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Content Article
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The Office for National Statistics estimates that in December 2021, 1.2 million people in the UK were living with Long Covid. Long Covid is a condition characterised by ongoing symptoms that last for months and even years after an initial Covid-19 infection. It is a difficult condition to diagnose, and nearly two years since it was first seen, medical understanding of Long Covid is still limited. People living with Long Covid often express frustration at misconceptions about the condition that are prevalent amongst medical professionals, policy makers and the general public. In this article, we highlight some of these myths, explain why they are inaccurate and describe the damage they can cause to people living with the condition. -
News Article
People hospitalised with COVID-19 are likely to face a limited recovery
Patient Safety Learning posted a news article in News
People who were hospitalised with COVID-19 and continued to experience symptoms at five months show limited further recovery one year after hospital discharge, a key finding of the Post-hospitalisation COVID-19 study (PHOSP-COVID) has revealed. The NIHR/UKRI-funded study, led by the NIHR Leicester Biomedical Research Centre, also confirmed that people who were less likely to make a full recovery from COVID-19 were female, obese, and required invasive mechanical ventilation (IMV) to support their breathing during their hospital stay. The study found that one year after hospital discharge, less than three in ten patients reported they felt fully recovered, largely unchanged from at five months. The most common ongoing symptoms were fatigue, muscle pain, physically slowing down, poor sleep and breathlessness. Participants felt their health-related quality of life remained substantially worse one year after hospital discharge, compared to pre-COVID. This suggests the physical and mental health impairments reported in the study are unlikely to be pre-existing conditions. Professor Chris Brightling said: “The PHOSP-COVID study is further evidence of the UK’s ability to combine expertise across both disease area and geography to rapidly gather data to help us understand the longer term implications of Long-COVID in hospitalised patients with persistent symptoms. Our findings show that people who were hospitalised and went on to develop Long-COVID are not getting substantially better a year after they were discharged from hospital. Many patients in our study had not fully recovered at five months and most of these reported little positive change in their health condition at one year. “When you consider that over half a million people in the UK have been admitted to hospital as a result of COVID-19, we are talking about a sizeable population at risk of persistent ill-health and reduced quality of life.” Read full story Source: National Institute for Health Research, 16 November 2021 -
News Article
Many Covid hospital patients do not feel fully recovered year later
Patient Safety Learning posted a news article in News
Fewer than one in three patients who have ongoing Covid symptoms after being hospitalised with the disease say they feel fully recovered a year later, according to a study that offers new insights into potential treatments. As the pandemic has unfolded, a growing body of research has revealed that Covid not only causes health problems in the short-term, but also has long-term effects. Now a study has revealed many of those who had ongoing symptoms after hospitalisation are showing little improvement, with their condition similar at about 12 months after discharge to seven months earlier. “Only one in three participants felt fully recovered at one year,” said Dr Rachel Evans, one of the co-leads of the post-hospitalisation Covid-19 study – or Phos-Covid – which is led by the National Institute for Health Research (NIHR) Leicester Biomedical Research Centre, although the team says missing data means the figure could be as low as 2 in 10 or as high as 6 in 10. The research – which has yet to be peer-reviewed – reveals how the team collected both self-reported and objective measures of health, such as physical performance and organ function, among 2,320 adults about five months after they were discharged from hospital after having had Covid. They then looked at similar measures for 924 participants at about one year after discharge, 807 of whom had attended the previous follow-up. Between five months and one year after discharge, the proportion of participants reporting feeling recovered remained very similar – at just under 30% at 12 months – as did the prevalence of symptoms including breathlessness, fatigue and pain. Little or no improvement was seen for areas including organ function, physical function and cognitive impairment – or “brain fog” – with about one in 10 participants having a significant degree of the latter 12 months after discharge. “Unfortunately, we weren’t seeing improvements at one year from where people were at five months post-discharge,” said Evans. Read full story Source: The Guardian, 16 December 2021 -
Content ArticleIn this article for The Washington Post, Christopher Rowland speaks to Americans with Long Covid about the impact the condition has had on their health, lives and ability to work. He particularly focuses on the experience of Tiffany Patino, who has been left with debilitating symptoms and unable to work. As well as the financial impact of having no income, the article looks at the impact Long Covid has had on her mental health and ability to care for her young son. The author also highlights that health insurance companies are withdrawing support from people with Long Covid as there is little evidence around treatments, and suggests that employers need to take a more flexible approach to allow people with Long Covid to re-enter the labour market.
