HOLYROOD’s COVID-19 Recovery Committee has published its report on Long COVID and post-COVID syndrome, urging the Scottish Government to take action to address the stigma surrounding the condition and improve awareness among the public and healthcare professionals.
The inquiry focussed on the awareness and recognition, therapy and rehabilitation, and study and research linked to Long COVID, with the Committee noting “concern” in their findings over reports of patients being unable to get the correct diagnosis and the lack of treatment for common conditions associated with the condition.
The Committee said it was “deeply saddened” to learn about the stigma faced by those with lived and living experience of Long COVID, and the report highlights the impact that the lack of awareness and recognition of Long COVID can have on those with the condition.
The Committee also recommended the Scottish Government:
Works with the National Strategic Network and health boards to establish a single point of contact for Long COVID patients in every health board and develops standardised guidance.
In partnership with the National Strategic Network, provide a leadership role in reviewing the best practice of Long COVID clinics and evaluate whether they may be an appropriate development in Scotland.
Implement a public health campaign to raise awareness of long COVID and the impact it can have on individuals’ health and wellbeing.
Reviews the current booster vaccination publicity strategy to reduce apathy and encourage uptake.
Supports improving the integration of health boards and the third sector to provide self-management services for Long COVID.
Throughout the four-month inquiry, the Committee took evidence from a broad range of academics, clinicians and those living with Long COVID about the complex nature of the symptoms and the apparent lack of any lessons being learned from other chronic illnesses such as ME/CFS.
The Committee also made calls for more data on the prevalence of Long COVID to be gathered and noted the impact that incorrect coding of the condition can have on the accuracy of data, alongside encouraging improved use of data deployment into clinical practice.
Commenting, Committee Convener, Jim Fairlie MSP said:“The report sets out the urgent need for the Scottish Government to take action to address the stigma and lack of awareness surrounding Long COVID and to improve the diagnosis and treatment for individuals living with this condition.
“Throughout the inquiry we’ve been deeply saddened and concerned to hear of the stigma being faced by those with lived and living experience of Long COVID and the impact this lack of awareness can have on people’s mental health and wellbeing, their educational and employment opportunities and their overall quality of life.
“We’ve now made several recommendations including establishing a single point of contact in health boards, increased leadership by the Scottish Government in assessing the effectiveness of Long-COVID clinics, raising awareness and understanding of the condition and making better use of health data.
“The recommendations made in our report must now be acted on to ensure that the stigma associated with long COVID is addressed, enabling those suffering from the condition to receive the recognition and support they both need and deserve.
“The Committee also wants to, once again, thank all of those who participated in the inquiry and recognise in particular the input from those with experience of the condition, whose evidence helped shape this inquiry from the outset and these recommendations to the Scottish Government.”
Responding to new figures published on Long Covid by the Office for National Statistics (ONS) yesterday, TUC General Secretary Frances O’Grady said: “Around two million people in the UK are living with Long Covid – more than the populations of Manchester and Birmingham combined.
“Economic inactivity is rising almost 10 times as fast for people with Long Covid than for those without the condition. And older workers are being hit the hardest.
“Ministers must ensure everyone with Long Covid is recognised as disabled under the Equality Act. This will give them the support they need to continue to do their jobs and formal protection under employment law.
“And Long Covid must also be recognised as an occupational disease. That would entitle employees to protection and compensation if they contracted the virus while working.
“It’s a scandal that more than two and a half years after the first lockdown, the workers who kept our country going through the pandemic have still been offered no support.”
The ONS figures show that:
Between July 2021 and July 2022, the inactivity rate among working-age people with self-reported Long Covid grew by 3.8 percentage points, compared with 0.4 percentage points among working-age people without self-reported Long Covid.
The relationship between self-reported Long Covid and inactivity (excluding retirement) was strongest for people aged 50 to 64 years, where the higher odds of inactivity compared with pre-infection peaked at a 71.2% increase among people reporting Long Covid 30 to 39 weeks post-infection.
The full ONS figures on Long Covid are available at:
Thousands more people living with long COVID will find it easier to get help as the Scottish Government boosts funding for an advice line.
Chest Heart & Stroke Scotland (CHSS) has been awarded £157,000 to continue offering expert advice on how to manage long COVID symptoms such as fatigue and breathlessness.
The charity will recruit extra staff to ensure more people can speak to a trained nurse who can offer practical support for anyone struggling with the long-term effects of COVID.
This service is helping ease winter pressure on the NHS by enabling people to speak directly to healthcare practitioners from the comfort of their own homes. This is one of the many ways the Scottish Government is boosting care in the community to help ease pressure on A&E departments.
This complements the support for long COVID already being delivered by NHS boards. The Scottish Government has made an initial £3 million available to boards to develop local pathways providing co-ordinated access to services including physiotherapy, occupational therapy, and mental health support.
Health Secretary Humza Yousaf said: “I recognise how debilitating long COVID is for many people across Scotland – it is therefore vital that people can get help to manage their symptoms and know when to escalate and see a doctor.
“Chest Heart & Stroke Scotland’s service is helping people with long COVID across Scotland from the comfort of their own homes – helping support them sooner and easing the pressure on our NHS over the winter months.”
