A new research project, led by a team from St George’s, University of London and Kingston University as well as Cardiff University, has received major funding from the National Institute for Health Research (NIHR) to develop personalised rehabilitation programmes to help patients live well with long Covid.
Led by Professor Fiona Jones, from the Faculty of Health, Social Care and Education at St George’s, University of London and Kingston University, the project will work in partnership with individuals living with long Covid to design and evaluate a package of self-management support personalised to their needs.
This study is one of 15 new research projects across the UK awarded nearly £20 million in total by NIHR to improve diagnosis and treatment of long Covid.
Long Covid has been estimated to affect at least 10% of individuals with a positive Covid-19 test, which may be an underestimation due to lower testing capacity in the early stage of the pandemic*. The latest estimates suggest nearly a million people are living with the condition in the UK**.
Individuals with long Covid experience a wide variety of ongoing problems such as tiredness and difficulty with everyday tasks, meaning they can struggle to return to their former lives. This can then be made worse by uncertainty and a lack of understanding around the diagnosis.
The project will aim to develop a personalised rehabilitation programme that can be delivered by trained practitioners to aid recovery from long Covid. The first stage will be to recruit people living with or recovered from long Covid alongside rehabilitation practitioners, who will co-design a new intervention, expected to include a book, digital resources and a new training package for practitioners.
This will then be followed by a trial phase, where the team intend to recruit more than 550 participants with long Covid and randomly allocate them to an intervention or control group. The control group will receive NHS information already available, while the intervention group will receive the new co-designed resources and up to six coaching sessions from the trained rehabilitation practitioners. The trial will recruit individuals at 24 community sites across London, Wales and the East of England.
The study team will then test the effect of the intervention on how the participants feel and cope with everyday activities in order to assess their recovery. They will also record everyday expenses and loss of work to understand the impact of long Covid and the designed intervention on society and individuals.
This work will use co-design and training methodology developed by the Bridges self-management programme***, which works across healthcare pathways to enable practitioners to deliver personalised self-management support enabling individuals living with complex long-term conditions to live well.
Speaking on the funding, Professor Fiona Jones from St George’s, University of London and Kingston University, said: “Thousands of people in this country are currently suffering from the effects of long Covid, with many people infected in the first wave still experiencing a significant impact on their daily lives. We need people to have access to skilled practitioners that are local to them – which our project intends to deliver.
“Our hope is that wherever you live, if you experience long Covid, you can get access to personalised self-management support, connecting you with a rehabilitation practitioner with deep understanding of the condition.”
Professor Monica Busse from Cardiff University’s Centre for Trials Research, who will be coordinating the clinical trial element of the project, added: “Our project will focus on navigating life after long Covid where the variety of problems and uncertainty around how to manage creates real struggles for those affected individuals.
“We hope our work will lead to new models of care being available in the NHS for the benefit of those living with long Covid across the UK.”