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Outward-Looking

Long COVID: Fear and frustration in Britain and beyond




“I don’t feel safe enough to do my job”, says Alison, a nurse who has been suffering from Covid symptoms since she caught the virus at the end of January 2020. These include brain fog, eyesight problems, and breathlessness, and have prevented her from working for the last 9 months.“I’ve contacted MP’s due to my financial situation, I was working for a private company, I get no financial support, I’m reaching out to see what help is available”.


What is Long Covid?

Long COVID guidelines have only recently been defined by the National Institute for Healthcare and Excellence (NICE), outlining the condition “as signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for more than 12 weeks”. A symptoms study, consisting of data from over 4000 COVID sufferers, from King’s College London showed when the data from the study was extrapolated to the UK population, 1 in 45 people would be ill for over 12 weeks or more. According to the British Medical Journal, issues with the respiratory system, the brain, and cardiovascular system are commonplace.


Katie, a university student, caught Covid in November 2020. To this day, she tells me “hours after I exercise, I get a cough, it feels like there’s fluid in my lungs although there isn’t… it’s scary because I don’t know how long it’s going to last, if it’s going to last and if it will affect me in 50 years’ time”.


Seeking medical help with her symptoms back in April 2020, Alison started to piece things together herself. When she told her GP “they didn’t want to know, they weren’t interested, one of them turned around and said, ‘you don’t get chest pains with COVID’. I respect GP’s, but I told this one he needed to go out and do some research”.


Progress in the pursuit of medical attention

The campaign group LongCOVIDsos have been prompting more governmental action around the issue of Long COVID since July 2020, such as commissioning research into the condition and focusing on the economic implications for sufferers, ensuring they have sufficient financial support during their illness. One campaigner and long COVID sufferer, Tom Stayte, highlights “There is also the issue of many people in the past having difficulty to diagnose symptoms, having the suggestion made that the illness is in their head and that it’s a kind of mental condition rather than a physical one. I think we want to make sure that people who are experiencing long COVID symptoms are able to access the right sort of care … It's almost a knowledge gap and we need to empower patients to be able to interact with physicians in the right way, but the physicians also need to understand how to interpret the information they are getting from the patient”.


In October 2020, NHS England rolled out the Your COVID recovery website, aimed at providing information on the effects of COVID, as well as offering tips on daily wellbeing. In November, the NHS introduced long COVID assessment centres, taking referrals from GP’s, and tackling debilitating mental and physical health issues. Tony Mcleod, a senior commissioner at St Helens Clinical commissioning group, providing healthcare services across Cheshire, Chester, and Merseyside, is currently leading the rollout of more long COVID assessment hubs in his commissioning group. “We’ve never had a service [for long COVID] so we didn’t know what the capacity was going to be, and we didn’t know how many people were out there because we never really defined long COVID before. In terms of demographics, it can hit anybody, from people who are 80 or children and we actually have an under 17’s service. One of the reasons we set these services up is to get an estimate of how many people we would be dealing with”. The number of these Long covid hubs are growing too, as Mr Mcleod states the NHS has requested across England and Wales, boroughs and cities create their own assessment hubs. Regarding the process of how these clinics work, he tells me “The vast majority of localities, including ours, are up and GPs have already handed referrals to us, having assessed the type of services patients need, ranging from information on the Your COVID recovery website to more acute services”. 69 Long COVID clinics are now running in England, with none in Scotland, Wales and Northern Ireland. Scotland’s national clinical director has stated he does not envision specialist clinics to be introduced, anticipating that GPs would be able to help these patients.


Looking towards the future of the health crisis

The All Party Parliamentary Group has estimated that around 390,000 people are living with the debilitating effects of Covid-19, and have described long COVID, in a letter to the prime minister, as the “hidden health crisis of the pandemic''. In late February 2021, the government pledged £18.5 million to tackle Long COVID via research to better understand the causes, symptoms, and treatments of the disease. For now, the advent of assessment centres and the healthy funding pot seem to be heading the right way in England’s strife with the disease. However the battle is far from over, with almost 400,000 patients suffering and under 100 Long covid hubs so far in the country, it is clear there will be an overwhelming demand for these services, and for the time being, not enough availability for sufferers of this crippling disease to access the support they so desperately need.


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