CHSS Interim Chief Executive Allan Cowie said: “There are 180,000 people living with Long COVID in Scotland today and they desperately need services like this to help them get their lives back.
“CHSS is grateful to the Scottish Government for funding the national CHSS Advice Line. The advice line is a key part of the Pathway service, and this funding means we’re ready and able to work with every health board and GP in Scotland.”
Advice line user Chloe Folta, 26, from Penicuik became ill with COVID-19 in December 2021.
The biology and science teacher said: “I was referred to CHSS in March. I filled out an online survey that asked what kind of support or help I needed, so I was able to request telephone support. And that was so helpful to me.
“The calls were partly about how I could manage my symptoms, deal with the pain and eventually get back to work, and they were really specific to me, which was great. What was really beneficial was that CHSS gave me advice on how to talk to my doctor about the symptoms.
“I still suffer from fatigue and muscle and chest pain. Brain fog has been a real issue, too. I was very active before, and it’s been hard to adjust and scale back to doing almost nothing.
“It felt very supportive to speak to someone from CHSS and know that someone understood and was sympathetic to what I was going through. Having this service is a must for people in my situation. We all need that support.”
Two community support co-ordinators will deliver one-to-one and group support, and five healthcare practitioners will work on the CHSS Advice Line to offer expert support, advice and reassurance to anyone living with long COVID.
To contact the Advice Line nurses:
Call 0808 801 0899 (FREE from landlines and mobiles)
An innovative pilot project to transform support for Long Covid patients in Scotland is underway to improve care for people living with the condition and dramatically relieve the pressure on GPs.
The platform, called ‘MyTailoredTalks’, has been developed by Pogo Digital Healthcare and has been jointly funded by NHS Lothian, CHSS and the NHS Lothian Charity (formerly Edinburgh and Lothians Health Foundation) – with £120,000 invested in the platform so far.
It will allow GPs and other clinicians to refer patients automatically to the CHSS’s Long Covid support services and to provide tailored self-management information to patients.
Over 70 patients are taking part in the pilot across 26 GP practices in the region.
The team behind the project is appealing for partners to expand the ground-breaking innovation beyond Lothian so that everyone with Long Covid in Scotland can get better access to support.
Lothian-based GP Amy Small is living with Long Covid. She has been at the heart of developing the new system. She said:“As a GP and someone living with Long Covid this new digital system will be hugely beneficial to patients and primary care.
“It’s a big breakthrough in integrated care. It gives patients direct access to support to help manage their condition.
“GPs will also now be able to seamlessly refer their patients through to the charity’s Long Covid Support Service which provides one-to-one support and advice from experienced advisors who can provide more time to the patients than GPs can.”
Health Secretary Humza Yousaf welcomed the project. He said:“Chest Heart & Stroke Scotland’s Long Covid support service not only supports people living with Long Covid, but also helps reduce some of the pressure on NHS services. That is why we have funded and continue to support Chest Heart and Stroke Scotland to deliver a Long Covid Support Service.
“I welcome this collaboration and investment. This kind of digital innovation is just one example of the flexible way in which our NHS boards across Scotland are adapting to meet the needs of people with Long Covid. We are spending £3m this year to support NHS boards like NHS Lothian to develop and deliver the best models of care appropriate for their local population’s needs.
“I look forward to seeing the full results of the pilot exercise and we are committed to working closely with Chest Heart & Stroke Scotland to share the learning generated from it to support the sustainability of our health services.”
Professor Tim Walsh, Director of Innovation for NHS Lothian, said:“This project shows what can be achieved by the NHS, patients, charities and digital expertise working closely together to find innovative solutions.
“The personalised ‘MyTailoredTalks’ have been designed to provide trusted ‘bite sized’ information for patients to access whenever they need to and be able to share with family or friends.
“We hope that these, together with the holistic support CHSS offer, will make a real difference to people living with Long Covid.”
Allan Cowie, interim chief executive at Chest Heart & Stroke Scotland, said:“For the past two years we’ve been campaigning alongside people living with Long Covid to ensure that systems are in place to help them easily access the care and support they desperately need.
“This system has the potential to transform access to wraparound care through GP services. It has been developed with clinicians and people with Long Covid and we want it to be adopted right across the country as soon as possible.
“It not only makes this process easier for people living with Long Covid, but it helps to alleviate some of the pressure that primary care is under by allowing clinicians to easily refer their patients into a service they can trust.”
Greig Brown, 44, contracted Covid-19 in January 2021 and has been hospitalised twice because of the condition.Once a keen runner and cyclist, Greig now lives with the symptoms of Long Covid, suffering from severe breathing difficulties and memory loss.
He has not been able to return to his job as a joiner at St John’s Hospital in Livingston, and he fears he will never regain the health and fitness he once had.
Greig lives in Armadale, West Lothian, with his partner, Sam. Their plans to marry are up in the air as they have had to use their savings while Greig has been off long-term sick.
He says: “This is my reality. I am so breathless and exhausted every day that simply getting downstairs and settled on the couch wipes me out.
“I used to walk miles every day around the hospital, carrying tools and anything else I needed. Now I can’t even walk to the kitchen without needing to sit down.
