What is long COVID?
Most infections with COVID resolve within the first few weeks. But some people who catch the virus do not get better as quickly as expected, even those who have not been severely ill.
Having persistent symptoms is referred to as ‘long COVID’. Depending on how long the symptoms continue, it can be called one of two things.
Where the symptoms have lasted more than four weeks it is classed as ongoing symptomatic COVID and where they last beyond 12 weeks it is known as post-COVID syndrome.
Symptoms of long COVID can be many and varied and can change over time. The most commonly reported symptoms include:
- chest tightness
- concentration or memory issues
- depression and anxiety.
Evidence is emerging that people who have been vaccinated are less likely to develop long COVID even if they are infected.
How common is it?
Data from the Office for National Statistics (ONS) has suggested 3 to 12 per cent of adults infected with coronavirus have symptoms 12 weeks after an initial infection.
Through regular monitoring, the ONS is able to estimate how many people may have long COVID at any one time. In March there were thought to be 1.5 million people in the UK – 2.4 per cent of the population – who had been experiencing symptoms for more than four weeks.
Around 1.1 million of them had had them for at least 12 weeks.
In around two thirds of cases the symptoms were affecting their ability to day-to-day activities.
The data suggests long COVID is more common in:
- 25 to 49-year-olds
- people with underlying conditions which limit their activities
- those working health, social care or education
- people living in poor areas.
The estimates for prevalence among children are much more wide ranging, varying from 1 per cent to 14 per cent after infection.
There is little evidence though that significant numbers have been left with severe symptoms that affect their daily lives, according to the Clock study, the world’s biggest research programme into long COVID in children and young people which is led by University College London.
What support is available?
Currently there are no proven drug treatments, with the main focus on managing symptoms and gradually increasing activity where possible. For most people the symptoms do get better in time.
Around 90 long COVID clinics have been set up across England to provide specialist help to those who need it. Similar centres have opened in Northern Ireland, while in Scotland and Wales patients are referred to different services, depending on their specific symptoms.
The support on offer at these long COVID clinics vary. Some simply assess patients and refer them on to other hospital services, while others have dedicated teams drawing in expertise in neurology, cardiology and various therapies.
People with persistent symptoms are being encouraged to see their GP who can organise a range of tests, such as blood tests, heart tests and x-rays and refer on to the long COVID clinics if necessary.
The NHS has also set up a website, ‘Your COVID Recovery’, which people are being encouraged to use. It provides advice on how to manage symptoms and when to seek help.
What is the role of local government?
While the long COVID clinics are being run by the NHS, local government is also playing an active role in developing and supporting these new services.
Some councils are working with their local long COVID clinics to understand more about prevalence locally and problems people may be having accessing support.
Others are working with the voluntary sector to improve access to community support and rehabilitation to work in tandem with the clinics, while some have even set up their own long COVID services.
Moving forward councillors, as local leaders, will have a vital role in championing the need to develop support for people struggling with persistent symptoms.
Calderdale: developing support in the community
Calderdale Council has worked with its local clinical commissioning group to try to ensure there is community support available for people with long COVID to complement the work being done by the dedicated NHS clinic.
To achieve this, the public health team carried out a scoping exercise to identify the prevalence of long COVID locally and identify what support was in place.
The project, which started last autumn, was led by Public Health Registrar Sulia Celebi. She used ONS data on the condition, taking into account higher-than-average infection rates experienced in the region, to identify prevalence.
The estimates are regularly updated and currently suggest there are 4,800 people with long COVID – 1,000 of whom for which it is severely affecting their daily activities.
She also worked with the voluntary sector and local NHS to look at where support could be improved. “The NHS clinic is up-and-running and we already have a variety of support available in the community, such as social prescribing. But there were a couple of key areas where help has been lacking – in particular peer support and in the workplace. That knowledge has allowed us to work in partnership to address these shortfalls,” said Ms Celebi.
Social enterprise group Shared Harmonies has been funded to run a singing-based long COVID rehab group, while the council is working with a local woman who is helping establish a peer support network.
“It is about building on what we have in the community. For example, Shared Harmonies run a COPD group so were able to build on that to launch a COVID one,” added Ms Celebi.
Alongside this the council is in the process of developing an online long COVID seminar for employers to provide them with information about the condition and how they can support staff who are struggling through steps such as flexible working and via occupational health.
On top of this, Ms Celebi is running workshops for key community workers, including the health improvement workers and COVID champions. “The evidence is still emerging on COVID, but we want to make sure people understand the problems those with the condition face and that there is support there outside of the NHS long COVID clinics to help them.”
Cornwall: a deep dive into public’s long COVID experience
Cornwall Council’s public health team is running a collection of surveys on long COVID and the wider impact of the pandemic on the local population. There are three strands to the research.
