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In a new Lancet Respiratory Medicine Series about Long Covid, Sally J Singh and colleagues discuss the origins of respiratory sequelae and consider the promise of adapted pulmonary rehabilitation programmes and physiotherapy techniques for breathing management. Pratik Pandharipande and colleagues review the epidemiology and pathophysiology of neuropsychological sequelae of COVID-19-related critical illness, highlighting the combined threat of long COVID and post-intensive care syndrome (PICS), and outline potential mitigation strategies. Finally, Matteo Parotto and colleagues discuss pathophysiological mechanisms of diverse, multisystem sequelae in adult survivors of critical illness, including longitudinal effects of endothelial and immune system dysfunction, and consider the challenges of providing appropriate care and support for patients.

Good practice guidance for integrated care boards (commissioners and providers) produced by NHS England. This community rehabilitation and reablement model, published alongside the intermediate care framework, aims to ensure that the individual (and their families) is at the centre of discussions and that any transition points will be as seamless as possible.

In this blog, published by the World Health Organization, we hear about one family's experience of long Covid. Claire Hastie and her children are yet to recover and continue to experience numerous debilitating symptoms that prevent them from taking part in their pre-covid occupations.  WHO/Europe has also been working with patient groups to define priority areas where action is needed. It is now calling upon governments and authorities to focus attention on long COVID and its sufferers through greater: recognition: all services must be adequately equipped, and no patient should be left alone or have to struggle to navigate through a system that is not prepared to, or not capable of, recognizing this very debilitating condition;  research and reporting: data gathering and reporting of cases, and well-coordinated research with full participation of patients, are needed to advance understanding of the prevalence, causes and costs of long COVID; and  rehabilitation: this cost-effective intervention is an investment in building back healthy and productive societies.

The occupational therapy (OT) workforce is under huge pressure. Increased demand coupled with workforce shortages is challenging OTs’ capacity to provide essential support to people whose lives are impacted by long term health conditions and disability. In November 2022, the Royal College of Occupational Therapists surveyed OT practitioners across the UK about the workplace issues they’re facing now, and how these affect the services they deliver to the public. They also asked how practitioners are impacted personally, including whether they intend to continue working as OTs. The challenges shared by over 2,600 respondents have significant implications for the resilience of the current and future OT workforce, and the people who use OT services. Key findings 86% reported an increased demand for OT services within the previous 12 months. 79% stated that people were presenting more complex needs due to delayed interventions. 78% said that their team wasn’t large enough to meet the demand. 63% felt they were too busy to provide the level of care they’d like. 59% rated their work-related stress as 7 or above on a scale of 1 to 10, with 10 being the highest level of stress. Key recommendations Governments must recognise that investment in the NHS and social care is critical to a healthy population and therefore economic growth. Investment in the OT workforce must be matched to service and demographic need, not just in the NHS but in social care as well. Capacity should be built within primary and community health and social care services, to ensure people receive advice and help early on, rather than when in acute need or with increased complexity due to delayed intervention. "We’re churning patients out faster and faster, older, frailer and more complex, but given no time to rehab or improve them, knowing that they will likely get readmitted again in a few days. That is disheartening when there is so much we could do if we were given a day or two, or there were more services in the community."

Independent SAGE is a group of scientists who are working together to provide independent scientific advice to the UK government and public on how to minimise deaths and support Britain’s recovery from the COVID-19 crisis.This report seeks to answer some of the more common questions that they are asked about Long COVID and sets out key recommendations. Key recommendations Data should be collected systematically on cases of Long COVID and presented alongside numbers of cases, hospitalisations and deaths from COVID-19. Building on the experience of the Post-Hospitalisation study, a national register of patients with Long COVID should be established, including those who have not required hospitalisation, to enable long-term follow-up and thus a better understanding of thenatural history of this condition. This should include specific codes for GPs to use so that patients can be followed up and tracked in research studies over the longer term. Further efforts should be undertaken to ensure that all health professionals likely to come into contact with patients who have Long COVID are fully aware of the existing NICE guidelines. Clinical commissioning groups and their equivalents in the devolved nations should ensure that there are appropriate models of care in place, including multi-disciplinary and multi-specialist teams, with clearly defined pathways through which patients can access them. Research studies funded so far will provide invaluable information, but there is a need for continuing review to identify emerging gaps in our knowledge, especially in relation to the impact of Long COVID on people’s lives and how they are overcomingthe challenges they face.Patients with Long COVID should be recognised as an extremely important resource in shaping research and policy in relation to this condition.

The Telerehab Toolkit is a patient and practitioner guide to remote appointments for people with movement impairment and disability. Researchers from the Faculty of Health at the University of Plymouth together with collaborators from NHS Trusts in Devon and Cornwall have been working on developing an online toolkit of resources – ‘The Telerehab Toolkit’. The toolkit is designed to support health and social care practitioners in the remote assessment and management of people with movement impairment and physical disability, including people recovering from COVID-19. This project has been funded by the UKRI Medical Research Council. The content of the toolkit is based on interviews and discussions with over 100 practitioners, patients and their family members, a survey of 247 UK practitioners and a review of the latest evidence. It contains sections for practitioners and for patients, with information and guidance on online and telephone appointments as well as links to other useful resources.

