This is a copy of our Press Release to support the launch of our new leaflet for GPs
Long Covid patients are being let down
More than half of Long Covid patients feel they’ve been given inadequate care while living with the condition and 27% say their GP struggled to offer any help.
It’s been four years since the Covid-19 outbreak was declared a pandemic by the World Health Organization, going on to infect nearly 800 million people across the world (1). Most people recover within a few days or weeks of their first symptoms, but an estimated 1.9 million have symptoms of Long Covid in the UK (2). A debilitating illness that causes a range of symptoms including severe fatigue, acute pain, and brain fog, Long Covid can impair the ability to work and perform even simple daily activities. Symptoms often fluctuate and are wide-ranging making it hard to diagnose and treat.
Although much research has been carried out, many doctors are still uncertain how to treat Long Covid and patients are often given no medication, are misdiagnosed or worse, ignored completely.
In 2020, 65% of GPs surveyed by the Royal College of General Practitioners (RCGP) felt not very or not at all confident treating patients with Long Covid symptoms (3). Four years on, it seems that many GPs are still unable to provide the support people with the condition so badly need.
New survey data from the charity, Long Covid SOS, shows patients suffering from Long Covid feel let down by current healthcare provision, and left to deal with it alone. Over half (55%) of patients surveyed are unhappy with the care they’ve been given by their GP. 27% said their GP knew very little about Long Covid and struggled to offer any help (4).
Niamh MacPhail contracted the illness in 2022 and is still struggling to manage her symptoms two years on.
“Initially the GP I saw dismissed my dysautonomia symptoms as anxiety, and suggested I try swimming. I started seeing one of the head GPs at my surgery, and he was very resistant to acknowledge symptoms were Long Covid-related. He implied my rapid weight loss was an eating disorder (a valid and serious condition but not what I was experiencing) and only started to take me seriously when I brought a male companion to appointments. I started seeing the other head GP at my surgery who has been really helpful. She keeps relatively up to date with Long Covid research, wears a mask at our appointments, runs an air purifier, and referred me to specialists and the Long Covid clinic. I try to see her when I can.”
A recent study carried out by the University of Southampton and supported by the National Institute for Health Research (NIHR) showed considerable self-doubt among Long Covid patients participating in the study, sometimes reinforced by interactions with healthcare professionals (5).
However, new information from Long Covid SOS endorsed by the RCGP, launching today, is intended to provide support to both patients and their GPs. It contains tips and resources for symptom management including:
Principles of pain management
Treatment options for rapid heart rate increases (Postural tachycardia syndrome or PoTS)
Strategies for managing fatigue
Diagnostic considerations for breathlessness
Help and resources to support patients with their mental health and wellbeing
Ondine Sherwood, Co-Founder of Long Covid SOS said:
“Not much has changed for Long Covid treatments and diagnoses over the past four years and GPs have told us they want to do more for patients that come to them. That’s why we’ve worked side-by-side with patients, GPs and the Royal College of General Practitioners (RCGP) to develop concrete information on what to look out for and how to treat patients with Long Covid.
Our new leaflet will be a huge help to patients who need to feel heard and helped by their GP as well as to GPs who want new informed, patient-led insights on how to support someone living with this debilitating illness.”
Amitava Banerjee, Trustee of Long Covid SOS, Professor of Clinical Data Science and Honorary Consultant Cardiologist Institute of Health Informatics, University College London said:
“This new, detailed yet accessible leaflet will be an important source of information and a great help to GPs who want informed, patient-led insights on how to support someone living with Long Covid, and to their patients who need to feel heard and cared for.”
The new information leaflet from Long Covid SOS is available for download here.
A companion leaflet for patients visiting their GP has also been developed and can be found here
4 Long Covid SOS, Survey of Long Covid patients’ Experience with their GP
5 University of Southampton, Barriers to healthcare access: findings from a co-produced Long Covid case-finding study
