Action Now!

#Long Covid: Time for Action, published by the Tony Blair Institute for Global Change, 29 October 2020

Blog post written with Dr Will Nutland, Clare Shakya

Every day our phones ping with the same message: “Testing alone can’t get us through the second wave.” Dutifully, we log in to the ZOE Covid-19 Symptom Study app, as do more than 4 million others.

This month, the researchers responsible for those pings confirmed what we already knew: Lots of younger people continue to experience symptoms for months after getting sick. Most are women. Few were hospitalised.

We know because we are among this large – and growing – group of Brits. Announcing a new batch of interim results on Covid-related organ damage, Coverscan founder Dr Rajarshi Banerjee emphasised the importance of moving fast, saying: “If 20 per cent of the UK will be exposed to Covid-19 by the end of the year, we need to prepare now.”1

The data from ZOE and Coverscan’s research tell us that we need to be ready for up to 2 per cent of the UK population – as many as 1.3 million people – to experience intermittent, unpredictable symptoms long after ten days (the alleged recovery period). Estimates vary and can be hard to interpret, shifting as research teams do their work, but the clear headline is that many of us are not bouncing back to normal life – we are not walking, breathing or sleeping normally. Many of us still struggle with taste and smell, or we cannot tolerate alcohol. Plenty have become intolerant to exercise – crucial for health and well-being – experiencing extreme relapses after even the simplest exertion. And a lot of us lack the ability to focus, struggling with “brain fog” and word finding.

Nearly all of us with persistent, intermittent symptoms find our daily lives blighted by fatigue and exhaustion; our lives turned upside down.

Banerjee reassured trial participants: “This is not malingering.” Rather, Coverscan’s early findings (based on extensive scans of 201 people with Long Covid) show that 66 per cent of us have damage to at least one of our organs (heart, lung, kidney, liver or pancreas) and 25 per cent of us have damage to two or more. They cannot say yet whether this damage is caused by SARS-CoV-2; maybe it is one of the reasons we got sick for longer and didn’t shake off the virus within ten days.  

While it’s good to know these weird symptoms are not all in our heads – the reality remains scary. All three of us are trial participants, awaiting our detailed reports. The information will be shared with our GPs. But then what?

Recognition is building, but still too few grasp that there are not simply two outcomes to this disease: death or a mild flu. Most of our GPs are at a loss of what to advise, even in areas where Covid-19 has already ripped through the community, and often the GP surgery staff too. We are all struggling with a bizarre range of symptoms, unable to get off the sofa, let alone back to work. Meanwhile, little financial support is available.

The hundreds of thousands of people living with lingering, debilitating symptoms of Long Covid urgently need Matt Hancock and the UK government to count us, to support us and to engage us in the response.

On 28 August, we wrote to Matt Hancock through the Health Select Committee. These are our asks:

Support us with quality, well-informed care, and help us to get back into work

Research is starting to show that our bodies are not working the way they used to, but we do not have the support needed to recover. Sympathetic GPs currently have nowhere to send us for specialist help.

The current health-care focus is on hospitalised patients. This is important, but death is not the only risk of Covid-19, and long-term symptoms are more pronounced in those of us who were never hospitalised. We need well-trained health workers, effective interventions and new treatments – not just pain killers, fluids and rest. We need more than lung specialists. Multi-disciplinary clinics are essential to support our rehabilitation, as a number of organs are affected: early Coverscan data suggests cardiac issues are top of the list. These clinics must support our mental health too – our support groups show that this long, confusing and recurring illness has significant impact on our resilience.  

Matt Hancock has announced £10 million in funding for NHS Long Covid clinics in England. But with an estimated 300,000 people with Long Covid, that works out at just £33 each. More investment is essential to mitigate the very real economic impact of having so many of people off work for extended periods.

We need income protection, particularly for health and care workers who got sick while carrying out their work, but also for those of us who are self-employed or on zero-hour contracts. Many of us feel forced to put our damaged bodies under dreadful strain to earn any income, and the UK economy is already losing vital skills because those of us with Long Covid cannot access the type of tailored employment support, rehabilitation and care that we need.

Count us and find out what is really going on

The UK leads the world when it comes to Long Covid research. We respect and admire the researchers that have been working so hard from the start of the year. But they still do not have the right levels of funding. The ZOE app, led by King’s College London and Professor Tim Spector, has brought the best emerging picture on the scale of Long Covid into the public domain.

We believe, however, the UK government needs to commit real funds to far more research: counting those of us with Long Covid, building understanding of the breadth of risks associated with Covid-19 and how to tackle our symptoms.

We need the full range of research, including (but not limited to) biomedical, psycho-social and behavioural sciences. From our lived experience, we know how important it is to scale up more investigation into the history of Covid-19, the risk factors and potential causes of Long Covid, diagnostic reliability, viraemia and ongoing or intermittent infectivity, the impact of Covid-19 on different organs and, importantly, therapeutic options and rehabilitation approaches for people with Long Covid.

Engage us: Nothing About Us Without Us

In these strange times of isolation, our online peer support groups have been a lifeline, enabling those of us with Long Covid to get help from each other and get the message out that we exist and what we need. This has been entirely volunteer led and is not sustainable, especially as our numbers grow into the tens of thousands. 

Two of us met at the Terrence Higgins Trust during the early 1990s AIDS response. We know how important it is to place the people most affected at front and centre to forge change in public health. For all health conditions, especially new ones like Long Covid, the best public health responses start with the realities of people who are most directly affected. The government needs to invest in the structures that we have built for ourselves, and make sure our voices are central, for support and for people to avoid getting and spreading Covid-19.

The UK desperately needs a multi-disciplinary Long Covid taskforce that includes researchers, professional bodies and representatives of peer-led groups to address the urgent needs of people living with persistent, ongoing symptoms of Covid-19. There are rumours the NHS is setting one up – but we don’t know yet who it reports to, what it does, or how they will put in place the structures for unpaid volunteers to carry forward the voices of thousands.

Sadly, the number of people living with Long Covid is growing fast. Our needs must be central to the UK government’s approach to improving services and support, to research and to improving public health programmes. We have insights to offer from our lived experience that will enable a more effective response. When we tell friends and strangers what we are living through they are often motivated to follow public health rules. We don’t look like the elderly people everyone thinks are at risk of Covid-19, so we offer a valuable perspective to the UK’s public health narrative: Covid-19 is not just a mild flu, or a death sentence for the elderly. It can be life changing and debilitating for many thousands of us.

We don’t want more people to join our Long Covid support groups. For that to happen, we need government to support us, count us, engage us.

Robin Gorna, Dr Will Nutland and Clare Shakya have had Covid-19 symptoms since 1 May, 15 March and 21 March, respectively.