There has been some progress to put in place support, particularly in England, but this is not yet reaching large numbers of people, many of whom have lived with debilitating symptoms for a year and have seen their ability to work, study or care for others significantly impaired. In this document we set out what people with Long Covid urgently need.

We presented to the NHS England Taskforce on Long Covid the initial findings from our ongoing survey into patient experience of seeking referral to Long Covid clinics in England. Our data indicate significant gaps in care.

This survey has been designed by the Long Covid Support Group to collate information on the patient experience of Long COVID clinics in England (also referred to as Assessment Centres), announced on December 18th, 2020.

Official statistics indicate there are currently hundreds of thousands of people living with Long Covid in the UK. Many of those who contracted Covid-19 at the start of the pandemic are still experiencing significant symptoms almost a year on from their initial infection; some have already passed that grim milestone.

Watch the All Party Parliamentary Group on Coronavirus evidence sessions on Long Covid:

Read this letter from Dr Tedros Adhanom Ghebreyesus, Director General of the WHO following his opening of the Long Covid Forum

Long Covid Forum - Watch Dr Tedros’ introduction to the Long Covid Forum

"Long COVID guidelines need to reflect lived experience"
Published here in The Lancet

In August 2020 we wrote a letter to the chair of the UK's Health & Social Care Committee, Jeremy Hunt MP.