As the UK government announce plans to roll back covid-19 restrictions in England, a group of patient advocates with long covid write an open letter to Sajid Javid, the secretary of state for health and social care.

Dear Mr Javid,

In January of this year we wrote to Boris Johnson, the UK prime minister, urging him to take long covid into account when making policy decisions surrounding the relaxation of covid-19 restrictions. We predicted that once vulnerable groups and older people had been vaccinated, there would be pressure to “open up,” given that unvaccinated younger people would be less likely to overwhelm the NHS. 

The country has now arrived at this juncture: the coronavirus is circulating freely among young adults and children; cases are rising exponentially, but government policy is focused only on hospitalisations and deaths. However, in January, it was not anticipated that we would be facing a more transmissible and possibly more virulent variant which renders vaccines less effective.

The Office for National Statistics estimates that 13.7% of people who contract covid-19 continue to experience symptoms for at least 12 weeks. Their latest report suggests that 962,000 people, or 1.5% of the UK population, have symptoms persisting for four or more weeks and that as many as 376,000 have been impacted for at least a year. Two thirds report that their daily activities are adversely affected. It is still not clear how many will go on to suffer long term chronic illness over years to come. Long covid has been described as our “next national health disaster.”

The need to avoid overwhelming the NHS has been given as the primary aim of the government’s pandemic response.  Unfortunately, continuing to allow SARS-CoV-2 to infect huge numbers of people—27,334 new cases reported on 5 July 2021, with forecasts that daily rates could reach more than 100,000—will have serious implications for the health service despite the lower levels of hospitalisation during acute infection. Thousands of predominantly young, active people are being condemned to prolonged ill-health and disability every day.  As well as putting considerable pressure on the NHS, their reduced capacity to work will further contribute to the impact long covid is already having on society and the economy through reduced output and tax revenues, and increased sick pay and benefits claims.

Long covid has not only been ignored in policy making decisions, and barely mentioned in the roadmap out of lockdown—it has been almost completely absent from the government’s public messaging. The population are now being asked to take responsibility for their own safety and “exercise good judgement“, but due to this communications failure many do not realise the extent of the risk they are taking when exposing themselves to this virus. We note with concern that your fellow cabinet member Rishi Sunak has announced his intention to stop wearing a mask as soon as possible, despite the strong recommendation from the World Health Organization (WHO) that even those double vaccinated should continue to wear masks to protect themselves and, importantly, others from the Delta variant.

There may not be a perfect time to lift all restrictions, but the time is certainly not now. Transmission is increasing at a startling rate, and 36% of adults are not yet protected with two vaccine doses. Infection levels in schools are now approaching those at the height of the second wave. We ask you to urgently reconsider the timing of the removal of all measures to mitigate the spread of covid-19. Any steps towards encouraging mass indoor events and scrapping the wearing of face coverings should be considered with utmost care, taking due heed of the data on infections.

It was the position of your predecessor that “the first responsibility of any government is to protect its citizens”: you must agree that this is an essential part of your job. There is no healthy economy without a healthy population.

Ondine Sherwood is a founding member of LongCovidSOS. She is also an IT professional. Twitter: @selkieO and @longcovidsos

Kay Whitehead is a writer and editor. She is a patient advocate and a member of LongCovidSOS. Twitter: @longcovidsos

Sandra Edwards is a founding member of LongCovidSOS. Instagram: @longcovidsos

Helen Davies is a patient advocate living with long covid and a member of LongCovidSOS. 

Karen Matthews is a member of the campaign group LongCovidSOS with a diagnosis of Long Covid. She works in clinical research infrastructure.

Lyth Hishmeh is an expert advisor on NICE Panel for Long Covid and a founding member of LongCovidSOS.

on behalf of Long Covid SOS.

Competing interests: OS and KW are members of the NHSE Long Covid Taskforce, and as members of LCSOS we were all stakeholders in the development of the NICE guidelines on Long Covid.