PatientSafetyLearning Team

Safe zones compromised COVID-19 testing is being used to inform decisions around infection control. If there are people moving into or between health and social care settings (patients or staff), who have tested negatively and are not showing typical symptoms of COVID-19, they will likely be treated accordingly. For example, they may be placed in ‘green’ areas, dedicated for those who do not have the virus. These areas are designed to protect non COVID-19 patients but there is a risk that some patients could have had a false negative test result and slipped through the net, compromising safety measures. A danger of misdiagnosis If clinicians are relying on test results being accurate, people who are experiencing symptoms but are told they are COVID-19 negative may be dismissed or misdiagnosed. In a recent blog published on the hub, patient ‘Sarah’ explains how she was discharged from A&E, following a negative test result, and diagnosed with anxiety. A few days on she deteriorated, needing to be admitted to hospital again, this time by ambulance. She was told by paramedics that, according to her observations, she should have been in a coma. Doctors later confirmed that her initial test result had been falsely negative and that she did have COVID-19. Sarah also expressed concern for the paramedics who were not wearing adequate protection to treat someone with COVID-19, because they were wrongly reassured by the test that she was negative [4]. Impact in the community If members of the public test falsely negatively for COVID-19, there is the risk that they will not isolate and will spread the infection further as they access supermarkets, pharmacies and don’t distance from members of their household. There may also be cases where patients who had a false negative were incorrectly advised they were safe to return to work. For key workers in particular, this would increase the risk of spreading the virus to their colleagues and service users. Impact on mental health and recovery There is a risk that a patient’s mental health and wellbeing could deteriorate if they receive a negative test result but are in fact suffering from COVID-19. This is of particular concern in relation to the significant number who are experiencing a slow and debilitating recovery but have not necessarily needed hospital care [5][6]. We are hearing from COVID-19 support groups that these ‘moderate’ sufferers are often left feeling lonely, depressed and frustrated that they are unable to get back on their feet as quickly as they feel they should [7]. There seems to be little support for this group, particularly where they have tested negatively and their symptoms do not align with the official list of symptoms for coronavirus infection. Some people who were sure they had the virus but received a negative test result, have ended up doubting themselves. They pushed their bodies too hard too soon, causing relapses in symptoms and they have subsequently faced further mental health challenges. In an anonymous account shared on the hub, one patient explains how a false negative caused her mental health to deteriorate. “I thought that I should be physically active if I didn't have COVID-19, so I pushed myself and berated myself when I repeatedly became unable to breath with a pounding heart upon any exertion. I couldn't cope caring for my four children and was in a 'critical' dangerous mental state many times. I self-harmed to try and cut off from feeling so awful.” [8] Concluding thoughts Patient Safety Learning are concerned that false negative test results could present several risks to patient safety and we ask the following questions: How are the number of false negative tests being monitored and is this data being publicly reported? Is adequate research being undertaken to understand the cause/s behind the false negative results? What steps are being taken to reduce the testing problems commonly encountered by healthcare professionals that lead to false negatives? Do staff taking swabs feel adequately trained and supported? Is patient feedback around the ease of the self-testing process being captured and reported on? Is the current support and guidance for people who are home-testing fit-for-purpose and endorsed by human factors experts? What is the guidance for caring for patients in hospitals and care settings when they are experiencing symptoms of COVID-19 but have tested negatively? What support is available for patients who believe they have had COVID-19 and are experiencing debilitating symptoms weeks later, but may not have been tested or may have tested negatively? A highly accurate antibody test would help to address some of the concerns raised in this blog and provide a clearer picture of the rate of false negatives. When is that likely to be widely available? References UK Parliament, House of Commons Debate: COVID-19 Response, Volume 676, 18 May 2020. https://hansard.parliament.uk/commons/2020-05-18/debates/8FA78498-C990-4246-A745-AE0F36F7B948/Covid-19Response West, Colin. P, Montori, Victor. M and Sampathkumar, P, Covid-19 Testing: The Threat of False-Negative Results, Science Direct, 11 April 2020. https://www.sciencedirect.com/science/article/pii/S0025619620303657#! Department of Health and Social Care, Coronavirus (COVID-19): scaling up testing programmes, Last Updated 6 April 2020. https://www.gov.uk/government/publications/coronavirus-covid-19-scaling-up-testing-programmes Sarah, My ‘false negative’ COVID-19 test put others at risk, Patient Safety Learning’s the hub, 19 May 2020. The Guardian, ‘Weird as hell’: the Covid-19 patients who have symptoms for months, 15 May 2020. https://www.theguardian.com/world/2020/may/15/weird-hell-professor-advent-calendar-covid-19-symptoms-paul-garner; Sky News, Prof Tim Spector: There’s no such thing as a ‘classical’ COVID-19 case, Facebook, 18 May 2020. https://www.facebook.com/skynews/videos/3470045256358345 Facebook, Covid-19 Support Group, Last Accessed 22 May 2020. https://www.facebook.com/groups/625349464716052/?multi_permalinks=636948470222818 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/

