Two women talking, one of them is in a wheelchair
Credit: Marcus Aurelius

Experiencing lack of energy and tiredness after a stroke is very common and can be one of the most difficult and upsetting problems that people have to manage. Improving management of post-stroke fatigue has been identified as a high priority by NHS England.

The research programme has been awarded £2 million by the National Institute for Health and Care Research (NIHR) and Stroke Association. It builds on an existing intervention developed at the University of Bournemouth to help patients with multiple sclerosis, called FACETS. This includes elements of cognitive behavioural therapy, education and energy effectiveness techniques.

The Birmingham team will work together with people affected by stroke, caregivers, clinicians and other experts to adapt FACETS for the stroke community and web-based delivery. Importantly, the team will include people who are often under-represented in research (for example, people with stroke-related impairments and ethnic minority groups).

“We don’t know the best way to manage fatigue after stroke, and many people don’t receive any information or support,” explained lead investigator, Dr Grace Turner. “With around 50 per cent of people who have had a stroke experiencing fatigue, this is clearly an important area to tackle.

“Fatigue self-management programmes have been shown to be effective in managing fatigue in other conditions and we hope it could be a solution for post-stroke fatigue that can be implemented within current NHS care pathways.”

Fatigue self-management programmes have been shown to be effective in managing fatigue in other conditions and we hope it could be a solution for post-stroke fatigue that can be implemented within current NHS care pathways.

Dr Grace Turner, School of Sport, Exercise and Rehabilitation Sciences

The team will partner with Cognitant, a healthcare technology company who specialise in co-production of patient education programmes and digital support packages.

Dr Tim Ringrose, CEO and Founder of Cognitant, said: "We are delighted to be collaborating with the Universities of Birmingham, Cambridge and Bournemouth on this crucial initiative. This project aims to make a tangible difference to the lives of stroke survivors, providing them with the tools and support they need to self-manage their fatigue. Through collaboration with patients and caregivers, we are looking forward to creating a comprehensive self-management program which will represent a significant step forward in post-stroke care.”

Over the next five years the investigators will work with people who have had a stroke to understand their experiences of fatigue management, and co-design a fatigue management programme. This will lead to a large trial to test the interventions among more than 600 people who have experienced post-stroke fatigue.

The goal is to empower stroke survivors to better manage their fatigue, enabling them to engage in activities that bring joy, value and meaning to their lives.