As the UK inches towards normality, those with long Covid must not be forgotten

From the vaccine rollout to the reopening of pubs, this stage of the pandemic could be characterised as the hope of a return to normal. I can’t help but think of one group who are struggling with that: the estimated 1.1 million people in the UK who, according to the ONS, have been suffering from long Covid recently.

Long Covid is defined as experiencing symptoms four weeks or more after first getting coronavirus. It’s important to stress that not everyone who experiences long Covid will go on to have long-term chronic illness, but almost 700,000 people said that their symptoms were adversely affecting their day-to-day activities, and 70,000 people have had it for at least a year.

The condition is also a wide umbrella term: the most common symptoms are fatigue, breathlessness and pain, but patients report others including partial hearing loss and numbness. And yet the message of the ONS figures is dauntingly clear: hundreds of thousands of people in this country are experiencing debilitating illness, all at once, with very little idea how to treat it, or when or if it will end.

Ministers appear to be sleepwalking into a public health crisis. It took health secretary Matt Hancock until last week to go on BBC Radio 4 to warn about the issue of long Covid, one year on from the first wave. The risk of long-term disability, meanwhile, has been nonexistent in coronavirus health messaging, in part because few politicians or scientists understand it. The focus throughout the pandemic has understandably been on the number of deaths and hospitalisations from coronavirus, but the long-term impact of illness from the virus should have received as much attention.

Long Covid is not just an issue for individuals but for society at large, particularly because of its effect on the workforce. There are already reports that patient care in the NHS is being hit because many of the healthcare staff struggling with the condition are able to work only part-time, if at all; this is an issue that will probably hit teaching and other key professions in the coming months.

Disabled people have long campaigned for flexible working patterns, and long Covid may be the trigger for employers to finally make more adjustments to help their chronically ill staff stay in work. The normalisation of working from home shows that change is more than possible when there is the will.

The government, for its part, must ensure a proper safety net for those unable to work at all. The social security system is too often ill-equipped to support people with long-term conditions, and this is even more the case for those with fluctuating symptoms such as fatigue.

Few steps will be more important than providing sufficient healthcare. In October, with much fanfare, NHS England announced a network of clinics for long Covid patients. But a recent survey revealed that about 90% of people with long-term symptoms have been unable to access clinical help, and there are many reports of a “postcode lottery” regarding the availability of support.

Long Covid must play a bigger part in both public health messaging and planning. A cross-party group of MPs and peers have rightly urged Boris Johnson to start regularly publishing data on the number of people with long Covid, so it can help shape future government policy towards the pandemic. The vaccination programme is likely to do wonders to reduce hospitalisations, but long Covid will also require a focus on minimising transmission. After all, many of those now struggling with chronic symptoms had only a mild form of the virus to begin with.

Part of this means targeted messaging to young people. “Don’t kill your granny” campaigns in the first and second wave in some ways falsely suggested coronavirus mainly hurt older people, and yet the ONS data shows long Covid rates are highest among 25- to 34-year-olds. Under-30s worried about very rare blood clots from the Oxford/AstraZeneca jab must be reassured by officials about its safety, and led to understand how vital it is that they be protected.

Much of the commentary around long Covid suggests this is an entirely new phenomenon, but the truth is millions of people have suffered from similar chronic illnesses for decades with little support. As the conversation around long Covid grows, we must ensure any help that comes is offered to those with all chronic illnesses. This is about attitudes as well as resources. The National Institute for Health and Care Excellence’s recent announcement that people with chronic pain that has no known cause should not be prescribed painkillers, is an insight into how patients with invisible or undiagnosed conditions are too often disbelieved and denied proper treatment.

The NHS requires both training and increased funding to meet this growing need, not least at a time when it is dealing with the vast backlog in care caused by the pandemic. The risk is of a two-tier system developing, where those with the means can turn to private doctors, physios and therapists for rehabilitation and those without will be left to fend for themselves.

The tendency among scientists and politicians has been to focus on the short-term urgency of saving lives over the long-term impact on public health. But as we work to reduce deaths, we must also strive to protect people’s quality of life. It is likely that unless we act, a growing proportion of the UK’s population will suffer from a long-term health condition we don’t understand or know how to treat, and all without sufficient financial support. As the country enjoys the hope of a return to some normality, those with long Covid cannot be forgotten.

• Frances Ryan is a Guardian columnist