiology or presentation of long covid which could have accounted for a change of heart on the part of clinicians. The inquiry wasn’t presented with evidence as to which clinicians “wanted an answer to the question ‘What exactly is long covid?’ before they would go out and say that ‘We're having a campaign on this.’”6

In 2023, we still do not have a definitive answer to that question, but it’s unarguable that Hancock’s priority should have been protecting the public from developing a condition which, although hard to pin down, was clearly extremely debilitating and already affecting hundreds of thousands of people.

Footnotes

  • Competing interests: None declared.

  • Provenance: Commissioned; not externally peer reviewed.

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