“My GPs kept telling me Long Covid is all new to them, too, and they don’t know how to treat it.
“I feel as if people like me have fallen through the cracks. I hope having a system in place like this NHS Lothian pilot that lets doctors refer patients directly to the CHSS support service can make a real difference to everyone living with Long Covid symptoms.”
Sanjay Singh, Head of Funding Programmes with NHS Lothian Charity, said the pilot is a “great example of partners working together during the pandemic to achieve patient care that is personalised and, crucially, in response to Long Covid, as we learn more about this awful illness as time goes on.”
“We were delighted to be involved in this innovative project and to be able to support through funding made available to support our communities dealing with the effects of Long Covid,” he said.
Jack Francis, chief executive and founder of Pogo Digital Healthcare, added:“Working in partnership with healthcare professionals, patients and technology experts to develop this innovative new healthcare pathway has resulted in a unique way for patients to manage their Long Covid symptoms.
“I am delighted with the pilot engagement so far from both the patient groups and Chest Heart & Stroke Scotland’s advice line team, and it has been great to be part of such an innovative new healthcare solution.”
Projects to improve the care and support available for people with long COVID are to benefit from an initial tranche of £3 million of Scottish Government funding.
Following a thorough planning process undertaken by health boards to determine the key priorities, the first allocations of the long COVID Support Fund across 2022 will provide £3 million for boards to introduce care co-ordinator roles, extra resource to support a patient-centred assessment, including a multi-disciplinary assessment service, and additional capacity for community rehabilitation to support people with issues affecting their day-to-day quality of life.
Support for people with long COVID is already available across a full range of NHS services. However, this additional investment has been informed by patient experience and expert views brought together by the long COVID Strategic Network set up by the Scottish Government – drawing on priorities identified by people affected by long COVID and recommendations from clinicians.
As well as the awards to boards, NHS National Services Scotland (NSS) has also been awarded £370,000 to support a national programme of improvement work led by the National Strategic Network – this includes £200,000 to provide digital tools to support the care of people with long COVID. The network will also provide an analysis of the specific needs of children and young people living with long COVID in Scotland.
Health Secretary Humza Yousaf, who announced the allocation during a Scottish Parliament debate, said: “We have already supported thousands of people struggling with long COVID through a wide range of measures but the investment announced today has been shaped by priorities highlighted by people with long COVID themselves.
“We’ve engaged directly with NHS Boards, alongside clinical experts and those with lived experience, to identify the support that they need. This will help ensure the investment through our £10 million long COVID support fund will make the biggest different to people living with long COVID.
“Given the range of symptoms which can be involved, we know there’s no ‘one-size fits all’ response and our approach is to support people with long COVID to access care and support in a setting that is appropriate and as close to their home as practicable.
“It’s for each board to explore what is the best service they can provide, this can include a Long COVID Clinic if they believe that is the best model to adopt – and today’s funding will help boards to bolster existing provision for those with long COVID.
“However, just because a service doesn’t say ‘long COVID’ on the plaque when you walk through the door, it doesn’t mean that these services cannot provide, or are not providing, a long COVID service. There is not a specific treatment being provided within long COVID clinics elsewhere that is not already available to those accessing NHS Scotland services.”
NHS Highland Associate AHP Director, Linda Currie said: “The funding allocation is welcomed. Self-management will be offered and we will recruit Occupational Therapy and Physiotherapy to support holistic interventions like fatigue management, vocational rehab, goal planning and dysfunctional breathing.This funding will support coordination of care across the relevant clinical teams and our partners.”
Almost 100,000 people in Scotland have reported that they’re suffering with long Covid but it has taken until today (Tuesday 9 November) for the Scottish Parliament to debate this important issue.
I led this debate in Parliament yesterday because no matter how much campaigners and MSPs raise the issue, the SNP Health Secretary is just not listening.
It is shameful that it has taken an opposition party debate for the plight of long Covid sufferers to be heard in Parliament.
The SNP/Green Government’s action plan on long Covid is totally unfit for the scale of this challenge. Many Scots would be better off moving to England where there are well-established clinics and a care pathway.
We need to do much more to help long Covid sufferers. That is why I am calling on the SNP/Green Government to:
Have specialist long Covid clinics in every health board
Train more long Covid community nurses to offer in-home support
Give everyone who needs it access to physiotherapy and rehab treatment
Make sure long Covid sufferers are not penalised financially because they are absent from work for longer periods
You can join me in calling for action from the Scottish Government by signing up to my plan for long Covid here:
Most people recover from coronavirus within 4 weeks, but for some people symptoms can last longer, or new ones can develop. Symptoms can also change over time and can affect anywhere in the body. This is often referred to as long COVID and can include breathlessness, a cough, aches and pains, insomnia and low mood or anxiety.
The information on NHSinform.scot includes the most common symptoms, how a patient is assessed and how to manage ongoing symptoms.
NHS 24’s Medical Director, Dr Laura Ryan, says: “Coronavirus can vary from person to person, and sometimes recovery can take longer than we would like. The important thing is not to compare with others and to take the time to look after ourselves.