The COGER study is collecting data to gain insight into the course of functional and medical recovery in older people affected by COVID-19 participating in rehabilitation across Europe. The COGER study, designed by members of the Special Interest Group for Geriatric Rehabilitation of the European Geriatric Medical Society (EuGMS), study aims to: Explore the course of activities of daily living (ADL) recovery and influencing factors. Describe other outcomes after geriatric rehabilitation in post-COVID-19 patients. Describe geriatric rehabilitation services provided to post COVID-19 patients across Europe. The study group are presently looking for rehabilitation services to volunteer to support the work. By taking part you will help them to understand how older people recover from COVID-19, and the services that make a difference. It is possible that data collected will help further the understanding of long-term questions about the best configuration of rehabilitation for older people. This could help harmonise approaches across Europe in an evidence-based way. How to get involved: Firstly, please download and read the protocol document on the BGS website. If you are a centre in the UK, please email [email protected] indicating your interest in participating. Germany - If you are from Germany and wish to participate, please email Stefan Grund. Rest of Europe - If you are elsewhere in Europe, please email Miriam Haaksma.

As research into the long-term impact of COVID-19 continues, this guide from the Royal College of Nursing explores the symptoms and how clinicians can support their patients’ recovery. Topics covered: Post-viral fatigue Fluctuating multi-system symptoms Lasting organ damage Post-intensive care syndrome Mental health Learning and training

With delays to promised support and trusts accused of penalising staff during their recovery, HSJ dig into why the NHS must provide support sooner rather than later for those experiencing Long-COVID. Patient Safety Learning has recently published a blog calling for better information and engagement with patients who have Long COVID: Clear NHS plan needed to reassure Long COVID patients. We have also co-produced a patient information leaflet with the Royal College of General Practitioners, to help patients understand what they can expect from their GP. To listen to the HSJ podcast, click on the link below. 

This article, published by The Conversation, highlights the mounting evidence that some people who have had COVID-19 but were not hospitalised, are experiencing prolonged illness. Reported after-effects of the virus include; overwhelming fatigue, palpitations, muscle aches and pins and needles. The author of this article looks at the research to date and talks about using twin studies to gain further insight into 'post-COVID syndrome'.

This short film was created by patients who are experiencing long-lasting and debilitating symptoms of COVID-19, to raise awareness of their ongoing issues, also known as 'Long COVID'.