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News Article
Doctor with Long Covid found to have multiple blood clots in his brain
Patient Safety Learning posted a news article in News
A doctor who became very unwell with COVID-19 at the start of the pandemic was later found to have multiple blood clots in his brain which could easily have killed him. Dr Ian Frayling started suffering with a "bone-cracking" fever, muscle pain and a "cough like no other" in March 2020, weeks before the national lockdown was announced by the UK and Welsh governments. His condition then took a turn for the worse when he started experiencing problems with his breathing and encountering such extreme brain fog that entire days would pass him by. The 62-year-old said his "frightening" range of symptoms, which also included irritable bowel syndrome, disruptive sleep and difficulty with coordination, persisted for many months and left him a fatigued shell of his former self. After sharing his story with WalesOnline 12 months ago, Dr Frayling was invited to meet the Senedd's health committee in March 2021 to give evidence of his battle with Long Covid. It led to a respiratory consultant reaching out to him and offering him a full clinical assessment at the University Hospital Llandough. Not only did she find problems with his heart and blood pressure, which were to be expected, but a referral for CT scans in May 2021 revealed that he was living with several blood clots in his brain which were very likely to be attributed to the after-effects of coronavirus. It meant suffering a catastrophic stroke was highly likely. After being given the deeply distressing news, Dr Frayling said his mind began turning to other people with Long Covid who may be experiencing similar neurological symptoms but are waiting many months to be referred to see a specialist doctor by their GP. "The consultant used her clinical skills and expertise [to properly assess me and give me a CT scan]. I'm one of the lucky ones. A GP can't directly send people off for these kind of tests, so there could be thousands of people with Long Covid, just like me, who aren't getting the help they need and are just being fobbed off." Read full story Source: Wales Online, 28 November 2021 -
Content ArticleThis quick guide from Royal College of Occupational Therapists outline the unique role of occupational therapists in supporting adults to manage and recover from Long Covid. They have been written for occupational therapists working in specialist Long Covid services and in other acute, primary, secondary and community settings. The guides will also be useful for service managers and commissioners responsible for planning and delivering specialist Long Covid services, and for parents, carers and families of people affected by Long Covid. See also their guide for children with Long Covid.
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Content ArticleThis is the second of two dynamic reviews of the evidence around people’s experience of the enduring symptoms following a Covid-19 infection. The National Institute for Health Research published their first review of the evidence in October 2020. At the time there was uncertainty about the extent to which there could be lasting effects, and most people assumed a linear progression of a severe acute infection with a long recovery tail. The first review on “Living with Covid-19” was informed by the experience of professionals and the NIHR worked closely with a group of people with lived experience. This review focuses on the published evidence. In addition, it reports findings from a short survey of people living with Covid-19. With over 3,000 responses it provides an insight into the key issues and challenges for people living with Covid-19.
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Content ArticleThese resources from Queen Margaret University, Edinburgh were developed following a study funded by the Chief Scientist Office in Scotland. The study was based on an online survey which people completed between July and August 2020, followed by a further survey six months later. Some participants also took part in a telephone interview to enhance understanding of their responses. The study used the responses of people living with Long Covid to: develop a resource with advice for people accessing services for Long Covid. write guidance for people providing services relevant to people with Long Covid. write recommendations to inform policy and service design that relate to Long Covid and other impacts of the pandemic. plan a series of short podcasts, interviewing people who have lived experience of Long Covid.