“The information on NHS inform can really help with managing ongoing symptoms until they do naturally fade away. Of course, you should contact your GP practice if you’re worried about the severity or persistence of your symptoms or they’re getting worse.”
Health Secretary Humza Yousaf said: “It is important that people with long COVID symptoms get the right advice and having all the information in one place will hopefully make it easier for them. The information and support available at NHS inform has been designed to help people with their recovery.
“The Long COVID Support Fund was established with £10m last month and was designed to maximise and improve the co-ordination of a broad range of existing services across the health and social care system and Third Sector in response to the condition.”
As part of a drive encouraging people to get vaccinated, young people have shared their experiences of suffering long COVID in a powerful new video.
Young coronavirus (COVID-19) patients have told their stories of battling the virus and suffering long-term debilitating effects as part of a new film encouraging people to get their vaccines.
The video features several patients who experienced serious symptoms of COVID-19 or developed long COVID, as well as the doctors and frontline staff who treated them, to warn of the dangers of the virus for those who are not vaccinated. It is narrated by A&E doctor, Dr Emeka Okorocha.
It comes as people aged 16 to 17 in England are offered a COVID-19 vaccine by today (Monday 23 August), meeting the government’s target. More than 360,000 have already been vaccinated and letters and texts were sent last week to the remaining people inviting them to book an appointment with their GP or visit their nearest walk-in centre.
All at-risk people aged 12 to 15 in England have also been invited for a vaccination and young people are encouraged to take up the offer as soon as possible to build vital protection before returning to school in September.
The latest figures show that hospitals are seeing a rise in unvaccinated young adults admitted with COVID-19. A fifth of COVID-19 hospital admissions in England are aged 18 to 34 – 4 times higher than the peak in the winter of 2020.
The patients who feature in the new short film have issued a rallying call: young people should take up the vaccine to avoid suffering a similar fate.
Quincy Dwamena, a 31-year-old videographer and support worker from East London, who spent 2 weeks in hospital with COVID-19 after putting off the vaccine, said: “I’m a healthy, young guy. I went to the gym often and have no underlying health concerns.
“I put off getting the vaccine because I thought the way I was living my life would mean there would be little to no chance of me catching the virus, or it would have little effect.
“But I ended up being hospitalised and thought I was going to die. My advice is to get the vaccine: don’t put yourself and others at risk, I wish I’d got mine as soon as it was offered.”
Megan Higgins, a 25-year-old special needs tutor from London who is suffering from long COVID, pleaded with others to get vaccinated. She said: “I was always careful about catching COVID-19, but I’m healthy and active so thought if I catch it, I’d probably brush it off.
“It’s now been 8 months since I tested positive, and I can’t even walk around the shops without getting exhausted. Long COVID is debilitating so please, get vaccinated. I wouldn’t want anyone else to go through what I have.”
Ella Harwood, a 23-year-old illustrator from London, said: “I’m young and fit but I was bed-bound for 7 months with COVID-19. Before I caught the virus, I was super active and had no health concerns, but I now suffer with asthma which I didn’t have before and a number of allergies.
“I fear I’ll never be the same again but I’m making progress and I’m very grateful that I’m still alive. Please get vaccinated if you haven’t already.”
Young people in England aged 16 and 17 are able to get vaccinated at one of more than 800 GP-led local vaccination sites and NHS England has launched an online walk-in site finder to help this age group locate the nearest available centre. Further sites will come online over the coming days and weeks.
A total of 89,070,370 people have been vaccinated in the UK, including 47,573,794 people with a first dose (87.5%) and 41,496,576 people with a second dose (76.3%).
Uptake among under 30s is lowest in London where the interviews were filmed.
According to data from Public Health England, the highest COVID-19 case rates are among 20 to 29-year-olds with a case rate of 670.7 cases per 100,000 people in the 7 days to August 8, up week-on-week from 628.6.
More than 1 in 20 people aged 16 to 29 (6.3%) have had long COVID, which is higher than the national average. Many of these have said long COVID has had a major impact on their lives, especially the ability to exercise, work, and maintain relationships.
TV doctor and emergency medicine physician, Dr Emeka Okorocha said: “As an A&E doctor, I’ve seen a lot during the pandemic. But nothing has shaken me like the sight of young, otherwise healthy adults, being rushed into our hospitals with COVID-19.
“As well as their age, many of them have one other thing in common: they are unvaccinated. Vaccines truly are the way out of this pandemic and are the best way to protect everyone from the virus, so please get your vaccine.”
Data from Public Health England (PHE) shows COVID-19 vaccines are highly effective against hospitalisation from the Delta (B.1.617.2) variant, the dominant strain in the UK. The analysis shows the Pfizer-BioNTech vaccine is 96% effective and the Oxford-AstraZeneca vaccine is 92% effective against hospitalisation after 2 doses.
In all age groups the odds of experiencing symptoms for more than 28 days after post-vaccination infection was approximately halved by 2 vaccinations.
COVID-19 vaccines have saved around 95,200 lives and prevented 82,100 hospitalisations and 23.9 million infections in England alone, the latest data from Public Health England and Cambridge University shows.
Alongside Dr Emeka and patients, the film features interviews with the frontline workers who have been treating young COVID-19 patients.
