The UK Covid-19 Inquiry Module 2, which is examining Core UK Decision-making and Political Governance during the pandemic, opened today. Outside the venue a group of people with Long Covid gathered in unity.
They were there to make sure that all those involved in the Inquiry understand that Long Covid equals Lives Ruined. The Long Covid Groups, which comprise Long Covid SOS, Long Covid Support and Long Covid Kids, are Core Participants in Module 2, and they are looking for answers.
In their last bulletin at the end of March 2023 before the Covid Infection Survey was put on pause, the ONS estimated that 1.9 million people in the UK had Long Covid, of whom 1.3 million were first infected a year or more beforehand and 381,000 were severely impacted by their symptoms.
It has long been a source of grave concern to the Long Covid Groups that, due to an almost complete absence of messaging from our government, the public have essentially been kept in the dark about this relatively common and debilitating consequence of a Covid-19 infection. Even now, as a predicted rise in Covid infections driven by a highly mutated new variant raises concern across government departments, the risk of developing Long Covid is still not being communicated.
Gaslighting and scepticism at the top of government
Today some light was thrown on this in a shocking revelation from the Long Covid Groups' KC, Anthony Metzer.
During his opening speech to the Inquiry today Metzer disclosed that in October 2020 former Prime Minister Boris Johnson scrawled the word ‘BOLLOCKS’ in capital letters across a Dept of Health and Social Care document providing guidance about Long Covid. Johnson has admitted in his own witness statement that he didn’t believe that Long Covid ‘truly existed’, and we now know that he thought it should be dismissed as “Gulf War Syndrome stuff”.
Deep-rooted scepticism at the very top of government may explain why the millions damaged by Covid-19 have faced huge struggles to have their illness recognised and to get the care they so desperately need. As the Groups' KC concluded:
“The UK’s Senior-most decision makers were dismissing, diminishing and disbelieving the very existence and risk of Long Covid”
Tireless advocacy
The Long Covid Groups have been advocating for the millions suffering ongoing symptoms due to Covid-19 since the earliest days of the pandemic and have had to fight hard for recognition of the condition. Letters to government warning of the likely consequences of allowing the SARS-CoV-2 virus to spread unchecked went unheeded and unanswered, appearances in front of the APPG on Coronavirus and the Health and Social Care Select Committee did not lead to any changes in policy. The UK Government did not appear to want to take the risk of Long Covid into account when making policy decisions on steps to manage the pandemic. The condition is now seriously impacting the workforce and the economy, as well as causing the lives of so many to be radically altered, possibly permanently.
People with Long Covid are the surviving victims of the pandemic
The Long Covid Groups hope that through the leadership of Baroness Hallett, the Inquiry will provide answers to their six main questions:
- What was decision-makers’ understanding of long-term sequelae and Long Covid?
- What was the role of patient advocacy in the recognition and response to Long Covid?
- Was there data collection and modelling of Long Covid?
- 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?
- 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?
- Whether nearly 2 million adults and children suffering from Long Covid today was avoidable?
It is imperative that the UK Covid-19 Inquiry properly considers throughout every aspect of its investigation the long-term harm done by Covid-19. The Long Covid Groups are encouraged that Hugo Keith, KC to the Inquiry has publicly declared:
“Long Covid is an injury, a serious condition, even a serious morbidity which is the result of having had Covid"
Amitava Banerjee, Long Covid SOS Trustee and Professor of Clinical Data Science and Honorary Consultant Cardiologist, University College London said:
"There is little left to shock us in the conduct of the government under Boris Johnson during the pandemic, but despite huge public health consequences of political decisions, this is truly shocking. Long Covid had and continues to have major consequences for individuals and the economy, which is borne out by science, clinical expertise and patient experience. Mr Johnson's prejudices and lack of scientific knowledge had direct implications for people with Long Covid who needed support and deserved far better."
Professor Danny Altmann, Long Covid Support Trustee and Professor of Immunology at Imperial College London said:
“This news is shocking but concurs with many of the concerns there have been with respect to understanding of Long Covid at the heart of policy. While the basis for the PM’s opinion is unclear, it is unfortunate that 100s of millions across the world with this condition – a consequence of infection by this virus in about 10% of all cases – find that such opinions block their pathway to clinical recognition and care. As much hard-fought medical research progress across the past 3-years has shown, Long Covid is an objectively characterised chronic condition impacting anything from neurocognitive function to breathlessness or risk of diabetes and stroke. It can be defined by an increasing range of serum biomarkers as well as organ imaging”
Natalie Rogers, Founding Trustee, Long Covid Support said:
“The enduring suffering of nearly 2 Million UK citizens whose lives have been devastated by Long Covid is the inconvenient legacy of the Covid-19 pandemic. Our paused lives sit uncomfortably at odds with the prevailing ‘living with Covid’ narrative. To learn that the uphill struggle for recognition of this debilitating condition was thwarted from the outset at the very highest levels of government is a sickeningly low blow.”
Ondine Sherwood, Co-Founder of Long Covid SOS said:
“Departmental officials and even at times ministers were receptive, understanding and gave us the impression that something would be done to improve the lives of the many people with Long Covid. We hoped that the Government would at last take the issue seriously. However it became clear that a barrier existed to progress and now we know that scepticism permeated the corridors of power"
Background
- Many with Long Covid are unable to work and support their families and are being forced to sell their homes. Health and social care are the sectors most impacted but as yet the condition has not been classified as an Occupational Disease. The last estimates from the ONS suggest that 2.9% of the UK population have Long Covid, of whom 1.5 million are adversely affected. 1.8% of those aged between 25-34 and 3.1% of 35–49-year-olds have had Long Covid for more than a year – totalling around 560,000 people in the prime of their working lives.
- Although NHS England have set up 90 Long Covid clinics there are currently no validated treatments, no cure and only symptom relief. These clinics are accepting fewer than 2000 new referrals each month. There are currently no Long Covid clinics in Scotland with only patchy provision in Wales and Northern Ireland.
- Long Covid is having a direct impact on the economy. The Bank of England highlighted the contribution Long Covid has made towards an estimated 440,000 missing workers and more than 10,000 long term absences among NHS staff are Covid related. The Institute of Fiscal Affairs estimated in 2022 that 110,000 workers are on sick leave due to Long Covid. More recently it has been reported that economic inactivity due to long term sickness is at a record high of 2.6 million: Long Covid is considered to make an important contribution to these figures.
The Long Covid Groups:
- Long Covid SOS was established during the early months of the pandemic and is staffed entirely by volunteers with lived experience of Long Covid. It is now a registered Charity and has played a major role in generating awareness of the condition through social media and press campaigning.
- Long Covid Support is a registered Charity based in England and Wales, formed by volunteers with lived experience of the condition. Since May 2020 we have been calling for recognition of the impact of Long Covid on individuals, employers and society and for measures to prevent more people developing Long Covid.
- Long Covid Kids was the first registered charity advocating for families, children and young people living with Long Covid anywhere in the world. Currently supporting 11,000 families, LCK’s vision is to achieve recognition, support and recovery for Long Covid and related illnesses in children and young people.
For more information, interviews and case studies:
Long Covid SOS: Ondine Sherwood, 07968 083578 www.longcovidsos.org
Long Covid Support: Natalie Rogers. 07843 255142 www.longcovid.org
Long Covid Kids: Sammie McFarland 07807 090013 www.longcovidkids.org