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Content ArticlePoster from World Physiotherapy for World Physiotherapy Day 2021 highlighting the symptoms of Long Covid similar to ME/chronic fatigue syndrome which can worsen with exertion.
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EventuntilThis Westminster Forum is an opportunity to discuss the implementation of the NHS Long COVID plan for 2021/22, how to utilise funding set out for the expansion of services and management of Long COVID within primary care, the future outlook for Long COVID research, and the impact of new NIHR-funded projects. Key areas for discussion include: delivery of the Long COVID Plan and the utilisation of allocated funding priority areas for research to further improve understanding of Long COVID and the effectiveness of services developed for the condition care pathways within local health systems - leadership, implementation and commissioning, service development, rehabilitation, the impact of health inequalities, and integrating care Long COVID assessment clinics: - assessing progress and what more is needed to improve accessibility and support referrals from primary care - priorities for the development of services for children support for the health workforce - training and education priorities and sharing best practice in Long COVID care utilising data - scaling up its use and improving understanding of Long COVID and its prevalence involving patients - the development of Long COVID services, driving awareness of expanded online support, and improving equal accessibility to information. Agenda Register
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Content Article
Long Covid Support: Information leaflet
Patient Safety Learning posted an article in Resources for patients
Long Covid can be difficult to diagnose, and some people might not realise their symptoms could be linked to prior COVID-19 infection. There can be more than 200 symptoms. Symptoms can affect anywhere in the body. Symptoms can come and go, and new ones can appear weeks or months later. People may not be aware they had Covid-19: some don’t have symptoms at the time of infection, and test results can be unreliable. Long Covid Support and Long Covid Kids have produced an information leaflet on the symptoms of Long Covid. -
Content Article“As someone living with Long Covid…you want somebody to believe what you're going through.” Davine Forde National Voices held their event, Long Covid webinar event: A community-focused response, where they were joined by Davine Forde (Manchester BME Network CIC), Claire Hastie (Long Covid Support), Michael MacLennan (covid:aid) and Sammie Mcfarland (Long Covid Kids) in an enlightening panel discussion, focusing on the depth and breadth of dedication within the Long Covid community space. National Voices colleagues, Rachel Matthews (Head of Experience) and Keymn Whervin (Lived Experience Associate), also joined the event and spoke about the importance of getting people with lived experience in the room and at the heart of decision-making. Their focus on co-production highlighted a fantastic opportunity to harness the resourcefulness within our communities by working with people throughout decision-making processes.
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Content ArticleEpisode 09 of the Long Covid Podcast is a conversation with Claire Hastie. Claire became ill with Covid right at the start of the first wave in the UK and like so many others, is still suffering the effects of Long Covid. She started the Long Covid Support Group on Facebook in early May 2020. Claire talks about her experiences, how the group came to be and what they are fighting for.
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Content ArticleFinding solutions to long covid will require new ways of thinking across clinical services and research, says in this BMJ Opinion article.
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Content ArticleWhile it is now apparent that Long Covid may persist after acute COVID-19, its nature, frequency and aetiology are poorly characterised. This study from MicHelen et al. aimed to regularly synthesise evidence on long COVID characteristics, to help inform clinical management, rehabilitation strategies and interventional studies to improve long-term outcomes. The authors conclude that Long Covid is a complex condition with prolonged heterogeneous symptoms. The nature of studies precludes a precise case definition or risk evaluation. There is an urgent need for prospective, robust, standardised, controlled studies into aetiology, risk factors and biomarkers to characterise long COVID in different at-risk populations and settings.
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Content ArticleIn this blog for The BMJ, several doctors who are experiencing long term impacts of Covid-19 share their report of a meeting with the World Health Organization's Covid-19 response team in August 2020. They highlighted the importance of patient-led research and and engaging with patients with Long Covid.