Tom Williamson, physiotherapist at Epsom and St Hellier Hospital Trust who features in the film, said: “We’re treating more and more young COVID-19 patients who are still suffering with long COVID and it’s heart-breaking to see. Patients are experiencing extreme fatigue which means they can no longer do the things they love, and some have had to quit work.
“My message is clear, COVID-19 can affect anyone, regardless of your age or lifestyle so please get vaccinated. It’s the best way to protect yourself and others.”
The government is working closely with the NHS to make it as easy as possible to get a vaccine, including through ‘grab a jab’ pop-up vaccine sites across the country, such as London-based nightclub Heaven, as well as football stadiums and festivals up and down the country.
Health and Social Care Secretary Sajid Javid said: “Vaccines are building a wall of defence in the UK and allowing us to safely live with this virus without restrictions.
“Regardless of whether you’re young, fit and healthy, these harrowing stories really show that COVID-19 can affect anyone. I encourage everyone to come forward for both their jabs as quickly as possible as vaccines are the best way to protect yourself and your loved ones from serious illness.”
Advice and information on the benefits of vaccination have been shared at every opportunity, including through a range of partnerships with industries catering for predominantly younger audiences.
This work has included partnerships with high-profile entertainment and sports personalities on short films encouraging people to get the jab, such as film stars Jim Broadbent and Thandiwe Newton, and football figures Harry Redknapp and Chris Kamara.
The UK Government has also partnered with dating apps, social media platforms and large companies, such as Uber, Asda and Deliveroo, on adverts and incentives to get the vaccine. For example, Asda will offer £10 vouchers for their clothing brand George at select stores to 18 to 30-year-olds who spend over £20, and Deliveroo will be distributing thousands of £5 vouchers over the coming weeks.
Vaccines Minister Nadhim Zahawi said: “There is no doubt the COVID-19 vaccination programme is having a major impact, keeping around 82,100 people out of hospital and saving an estimated 95,200 lives in England.
“But we are seeing more unvaccinated young people in hospital now than ever before. Please don’t delay – get your jabs to avoid a similar fate to these brave people who have shared their stories.”
15 new studies across the UK will expand research into long COVID to support thousands of vulnerable people, backed by nearly £20 million through the NIHR
15 new studies across UK to expand research that will support thousands of vulnerable people
Nearly £20 million for research projects will help improve understanding of long COVID and identify effective treatments
Projects include the largest long COVID trial to date which will involve over 4,500 people
Thousands of people suffering with long COVID will benefit from new research programmes backed by £19.6 million to help better understand the condition, improve diagnosis and find new treatments.
An extensive programme of 15 new research studies, backed by government funding through the National Institute for Health Research (NIHR), will allow researchers across the UK to draw together their expertise from analysing long COVID among those suffering long-term effects and the health and care professionals supporting them.
The latest research shows that although many people make a full recovery following COVID-19, a significant proportion of people continue to experience chronic symptoms for months. These ground breaking studies aim to help those people affected return to their normal lives.
The projects will focus on:
Better understanding the condition and identifying it
Evaluating the effectiveness of different care services
Better integrating specialist, hospital and community services for those suffering with long COVID
Identifying effective treatments, such as drugs, rehabilitation and recovery to treat people suffering from chronic symptoms
Improving home monitoring and self-management of symptoms, including looking at the impact of diet, and
Identifying and understanding the effect of particular symptoms of long COVID, such as breathlessness, reduced ability to exercise and brain fog
Health and Social Care Secretary, Sajid Javid, said: “Long COVID can have serious and debilitating long term effects for thousands of people across the UK which can make daily life extremely challenging.
“This new research is absolutely essential to improve diagnosis and treatments and will be life-changing for those who are battling long-term symptoms of the virus.
“It will build on our existing support with over 80 long COVID assessment services open across England as part of a £100 million expansion of care for those suffering from the condition and over £50 million invested in research to better understand the lasting effects of this condition.”
Professor Nick Lemoine, Chair of NIHR’s long COVID funding committee and Medical Director of the NIHR Clinical Research Network (CRN), said: “This package of research will provide much needed hope to people with long-term health problems after COVID-19, accelerating development of new ways to diagnose and treat long COVID, as well as how to configure healthcare services to provide the absolute best care.
“Together with our earlier round of funding, NIHR has invested millions into research covering the full gamut of causes, mechanisms, diagnosis, treatment and rehabilitation of long COVID.”
The selection process for this broad range of innovative studies into long COVID involved people with lived experience at every stage and their input has been invaluable in shaping the outcome of this call and the research projects which will receive funding.
The projects include:
STIMULATE-ICP at University College London which will be the largest long COVID trial to date, recruiting more than 4,500 people with the condition. With £6.8 million of funding, the project will test the effectiveness of existing drugs to treat long COVID by measuring the effects of 3 months’ treatment, including on people’s symptoms, mental health and outcomes such as returning to work. It will also assess the use of MRI scans to help diagnose potential organ damage, as well as enhanced rehabilitation through an app to track their symptoms.
The immunologic and virologic determinants of long COVID at Cardiff University with nearly £800,000, which will look at the role of the immune system in long-term disease and whether overactive or impaired immune responses could drive long COVID by causing widespread inflammation.
