Long Covid campaigners urge Sajid Javid to ‘reconsider’ timing of restriction lifting

Exclusive: ‘We have been an afterthought in the government’s response,’ say those struggling with long-term after-effects of Covid-19

The health secretary has announced that all remaining rules will be lifted later this month (AFP/Getty)

Long-Covid campaigners have written to health secretary Sajid Javid urging him to “reconsider” the lifting of all restrictions later this month, amid fears that people with the condition have become “an afterthought” in the government’s response to the pandemic.

LongCovidSOS, an advocacy group that campaigns on behalf of survivors of Covid-19 who suffer from long-term after-effects, said the decision to allow the virus to rip through communities would condemn “thousands of predominantly young, active people … to prolonged ill-health and disability every day”.

The group has also sent a letter to the prime minister, urging him to include long-Covid sufferers in the forthcoming public inquiry into the UK’s handling of the pandemic, which is currently set to be conducted in spring 2022.

Although the link between infection and hospitalisation has been weakened as a result of the vaccines, there are concerns that the prevalence of long Covid will increase as more people are exposed to the virus in the coming months, with nearly 40 per cent of all adults still waiting to receive a second jab.

Estimates from the Office for National Statistics suggest that 962,000 people have symptoms such as fatigue, breathlessness and ‘brain fog’ that persist for four or more weeks, and that 13.7 per cent of people who contract Covid-19 continue to experience after-effects for at least 12 weeks. As many as 385,000 people have been affected for at least a year, the analysis shows.

These figures are only set to rise, with the health secretary admitting on Tuesday that Covid infections could reach a level of 100,000 a day this summer.

In its letter to Mr Javid, LongCovidSOS said that the removal of all regulations later this month, at a time when cases are surging exponentially, will have “serious implications for the health service despite the lower levels of hospitalisation during acute infection”.

NHS chiefs said back in April that a rise in people reporting long-Covid symptoms was putting “additional pressure” on the health service, which must now also contend with a backlog of millions of patients waiting for treatment and care related to non-Covid health problems.

LongCovidSOS acknowledged that there “may not be a perfect time to lift all restrictions, but the time is certainly not now”.

The group added: “As well as putting considerable pressure on the NHS, [victims’] 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.  

“We have been an afterthought in the government’s response.”

Scientists have also warned of the dangers of fuelling a new health crisis by allowing young people to catch the virus and potentially develop long Covid.

“We know that the infection can damage the lungs, brain, and other organs; and such damage may cause long-term or permanent impairment,” said Dr Peter English, the former chair of the BMA’s Public Health Medicine Committee.

“Young people may carry such impairment for the rest of their lives. This harms them directly, and there is a substantial cost to society if people require more care, and are less able to contribute (through work and taxes, volunteering, informal caring and so on) for the rest of their lives.

“It is far too soon to be sure of the extent of the long-term harms; and this should require a degree of caution.”

Dr Julian Tang, a clinical virologist at the University of Leicester, said it was unknown whether the incidence and severity of long-Covid complications might differ between variants, which are expected to continue to emerge as the virus keeps spreading through different communities and populations.

LongCovidSOS has said that the inquiry into the government’s handling of the pandemic should be conducted as soon as possible, after the PM’s decision to hold it in spring 2022 was widely condemned.

The government’s legal department has noted the group’s request but has yet to confirm its members’ involvement in the consultation process for the public inquiry.

Jane Ryan, a lawyer who is representing the group, said it is important that people who have been adversely affected by Covid are able to participate in the inquiry and ensure that their long-term health experiences are used to help guide future pandemic preparedness.

“To comply with human rights standards, the public inquiry must include survivors of C19 with long Covid,” she said. “My clients have the right to participate and ask questions of the government about risks they were exposed to by the government’s failings throughout the pandemic.”

Ms Ryan said it is “unacceptable” that there is little mention of the risk of long Covid under the government’s new plans to reopen society and “live with the virus”.

“We continue to suffer debilitating symptoms and we need assurance that urgent lessons will be learned from the government’s response to the pandemic,” a spokesperson for LongCovidSOS added. “We call for the inquiry to take place as soon as possible.”