Published: 17 March 2022
Richard Francis, Head of Research at the Stroke Association, writes about the charity’s new funding partnership with NIHR’s Programme Grants for Applied Research (PGfAR). He explains how together, we’re opening a funding competition for research that can improve rehabilitation and long-term care for stroke survivors.
There is a saying: "if you keep someone alive, then you need to give them a life" Research has led to huge innovations in treatment and care for stroke, and as a result there are more stroke survivors than ever before. But this progress brings new challenges - a stroke is life-changing for survivors, as well as those close to them, and results in unique needs for long-term support.
There are more than 100,000 strokes in the UK each year and 1.3 million people living with the long-term effects of stroke. These figures are only set to increase. We know that stroke survivors do not get the recommended levels of rehabilitation and long term care, and this problem has been made worse by the pandemic.
At the Stroke Association, we led a recent James Lind Alliance (JLA) Priority Setting Partnership (PSP) involving over a thousand people with lived experiences of stroke, alongside professionals working on stroke prevention, diagnosis, care, and rehabilitation. We now know what is most important to stroke survivors, their carers and the professionals who support their recovery, and we need to turn these priorities into action, focusing on rehabilitation and long term care.
Jenny, a stroke survivor involved in the PSP, expressed this very clearly, explaining that the trauma survivors experience requires skilled and empathetic emotional support. That emotional and psychological support underpins how they experience and benefit from physical rehabilitation. For people like Jenny, emotional and psychological support has to be one of our key research priorities moving forward.
Setting research priorities
NIHR and Stroke Association have also been working alongside NHS England on their ‘Demand Signalling’ work to highlight where more research effort and spending is needed to support NHS Long Term Plan targets. NHS England’s new report arrives at a closely aligned set of priorities to those identified by the PSP.
These include managing the hidden effects of stroke, including psychological and emotional support needs, more effective rehabilitation, and better ways to diagnose and treat major strokes. The Demand Signalling report also highlights the need for a deeper understanding of how the complexity of stroke-induced impairments influences stroke survivors’ response to therapy and of how therapies should be adapted when stroke survivors have multiple, complex, ongoing needs.
These two reports provide clear direction for future research investment and activity, and the NIHR continues to work closely with Stroke Association and NHS England to explore commissioning new research addressing the priorities identified through the demand signalling work.
We have a long way to go to ensure stroke services and treatments meet the needs of people affected by stroke. Stroke care involves complex interventions with many different disciplines working together along the care pathway. By partnering with the NIHR, we can support collaborative programmes involving researchers from different disciplines to address the PSP priorities and tackle these challenges.
Deb Lowe, NHS England’s National Clinical Director for Stroke, said: “Stroke is the single largest cause of complex disability in the UK and the effects of stroke are life-changing, often causing physical, communication, cognitive and psychological problems. In the Long Term Plan, the NHS committed to provide a holistic approach to supporting stroke survivors, from improved diagnosis, to better access, cutting edge treatments and innovative rehabilitation - both in hospital and post discharge.
“Through our 20 Integrated Stroke Delivery Networks, we have developed the best possible structure to provide best-practice stroke care, but we know that there is still more to do - especially when it comes to stroke rehabilitation - which is why I fully support this initiative to develop our understanding by funding research into best practice stroke care and I encourage colleagues to submit proposals as part of the funding call.”
Call to action
The NIHR PGfAR scheme provides a unique platform to launch programmes of applied research to address the stroke rehabilitation and long-term care PSP priorities. We are urging the stroke research community to come together to provide real-world solutions to the challenges that stroke survivors face every day. Through collaboration, we can harness the expertise of the stroke research community and ensure funding is targeted to the strongest research proposals with potential to make the biggest impact. Five key areas based on the PSP priorities will be included in this funding competition:
- What is the optimal way to prevent and manage psychological difficulties experienced by stroke survivors?
- How can we best support people to overcome and manage difficulties with cognition after stroke, facilitate independence, and reduce the impact of these difficulties on daily life?
- What are the most effective assessment, support, and rehabilitation approaches for communication difficulties after stroke?
- How should we assess and manage fatigue experienced by stroke survivors?
- How should community stroke services be resourced and organised to provide effective community-based rehabilitation?
We now have an opportunity to fund substantial programmes of applied research to address these priorities. We will be holding a workshop to facilitate the collaborative approach as we are keen to help researchers identify collaborators and act as a sounding board for ideas.
Every five minutes, stroke destroys lives. We're here to help rebuild them – these priorities for rehabilitation and long term care provide us with a roadmap for research that will make the biggest difference to people affected by stroke.
Find out more about the workshops on the Stroke Association website.