An increasing number of people with confirmed or suspected COVID-19 are continuing to struggle with prolonged, debilitating and sometimes severe symptoms months later.[1] Many were never admitted to hospital and have instead been trying to manage their symptoms and recovery at home. These patients are sometimes referred to as the ‘long-haulers’ or described as having ‘post-acute’, ‘chronic’ or ‘long-term’ COVID-19. Here, we will use the term ‘Long COVID’. With social distancing restrictions still in place, patients in the UK and across the world have been turning to social media support networks[2] to connect with others who are experiencing similar challenges. These patients have raised very credible concerns about the care they are receiving[3] and the uncertainties they face. Their concerns are revealing many implications for patient safety. We have recently shared on the hub the story of Dr Jake Suett[4], one of the many people experiencing symptoms of Long COVID. When we conclude this article, we will return to his story and highlight the changes that he is calling for. However, first, we will focus on the patient safety aspects of Long COVID, highlighting key areas of concern and action needed (a full list of actions can be found summarised here). We need to listen to patients and commission research COVID-19 is a new virus and there is currently little understanding about long-term impacts[5] and why some people seem to recover quickly while others are left very unwell for months.[6] Prolonged symptoms vary greatly[7] but many are experiencing rashes, shortness of breath, neurological and gastrointestinal problems, abnormal temperatures, cardiac symptoms and extreme fatigue. Recent studies indicate COVID-19 can cause organ damage even where patients have been asymptomatic.[8] Research into the Long COVID cohort of patients is needed as a high priority. Without this, we won’t be able to assess the impact on patients, identify the causes and develop treatments with appropriate advice and support. This knowledge gap deserves immediate attention so that we can better understand how and why the virus has presented itself differently in these patients, many of whom are young and were previously fit and healthy.[9] Thousands of patients are reporting their experiences through social and mainstream media. Patients need to be assured that they are being listened to and that their insights and symptoms are being captured to better understand this disease. Without engaging with patients who are living through this, it will be impossible to gain the full picture and know how best to provide care and keep them safe. Call for action: There needs to be a scientific and global approach to the study of patients undergoing prolonged COVID-19 symptoms to understand the numbers affected, the causes, how long they remain contagious and to investigate possible treatments. Patients must be encouraged to speak up via their GPs, researchers and social media, and they must be listened to. Where patients are dissatisfied with the services and the support they are receiving, they should be encouraged to share this insight through online reporting and, if needed, the NHS complaints process. The Department of Health and Social Care should establish a Long COVID patient advisory group to inform the design of new services, support, research and patient communication. Urgent need for COVID-19 recovery guidance and support For ensuring an effective recovery from serious illnesses such as COVID-19, the importance of rehabilitation to long-term mental and physical health is widely recognised.[10] However, access to quality rehabilitation varies across the UK[11] and, during the pandemic, post COVID-19 support and rehabilitation have focused on the acutely unwell who have spent time in hospital.[12] Patient Safety Learning has heard testimonials from people with COVID-19 who are struggling to recover and have been unable to access support.[13] Although there has been an increase in guidance available for people recovering from COVID-19[14], these have in the main been designed for patients who have been acutely unwell and in hospital. If patients who are managing their illness and recovery from home don’t also receive the care and support they need, they face an increased risk that their physical and mental health outcomes could be adversely affected, limiting their future quality of life.[15] On 5 July 2020 it was announced that NHS England is launching a new service for people with on-going health problems after having COVID-19. "Your Covid Recovery" is an online portal for people in England to access tutorials, contact healthcare workers and track their progress. It is launching later this month and, ‘later in the summer’, tailored rehabilitation will also be offered to those who qualify, following an assessment (up to a maximum of 12 weeks).[16] Call for action: The development of national guidance co-produced with people who have lived experience of Long COVID, and the immediate and consistent application of this guidance. Quality rehabilitation support for Long COVID patients, whether they have confirmed or suspected COVID-19. Services to be provided for as long as people need them, wherever they live in the UK. The psychological impact of Long COVID on patients, with or without a formal diagnosis People who are experiencing prolonged symptoms of COVID-19 are telling us of the negative impact on their mental health and wellbeing.[17] We are hearing of huge variations in the care and advice these patients are being offered when accessing GP services. Many feel that they have been dismissed under catch-all diagnoses or made to question what they are feeling in their own bodies.[18] Frustrations around lack of clinical recognition for their illness is often exacerbated by receiving a negative test result. There is emerging evidence of the problematic nature of COVID-19 and antibody testing to accurately determine whether someone has or hasn’t been infected with COVID-19.[19] ‘False negatives’ can occur for a number of reasons including the challenging process of sample collection[20], the patient’s stage of illness and the failure rates of the tests themselves. Relapses seem common and many people are understandably worried that they may never return to their state of health pre-COVID. It may be that some of these patients are at the beginning of chronic illness, requiring appropriate physical and psychological support.[21] Are these patients’ experiences being believed by the healthcare system? If not, and this results in lack of access to support, then those experiencing long-term symptoms from COVID-19 are potentially at higher risk of developing mental health issues such as depression.