ReDIRECT at University of Glasgow backed by nearly £1 million, which will assess whether a weight management programme can reduce symptoms of long COVID in people who are overweight or obese.
LOCOMOTION at University of Leeds with £3.4 million, which focuses on identifying and promoting the most effective care, from accurate assessments in long COVID clinics to the best advice and treatment in surgeries, as well as home monitoring methods that can show flare-ups of symptoms. The research aims to establish a gold standard of care that can be shared across England and the rest of the UK.
EXPLAIN at University of Oxford backed by £1.8 million, which will seek to diagnose ongoing breathlessness in people with COVID-19 who were not admitted to hospital, using MRI scans to trace inhaled gas moving into and out of the lungs to assess their severity and whether they improve over time.
UK Government Minister for Scotland Iain Stewart said: “Long Covid is a terrible illness affecting thousands of people across the UK, and as it’s such a new disease, there’s still a lot we don’t know about it.
“This UK Government funding, which is supporting studies led by the University of Glasgow and University of the West of Scotland, will help us make progress in understanding long Covid and hopefully improve treatment and support for patients right across the UK.”
Professor Amitava Banerjee, Associate Professor in Clinical Data Science and Honorary Consultant Cardiologist, University College London, Chief investigator of the STIMULATE-ICP (Symptoms, trajectory, inequalities and management: understanding long COVID to address and transform existing integrated care pathways) trial, said: “Individuals with long COVID have long been asking for recognition, research and rehabilitation.
“In our two-year study across six clinical sites around England, we will be working with patients, health professionals, scientists across different disciplines, as well as industry partners, to test and evaluate a new ‘integrated care’ pathway from diagnosis to rehabilitation, and potential drug treatments in the largest trial to-date.
“We will also be trying to improve inequalities in access to care and investigating how long COVID compares with other long-term conditions in terms of use of healthcare and burden of disease, which will help to plan services.”
Dr Dennis Chan, Principal Research Fellow, Institute of Cognitive Neuroscience, University College London, Chief investigator of the CICERO (Cognitive Impairment in long COVID: PhEnotyping and RehabilitatiOn) project, said: “Cognitive impairment, referred to informally as ‘brain fog’, is a major component of long COVID that compromises people’s daily activities and ability to return to work.
“The aim of this study is twofold; first, to understand better the nature of this ‘cognitive COVID’ in terms of the cognitive functions affected and the associated brain imaging changes, and second, to test whether neuropsychological rehabilitation can improve people’s outcomes.
“If this study is successful we will not only understand much better the way in which COVID affects the brain but also provide NHS services with new tools to help people recover from their cognitive difficulties.
Professor Fergus Gleeson, Professor of Radiology and Consultant Radiologist, Oxford University, Chief Investigator of EXPLAIN (HypErpolarised Xenon Magnetic Resonance PuLmonary Imaging in PAtIeNts with Long-COVID) project, said: “Following on from our earlier work using hyperpolarised xenon MRI in patients following hospitalisation with COVID-19 pneumonia, where we showed that their lungs may be damaged even when all other tests were normal, it is critical to determine how many patients with long COVID and breathlessness have damaged lungs, and if and how long it takes for their lungs to recover.
“Hyperpolarised xenon MRI is a safe scanning test that requires the patient to lie in the MRI scanner and breathe in one litre of the inert gas xenon that has been hyperpolarised so that we can see it using MRI.
“The scan takes a few minutes and does not require radiation exposure, so it may be repeated over time to see lung changes. Using this technique, we can see the xenon – which behaves in a very similar way to oxygen – move from the lungs into the blood stream.
“In this way, we can see if there has been damage to the airways in the lungs, or to the areas where oxygen crosses into the blood stream, which appears to be the area damaged by COVID-19.”
Background information
The projects were funded following a UK-wide research call for ambitious and comprehensive research into understanding and addressing the longer term physical and mental health effects of COVID-19 in non-hospitalised people and will build on the existing research already commissioned to look at long COVID.
In February 2021, 4 projects funded by NIHR and UK Research and Innovation (UKRI) were announced, following the first research call.
The UK began the commissioning of long COVID research in 2020 and some projects are already producing results that are informing the understanding of long COVID. This research call adds to the existing investment of over £30 million of research funding taking the total investment to £50 million.
The National Institute for Clinical Excellence (NICE) has issued official guidance on best practice for recognising, investigating and rehabilitating patients with long COVID. According to NICE guidance, ‘long COVID describes signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more).’
In October 2020, NHS England and Improvement launched a 5 point plan for long COVID. There are now 89 specialist post COVID-19 clinics operating in England.
On 15 June 2021, NHSEI published a new 10 point plan and announced an additional £100 million expansion of care for patients with long COVID.
