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More than 16,000 people have shared their experiences of mental health during the pandemic as part of this research. More than two-thirds of adults with mental health problems reported that their mental health got worse during lockdown. As a direct consequence of the pandemic and all that follows, many people who were previously well will now develop mental health problems. Supported by these findings, Mind are urging the UK and Welsh Governments to put mental health at the very centre of their recovery plans. As we look to the future, those in power must make the right choices to rebuild services and support, and to ensure that the society that comes after the pandemic is kinder, fairer and safer for everyone experiencing a mental health problem.

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

This briefing discusses the mental health effects of these financial inequalities in the context of the COVID-19 pandemic. It draws evidence from the “Coronavirus: Mental Health in the Pandemic” research – a UK-wide, long-term study of how the pandemic is affecting people’s mental health. The study is led by the Mental Health Foundation, in collaboration with the University of Cambridge, Swansea University, the University of Strathclyde and Queen’s University Belfast.