[22] Call for action: Patients recovering from suspected Long COVID should be given the same support, regardless of whether they have had COVID-19 confirmed by a test result or not. Appropriate psychological support needs to be available to help patients come to terms with the impact of long-term illness. We need to learn whether unconscious bias about chronic illness is affecting professionals’ decision-making and patients’ access to services. If so, guidance, advice, training and support should be provided. Are serious conditions being overlooked? There is a risk that patients who are suspected or confirmed to have had COVID-19 may not have ‘red-flag’ symptoms (indicative of serious conditions) investigated in the way they would have done pre-pandemic[23], their symptoms instead being attributed to COVID-19. Many members of COVID-19 support groups report having to fight for referrals to rule out other pathologies. This is particularly worrying for people who have a history of cancer or other hereditary illnesses in their family. Their concern is that potential delays to diagnosis and treatment could have an adverse effect on a patient’s health outcomes.[24] Call for action: ‘Red flag’ symptoms that may be indicative of other conditions should be appropriately investigated in Long COVID patients. A second pair of ears Patients with prolonged symptoms are often experiencing what they describe as ‘brain-fog’[25], difficulties with memory or finding the right words, for example. Patient Safety Learning is hearing from those who have expressed a need to have another person attend their appointments to help communicate and to help them process everything in relation to their care. Due to concerns around infection control during the pandemic, such support isn’t always allowed, so there is a risk that patients could be left confused and overwhelmed, unable to engage actively in their care. This could significantly compromise their ability to keep themselves safe.[26] If this is recognised as an issue for those with prolonged COVID-19 symptoms, steps could be taken to ensure they are able to access support in the same way as those with other conditions that result in cognitive impairment. Call for action: Reasonable adjustments should be considered to allow a companion to accompany patients with debilitating symptoms (including ‘brain-fog’) to appointments, or to speak with a clinician over the phone. Health inequalities We now know from recent research that people from Black and Ethnic Minority backgrounds and people who live in deprived areas have been disproportionately affected by COVID-19.[27] There is a significant amount of research looking at the difficulties people from ethnic minority backgrounds and deprived areas face with regard to accessing health services. The concern is that inequalities have the potential to widen if people with Long COVID are not appropriately supported. Call for action: Long COVID patients should be included in research and action being taken to address health inequalities and COVID-19. Rehabilitation outcomes should be monitored and reported so that learning can be captured and so that any emerging inequalities in access to services are identified and addressed quickly. Next steps Patient Safety Learning is calling for the safety of Long COVID patients to be considered as a matter of urgency. Our Chief Executive Helen Hughes comments: "It is understandable that the initial focus of care during the COVID-19 pandemic has been on acutely unwell and hospitalised patients. However, there is growing evidence that there are many patients recovering in the community with long-lasting symptoms who are feeling abandoned, confused and without support. We must take action to better understand the needs of these patients and provide them with safe and effective care for as long as they need." Patient Safety Learning is also supporting the broader calls for action by Dr Jake Suett, set out in his blog post on the hub. These call on Government, public health bodies, healthcare systems, sciences and society to take the following actions: Establish a scientific approach to the study of patients undergoing prolonged COVID-19 symptoms (ensuring the cohort that was not hospitalised and has persisting symptoms is also captured in this data). This needs to include epidemiological, mechanistic and treatment studies. The Long-term Impact of Infection with Novel Coronavirus (LIINC) study[28] being carried out at University of California San Francisco is a good example of the type of study required for capturing objective data on the full spectrum of COVID-19 disease, including in those individuals with a prolonged illness. Maintain an open-minded approach to the underlying pathophysiology of the condition and avoid labelling it with existing names until there is sufficient evidence to make these statements. Include Long COVID patients in the study design stages. Raise awareness amongst health professionals and make arrangements so that treatable pathology is investigated and ruled out. Provide information and guidelines on how to manage long-term COVID19. Raise awareness amongst employers. Consider the medical, psychological and financial support that may be required by these patients. When considering measures to ease the lock down, include a consideration of the risk of exposing additional people to prolonged COVID-19 symptoms and long-term health consequences. Ensure and clarify that the plans announced on 5 July 2020 for research and rehabilitation by NHS England do not inappropriately exclude those who have not required hospital admission, and do not exclude those who have been unable to access testing early on, or in whom a false negative test is suspected. It is important that similar services are available throughout the UK. We will continue to use the hub to highlight patients’ experiences and concerns about this issue. We will also be working with others to seek support for these actions and raise awareness of the patient safety implications of Long COVID with policymakers in Government and the health and social care system. References [1] Forbes, Report Suggests Some ‘Mildly Symptomatic’ COVID-19 Patients Endure Serious Long-Term Effects, 13 June 2020. https://www.forbes.com/sites/joshuacohen/2020/06/13/report-suggests-some-mildly-symptomatic-COVID-19-patients-endure-serious-long-term-effects/#216f1aa35979; COVID Symptom Study, How long does COVID last?, 8 June 2020. https://COVID.joinzoe.com/post/COVID-long-term; Huffington Post, ‘Long COVID’ – The Under-The-Radar Coronavirus Cases Exhausting Thousands, 2 June 2020. https://www.huffingtonpost.co.uk/entry/what-is-long-COVID-and-how-many-people-are-suffering_uk_5efb3487c5b612083c52d91d?guccounter=1; The