New guidance is being drawn up which aims to reduce inconsistencies in care for those with persistent symptoms of the coronavirus.
Those suffering with so-called long Covid have reported breathlessness, chronic fatigue, brain fog and other complications, months after initially falling ill with the virus.
People have reported persistent symptoms of Covid-19, also including heart, lung and kidney issues, 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.
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 said 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.
“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.”