Study summaries
Developing and testing the best ways to diagnose, treat and provide rehabilitation for people with long COVID
Dr Amitava Bannerjee, University College of London – £6.8m
The wide-ranging symptoms of long COVID are debilitating and need coordinated care from specialists, hospitals and community services. The STIMULATE-ICP (Symptoms, trajectory, inequalities and management: understanding long COVID to address and transform existing integrated care pathways) trial, developed with the help of patient organisations, will be the largest long COVID trial to date, recruiting more than 4,500 people with the condition. This project will test the efficacy of existing drugs to treat long COVID, and measure the different effects of three months’ treatment on patients with regards to their symptoms, mental health and outcomes such as returning to work. It will also assess the use of MRI scans to help diagnose potential organ damage in those recovering from the coronavirus, as well as enhanced rehabilitation – the provision of joined-up specialist care centred around an app for patients allowing them to track their symptoms.
Optimising standards of care for long COVID in hospitals, doctors’ surgeries and at home
Dr Manoj Sivan, University of Leeds – £3.4m
Although there are 83 long COVID clinics in England, most people have not had access to them, and face long waiting times to be seen. The LOCOMOTION (long COVID multidisciplinary consortium: optimising treatments and services across the NHS) project focuses on identifying and promoting the most effective care, ranging from accurate assessments in these clinics to the best advice and treatment in surgeries, as well as home monitoring methods that can show flare-ups of symptoms. Drawing from the experiences of current long COVID patients and NHS professionals, the research aims to establish a ‘gold standard’ of care that can be shared across England and the rest of the UK. Analysis will be conducted in 10 long COVID clinics, at home and in doctors’ surgeries, and the study will track referrals and evaluate different services through patient interviews to make sure they are efficient, accessible and cost-effective. Specialists in healthcare inequality will also ensure that views are sought and recorded from people who are not visiting clinics.
Explaining why long COVID patients experience breathlessness and a reduced ability to exercise
Professor Fergus Gleeson, University of Oxford – £1.8m
One of the most prevalent and persistent symptoms among long COVID patients has been discomfort in breathing following physical activity. The EXPLAIN (Hyperpolarised xenon magnetic resonance pulmonary imaging in patients with Long-COVID) project will seek to diagnose ongoing breathlessness in coronavirus patients who were not admitted to hospital, using MRI scans to trace inhaled gas moving into and out of the lungs.
A 15-minute scan using low levels of xenon gas will display lung function and – if abnormalities are found – comparisons of data across different groups of participants recruited from Oxford and Sheffield can help assess their severity and whether they improve over time. Some EXPLAIN patients will also have a separate scan to see if heart damage can be identified. If the MRI scans separate patients with and without lung disease, further CT scans can be analysed, using artificial intelligence and blood samples to identify associated conditions and inform the development of treatments.
Understanding and treating ‘brain fog’
Dr Dennis Chan, University College London – £1.2m
Up to three quarters of people who experience long-term symptoms after COVID-19 report problems with memory, attention or other cognitive functions – symptoms known collectively as ‘brain fog’. The CICERO (Cognitive Impairment in long COVID: PhEnotyping and RehabilitatiOn) project will first determine which elements of brain function are most affected in people with long COVID. The relationship between brain function and other symptoms of long COVID, such as fatigue and anxiety, will be explored, and MRI scanning will be used to identify the affected brain networks. The researchers will then develop and test a new rehabilitation strategy to help people recover from the cognitive aspects of long COVID and return to normal life and working ability. This will support production of a freely available COVID-19 Cognitive Recovery Guide on how best to offer the new rehabilitation approach depending on the patient’s symptoms.
Co-designing personalised self-management for patients at home
Professor Fiona Jones, Kingston University – £1.1m
Long COVID describes more than 200 different symptoms that can interact and fluctuate. Although fatigue and problems with brain function are the most common symptoms, each patient can experience a different set of symptoms. The LISTEN (Long COVID Personalised Self-managemenT support – co-design and EvaluatioN) project will work in partnership with people who have long COVID to design and evaluate a package of self-management support that can be personalised to individual needs. The researchers will first work with people living with or recovered from long COVID, plus a social enterprise with expertise in reaching seldom heard populations, to design the package and associated patient and training resources. The team will then test the self-management package alongside up to six one-to-one virtual coaching sessions from trained rehabilitation practitioners, to test whether the treatment improves how people with long COVID feel and how they cope with everyday activities. The researchers will also evaluate how the package could be implemented more widely, with the aim that self-management for people with long COVID can be delivered at scale.
ReDIRECT: Remote Diet Intervention to Reduce long Covid symptoms Trial
Dr David Blane, University of Glasgow – £999,679
The immunologic and virologic determinants of long COVID
Professor David Price, Cardiff University – £774,457
Quality-of-life in patients with long COVID: harnessing the scale of big data to quantify the health and economic costs
Dr Rosalind Eggo, London School of Hygiene and Tropical Medicine – £674,679
Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue (PAuSing-Post-COVID Fatigue)
Dr Mark Baker, Newcastle University – £640,180
Immune analysis of long COVID to inform rational choices in diagnostic testing and therapeutics
Professor Daniel Altmann, Imperial College – £573,769
Understanding and using family experiences of managing long COVID to support self care and timely access to services
Professor Sue Ziebland, University of Oxford – £557,674
Development of a robust T cell assay to retrospectively diagnose SARS-CoV-2 infection and IFN-γ release assay as diagnostic and monitoring assay in Long COVID patients
Dr Mark Wills, University of Cambridge – £372,864
Using Activity Tracking and Just-In-Time Messaging to Improve Adaptive Pacing: A Pragmatic Randomised Control Trial
Professor Nicholas Sculthorpe, University of the West of Scotland – £317,416
Impact of COVID-19 vaccination on preventing long COVID: a population-based cohort study using linked NHS data
Professor Daniel Prieto-Alhambra, University of Oxford – £224,344
Long COVID Core Outcome Set (LC-COS) project
Dr Tim Nicholson, King’s College London – £139,619
The TUC has called for long Covid to be urgently recognised as a disability and Covid-19 as an occupational disease, to give workers access to legal protections and compensation.