Independent, ‘The fatigue has lasted for months and months’: Meet the ‘long haulers’ living with the long-term impact of COVID-19, 12 June 2020. https://www.independent.co.uk/life-style/health-and-families/coronavirus-long-tail-patients-symptoms-lockdown-a9563681.html [2] Facebook, Long COVID Support Group, Last Accessed 3 July 2020. https://www.facebook.com/groups/longCOVID; Facebook, Positive Path Of Wellness – (COVID UK Long Haulers), Last Accessed 3 July 2020. https://www.facebook.com/groups/1190419557970588; Coronavirus – Survivors Group – COVID-19, Last Accessed 3 July 2020. https://www.facebook.com/groups/CVsurvivors [3] Asthma UK, “We have been totally abandoned” people left struggling for weeks as they recover from COVID at home, Last Accessed 3 July 2020. https://www.asthma.org.uk/about/media/news/post-COVID-abandoned/ [4] Dr Jake Suett, My experience of suspected 'Long COVID', Patient Safety Learning's the hub, 6 July 2020. https://www.pslhub.org/learn/coronavirus-covid19/273_blogs/my-experience-of-suspected-long-covid-r2547/ [5] The Guardian, The coronavirus ‘long-haulers’ show how little we still know, 28 June 2020. https://www.theguardian.com/commentisfree/2020/jun/28/coronavirus-long-haulers-infectious-disease-testing; BBC News, Coronavirus: Calls for awareness of long-term effects, 19 June 2020. https://www.bbc.co.uk/news/uk-england-south-yorkshire-53084368 [6] BBC News, Coronavirus doctor’s diary: Why does COVID-19 make some health young people really sick?, 31 May 2020. https://www.bbc.co.uk/news/health-52853647 [7] The Independent, Coronavirus: Lesser-known symptoms that could be linked to COVID-19, 1 June 2020. https://www.independent.co.uk/life-style/health-and-families/coronavirus-symptoms-loss-smell-taste-delirium-COVID-toe-syndrome-a9520051.html [8] Quan-Xin Long et al, Clinical and immunological assessment of asymptomatic SARS-CoV-2 infections, Nature Medicine, 18 June 2020. https://www.nature.com/articles/s41591-020-0965-6.pdf [9] NewsLetter, A ‘fit and healthy’ 25 year old COVID-19 patient is urging young people to take coronavirus seriously, 31 March 2020. https://www.newsletter.co.uk/read-this/fit-and-healthy-25-year-old-COVID-19-patient-urging-young-people-take-coronavirus-seriously-2523383 [10] Chartered Society of Physiotherapy, The importance of community rehabilitation, Last Accessed 3 July 2020. https://www.csp.org.uk/professional-clinical/improvement-innovation/community-rehabilitation/importance-community [11] Chartered Society of Physiotherapy, Rebab Matters, Last Accessed 3 July 2020. https://www.csp.org.uk/campaigns-influencing/campaigns/rehab-matters [12] NHS England, After-care needs of inpatients recovering from COVID-19, 5 June 2020. https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/06/C0388-after-care-needs-of-inpatients-recovering-from-COVID-19-5-june-2020-1.pdf [13] Barbara Melville, Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’, Patient Safety Learning’s the hub, 24 June 2020. https://www.pslhub.org/learn/coronavirus-COVID19/patient-recovery/resources-for-patients/dismissed-unsupported-and-misdiagnosed-interview-with-a-COVID-19-%E2%80%98long-hauler%E2%80%99-r2461/ [14] Patient Safety Learning’s the hub, Resources for patients, Last Accessed 3 July 2020. https://www.pslhub.org/learn/coronavirus-COVID19/patient-recovery/resources-for-patients/ [15] Health Awareness, Rehabilitation: making quality of life better for patients, 14 August 2019. https://www.healthawareness.co.uk/rehabilitation/rehabilitation-making-quality-of-life-better-for-patients/# [16] NHS England and NHS Improvement, NHS to launch ground breaking online COVID-19 rehab service, 5 July 2020. https://www.england.nhs.uk/2020/07/nhs-to-launch-ground-breaking-online-covid-19-rehab-service/ [17] CTV News, ‘Great medical mystery’ as COVID-19 ‘long-haulers’ complain of months-long symptoms, Last Updated 19 June 2020. https://www.ctvnews.ca/health/great-medical-mystery-as-COVID-19-long-haulers-complain-of-months-long-symptoms-1.4981669; Anonymous, ‘False negative’ and the impact on my mental health, Patient Safety Learning’s the hub, 22 May 2020. https://www.pslhub.org/learn/coronavirus-COVID19/273_blogs/false-negative-and-the-impact-on-my-mental-health-r2297/ [18] Barbara Melville, Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’, Patient Safety Learning’s the hub, 24 June 2020. https://www.pslhub.org/learn/coronavirus-COVID19/patient-recovery/resources-for-patients/dismissed-unsupported-and-misdiagnosed-interview-with-a-COVID-19-%E2%80%98long-hauler%E2%80%99-r2461/ [19] Financial Times, COVID-19 antibody test raise doubts over accuracy and utility, study finds, 26 June 2020. https://www.ft.com/content/dc4b97a9-d869-40bc-950a-60f9f383bed0; The Guardian, Doctors condemn secrecy over false negative COVID-19 tests, 25 May 2020. https://www.theguardian.com/world/2020/may/25/doctors-condemn-secrecy-over-false-negative-COVID-19-tests [20] Patient Safety Learning, COVID-19 tests: The safety implications of false negatives, Patient Safety Learning’s the hub, 22 May 2020. https://www.pslhub.org/learn/coronavirus-COVID19/273_blogs/COVID-19-tests-the-safety-implications-of-false-negatives-r2309/ [21] Psychology Today, Chronic Illness, Last Accessed 3 July 2020. https://www.psychologytoday.com/us/basics/chronic-illness [22] National Institute of Mental Health, Chronic Illness & Mental Health, Last Accessed 2 July 2020. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml [23] Dr Jake Suett, My experience of suspected 'Long COVID', Patient Safety Learning's the hub, 6 July 2020. https://www.pslhub.org/learn/coronavirus-covid19/273_blogs/my-experience-of-suspected-long-covid-r2547/ [24] The Guardian, Thousands of cancer patients could die early due to coronavirus delays, study finds, 20 May 2020. https://www.theguardian.com/society/2020/may/20/thousands-of-cancer-patients-could-die-early-due-to-coronavirus-delays-study-finds [25] Daily Mail, How coronavirus can attack the brain: From exhaustion and depression to even DEMENTIA symptoms… the effects COVID-19 can have on one of our most vital organs, 16 June 2020. https://www.dailymail.co.uk/health/article-8424649/How-coronavirus-attack-brain.html [26] Sign up to Safety Patient Engagement in Patient Safety Group, Patient Engagement in Patient Safety: A Framework for the NHS, May 2016. https://www.england.nhs.uk/signuptosafety/wp-content/uploads/sites/16/2016/05/pe-ps-framwrk-apr-16.pdf [27] Public Health England, Disparities in the risk and outcomes of COVID-19, June 2020. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/892085/disparities_review.pdf [28] Long-term impact of Infection with Novel Coronavirus, Study Information, Last Accessed 6 July 2020. https://www.liincstudy.org/en/study-information