Research group PFA has been commissioned to carry out a telephone survey of around 1,500 people. The sample is representative of the local population both geographically and demographically.
The half-hour poll asked whether people are struggling with persistent symptoms, whether and how they have sought help and what other underlying health conditions they have. It also asks about the wider impact of COVID on issues such as employment, mental health and education.
This was completed at the end of March and is being followed with an identical online poll run by the council itself.
The third strand is a qualitative piece of work targeted at specific groups, such as the homeless, those with substance misuse problems, children and younger people, ethnic minorities and victims of domestic abuse.
Two voluntary sector groups – Healthwatch and Community Helping All of Society (CHAOS) – have been commissioned to carry out this project, which has been run through focus groups and one-to-one interviews in collaboration with charities supporting these groups.
Advanced Public Health Practitioner Rebecca Cohen said: “Our aim is to provide an in-depth report into the findings later this year for our partners working across Cornwall and the Isles of Scilly.
“It will take years to fully understand and collate the evidence around the impacts long COVID has on individuals and the health and care system, but this is a first step to understanding the picture locally.
“We hope this will help our local NHS long COVID service and the wider system to target delivery and understand more about the needs of those still experiencing long COVID symptoms.”
Middlesbrough: running your own long COVID clinic
Middlesbrough Council and South Tees Public Health have set up their own community long COVID clinic.
The 12-week Restart programme offers tailored exercises and support designed to help with long COVID symptoms. It is run from the council’s Live Well Centre, a five-storey one-stop-shop for public health situated in the town’s Dundas Shopping Centre.
It boasts a gym along with a range of services from smoking cessation and mental health support to employability help, meaning those with struggling with persistent symptoms have a wide range of options for help.
As well as being designed for those suffering from long COVID symptoms, people at an increased risk of contracting COVID who may be expected to have a worse recovery from the disease, such as those with a BMI over 40, diabetes, coronary heart disease, or limited mobility, can also access support.
Referrals come from GPs, but also the local NHS long COVID unit itself, which is run by James Cook University Hospital. The two services work in tandem with the Restart team able to send patients off for x-rays and other hospital checks if required.
One of those who has been helped is Ian Davison. The primary school teacher caught the virus last year and six months later was still in pain, exhausted and struggling to breathe. He did not leave the house and was unable to do day-to-day tasks like shopping.
He enrolled on the Restart programme and within weeks was in the gym and following a tailored programme of exercises and get help from a physio to overcome his symptoms.
He returned to work in autumn. “The support has literally been a life-saver. I can’t say good enough things about it. Before I started the programme, I felt alone. You begin to think you're never going to get better.
“But the team at the Live Well Centre know how to help, they push you when they think you need to be pushed but they also understand when you've done enough, and provide encouragement.”
Director of Public Health for South Tees, Mark Adams, said the service is providing vital support. "Long COVID can be debilitating for those living with it. It’s important for people to know they are not on their own – support is available.”
Merton: raising awareness about long COVID
The London borough of Merton is using its network of community champions to spread the word about long COVID.
The 165 champions, which include councillors, council and NHS staff and those involved with the voluntary, community and faith sectors, have been given training to have structured conversations about a range of issues, including long COVID, so they can engage others in conversations about it.
As part of those conversations, they explain what help there is available as well as the risks of long COVID as part of their work to encourage vaccination uptake.
Public Health Lead for COVID Resilience Barry Causer said: “We are calling this approach ‘vaccination-plus’. We’re bundling conversations – so as well as talking about long COVID we are combining that with the continued importance of vaccination and also the therapeutics that are available for extremely vulnerable residents as part of a wider focus of living fairly and safely with COVID.
“For example, the champions will explain about the signs and symptoms of long COVID and where they can go for help and let them know about local NHS services or self-management tools.”
Alongside this, the council – through the community sub-group of the Health and Wellbeing Board that was set up at the start of the pandemic – is looking at other ways of raising awareness about long COVID. Options being considered include community workshops and establishing a drop-in service to provide advice and support on long COVID.
Mr Causer said: “We are working with the South West London Clinical Commissioning Group on the potential for using vaccination hubs, in the east and the west of Merton, as a place where people could get advice and support.
“There is a range of clinicians in there who could play an important role in supporting residents to know more about the services that are on offer.”
Questions to consider
Do you know what the prevalence of long COVID is in your area?
Are you working in partnership with the local NHS long COVID clinic?
Have you reviewed the way community support, such as social prescribing and physical activity programmes, are linking in with long COVID services?
Have you thought about setting up a long COVID advice service?
Could training be provided to community leaders and staff working in health and care so they know what advice to give people who are struggling with persistent symptoms?
Could some of your wellbeing programmes be tailored to help with long COVID rehab?
Do you know what the experience of people who are trying to get help is and what challenges they may be facing?