EXCLUSIVE: Over 1000 patients in Suffolk and North East Essex referred to Long Covid clinic
The regional NHS integrated care system launched the specialist service in December 2020
We can reveal that 1065 patients in Suffolk and North East Essex have been referred into the regional NHS Integrated Care Partnership's Long Covid Assessment Service (SNELCAS), since it opened in December 2020.
Figures from the Office for National Statistics show that around 2 per cent of the total population in the UK were experiencing self-reported Long Covid. A patient is diagnosed as having the condition if they show symptoms arising from a Covif-19 infection for more than twelve weeks.
Susan Fowler is the co-clinical lead for SNELCAS. She says the condition has a broad and varied range of symptoms making any diagnosis less than straightforward: "Up to this point over 200 symptoms have been found related to long Covid. The most common ones we see are ongoing breathlessness, extreme fatigue and also brain fog, affecting memory, not being able to find the right words when you're speaking and being unable remembering things that you've done.
"Some people are mentioning aches and pains in muscles and joints and others are finding that their digestion is affected so they're feeling discomfort in their stomachs. And the list goes on."
Long Covid has also exhibited some anomalous characteristics.
"One of the messages to get across about the condition is that your likelihood of getting it is not related to how ill you were during the original infection.
"You could have been mildly ill at the time of infection and then several weeks later you can feel these other symptoms start to develop and feel worse", Ms Fowler explains.
Another aspect of the condition that has left clinicians surprised is it seems to be impacting patients across all age groups. She says, "We're seeing fewer of the older age groups presenting symptoms, it's much more in the younger and middle-aged populations that its presenting.
"So I think the assumption that it would be an older population being affected, is not being borne out in what we're seeing in the clinics."
These and the fact that long Covid is a relatively new condition has made treating it very challenging. "We were tasked to set up the service for long Covid very rapidly, with short notice and obviously without a lot of expertise because we've never seen this before.
"However, all of the symptoms we are seeing with long Covid we have seen as presenting symptoms for other conditions, for which we do have treatment strategies.
So, we're harnessing those previous skills and then repurposing them for long Covid", Ms Fowler says.
Recent ONS figures also suggest that patients who had taken both doses of the Covid-19 vaccine two weeks before testing positive for the condition were 41 per cent less likely to contract Long Covid twelve weeks later.
This was ascertained, however, using data for the period ending 30 November 2021. So the impact of the more resistant Omicron variant on long Covid remains unknown.
Ms Fowler says, "It's a bit early to assess what impact vaccination is going to have on long Covid, but all of the scientific evidence so far is that you do reduce your chances of developing long Covid by being vaccinated. If you are at less risk of getting Covid-19 itself then you're less risk of getting long Covid."
The clinic is currently treating 791 patients for the condition. Ms Fowler says the true number of people with Long Covid could however be significantly higher.
"It's possible that not everyone is aware about long Covid and therefore is not seeking referral into the clinics because we're definitely not seeing a broad spread (across different demographics).
"In other words, we're seeing more women come to the clinic than men and we're not seeing the the same prevalence in ethnic minorities as we would expect given the the number of COVID cases that have been recorded.
"Some people will be hitting 12 weeks, and then feeling like they're gradually improving and then self-managing. Other people won't be accessing the service because either they don't have access to your GP or they don't know that it exists.
"So it's very probable that we are not seeing the entire long Covid population, but exactly what the size of the unmet need is, could be really difficult to judge."
Given this underreporting of cases and Covid-19 related restrictions coming to an end, what does the long-term picture for treating the condition look like?
"The prognosis for long Covid is really difficult. We've now got patients who are coming up to two years post infection who are still heavily debilitated by their symptoms.
"Having said that, I wouldn't want people to worry and not have hope for recovery with long Covid because in the main we're seeing is a gradual slow improvement of symptoms with the right management.
"But it's clear from what we're also seeing with the early 2020 patients that for some people these symptoms are going on for some time. So I think we need to be aware of the fact that long Covid is not going anywhere in the immediate future, whatever happens to the infection rate in the general population."