In this blog, intensive care doctor Jake Suett draws on his personal journey and that of others to highlight the prolonged and frightening symptoms many patients with confirmed or suspected COVID-19 are experiencing. Jake outlines his concerns and sets out recommendations for future action to address the needs of these 'Long COVID' patients. Included is an example letter that can be adapted by others to call on MPs to raise awareness of those suffering persisting symptoms of COVID-19.  Dr Jake Suett: My experience of suspected 'Long COVID' I have been unwell for 109 days now, and the entire illness has been incredibly frightening, with episodes of severe shortness of breath, cardiac-type chest pains and palpitations to name a few. I think I am slowly improving but am left with residual symptoms that have never gone away entirely but regularly return strongly in waves. In March, I was working as a staff grade intensive care doctor. I was working closely with patients with COVID-19 and had an illness that began with fever, dry cough and shortness of breath. I had braced myself for the coming wave of COVID-19 and was helping my hospital to prepare. I had studied the mortality data from a paper in The New England Journal of Medicine1 and had concluded that, as a young, healthy and active 31-year old doctor I would likely survive (very likely) or die (really quite unlikely) if I became exposed to the virus. I had not anticipated the existence of this strange third possibility of still feeling extremely ill nearly 16 weeks later. I realised that I was not alone with my symptoms when I read Professor Paul Garner’s blog in the BMJ2 about six weeks into my illness. I joined some of the support groups on Facebook including 'Long Covid Support Group' and was suddenly faced with the realisation that there were thousands of us in the same position. It was a bittersweet moment as it helped me to feel less alone, but on the other hand confronted me with a tremendous volume of genuine human suffering that was going unrecorded and unnoticed due to the circumstances of the crisis. People are experiencing incredibly frightening symptoms but some have found it hard to access healthcare as the NHS was being protected from being overwhelmed. Most have remained at home and have not been admitted to hospital. Many were unable to access testing in the first month of their illness, and most were never admitted to hospital. I wrote a letter (attached at the bottom of this blog) that other people could send to their MPs in an attempt to raise awareness of the situation of people suffering persistent symptoms. Here are my current thoughts on the issue of 'Long COVID' and what the next practical steps should be in addressing the problem for sufferers and society in general. 'Long COVID' In some people, there are prolonged symptoms of COVID-19, which have been called 'Long COVID' or 'Post-acute COVID-19'. There is a growing body of evidence that a significant minority of patients are suffering persisting and distressing symptoms that in ordinary times would represent 'red-flag' symptoms requiring urgent investigation. Data from the COVID-19 symptom tracker app shows that 1 in 10 patients are having symptoms for longer than three weeks3. The British Lung Foundation and Asthma UK’s post-COVID survey4 of over 1000 patients, of which over 800 had not been admitted to hospital, found that: “…many people who had mild – moderate COVID are now on a long road to recovery, affecting both their physical and mental health” and “When asked what symptoms most affect them, the top five were: breathing problems (90%), extreme tiredness (64%), sleep problems (22%), cough (22%) and changes in mood, or anxiety or depression (22%). The majority of people had not experienced these symptoms before having COVID.” The symptoms experienced by these patients are frightening and are consistent with other serious differential diagnoses that would usually warrant urgent investigation to rule out serious causes. These symptoms include shortness of breath, chest pain and various neurological symptoms (numbness, weakness, visual disturbances etc). Many people report emergence of new symptoms late in the course of their illness, a relapsing-remitting pattern to their symptoms, and many have reported a mild initial illness, all of which adds to the distress and uncertainty of the condition. Tim Spector writes, “There is a whole other side to the virus which has not had attention because of the idea that ‘if you are not dead you are fine”3. Some patients have reported requiring treatment for con-current bacterial pneumonia, urinary tract infections and pulmonary emboli. Some have reported other serious outcomes such as strokes and cholecystitis. Some that have had investigations have reported serious abnormalities on blood tests, echocardiograms and CTs. Most of these patients have not required hospital admission and many have not been able to access PCR testing at the early stage of their illness. At the moment, this data is not being collected in a scientific fashion, which is an impairment to building up an evidence base around the topic. This data urgently needs to be moved from anecdote into scientific studies and then applied clinically to help people. Some high-profile figures have spoken out about their experiences with a prolonged illness including two Professors of Infectious Diseases and an MP5,6,7. There are many examples of people remaining unwell for three months and longer8 (see letter for more). Articles in the BMJ address the issue from the perspective of a GP9, and from the perspective of occupational health10. We already have emerging evidence of longer-term complications affecting the respiratory11, cardiovascular12, endocrine13, neurological14,15 and gastrointestinal16 systems in at least some patients after COVID-19 and a new Kawasaki disease type illness has been identified in children following infection17. There are also plenty of historical warnings about long-term effects from the SARS outbreak in 200318,19 as well as well documented complications of other viral illnesses. On the basis of this, it is important for us to keep an open mind about what the underlying pathophysiology is in 'Long COVID' patients and encourage further epidemiological, mechanistic and treatment studies by those with expertise in the field. It would be dangerous to assume that pathology that has been detected in hospital patients with COVID-19 can not also affect those who may have managed to avoid admission. Dealing with this issue will require research and collaboration between multiple different medical specialties. Perhaps collaboration and joint guidelines should be considered early on as well as urgently starting studies that capture this cohort. (The PHOSP-COVID study unfortunately only captures follow up in patients after hospitalisation, although of course is a welcome step in the right direction.) The issue has started to be talked about more widely this week. Andrew Gwynne MP asked the Leader of the House of Commons for a debate or