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.

My symptoms began towards the end of April. I started to cough and feel really cold. I developed a severe headache, was bothered by light and started to hurt in my kidney area and my neck. I stopped being able to complete a sentence without breathing in between words and felt like I had a tight chest. I found it hard to stay awake. I struggled to breathe if I even stood up. We started to isolate as a family of six. My GP tried to call but I was too breathless to speak on the phone so she asked me to take my blood pressure. It was 130/95 with a pulse of 38. She told my husband to take me to the hospital in case I needed oxygen. I was taken to a ward specifically for those showing signs of COVID-19. Three nurses treated me while I was crying and coughing and unable to breathe. They had a mask and gloves and had put a mask on me but the masks were not great and I didn't think it would be sufficient protection. One swabbed my throat and up my nose. I knew I had COVID-19 and didn't want them touching me as I thought they would get it. Two hours later was told I was fine and should go home. The doctor said my blood results were clear, my chest X-ray was clear I didn't have COVID, just anxiety. On my way out I was distressed as my husband and I were sure I had it. We continued to isolate as a family, despite what I was told in hospital. I haven't had anyone contact me with my swab results. At home, my symptoms got worse. I was freezing and coughing, headache, diarrhoea, aches, foggy, couldn't taste or smell, craved sugar to keep me awake. My fever came on and off. I had three teenagers and a five year old at home. I had extreme exhaustion and was unable to walk or complete sentences. A week or so later, following a phone call, the GP sent a Healthcare Assistant (HCA) to take my blood pressure and SATS. The HCA said that I had tested negative for COVID but I told her that I didn't believe it to be accurate. She gave me the SATS monitor to use myself while she watched from the doorway. My SATS went down to 80percent when I lifted my arms so the HCA called the GP who called an ambulance. The paramedics said that I should be in a coma according to my obs. He was only wearing gloves and a mask so I was upset as I was sure I had COVID. He commented that it was in my notes, COVID negative. The paramedics were with me for over an hour in my house. My daughter was in the room and husband who were not wearing masks and my other three children not wearing masks came to say goodbye to me. It would have been quite possible for them to be spreading it to the paramedics too. Upon walking to the ambulance, my SATS went down to 68% with a blood sugar of 2, so I was given sugar and given oxygen in the ambulance. I started to shake. The paramedic then changed into a hazmat suit. The other paramedic carried on treating me as he wanted to put a cannula into me. Acknowledging my concerns, they reassured me that they would speak to the staff to say that I may have had a false negative as I was showing signs of COVID. The staff in the resuss part of the hospital were wearing full PPE with plastic over their faces. A few hours later the doctor made me walk round the ward with a SATS monitor attached to my ear. My SATS went down to 96 then 94 then 92 and then 90 and then I went back to my bed. The doctor told me that I did have COVID-19, that it had been a false negative and that I needed to rest. My biggest concerns are for the safety of the paramedics, who were seriously at risk thinking I was a negative for COVID-19 because of my initial test results. I'm interested to know if anyone else had a similar experience.