Recognition for Long COVID Charities representing victims of COVID-19 as they are granted core participant status in module 3 of the UK COVID inquiry
- Details
- Category: What We Do
Long Covid Support welcomes the inclusion of the Long Covid Groups (Long Covid Kids, Long Covid
Physio, Long Covid SOS, Long Covid Support) in Module 3 of the C19 Inquiry. It is imperative that the
post-acute sequelae of Covid19 are central to reflections on the pandemic response in order to
better prepare for future outbreaks.
It is also important that lessons are swiftly learned and implemented in order that adequate
provision is made for the care, support and treatment of people whose lives have already been
radically altered due to Long Covid. An increasing number of people of working age are being left
unable to work at all or to their previous capacity as a result of their Long Covid. The fall in labour
market participation is already having a measurable impact on the economy and is, in our opinion,
not sustainable. Future modelling and policy decisions need to recognise that this is an ongoing
problem.
Finally, it is important that immediate lessons are learned in terms of preventing more peoples lives
being unnecessarily impacted. Long Covid Groups recently wrote an open letter to the Secretary of
State for Health and Social Care signed by over 20 organisations, calling for better ventilation and air
filtration units and visible CO2 monitors in public spaces. We trust that appropriate mitigations will
be incorporated into the Inquiry hearings, both to protect those attending, including the clinically
vulnerable, and to model good practice.
Speaking on behalf of the Long Covid Groups, Anthony Metzer KC said:
“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, they struggled to receive a diagnosis, to access a care
pathway and to receive treatment. Long Covid is an important central thread to the Inquiry’s
understanding of the impact of the pandemic on healthcare systems, which we hope will be factored
into the Inquiry’s scrutiny of all points under investigation in this module. 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”
Long Covid Support was founded by people with Long Covid. It is a registered charity advocating for
better health, welfare and employment policy for those affected. Through its Covid-19 Research
Involvement Group, the charity ensures that the experience of the Long Covid community informs
medical research into diagnosis and treatment. Long Covid Support runs an international Peer
Support Group with over 57,000 members.
Since May 2020, the organisation has been calling for recognition of the impact on individuals,
employers and society and for measures to prevent more people developing Long Covid. Long Covid
Support partners with key policymakers and stakeholders, including the WHO, NHSE, NIHR, CIPD and
TUC, sharing insights from surveys and feedback from their support group. In December 2020 Long
Covid Support partnered with ISARIC and GLOPID-R to organise the Long Covid Forum, the first international research conference on the condition. In conjunction with Imperial College London they
co created the VOICE Global Long Covid Research Involvement Hub. Long Covid Support and Long
Covid Kids jointly produced an Information Leaflet, and conducted research on the effect of
reinfections in Long Covid. The charity runs an on-going survey into patient experience of accessing
care in England.
Video 🧵 @covidinquiryuk#LongCovid
— Long Covid Advocacy💙 (@LongCovidAdvoc) February 28, 2023
Why was patient advocacy necessary to recognise & define #LongCovid? pic.twitter.com/lFWZ6kR6Kr
For more information please contact Natalie Rogers: