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RehabilitationSep 22, 2021

Physiotherapy professors' long Covid study takes first steps with Twitter announcements

Two physiotherapists are running a two-year research project that aims to develop personalised rehabilitation programmes for patients affected by long Covid.

They are Fiona Jones, a professor of rehabilitation research at St George's University of London and Kingston University, and Monica Busse, director of mind, brain and neuroscience trials at Cardiff University.

Their project – which is being funded by a £1.1 million National Institute for Health Research (NIHR) award and is expected to be completed by August 2023 – is based on developing a partnership with people with long Covid in a bid to design and evaluate a ‘package of self-management support personalised to their needs’. This package is expected to include a book, digital resources and a new training package for practitioners.

 

 

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Researchers will work in partnership with people who have long Covid to design resources

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Twitter announcements

In a series of tweets published earlier this week using the hashtag @TheLISTENproj, the team said it was ‘excited’ to announce details about the project’s first steps.

In the first of three stages, researchers will work with people who have, or who have recovered from, long Covid to design self-management resources and training for rehabilitation clinicians.

In the second stage, researchers will run a large randomised control trail involving hundreds of people with long Covid. They will on the impact of receiving support from trained rehab professionals in terms of how people feel and cope with everyday activities.

In the third and final stage, the team look at the delivery of the rehabilitation package from the point of view of service providers in the NHS and elsewhere.

Researchers will also focus on the financial impact of having long Covid, including lost job opportunities.

User experience

Professors Jones and Busse are backed by experts in the fields of statistics, psychology, health economics, implementation science, allied health, primary and pre-hospital care, patient-centred and self-management support.

The team also includes people with lived experience of long Covid, such as Ines de Abreu, a matron in a community neuro-rehabilitation team who has the condition. 

‘We look forward to keeping you updated about the progress of the LISTEN project by posting here,’ one tweet said. ‘Soon we will launch our blog, too, and we will post the link for you here. So keep watching this space!’

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 [Fiona Jones]

What the professors said

Speaking after details of the NIHR funding were released in the summer, Professor Jones, 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.

Commenting in an item on Kingston University London’s website, Professor Jones added: ‘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 Busse, who is coordinating the clinical trial element of the project, said: ‘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.'

The LISTEN project will adapt co-design and training methodology used in Professor Jones’ Bridges self-management programme, which enables practitioners to deliver personalised self-management support to people with complex long-term conditions.

Long Covid facts

It is estimated that long Covid affects at least 10 per cent of individuals with a positive Covid-19 test (this may be an underestimation due to lower testing capacity in the early stage of the pandemic. Office for National Statistics data suggest that nearly one 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. (Source: https://www.kingston.ac.uk/news/article/2536/19-jul-2021-research-into-rehabilitation-of-long-covid-patients-to-be-launched-by-kingston-university-and-st/

For more information on the Twitter thread, visit: https://twitter.com/TheLISTENproj/status/1439931472039845894

To see the NIHR press release, visit: https://www.nihr.ac.uk/news/196-million-awarded-to-new-research-studies-to-help-diagnose-and-treat-long-covid/28205

To find out more about the Bridges self-management programme, visit: https://www.bridgesselfmanagement.org.uk

LISTEN is short for: Long COVID Personalised Self-managemenT support - co-design and EvaluatioN

Author: Ian A McMillan
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