statement on 'Long COVID' during business questions on 2 July 2020 and First Minister of Scotland Nicola Sturgeon discussed the issue at Wednesday 1 July’s daily briefing saying, “One of the things it took us longer to learn, and we are still learning, is that even for people who don’t become very seriously unwell and don’t die from it, it can still do really long-term damage.”20 On Sunday 5 July, it was announced that NHS England would be launching a tool to aid long-term recovery21 and a statement from NHS England said, “…evidence shows that many of those survivors are likely to have significant on-going health problems, including breathing difficulties, enduring tiredness, reduced muscle function, impaired ability to perform vital everyday tasks and mental health problems such as post traumatic stress disorder (PTSD), anxiety and depression.”22 This is a welcome step and provides recognition to those who have been left struggling with persisting symptoms. However, it is important that these services do not exclude those who did not require hospital admission nor those whose clinical features suggest COVID-19 but who may have had trouble accessing testing or have suspected false negative results for a variety of reasons23,24,25,26. Clinicians need to be able to access these services for their patients if they feel they would benefit from them. What is the danger? Of course, the pandemic is a crisis and resources have been stretched to the limits. There is no cure for COVID-19 and there is still little evidence to suggest what the pathophysiology of the prolonged symptoms are. It’s been a challenging time for politicians, healthcare professionals and patients alike. However, there are risks with the current situation for those with 'Long COVID' that can be solved now as we move away from the peak of the first wave of the pandemic. The risks are: That serious but treatable complications of COVID-19 may not be detected and managed, such as thromboses, secondary infections, or cardiovascular, endocrine or neurological sequelae etc. That serious but treatable pathology may go undetected if misattributed to COVID-19 and not investigated. There is a third danger from a public health perspective, which is to mistakenly consider outcomes in terms of death vs survival, and to not consider the possibility of long-term morbidity and delayed mortality in survivors of COVID-19, and therefore miscalculate the risk vs benefit calculations of easing lock-down and other public health measures. There is the danger that we miss this opportunity to have robust epidemiological studies to capture the entire spectrum of COVID-19 disease, and therefore any potential morbidity and mortality associated with “Long-COVID” symptoms will go undetected, along with any clues that may be gained regarding the pathophysiology of COVID-19 and treatment options. What needs to be done? I believe that dealing with the problem of 'Long-COVID' will require a response from government, public health bodies, healthcare systems, scientists and society. Collectively, we will need to: Establish a scientific approach to the study of patients undergoing prolonged COVID-19 symptoms (ensuring the cohort that was not hospitalised and has persisting symptoms is also captured in this data). This needs to include epidemiological, mechanistic and treatment studies. (The Long-term Impact of Infection with Novel Coronavirus (LIINC) study27 being carried out at University of California San Francisco is a good example of the type of study required for capturing objective data on the full spectrum of COVID-19 disease, including in those individuals with a prolonged illness. Maintain an open-minded approach to the underlying pathophysiology of the condition28,29, and avoid classifying it with existing names for diseases until there is sufficient evidence to make these statements. Include Long COVID patients in the study design stages. Raise awareness amongst health professionals and make arrangements so that treatable pathology is investigated and ruled out. Provide information and guidelines on how to manage long-term COVID19. Raise awareness amongst employers. Consider the medical, psychological and financial support that may be required by these patients. When considering measures to ease the lock-down, include a consideration of the risk of exposing additional people to prolonged COVID-19 symptoms and long-term health consequences. Ensure and clarify that the plans announced on 5 July 2020 for research and rehabilitation by NHS England do not inappropriately exclude those who have not required hospital admission and do not exclude those who have been unable to access testing early on, or in whom a false negative test is suspected. It is important that similar services are available throughout the UK. I have encouraged people with these persisting symptoms to write to their MPs to make clear the needs of this group. I have included a letter to explain the situation here in case they would find it helpful. Conclusion The Socratic paradox, "I know that I know nothing" must remind us to keep an open mind at this stage when dealing with a new disease. In his novel The Plague, Albert Camus wrote, “Everybody knows that pestilences have a way of recurring in the world; yet somehow we find it hard to believe in ones that crash down on our heads from a blue sky. There have been as many plagues as wars in history; yet always plagues and wars take people equally by surprise.” We have already been taken by surprise by this virus in many ways. It’s important that creating a huge pool of long-term suffering, of unclear aetiology and with unclear outcome, in up to 5-10% of the population does not become an additional surprise. Even if these patients are uncommon, given the number of SARS-CoV2 infections the country has now seen we must arm ourselves with robust studies and evidence to inform healthcare practices and government policy moving forwards. Unless we address this issue we will be left with a huge healthcare burden of chronic disease, and miss the opportunity to save lives and better understand this disease. Clinicians will face patients with these symptoms and have no access to evidence to help manage them. This will lead to bad health outcomes for both individual patients as well as causing significant impacts on society and public health in general. Additional reading: How will NHS staff with Long Covid be supported? Promises of Long Covid support have not materialised (a blog by Clare Rayner) Long Covid Minister needed to respond to growing crisis Post COVID-19 syndrome: What support can patients expect from their GP? Patient safety concerns for Long COVID patients (6 July 2020) Press release: Patient Safety Learning calls for urgent action to ensure Long COVID patients are heard and supported (6 July 2020) Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’ References Wei-jie Guan, Ph.D., Zheng-yi Ni, M.D., Yu Hu, M.D., Wen-hua Liang, Ph.D., Chun-quan Ou, Ph.D., Jian-xing He, M.D., Lei Liu, M.D., Hong Shan, M.D., Chun-liang Lei, M.D., David