Nearly 5 years since the start of the Covid-19 pandemic, patients with Long Covid are still struggling to get treatments
It’s been almost 5 years since the Covid-19 outbreak was declared a pandemic by the World Health Organization. Although most people recover within a few days or weeks, according to the ONS an estimated 2 million people are living with Long Covid in England and Scotland. 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. The condition is making a significant contribution to the current workforce crisis. Symptoms often fluctuate and are wide ranging, making it hard to diagnose and treat.
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. In 2024 it seems that many GPs are still unable to provide the support people with the condition so badly need. Survey data from the charity Long Covid SOS, shows over half (55%) of patients are unhappy with the care they’ve been provided by their GP. 27% said their GP knew very little about Long Covid and struggled to offer any help.
“My GP has always been sympathetic and always believed me but seems to have little to no knowledge of the condition. Any treatment has come at my insistence which I do find exhausting and frustrating” – Survey respondent, England
A recent study carried out by the University of Southampton showed that interactions with healthcare professionals can produce considerable self-doubt among Long Covid patients.
However, today the charity Long Covid SOS, in collaboration with the Clinical Post Covid Society is launching a new, improved and revised resource for GPs endorsed by the Royal College of General Practitioners. The comprehensive leaflet will provide support to both GPs and patients. It contains tips and resources for diagnosis and symptom management including:
Strategies for managing fatigue and PESE (post exertional symptom exacerbation)
Diagnostic considerations for breathlessness
Treatment options for Postural Tachycardia Syndrome (PoTS)
Help and resources to support patients with cognitive dysfunction
A wide range of external resources
"Sadly, there have been few breakthroughs in treatments and diagnostics for Long Covid, but GPs have told us they want to do more for patients. That’s why we’ve worked side-by-side with people living with Long Covid, GPs, the Clinical Post Covid Society and the Royal College of General Practitioners (RCGP) to develop comprehensive information on what can be done to help patients - what to look out for, and what treatments are available.” - Ondine Sherwood, CEO and Co-Founder of Long Covid SOS
“This is a fantastic resource that has been developed jointly by clinicians and patients. We hope it will be useful to GPs to remind them to think about Long Covid and other post viral syndromes. It gives up to date information about how to manage different aspects of these complex conditions” - Dr Melissa Heightman, Consultant Integrated Respiratory Physician and Clinical Lead Post COVID Service, University College London Hospital
“There are 2 million people living with Long Covid in the UK. Most will be solely managed in primary care. This Long Covid resource, developed by Long Covid SOS and the Clinical Post Covid Society and endorsed by RCGP, offers evidence-based guidance for GPs in managing and supporting people with Long Covid. It is a must-read for all primary care clinicians.” - Professor Carolyn Chew-Graham OBE, Professor of General Practice Research at Keele University
“This updated, 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.” - Amitava Banerjee, Trustee of Long Covid SOS, Professor of Clinical Data Science and Honorary Consultant Cardiologist, University College London
The new information leaflet from Long Covid SOS is available for download here.
About Long Covid SOS
Long Covid SOS was established during the early months of the pandemic and is staffed entirely by volunteers with lived experience of Long Covid. It is a registered Charity and has played a major role in generating awareness of the condition through social media and press campaigning and has worked with NHS England, the WHO and other institutions since 2020. The charity is a Core Participant as part of the Long Covid Groups in the UK Covid Inquiry.
The survey data from Long Covid SOS shows:
26.8% of respondents said their GP knew very little about Long Covid and struggled to offer any help. 35.5% of respondents said their GP was aware of Long Covid and was empathetic but did not have any practical advice. Only 14.4% of respondents had a positive interaction with their GP, saying that their GP was knowledgeable about the condition, and we discussed treatment options.
When asked to rate their GP in terms of care provided on a scale between 1 and 10, 54.6% rated their GP 4 or less out of 10, with only 31.3% scoring their GP 6 or more. This suggests a relatively high level of dissatisfaction.
The full results of the survey can be found here.
The new information leaflet can be accessed here.
About Long Covid
Many people with Long Covid are unable to work and support their families. Health and social care are the sectors most impacted but as yet the condition has not been classified as an Occupational Disease. The last ONS estimates suggest that 3.3% of the UK population have Long Covid, of whom 1.5 million are adversely affected and 381,000 severely impacted
Although NHS England has set up more than 90 Long Covid clinics there is no cure and no validated treatments, only symptom relief. There are currently very few Long Covid clinics in Scotland with only patchy provision in Wales and Northern Ireland. The NHS England National Long Covid team has been stood down at the end of March 2024, and funding will be moved to the Integrated Care Boards from 2025.
Long Covid is having a direct impact on the economy. The Bank of England highlighted the contribution Long Covid has made towards an estimated 440,000 missing workers. A report published by the Economist estimated that Long Covid could result in lost work hours with a value equal to 0.5% of GDP. See here for more on this topic.
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