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Event
Long Covid: A community-focused response
Sam posted an event in Community Calendar
untilWe’re no longer in a national lockdown and life feels as though it is slowly getting back to normal, but for those who contracted COVID-19 and are still living with the debilitating consequences of the virus, the battle is far from won. With almost 400,000 UK adults experiencing the prevailing symptoms of COVID-19 over a year after first contracting the virus, Long Covid continues to remain on the agenda as a pressing and pertinent issue. This webinar from National Voices explores a person-centred response to Long Covid. This webinar event emerges as a sub-section of National Voices’ larger programme of work commissioned by NHSE/I, working alongside six VCSE organisations who support members of the community at risk of exclusion. During this event we will be joined by Michael MacLennan of covid:aid, Claire Hastie of Long Covid Support, Sammie Mcfarland of Long Covid Kids, and Davine Forde, a Lived Experience Associate from Manchester Health & Care Commissioning. They will engage in a panel discussion, sharing the lived experiences of those with Long Covid and shining a light on the crucial work that community-based organisations are doing to alleviate the burden on health services in response to Long Covid. Rachel Matthews, our Head of Experience, and Keymn Whervin, our Lived Experience Associate, will also examine the impact of implementing strategic co-production in working with lived experience leaders, uncovered through their Voices for Improvement project at National Voices. Discussions will be followed by a Q&A session with questions invited from attendees. Register -
Content ArticleIn this blog, PC Barry Calder, Lead of the Metropolitan Police Service Disability Staff Association COVID Peer Support Group, raises concerns about the potential impact of long COVID on staff and organisations. He highlights that organisations can take proactive steps to mitigate the consequences of staff being affected by long COVID, such as staff absences and changes to job roles. He recommends that organisations: introduce regular contingency planning activities (such as COVID Resilience meetings) ensure managers are trained to support staff living with long COVID ensure occupational health and staff wellbeing services include support relevant to long COVID consider establishing peer support groups for affected staff.
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Content Article
Long-haulers are fighting for their future (1 September 2021)
Patient Safety Learning posted an article in Blogs
Many people with long COVID feel that science is failing them. Neglecting them could make the pandemic even worse, writes Ed Yong in this article for The Atlantic. -
News Article
Post-illness symptoms like long Covid are probably more common than we think
Patient Safety Learning posted a news article in News
In recent months, long Covid has received a great deal of media and public attention. Research has found that as many as one in four of those infected with Covid suffer from chronic long-term symptoms, including headaches, dizziness, abdominal pain, heart problems, fatigue, anxiety, depression, cognitive impairment and other conditions. It is a difficult and complex illness, and we must do much more to help those who are struggling with it. At the same time, it is important to realise that rather than being a strange special case, long Covid is probably part of a broader phenomenon that affects many more people. In recent years, doctors and researchers have increasingly realised that many of those who survive an illness of any kind, or who go through serious physical trauma, are at high risk for a range of debilitating and chronic physical, cognitive and mental health symptoms – problems that closely resemble long Covid. As medicine has advanced, clinicians have learned how to save hundreds of thousands of severely ill or injured patients who would have previously died. Although this is a remarkable accomplishment, however, in many cases, survival does not mean complete recovery: some patients find that their bodies, brains and psyches continue to bear the scars of what they have gone through. One non-Covid study found that a year after hospitalisation, a third of patients with severe respiratory failure or shock had significant cognitive impairment. Another found that between a quarter and a third of patients who were treated in the ICU had significant and long-lasting symptoms of anxiety, depression or PTSD. Researchers have found similar results for survivors of other medical conditions, including cancer, multiple sclerosis and ALS. Unfortunately, people with long Covid, as well as other chronic post-illness symptoms, often find that the medical establishment doesn’t understand their experience, and so minimises or questions it. This is not surprising: clinicians tend to pay less attention to how patients with severe illness do once they are out of mortal danger, or once symptoms extend beyond an arbitrary time frame. Read full story Source: The Guardian, 12 September 2021 -
Content Article
Learning from long Covid
Patient Safety Learning posted an article in Patient recovery
At Cromwell Hospital’s Long Covid Clinic, a multidisciplinary team of consultants are learning lessons from the virus. Dr Brian O’Connor, a consultant in respiratory medicine, and consultant psychiatrist Dr Rajeev Dhar are part of the multidisciplinary Long Covid team at Cromwell Hospital. “We established the clinic because, between the various consultants, we recognised we had an increasing number of mutual patients who had symptoms that didn’t add up,” he explains. “You’d have patients with psychological symptoms, such as low-grade levels of anxiety and depression, but they would also display odd physical symptoms such as palpitations or breathlessness when they lay down.” The collaboration between consultants across the fields of respiratory medicine, cardiology, neurology and psychiatry has allowed them to pool information and recognise symptom patterns quickly. Both Dr O’Connor and Dr Dhar believe the holistic, multidisciplinary treatment being delivered at the clinic could have a longer-term effect — one that involves a fundamental change in attitudes and perspective. “Medicine often focuses on treating symptoms,” Dr Dhar explains, “but long Covid has made us think about how we help people to function better. Our approach is now focused on how people are functioning, because that tells us how well we’re managing the symptoms.” -
Content ArticleThis paper from Trish Greenhalgh and colleagues explores the lived experience of ‘brain fog’—the wide variety of neurocognitive symptoms that can follow Covid-19.
