A major £3.4 million research project has launched to identify the best way to treat and support the one million people in the UK living with long covid.
Led by the University of Leeds, Leeds Community Healthcare NHS Trust and funded by the National Institute for Health Research, the study aims to create a “gold standard” approach for the treatment of long covid.
This research, titled LOCOMOTION will identify best practice in providing services, ensuring people are supported quickly and receive the right treatments from the right healthcare professionals, in their own home, through their GP or at specialist long covid clinics. It will investigate how many people are unable to work due to long covid and look at developing a vocational rehabilitation programme to support them back into employment.
Long covid refers to a set of symptoms that persist for longer than four weeks after contracting coronavirus. Data from the Office for National Statistics shows that in July, an estimated 962,000 people in the UK reported symptoms that had existed for more than four weeks. Nine out of ten of those individuals had symptoms for more than 12 weeks – and four out of ten had experienced symptoms for at least one year.
Long covid has many symptoms including breathlessness, fatigue, and brain fog. It has the potential to deepen health inequalities and is having a disproportionate impact on patients with existing health conditions and people from lower income backgrounds.
The project is jointly led by Dr Manoj Sivan, Associate Professor in the School of Medicine at the University of Leeds, Consultant in Rehabilitation Medicine at Leeds Teaching Hospitals NHS Trust and Leeds Community Healthcare NHS Trust, and Professor Brendan Delaney, a General Practitioner and Chair in Medical Informatics and Decision-Making at Imperial College London. Dr Sivan said: “Long covid is a significant challenge facing the NHS. It is a debilitating condition that has turned the lives of a large group of people upside down, with many unable to work or carry out activities that were possible before they became ill.
“The purpose of this project is to optimise the way we organise services and enable evidence based and cost-effective treatments to be made available to everyone in a timely manner.”
Dr Sivan and the rehabilitation team in Leeds developed the first long covid measure called C19-YRS (Yorkshire Rehabilitation Scale). This scale is now widely used across the NHS. It was designed for patients and clinicians to have a standardised assessment of symptoms and how those symptoms affect a patient’s ability to lead their lives.
Dr Ruth Burnett, Executive Medical Director at Leeds Community Healthcare NHS Trust, said:
“We are absolutely delighted that Leeds has been successful in its bid to lead this research nationally. Thanks to the drive and determination shown by our clinicians, supported by partnership working between ourselves, Leeds Teaching Hospitals and Leeds Clinical Commissioning Group, Leeds has been at the forefront of finding ways to help those suffering with long covid right from the start.
“The service is a fantastic example of all partners in the city working together in the best interests of the community that we serve.”
Professor Delaney said: “The diagnosis and management of long covid is a huge challenge for doctors as it presents with a large array of symptoms which evolve over time and there is potential for missing serious conditions, whether directly related to Covid-19 or not. We need to learn rapidly what works best from the existing services.”
“Imperial College is well placed to lead this work with Leeds, having one of the earliest established long covid services and the capability to conduct research at scale. In North West London researchers have access to a population-wide collection of health data from all GP and hospital sites covering 2.5 million people.”
To identify the best ways to support and treat patients, researchers will investigate experiences of staff and patients at ten NHS sites, which collectively treat over 5,000 patients from a range of cultural and socio-economic backgrounds.
Professor Nick Lemoine, Chair of NIHR’s long covid funding committee and Medical Director of the NIHR Clinical Research Network (CRN), said:
“This package of research will provide much needed hope to people with long-term health problems after Covid-19, accelerating development of new ways to diagnose and treat long COVID, as well as how to configure healthcare services to provide the absolute best care. Together with our earlier round of funding, NIHR has invested millions into research covering the full gamut of causes, mechanisms, diagnosis, treatment and rehabilitation of long COVID.”