Patients’ experiences of “longcovid” are missing from the NHS narrative

Patients and carers must be involved in any initiatives to explore the long term impacts of covid-19

As a group of doctors who have chronic covid-19 symptoms, we have been digesting information on social media platforms from thousands of individuals in the UK and worldwide affected by covid symptoms for 16 weeks or more. Support groups have rapidly sprung up on social media in which concerns have been raised about the lack of awareness among NHS doctors, nurses, paramedics and other healthcare professionals with regard to the prolonged, varied, and weird symptoms. 

Some of these symptoms and patients’ experiences have been summarised in a video “Message in a bottle—long covid SOS.” Many individuals have been reporting symptoms that range from low oxygen saturations, breathlessness, chest pain, pericarditis/myocarditis, pericardial / pleural effusions, fast heart rate with minimal exertion, hoarseness, skin manifestations, new onset dysphasia, acquired dyslexia, headaches, severe fatigue, relapsing fevers, lymphadenopathy, joint pains, sore throat and diarrhoea. Symptoms may arise through several mechanisms including direct organ damage and changes in immune function.   

These wide ranging, unusual, and potentially very serious symptoms can be anxiety provoking, particularly secondary to a virus that has only been known to the world for eight months and which we have barely begun to understand. However, it is dismissive to solely attribute such symptoms to anxiety in the thousands of patients like ourselves who have attended hospital or general practice with chronic covid-19. There is an enormous amount that we still do not know about covid-19. Many symptoms do not appear to be “post viral” as they emerged with the first manifestations of covid, some symptoms appear later, and it is still uncertain if the relapses represent viraemias or not. Follow-up studies are urgently needed and we  (im)patiently await epidemiological data on long term sequelae of covid.

The stories from online support groups have revealed a frustrating lack of access to appropriate investigations for symptomatic individuals and their GPs due to lockdown and a reduction of services. But one thing has been striking to us when listening to the narratives of people trying to get their doctors to listen to their concerns: although some have excellent doctors who listen sympathetically, use their clinical acumen, and order the necessary investigations that they can from secondary care, many affected individuals have been dismissed with the label of “anxiety” and have endured incredulity and a lack of sympathy or support. This concerns us greatly as clinicians and also as we are involved in undergraduate and postgraduate teaching of professional behaviours. It is unclear why some patients have struggled to get the necessary support.  It may be partly due to a lack of knowledge, a lack of clinical guidance on how to manage chronic covid-19, as well as burnout or clinician anxiety when faced with an infection whose symptoms and treatment are poorly understood. 

The announcement of an NHS portal for patients who have been admitted to hospital or dealt with the illness at home is a welcome signal that the problems of long standing covid symptoms are starting to be recognised. However, any such initiative should have input from individuals who have the symptoms and should not be a purely top-down venture. We are still not reassured about what form the assistance will take and concerned that the NHS coronavirus website still does not give a full and accurate list of symptoms. Antibody tests may be unreliable especially when measured after 5 weeks of infection and thus many diagnostic uncertainties remain. Hence clinical acumen is required in the diagnosis and individualised management of the varied manifestation of long covid. We know from research that this virus is not just a “respiratory virus.” Evidence suggests that it affects the brain, heart, pancreas, skin, thyroid, gut, kidneys and musculoskeletal system. So, we would urge that this new portal should be co-created with by patients with covid-19 and carers. There needs to be some bidirectionality in the creation of this service and subsequent research to avoid institutional “top down” blind spots about the condition. We have been encouraged to find really interesting patient led research about long covid and antibody testing e.g. Slack Body Politic group, and all of this patient led data could be the foundation for supporting the rehabilitation of those affected by prolonged symptoms of covid-19. We hope that any programme to help this affected group will take into account the heterogeneity of patients and lead to individualised management plans which differ according to their symptoms. 

Amali U Lokugamage is a consultant in obstetrics and gynaecology at Whittington Health NHS Trust, London, UK, and honorary associate professor and deputy lead of clinical and professional practice at UCL Medical School, London.

Sharon Taylor, is a consultant in liaison child and adolescent psychiatry at St Mary’s Hospital London employed by Central and North West London NHS Foundation Trust, Personal Tutor Imperial College school of medicine, Honorary Senior Lecturer Imperial College London. Joint trainee program director for higher trainees on the St Mary’s higher training scheme in CAMHS.

Clare Rayner is a retired consultant occupational health physician and honorary lecturer University of Manchester Medical School

Competing interests: CR is in the shielding group for covid 19 due to underlying conditions. AUL, ST and CR have had prolonged symptoms / complication of Covid-19 . AUL is on the Board of Directors of the International MotherBaby Childbirth organisation. She is a company director of a small publishing company called Docamali Ltd.