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Found 31 results
  1. Content Article
    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: 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. Neutralizing antibody responses to SARS-CoV-2 in a COVID-19 recovered patient cohort and their implications. medRxiv 2020.03.30.20047365; doi: https://doi.org/10.1101/2020.03.30.20047365 https://www.medrxiv.org/content/10.1101/2020.03.30.20047365v2 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/890566/Evaluation_of_Abbott_SARS_CoV_2_IgG_PHE.pdf https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/891598/Evaluation_of_Roche_Elecsys_anti_SARS_CoV_2_PHE_200610_v8.1_FINAL.pdf https://www.liincstudy.org/en/study-information Dominique Batisse MD Assistance, Nicolas Benech MD, Elisabeth Botelho-Nevers MD, Kevin Bouiller MD, Rocco Collarino MD, Anne Conrad MD, Laure Gallay MD, Francois Goehringer MD, Marie Gousseff MD, Dr Cedric Joseph MD, Adrien Lemaignen MD, PhD, Franc¸ois-Xavier Lescure MD, Bruno Levy MD, PhD, Matthieu Mahevas MD, PhD, Pauline Penot MD, Bruno Pozzetto MD, PhD, Dominique Salmon MD, PhD, Dorsaf SLAMA , Nicolas Vignier MD, PhD, Benjamin Wyplosz. Clinical recurrences of COVID-19 symptoms after recovery: viral relapse, reinfection or inflammatory rebound? Journal of Infection (2020), doi: https://doi.org/10.1016/j.jinf.2020.06.073 https://www.sciencedirect.com/science/article/pii/S0163445320304540?fbclid=IwAR0WEEf9dNtmXmFuU-m67g-Fs5SLdckb1f-FnNzSnX1tT4dw3uGWmsfnS60 Ding, H., Yin, S., Cheng, Y., Cai, Y., Huang, W. and Deng, W. Neurologic manifestations of nonhospitalized patients with COVID‐19 in Wuhan, China. MedComm, 2020. doi:10.1002/mco2.13 https://onlinelibrary.wiley.com/doi/full/10.1002/mco2.13?fbclid=IwAR1yQ8DkVOCsIdonjuzl8tx7LlBp0_Lt6KgVUW79SrFwo-_9nyZmWiz7rsQ
  2. Content Article
    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
  3. News Article
    Demand for oxygen from COVID-19 patients recovering at home is set to place the NHS under strain, the health service has warned. NHS England has issued guidance to out-of-hospital health providers on the extra demands likely to be placed on them given the number of people recovering after a hospital stay with the coronavirus. It warns that the provision from its home oxygen services and community respiratory teams across the NHS is expected to be an issue as the scale of demand increases. Andrew Whittamore, a practising GP and clinical lead for the Asthma UK and British Lung Foundation partnership, said concerns about the potential for hospitals to be overwhelmed in the early part of the pandemic had led to community oxygen teams being primed to take on more patients – but he described that ramping up as “a short-term fix”. “We don’t know how long people are going to need oxygen or other services for,” he said. “There are definitely going to be extra patients added on to our community teams’ workloads.” The Taskforce for Lung Health – of which the British Lung Foundation is a member – has raised particular concerns about access to pulmonary rehabilitation. An education- and exercise-based treatment, which is proven to be more effective for lung patients than many drug-based treatments, and face-to-face classes have been suspended during the pandemic. It may be that such treatment would also be helpful for some patients recovering from COVID-19. Jackie Eagleton, policy officer at the British Lung Foundation, said there had been issues with access to pulmonary rehabilitation for a long time, but the need to offer this form of support to people with lung conditions “has never been more pressing than it is now”. Read full story Source: The Independent, 16 June 2020
  4. Content Article
    The key challenges identified are: funding; capacity; rehabilitation; health inequalities; regulation and inspections; system working; and managing public expectations. It puts forward a number of practical solutions for the phase three guidance and beyond, including: An extension of emergency funding across all sectors of the NHS, given significant extra demand across all services. Longer term funding will be needed for rehabilitation and recovery services in the community, including for mental health, to manage patients at home and in the community. Putting in place an ongoing arrangement with the private sector – this will be vital to provide capacity to respond to the backlog of treatment. A review of the impact of COVID-19 on the NHS and social care workforce given the unprecedented pressure staff have been under A delay in returning to the inspection regime of the CQC to take into account the positive changes that have been achieved as a result of the lighter touch approach to regulation that has been in place during the pandemic. A commitment to acknowledge and address health inequalities wherever possible through upcoming guidance and policy reform. Clarity over when there will be a return the greater autonomy local organisations had before COVID-19 returned, as we move from Level 4 to Level 3. This should be considered as part of a wider move to less central command and control when the pandemic has subsided. A call for assurance that there will be a fully operational and robust test, track and trace system, as well as appropriate supplies of personal protective equipment (PPE),as services are resumed.
  5. Content Article
    This statement highlights an anticipated increase in the need for rehabilitation across four main population groups: 1. People recovering from COVID-19, both those who remained in the community and those who have been discharged following extended critical care/hospital stays. 2. People whose health and function are now at risk due to pauses in planned care. 3. People who avoided accessing health services during the pandemic and are now at greater risk of ill-health because of delayed diagnosis and treatment. 4. People dealing with the physical and mental health effects of lockdown. The rehabilitation needs of these at-risk groups are vitally important and need to be met as AHPs collectively support people to recover, regain health and wellbeing, and reach their potential, and ultimately ensure we flourish as a nation.
  6. News Article
    The health service will face a “tsunami” of coronavirus survivors discharged from hospitals needing long-term physical and mental support that the NHS will struggle to provide, The Independent has been told. Coronavirus can leave patients with lasting physical damage and scarring to their lungs, meaning many could struggle to breathe and move around as well as they did before – in some cases permanently. Patients admitted to intensive care can also suffer physical effects of being paralysed weeks and almost half who are ventilated with a tube in their windpipe will experience a form of delirium that can include terrifying hallucinations and leave survivors with lasting mental problems including post-traumatic stress. Experts have warned a long-term lack of funding of NHS rehabilitation services and post-discharge care for ITU patients means the health service will struggle to help the thousands of patients who beat the virus but face a long road to recovery. Read full story Source: 3 May 2020
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