UK COVID-19 Inquiry: Long Covid SOS granted Core Participant Status along with 2 other Charities

Updated: Nov 21


Three key Long Covid charities - Long Covid SOS, Long Covid Kids and Long Covid Support - announced today that they have been granted core participant status in Module 2 of the UK Covid-19 Inquiry, meaning they now form part of the official inquiry into the Government’s handling and decision-making around the Covid pandemic.

All three organisations have been fighting for recognition and providing support for the millions of adults, children and young people across the UK - victims of Covid infections, either mild or severe – who went on to develop Long Covid, a multi-system condition which can cause life-changing illness.

Latest figures from ONS suggest that 2.3 million people in the UK currently have Long Covid. Included in this figure are 101,000 children aged 16 and under and almost 1 million people aged 25-49 in the prime of their working lives. 1.1 million have been sick for over a year.

Standing together with Covid-19 Bereaved Families for Justice in seeking justice for lost and radically changed lives, the groups are calling for the inquiry to focus on the following key questions:

  • Why was there no acknowledgement early in the pandemic that SARS-CoV-2 could cause a devastating chronic illness despite evidence from previous pandemics? As a result, those with Long Covid were not believed and have struggled ever since to get care.

  • Why has the impact of Long Covid been consistently ignored in government policy making decisions? This has led to a lack of awareness among the general public regarding the true risks of Long Covid, preventing them from making informed decisions about taking necessary precautions.

  • Why is healthcare funding for Long Covid so inadequate in the face of a huge and growing demand? There are still no validated treatments for Long Covid and it remains poorly understood by many medical professionals, resulting in unsatisfactory care or no treatment at all.

  • Why are there no public health measures in place to stop more people from joining the Long Covid statistics? This is a preventable health condition which currently has no cure.

  • Why were children’s Covid-19 infections, hospital admissions and deaths analysed against adult data rather than the paediatric population?

Speaking today, Long Covid SOS co-founder, Ondine Sherwood said:

“We are glad that the UK Covid Inquiry has recognised the reality of Long Covid and granted us Core Participant status.

“We are determined to work together to act as one voice on behalf of the millions of people with Long Covid, the surviving victims of this pandemic - stuck, trapped, and unwell and still struggling to be recognised or get any form of effective treatment.

“Since 2020 we have been highlighting both the risks and the lived reality of Long Covid to the UK Government, to the WHO, to NHS England and many others - that it is not only the elderly or those severely unwell that develop this debilitating condition, but fit and active children, young people and working age adults who are sadly still joining our numbers every day.

“Lessons need to be learned - and quickly - so that we can find ways to prevent people from developing Long Covid and to fast-track research on treatments. The growing numbers of people with long term illness and shortages of key frontline staff show how the cost of inaction on Long Covid, on both a personal, individual level and economically as a country is extremely damaging.”


Emma Samms, Long Covid SOS patron said:

“There’s nobody who knows more about Long Covid than those who suffer from it which is the foundation of Long Covid SOS. They have consistently kept ahead of the science and been a source of comfort to thousands of sufferers. It’s my honour to be their Patron and I can’t think of a better group of people to assist with this Inquiry.”


Ami Banerjee, Long Covid SOS Trustee and Professor of Clinical Data Science and Honorary Consultant Cardiologist at University College London said:

“The pandemic continues to cause avoidable harm, whether through short-term direct and indirect effects or Long Covid. It is essential that people with lived experience are front and centre of this inquiry, and are heard, so I am pleased to see Long Covid patient organisations such as Long Covid SOS playing their part in the inquiry.”


Anthony Metzer KC of Goldsmith Chambers, lead counsel for the Long Covid groups, said:

“Long Covid SOS, Long Covid Kids and Long Covid Support are grateful that Baroness Hallett has recognised that Long Covid Groups are well placed to assist Module 2 of the Inquiry as Core Participants and welcome this opportunity to help the investigation into government decision-making during the pandemic.

“These three Groups are representative organisations of tens of thousands of adult and child surviving victims of Covid-19 who have suffered life-changing illness and /or disability following infection. The organisations have been important public voices for the Long Covid community by advocating for the recognition of chronic illness and/or disability caused by infection and the risk of long-term illness from infection with Covid-19. It is of vital importance that the Inquiry includes the perspectives of Long Covid survivors, who presently include 2.3 million people comprising 3.5% of the population”.


Jane Ryan, Partner at Bhatt Murphy Solicitors said:

“It is imperative that the evidence of those that have suffered Long Covid is at the heart of this Inquiry. As victims of Covid-19 my clients will assist the Inquiry to ensure that there is accountability, justice and change for the future”


Background

The UK Covid-19 Inquiry is an independent public inquiry set up to examine the UK’s response to and impact of the Covid-19 pandemic, and learn lessons for the future. It was officially launched on 21st July 2022 by Baroness Hallett. Module 2 will examine political and administrative decision-making of the UK and devolved governments, with a particular focus on early 2020.


The preliminary hearing for module 2 will be held on Monday 31 October from 10am: you can watch it live on the UK Covid-19 Inquiry YouTube page


You can read the Notice of Determination by the Chair of the Inquiry following our application here

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