Introduction
Earlier this month, Long Covid SOS commissioned YouGov to find out about attitudes to Long Covid in the UK population. We wanted to know more about the level of awareness among the wider public, how much scepticism existed, whether there were differences across regions of the UK and individual groups.
As far as we're aware this polling is a first in the UK: the Office for National Statistics have carried out extensive surveys using a much bigger sample, but these were mainly to establish prevalence rather than attitudes.
The results were very interesting and, in some ways, unexpected: we didn't envisage that a majority would understand the reality of Long Covid. However, this seems to be at least partially driven by the fact the so many people in the UK - one third - know someone with Long Covid, and half of them know someone who is significantly impacted. Our survey found that 4% of people report that they are living with Long Covid. Of course, there remains a significant minority who are not familiar with the truth about the condition.
What is particularly concerning about these results is that there are a lot of people who think they might have Long Covid but aren't sure, and that so many of them don't know where to go to get help. This we believe is one of the consequences of the lack of public messaging about Long Covid from the government and NHS. It is essential that people in this situation receive the right information, and this is part of our strategy.
We were disappointed that the ethnic minority data was not sufficiently robust to report on, however we can see some concerning trends in terms of knowledge about the condition and intend to carry out further research in this area.
Press Release
60% of Britons know that “everybody, of any age, no matter how many times they have had Covid” can get Long Covid
55% are aware that Long Covid “can limit day-to-day activities such as working, travelling, self-care, social activities”
One in three people personally know someone with the condition
A quarter of Britons are concerned about Long Covid, while 4% are currently suffering from it. 6% believe they may have the condition but aren’t sure
Various demographic groups show greater lack of awareness or scepticism towards the condition
As the Covid inquiry prepares to hear evidence about Long Covid, a new survey reveals widespread awareness of the condition in the face of an absence of public health messaging. But the data suggests there are particular groups lacking information and help.
The NHS defines Long Covid as a post-viral syndrome of up to 15 symptoms that last longer than 4 weeks after a Covid19 infection, the most common being fatigue, shortness of breath. “Brain fog”, dizziness, joint and muscle aches and advises people to contact their GP.
The first of its kind, a new poll by YouGov of 2058 respondents for charity Long Covid SOS reveals the extent of British public awareness of the post-viral condition. Only 7% of people believe Long Covid isn’t a real medical condition. One in three report personally knowing somebody with Long Covid, with 45% in this group knowing someone who has been “impacted a lot”. These people with personal experience of the debilitating impact of Long Covid are twice as likely to be concerned about the condition than the average.
Nearly one in seventeen people (6%) polled said they might have Long Covid but are not sure - of these, half (3%) don’t know where to go to get help.
"It’s stolen my daughter Amie’s childhood. At the end of this month, it will be a year that she’s had this. We had over 7 months of going back and forth to the doctors - her dizzy spells and feeling faint were put down to hormones. We finally went to another doctor, who took our concerns seriously and referred her to see a paediatrician, who finally told us it seemed to be pointing to Long Covid" - Jennie, Essex
Ondine Sherwood, CEO of Long Covid SOS said:
“Covid levels are consistently high and we are sleepwalking into a health crisis. There is a perception that people have 'moved on’: the government does little to update and promote information to encourage people to avoid infection, to get a diagnosis and to seek help. But despite this, the majority of Britons know the upsetting truth: Long Covid can strike anybody at any time, and can limit their lives massively. Over four years on, it seems people are being left to learn the lessons of the pandemic the hard way - through the experience of their own illness and that of friends and family. The government needs to dedicate more resources to awareness and prevention and we need clear public health messaging: the only way to prevent Long Covid is to avoid a Covid infection.”
Lack of Long Covid awareness in certain groups
People in Wales, Scotland, and those who are unemployed or not working were more likely to respond “I might have Long Covid but I don’t know where to get help”.
Long Covid SOS trustee and UCL Professor of Clinical Data Science Amitava Banerjee said:
“These data also hint at a real problem amongst minority ethnic groups - more research is needed and we need to do more to reach these communities, who have been hit hard by Covid and have a history of experiencing health inequities. In addition there is a significant minority of people who don’t know the facts about this condition, nor understand that it is indiscriminate and can impact anyone.”
Prof Nisreen A Alwan Professor of Public Health at the University of Southampton said:
“We know that Long Covid stigma is widespread, and many people are very careful telling others about their illness to avoid judgement and negative stereotyping. Unless we actively work to tackle such stigma and raise awareness among professionals and the public alike, health inequalities in relation to Long Covid are likely to widen.”
Awareness of the potential impacts of Long Covid was markedly lower in Northern Ireland and London, and amongst the unemployed.
While young people (18-24) and full-time students are the groups most likely to report personally knowing somebody with Long Covid, this youngest age bracket polled is also the most likely to say “I don’t want to think about Long Covid”.
Despite widespread disinformation on social media about Long Covid, the numbers of people who describe themselves as “sceptical” of Long Covid (12%) or believe it is caused by the vaccine (5%) are relatively low. Men and 18-24 year olds were more likely (9%) to believe Long Covid isn’t a real medical condition.
Long Covid SOS urges people who suspect they might have Long Covid to talk to their GP even if they never tested positive for Covid19. As awareness of this condition grows, the charity is asking the government to provide better public health messaging so that people understand how to avoid Long Covid and how to get help.
Long Covid SOS provides resources for patients and healthcare professionals, as well as support for people affected by the condition, campaigning for access to treatment, more research and better public information.
Background
All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2058 adults. Fieldwork was undertaken between 30th September - 1st October 2024. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+). This omnibus polling was commissioned by Long Covid SOS, which is a UK charity advocating for recognition, research and rehabilitation for people with Long Covid. Long Covid SOS is staffed by volunteers. The charity has played a major role in generating awareness of the condition through social media and press campaigning as well as by working directly with the NHS, researchers, relevant institutions and government.
The poll is the first of its kind in the UK focusing on public awareness of Long Covid. Other data previously available comes from the March 2024 ONS Winter Coronavirus (Covid-19) Infection Study, which estimated that just under 2m people had Long Covid in England and Scotland, with 381,000 having their lives impacted “a lot”. The 2024 GP Patient Survey conducted by the NHS found that 4.6% described themselves as having Long Covid, and 9.4% of patients were not sure. Recent US research on awareness of Long Covid also revealed great disparities in awareness of the condition between social groups.
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