Since the pandemic hit, people with long-term symptoms of Covid-19 have faced hurdles in getting the right after-care and support.
Months after contracting the illness, these so-called ‘long-haulers’ still struggle with issues like breathlessness, fatigue and brain fog. In some cases, scans have shown damage to organs including the heart, lungs and kidneys.
Now, new guidance is being drawn up, which aims to reduce inconsistencies in care for patients with the issue, dubbed ‘long Covid’.
The National Institute for Health and Care Excellence (Nice) and the Scottish Intercollegiate Guidelines Network (Sign) is working with the Royal College of GPs to create the guidelines, which will be published later this year.
Paul Chrisp, director of the Centre for Guidelines at Nice, said: “There is growing evidence to suggest Covid-19 is a multi-system disease that for many people involves persistent symptoms with longer-term impacts on their health.
“It is important, therefore, that people requiring ongoing support and treatment are identified quickly and are supported by the NHS throughout every stage of their journey.
“We also want to ensure that clinicians have clear guidance on how best to support patients struggling with this newly emerging disease.”
Roberta James, programme lead for Sign, said the guidance will include recommendations on monitoring, testing, treatment options and the provision of advice and support for those who are experiencing long-term effects.
What actually is long Covid?
Long Covid isn’t a medical term, but it’s used to describe the long-tail of symptoms some people experience after becoming sick with Covid-19.
There’s limited data on it, but the Covid-19 Symptom Study found one in 10 are reporting a longer tail of symptoms, exceeding the suggested two-week recovery time. Around 5% of people experience symptoms for months.
Earlier in September, The BMJ hosted an online webinar on the diagnosis, management, and prognosis of the illness. Nisreen Alwan, associate professor in public health at the University of Southampton, who has personal experience of long Covid, said a common feature is the ”relapsing, remitting nature” of the illness, “where you feel as though you’ve recovered, then it hits you back”.
Data from the Covid-19 Symptom Study showed people with mild cases of the disease were more likely to have a wide range of symptoms that come and go over an extended period – and these people are often flying under the radar because they’re not in hospital.
Some patients, who were previously healthy and active, have been left using wheelchairs or forced to move back in with their parents due to being unable to return to work and financially sustain themselves.
What symptoms do people with long Covid experience?
Most people experience “profound fatigue”. Other symptoms include a cough, breathlessness, muscle and body aches, chest heaviness or pressure, skin rashes, palpitations, fever, headache, diarrhoea, and pins and needles.
The all-party parliamentary group on coronavirus has heard from hundreds of people who have suffered continuing health problems due to Covid-19. They identified 16 common symptoms of long Covid experienced by the people they spoke to. These include:
Lasting breathing problems
Arrhythmia (a problem with the rate or rhythm of the heartbeat)
Tachycardia (where the heart beats more than 100 times per minute)
Cognitive problems - memory loss, brain fog, confusion
Who is impacted?
Long Covid seems rare in those under 18 and over 65, with higher prevalence among those of working age, according to a report from the Tony Blair Institute for Global Change. The median age of those affected is 45 years old, and it affects women more than men. It’s unclear why this is.
Tim Spector, professor of genetic epidemiology at King’s College London, who runs the Covid Symptom Study, noticed that people who had a persistent cough, hoarse voice, headache, diarrhoea, skipped meals, and shortness of breath in the first week of Covid are “two to three times more likely” to get longer term symptoms.
How long does it last?
The answer is: we don’t know. For some people, symptoms are slowly getting better. But it’s taking time – and those with long Covid are often worried about overdoing it because it can set them back in their recovery.
One rehabilitation consultant based in the UK estimates that for up to a million people, the after-effects of the virus could last for months, maybe even years.
Dr Manoj Sivan, associate clinical professor at the University of Leeds and a consultant in rehabilitation medicine in NHS Trusts, said: “Most [infected by the virus] will have experienced a mild illness but a sizeable minority, up to one million, will have after-effects that will last for many months and possibly years.”
Previous outbreaks of Spanish flu, SARS and Ebola have shown up to a third of survivors can suffer from long-term problems, particularly chronic fatigue, which has implications on family life, work and health economy.
Why are the new guidelines important?
Just this week, Prof Tim Spector warned that the effects of long Covid could be a bigger public health problem than excess deaths from the virus. And as it stands, there’s no uniform guidance for treating long Covid, which means people struggling with symptoms are receiving a broad range of care.
Most of the people HuffPost UK has spoken to since the start of the pandemic said they were unhappy with the care they received from GPs, some of whom brushed off their concerns as anxiety, or simply told them they couldn’t help.
Specialist long Covid clinics were supposed to be set up to support those with the illness following an announcement from Hancock in July, however a BBC investigation found fewer than 12% of 86 NHS care commissioning groups who responded to a request for comment said they were running such services.
Claire Hastie, founder of the Long Covid Support Group, which has more than 24,000 members on Facebook, told PA Media it’s “vital” patients are involved in the creation of the new guidelines.
“The guidelines cannot come soon enough”
Hastie, who has lived with long Covid for many months, said: “The 24,000 members of our Long Covid Support Group include medics and academics who would be well placed to contribute, and it is crucial that those with direct experience of the diverse symptoms and potential risk factors of long Covid are invited to do so.”
She added: “The guidelines cannot come soon enough. Too many of our members continue to be told by their GPs that their symptoms are caused by anxiety, yet research has confirmed that even those with mild initial symptoms can sustain organ damage.
“Many of our members are bedridden or housebound for months, and many are unable to work. Early intervention may well have led to very different outcomes. There is an urgent need for multidisciplinary Covid clinics to be commissioned around the country, accessible to those with long Covid, regardless of test or hospitalisation status.”