New guidance to prevent ‘inconsistent care’ for long Covid patients

Coronavirus treatment
Coronavirus treatment - (Copyright PA Wire)
18:48pm, Mon 05 Oct 2020
CBAD8A00-D2B9-4E0E-ADDF-D0366C357A34 Created with sketchtool. E9A4AA46-7DC3-48B8-9CE2-D75274FB8967 Created with sketchtool. 65CCAE04-4748-4D0F-8696-A91D8EB3E7DC Created with sketchtool.

New guidance is being drawn up which aims to reduce inconsistencies in care for patients who have long Covid.

Those suffering with so-called long Covid have reported breathlessness, chronic fatigue, brain fog and other complications including issues with the heart, lungs, kidneys and musculoskeletal problems – months after initially falling ill with the virus.

People have reported persistent symptoms of Covid-19 regardless of how ill they were initially or whether they were admitted to hospital.

Now the National Institute for Health and Care Excellence (Nice) and the Scottish Intercollegiate Guidelines Network (Sign) have said that new guidance is being drawn up to help guide the care for people who suffer long-term complications.

It is vital that those with lived experience of long Covid be involved with the development of these guidelines

The health bodies will work with the Royal College of GPs to draw up the guidelines, which will be published later this year.

They said that there could be as many as 60,000 people in the UK who probably have long Covid.

Claire Hastie, founder of the Long Covid Support Group which has more than 24,000 followers on Facebook, welcomed the move but told the PA news agency that it was “vital” that patients were involved in the creation of the guidelines.

Ms Hastie, who has lived with long Covid for many months, said: “We welcome the news that Nice and Sign will work with the Royal College of General Practitioners to develop much-needed guidelines to support people with long Covid, and the acknowledgement that people are in urgent need of help for their debilitating and alarming symptoms, regardless of whether they have a positive test result or were admitted to hospital.

“It is vital that those with lived experience of long Covid be involved with the development of these guidelines.

“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.

“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.

There is growing evidence to suggest Covid-19 is a multi-system disease

“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.”

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: “National guidance in this emerging field will help to align services with the needs of people who may be at risk of receiving inconsistent care.

“The guideline will support health and care services with recommendations on monitoring, testing, treatment options and the provision of advice and support for those who are experiencing these long-term effects.”

It comes after a leading academic warned that the effects of long Covid could turn out to be a bigger public health problem than excess deaths.

A report from the Tony Blair Institute for Global Change is recommending that the Government highlight the issue in awareness campaigns.

In the report’s foreword, Tim Spector, professor of genetic epidemiology at King’s College London, said that in the first few months of the pandemic, little attention was paid to the infected population who were not sick enough to go to hospital, who made up 99% of cases.

He said it turned out that Covid-19 was not just a bad flu, but in many people it behaved more like an autoimmune disease, affecting multiple systems in the body.

Prof Spector said the app launched in March by his group at King’s College London and the health-science company ZOE to capture the wider range of symptoms people were experiencing received data from more than four million people.

Researchers learned that “a great many people didn’t get better after two weeks as expected”, Prof Spector said, adding: “We kept following them and found out that a significant number still had problems after months.

“This is the other side of Covid: the long-haulers that could turn out to be a bigger public-health problem than excess deaths from Covid-19, which mainly affect the susceptible elderly.”

The report said long Covid seems rare in those under 18 and over 65, with higher prevalence among those of working age.

The median age of those affected is 45 and it affects women more than men.

Sign up to our newsletter