During the early stages of the pandemic, it started to become clear that there were significant numbers of people with confirmed or suspected COVID-19 who were struggling with debilitating and sometimes severe symptoms many months after the initial infection.
At times referred to as ‘long-haulers’ or having ‘chronic’ COVID-19, the term ‘Long COVID’ has emerged as the most common description used by UK patients.
At Patient Safety Learning, a charity and independent voice for patient safety, we have been looking at some of the patient safety concerns facing people living with Long COVID managing their symptoms and recovery at home.
What is Long COVID?
The National Institute for Health and Care Excellence (NICE) have recently published a guideline defining Long COVID (which they refer to as Post-Covid-19 syndrome) as:
“Signs and symptoms that develop during or following an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body.” 
These symptoms can vary greatly, ranging from shortness of breath to cardiac symptoms and extreme fatigue.
Patient safety concerns
Patients have reported that GPs and other clinicians were not acknowledging Long COVID or wrongly attributing their physical symptoms to anxiety.
People have told us of friends and family who do not believe the extent or impact of their illness, employers who are pushing them to return to work before they are physically ready and some doctors who don't believe Long COVID exists.
We are also hearing that many people with Long COVID are having difficulties accessing financial support while they are unable to work as a result of their symptoms.
While there is growing recognition of this condition, there remains worrying gaps in both clinical and public awareness.
Drawing on patient experiences, we identified a number of patient safety concerns requiring action. 
One of the key issues we highlighted early on was the need for the healthcare system to start listening and learning from patients living with Long COVID, to help inform understanding of this new disease, its impact, and to better understand and address people’s support needs.
This will help inform what clinical guidelines and further research is needed.
Healthcare response and the need for greater clarity
Since July, the NHS has begun to put in place new support and guidance for patients living with Long COVID.
It announced a new five-part action plan and the launch of a network of more than 40 specialist clinics within the coming weeks to support patients.  
While Patient Safety Learning welcomes the plans and progress that has been made since the summer, we believe that NHS England and NHS Improvement still need to make significant improvements in engaging and communicating with patients.
We believe further action is needed in several areas:
- Greater transparency about Long COVID clinics, with information on their proposed locations and a timeframe for their roll-out.
- Confirmation around the timescale for national roll-out of Phase 2 of Your COVID Recovery, which will provide personalised support packages to Long COVID patients referred by their GPs.
- An increase in the amount of patient-focused information being made available. We recently developed a patient information leaflet to help Long COVID patients understand what they can expect from their GP.  It affirms that a person does not need a positive test result to be diagnosed with Long COVID.
Share your thoughts with us
Patient Safety Learning believes there needs to be a clear plan from the NHS for engaging and communicating with Long COVID patients. 
We will continue to push for this and are raising these issues as a stakeholder in the NHS Long COVID taskforce.
Are you a Long COVID patient or a health or care worker with experience in this area?
You can share your insight with us by joining the conversation on the hub.
 National Institute for Health and Care Excellence, Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners, COVID-10 guideline scope: management of long-term effects of COVID-19, 30 October 2020.