S.C. Hui, M.D., Bin Du, M.D., Lan-juan Li, M.D., et al. Clinical Characteristics of Coronavirus Disease 2019 in China. N Engl J Med 2020; 382:1708-1720. https://www.nejm.org/doi/full/10.1056/NEJMoa2002032 https://blogs.bmj.com/bmj/2020/05/05/paul-garner-people-who-have-a-more-protracted-illness-need-help-to-understand-and-cope-with-the-constantly-shifting-bizarre-symptoms/ https://covid19.joinzoe.com/post/covid-long-term https://www.blf.org.uk/media-centre/press-releases/%E2%80%9Cwe-have-been-totally-abandoned%E2%80%9D-people-left-struggling-for-weeks-as https://blogs.bmj.com/bmj/2020/06/23/paul-garner-covid-19-at-14-weeks-phantom-speed-cameras-unknown-limits-and-harsh-penalties/ https://www.theguardian.com/commentisfree/2020/jun/28/coronavirus-long-haulers-infectious-disease-testing https://andrewgwynne.co.uk/long-termer-my-struggle-with-post-covid-sickness-my-weekly-article-for-the-tameside-reporter/ https://www.bbc.co.uk/news/uk-wales-53169736 Helen Salisbury: When will we be well again? BMJ 2020;369:m2490 https://www.bmj.com/content/369/bmj.m2490 https://blogs.bmj.com/bmj/2020/06/23/covid-19-prolonged-and-relapsing-course-of-illness-has-implications-for-returning-workers/ Xiaoneng Mo, Wenhua Jian, Zhuquan Su, Mu Chen, Hui Peng, Ping Peng, Chunliang Lei, Shiyue Li, Ruchong Chen, Nanshan Zhong. Abnormal pulmonary function in COVID-19 patients at time of hospital discharge. European Respiratory Journal Jan 2020. https://erj.ersjournals.com/content/early/2020/05/07/13993003.01217-2020 Tomasz J Guzik, Saidi A Mohiddin, Anthony Dimarco, Vimal Patel, Kostas Savvatis, Federica M Marelli-Berg, Meena S Madhur, Maciej Tomaszewski, Pasquale Maffia, Fulvio D’Acquisto, Stuart A Nicklin, Ali J Marian, Ryszard Nosalski, Eleanor C Murray, Bartlomiej Guzik, Colin Berry, Rhian M Touyz, Reinhold Kreutz, Dao Wen Wang, David Bhella, Orlando Sagliocco, Filippo Crea, Emma C Thomson, Iain B McInnes. COVID-19 and the cardiovascular system: implications for risk assessment, diagnosis, and treatment options, Cardiovascular Research, cvaa106, https://doi.org/10.1093/cvr/cvaa106https://academic.oup.com/cardiovascres/article/doi/10.1093/cvr/cvaa106/5826160 Agarwal S, Agarwal SK. Endocrine changes in SARS-CoV-2 patients and lessons from SARS-CoV. Postgraduate Medical Journal 2020;96:412-416. https://pmj.bmj.com/content/96/1137/412 Antonino Giordano, Ghil Schwarz, Laura Cacciaguerra, Federica Esposito, Massimo Filippi. COVID-19: can we learn from encephalitis lethargica? The Lancet Neurology, 2020;19(7):570 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30189-7/fulltext#articleInformation Mark A Ellul, Laura Benjamin, Bhagteshwar Singh, Suzannah Lant, Benedict Daniel Michael, Ava Easton, Rachel Kneen, Sylviane Defres, Jim Sejvar, Tom Solomon. Neurological associations of COVID-19, Lancet Neurol 2020, https://doi.org/10.1016/S1474-4422(20)30221-0 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30221-0/fulltext Lijing Yang, Lei Tu. Implications of gastrointestinal manifestations of COVID-19. Lancet Gastroenterol Hepatol 2020; May 12, 2020. https://doi.org/10.1016/S2468-1253(20)30132-1https://www.thelancet.com/pdfs/journals/langas/PIIS2468-1253(20)30132-1.pdf Galeotti, C., Bayry, J. Autoimmune and inflammatory diseases following COVID-19. Nat Rev Rheumatol (2020). https://doi.org/10.1038/s41584-020-0448-7https://www.nature.com/articles/s41584-020-0448-7 Ngai, J.C., Ko, F.W., Ng, S.S., To, K.‐W., Tong, M. and Hui, D.S. The long‐term impact of severe acute respiratory syndrome on pulmonary function, exercise capacity and health status. Respirology, 2010, 15: 543-550. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1440-1843.2010.01720.x Ong, Kian-Chung et al. 1-Year Pulmonary Function and Health Status in Survivors of Severe Acute Respiratory Syndrome. CHEST, 2005, Volume 128, Issue 3, 1393 - 1400 https://journal.chestnet.org/article/S0012-3692(15)52164-8/fulltext https://www.thecourier.co.uk/fp/news/politics/scottish-politics/1414976/100-days-ill-health-secretary-pledges-support-for-long-haul-covid-19-patients-who-never-got-better/ https://www.bbc.co.uk/news/health-53291925 https://www.england.nhs.uk/2020/07/nhs-to-launch-ground-breaking-online-covid-19-rehab-service/ Watson Jessica, Whiting Penny F, Brush John E. Interpreting a covid-19 test result. BMJ 2020; 369: m1808https://www.bmj.com/content/369/bmj.m1808 Fan Wu, Aojie Wang, Mei Liu, Qimin Wang, Jun Chen, Shuai Xia, Yun Ling, Yuling Zhang, Jingna Xun, Lu Lu, Shibo Jiang, Hongzhou Lu, Yumei Wen, Jinghe Huang. 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The COVID-19 Recovery Collective is a small team of collaborators that wanted to do something constructive to help those that are in recovery from the COVID-19 virus. The impact of the virus across the globe has been rapid and far reaching. Many are struggling to keep pace with developments, from the recovery process of the infection itself, to the economic consequences of the virus and also the sociological impact of lockdown.The collaboration started as a token action towards helping those that are in recovery from COVID-19, in the hope that by encouraging people to share their own experiences of recovery they can instil some reassurance in others of potential expectations. Through this sharing of experiences, we might see some similar patterns of recovery and also provide an opportunity to share any knowledge or actions that might have helped others to deal with the personal impact of the infection on their health.

COVID-19 rehabilitation will improve exercise tolerance, muscle strength, and help patients manage breathlessness, and potentially allow someone to be discharged earlier. The treatments in this guide, produced by Liverpool Heart and Chest Hospital, focus on breathing, functional and physical exercises. Only complete exercises at home and in hospital that have been discussed with a clinician.

This document, developed by McMaster University's School of Rehabilitation Science in Canada, provides a guide for rehabilitation practice during the COVID-19 crisis. Informed by the best available evidence, including consultation with the clinical community, this living document consolidates findings from resources for front line rehabilitation professionals.

As COVID-19 spread throughout the world, clinicians and researchers rapidly published guidance and data and shared their experiences in the hope of understanding the virus better. Their shared purpose was to keep more patients safe from becoming acutely unwell or dying. While the initial focus was on treating the hospitalised, one Trust was also thinking ahead to the challenging recovery many would face.

There is an increasing amount of evidence that co-producing change and improvement in health care leads to new approaches that are more likely to succeed and be sustained.  This blog, by the US-based Institute for Healthcare Improvement, asks: 'As health care systems grapple with planning for an uncertain future during the COVID-19 pandemic, how do we ensure that people with lived experience are real partners in what comes next?'