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News Article
Attitudes to long Covid are straight out of the ME playbook
Patient Safety Learning posted a news article in News
Dr Kelly Fearnley caught COVID-19 in November 2020, after being redeployed to work on a coronavirus ward. Ten months on, she’s still living with debilitating symptoms of the condition known as long Covid. The latest estimates, published in June, suggest more than two million people in the UK have had long Covid since the pandemic began, while figures released by the Office for National Statistics in April show that more than 120,000 of those are NHS staff. Dr Fearnley discusses with iNews her experience of being taken to hospital after becoming seriously unwell. Dr Fearnley had a high resting heart rate and wasn’t able to get out of bed. She had pins and needles and was experiencing attacks of breathlessness, as well as violent shaking of her entire body. Yet, after running tests, she says the senior doctor she saw made it clear they believed Dr Fearnley was suffering from anxiety. “I was [treated as] an anxious little girl. My concerns weren’t taken seriously. Despite being a doctor myself, I felt let down by my colleagues at a time when I needed help but help wasn’t there,” Dr Fearnley said. “Sadly, I know my experience isn’t uncommon. I know a lot of long haulers have had their symptoms dismissed as anxiety.” But Dr Fearnley’s experience is also not unique to long Covid patients. “There’s a long history in medicine of dismissing hard-to-diagnose and hard-to-treat patients as having psychological or behavioural problems,” says Brian Hughes, Professor of Psychology at the National University of Ireland, Galway. “Historically, these problems have also been far more likely to emerge where illnesses primarily affect women,” he added. There are countless examples of this, but the condition that’s been most closely linked to long Covid is myalgic encephalomyelitis (ME) – also known as chronic fatigue syndrome or ME/CFS. 2020 research into GPs’ knowledge and understanding of the condition found that between a third and half of GPs did not accept ME as a “genuine clinical entity“. As a result, patients have continued to have their symptoms disbelieved or dismissed as psychological for decades. Read full story Source: iNews, 9 September 2021 -
Content ArticleThe What Good Looks Like (WGLL) programme draws on local learning. It builds on established good practice to provide clear guidance for health and care leaders to digitise, connect and transform services safely and securely. This will improve the outcomes, experience and safety of citizens.
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News Article
More than 2 million people in the UK may have suffered from long Covid
Patient-Safety-Learning posted a news article in News
A new survey of half a million adults in the UK has revealed more than 2 million may have suffered from long Covid. Currently, long Covid is not fully understood and its definition has not yet been agreed upon. The self-reported survey showed 37% of respondents experienced at least one symptom lasting 12 weeks or more with higher weight, smoking, lower incomes and having a chronic illness being associated with a higher chance of experiencing symptoms of long Covid. The government has issued £50m in funding for research on long Covid. Read full story. Source: BBC News, 24 June 2021
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