Long Covid SOS along with three other Long Covid groups - Long Covid Kids, Long Covid Physio and Long Covid Support - were represented by their legal team at the first hearing for Module 3 of the UK Covid-19 Inquiry, examining the impact of the pandemic on healthcare.
Together, the four groups represent the collective interests of 2 million adults and children impacted by the debilitating symptoms of Long Covid
Throughout the pandemic, Long Covid has been denied the attention it deserves. Long Covid SOS hopes that this issue will be at the forefront of the inquiry and that Baroness Hallett will address the many questions that those still suffering from the ongoing impact of Covid-19 need answering.
In particular we want to find out:
Why was it necessary for charities like Long Covid SOS to advocate for healthcare for those with Long Covid – and why is this still ongoing?
Why were people with prolonged symptoms after a Covid-19 infection disbelieved and told they were suffering from anxiety?
Why do people impacted by this condition still struggle to get the care they need?
Why is there such a lack of research in the UK into desperately needed pharmacological treatments?
Our written submission to the inquiry, presented today by Anthony Metzer KC, emphasised that the Inquiry must learn from the experiences of people impacted by Long Covid. Furthermore, the trauma suffered by those who had their symptoms dismissed, were unable to receive a diagnosis and experienced barriers to accessing healthcare needs to be acknowledged.
“Long Covid needs to be central to the UK Covid-19 Inquiry. The hundreds of thousands still unwell – including those who have endured almost 3 years of ill health - represent the legacy of Covid-19, the ‘pandemic after the pandemic’. Their lives may never be the same again. Due to the lack of available treatment, many are forced to self-medicate and travel abroad in search of care. Long Covid SOS will continue to advocate for recognition, research, and rehabilitation for all those impacted by this debilitating condition.” Ondine Sherwood Co-founder, Long Covid SOS
“As Module 3 to the Inquiry opens today, we are glad to note Counsel to the Inquiry’s encouraging comments that Long Covid will not be overlooked during this Inquiry, as it has been throughout the pandemic. Disbelief, dismissal and denial characterised many Long Covid sufferers’ experience of the healthcare system during the pandemic, and very much hope this attitude will not prevail during the Inquiry. We are particularly pleased to learn that the Inquiry will instruct a specific expert to consider the issue of diagnosis and treatment of Long Covid within the Inquiry’s assessment of healthcare systems” Anthony Metzer KC Lead counsel for the Long Covid Groups
“I welcome the indication from the Inquiry that Long Covid will be a central part of the investigation into the impact of Covid-19 on healthcare systems in the UK. People with Long Covid have suffered trying to access treatment, diagnosis and care – they should be heard.” Jane Ryan, partner at Bhatt Murphy
“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.” Ami Banerjee, Long Covid SOS Trustee and Professor of Clinical Data Science and Honorary Consultant Cardiologist at University College London