Dundee-based GP Scott Jamieson explains his experience in diagnosing patients with Long COVID and his contributions toward the creation of the now updated Long COVID clinical guideline, which will play a key role in assisting doctors to diagnose and treat Long COVID.

In general practice we are very accustomed to managing uncertainty. We teach GP trainees that this is not only when we don’t know immediately know what a diagnosis is, nor how to define it, but also when we are unsure how to treat it.

The key to managing uncertainty is sharing decision making. Where there is uncertainty, there is nothing more important than to share management. Demonstrating empathy to understand the condition from the patient’s perspective is key. But, with COVID-19 disease, we were in new territory.

In the UK alone, the ONS reports 1.2 million people as of November 2021 who have reported symptoms of Long COVID ongoing for more than 4 weeks after COVID-19 infection. Of these, over 65% report it impacts on day-to-day activities with 55% reporting fatigue as their most common symptom.

As we come to have a better understanding of the symptoms ongoing after COVID-19 infection, it has become apparent that the new or continued symptoms is a separate condition all together. The term ‘Long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID-19.

The importance of the guideline

It is important in unknown waters to endeavour to chart a path and update that course as evidence emerges to inform the best route. In Long COVID, as with any severe illness, GPs will continue to have a critical role in navigating uncertainty and excluding other causes of symptoms.

Symptoms ongoing after COVID-19 disease are fairly indiscriminate in different patients I see. There are some groups more likely to be affected – females, more deprived backgrounds, even healthcare workers – but those differences are not great.

Any person getting COVID-19 be those with mild or with severe symptoms in hospital can develop ongoing symptoms thereafter. It is likely this isn’t a ‘syndrome’ per se with a unifying mechanism. Each symptom potentially has a different cause, and with a lack of clear direction in how to manage the symptoms, I utilise ‘the COVID-19 rapid guideline: managing the long-term effects of COVID-19’, to help navigate the challenges of each symptom. People have had to stop their usual work, reduced normal daily activities or struggled more with their mental health: it’s not easy but thankfully for most the recovery is progressive and steady.

A unified approach

Collaborating with my Royal College of General Practitioners (RCGP) counterparts in London, as the RCGP Scotland Executive Officer (Quality Improvement) and sitting on the Scottish Intercollegiate Guidelines Network (SIGN) Council, we were mindful that there were moves both north and south of the border to consider a guideline on managing the breadth of ongoing symptoms after COVID-19 infection.

However, with a lack of strong evidence on effective treatments, these guidelines were likely to heavily depend upon consensus for treatments.

In the UK, we are lucky to have both SIGN and the National Institute for Health and Care Excellence (NICE) as expert organisations in guideline development.

As such, with my RCGP counterpart in England approaching NICE, I reached out to SIGN and the Clinical Cell at Scottish Government to suggest it would be best to have a single guideline to work from.

All parties agreed and the guideline developed from there. I continue to work alongside RCGP and SIGN in reviewing the guideline and I’m particularly excited to see the patient booklet to go alongside, which I know will be welcomed by patients and their family and friends.

It has been a pleasure to be involved in the collaboration of SIGN, RCGP and NICE to create a unified ‘living’ guideline on Long COVID. Beyond this, an implementation note was developed by the  Scottish Government to support NHS boards to introduce the guideline effectively. We have a long way to go to ensure that we manage the uncertainties and find an effective path forward for those with Long COVID, but the revised guideline, the implementation note and the patient booklet are important steps in the right direction.

Visit SIGN’s website to access the revised guideline and patient booklet.

Scott Jamieson is a GP within NHS Tayside and a member of RCGP Scotland’s Scottish Council