The call comes as the TUC publishes an in-depth report on workers’ experiences of long Covid during the pandemic.
More than 3,500 workers responded to a TUC survey on the impact of long Covid on people’s daily working lives.
The survey reveals that, of those surveyed:
Nearly 3 in 10 (29 per cent) have experienced symptoms lasting longer than a year.
More than 9 in 10 (95 per cent) have been left with ongoing symptoms.
A clear majority had experienced side effects including brain fog (72 per cent), shortness of breath (70 per cent), difficulty concentrating (62 per cent) and memory problems (54 per cent).
Over half (52 per cent) had experienced some form of discrimination or disadvantage due to their condition.
The report highlights how frontline workers have been disproportionately affected by long Covid.
Over three-quarters (79 per cent) of those who responded to the TUC’s survey identify themselves as key workers, with the majority working in either education or health and social care.
More than two-thirds (68 per cent) of respondents were women.
Long Covid in the workplace
The report reveals the extent of discrimination in the workplace towards those with long Covid.
Over half (52 per cent) of respondents said they had experienced some form of discrimination or disadvantage due to their condition.
Workers told the TUC how they were faced with disbelief and suspicion when they disclosed their symptoms:
Around a fifth (19 per cent) said their employer had questioned the impact of their symptoms.
One in eight (13 per cent) faced questions from their employer about whether they had long Covid at all.
One in 20 respondents (5 per cent) said they had been forced out of their jobs altogether because they had long Covid.
Respondents described the difficulties that they faced trying to work while experiencing a range of long Covid symptoms.
One person – who contracted Covid-19 at work – said that when their employer went ahead with an international event in the first wave of the pandemic: “I was still expected to work long hours, handle stressful situations in impossible timeframes, find and fill in forms (which I struggled to do because of cognitive issues), and spend hours on Zoom calls when I struggled to talk and breathe, resulting in extreme chest pain, shortness of breath, exhaustion and severe symptom relapses.”
Respondents were also concerned about what the future might hold for them at work given the amount of sick leave they had been forced to take due to their long Covid symptoms.
Around one in six respondents (18 per cent) said the amount of sick leave they had taken had triggered absence management or HR processes.
New rights and protections for those with long Covid
The TUC is calling for the government to urgently recognise long Covid as a disability under the Equality Act.
The Equality Act 2010 defines disability as a “physical or mental impairment…[that] has a substantial and long-term adverse effect on [their] ability to carry out normal day-to-day activities”. Government guidance makes clear that ‘long-term’ means 12 months or more.
The TUC says that many who have long Covid already meet this criteria and should therefore be protected under the law rather than forced to go through the stress of employment tribunals.
Extending Equality Act 2010 protections so they cover workers with long Covid would ensure employers cannot legally discriminate against them. It would also put a duty on employers to make reasonable adjustments that remove, reduce or prevent any disadvantages workers with long Covid face, as for any other enduring condition or disability.
In addition, the union body is calling on ministers to recognise Covid-19 as an occupational disease – entitling employees and their dependents to protection and compensation if they contracted the virus while working.
TUC General Secretary Frances O’Grady said: “Many of the workers who have carried us through the pandemic are now living with debilitating symptoms of long Covid. And we’re beginning to hear troubling stories of a massive wave of discrimination against people with long Covid.
“It’s time to recognise this condition properly – and make sure workers who are living with long Covid get the support they need to do their jobs.
“Long Covid must be recognised as a disability. That would mean workers are protected by the Equality Act, and would have a right to get reasonable adjustments at work.
“And Covid-19 should be designated as an occupational disease. That would allow workers who contracted Covid-19 at work and are living with the consequences to claim the compensation they are due.
“Employers must also act. They should make sure they make reasonable adjustments for workers with long Covid, and complete specific risk assessments to make sure workers with long Covid are safe at work.”
Lesley Macniven, Chair of the Long Covid Support Group, who worked with the TUC on its report, said: “Even those with ‘mild’ Covid can suffer daily with fluctuating symptoms, exhausted and alone. Promises we’ll ‘just get better’ have been proved otherwise.
“A year on we need legally enforceable guidance for employers and government – informed by unions, occupational health and patient groups with significant lived experience managing long Covid.
“Patients need time to convalesce, then recuperate through a very gradual, flexible phased return to work, over months, to achieve a sustainable return.
“Long Covid is disabling young, previously healthy workers. This key step is needed to take the effects of long Covid seriously, enable rehabilitation and protect dedicated workers from discrimination due to poor understanding of the condition.”
