Stroke is the leading cause of long-term neurological disability worldwide.1,2 One in four adults will experience a stroke and closer to one in three will have some form of acquired brain injury (including stroke, traumatic brain injury, brain tumours).
By Nick Ward, Professor of Clinical Neurology and Neurorehabilitation at Queen Square
Two-thirds of people experiencing stroke will be under the age of 70,3 which tells us that stroke is no longer solely a disease of the elderly. Treatment in the first few hours after stroke has improved dramatically over recent decades, where the focus is on delivery of reperfusion therapies and high-quality medical care.
Soon after, thoughts should turn to promoting recovery of movement and communication, not to mention the unseen symptoms of cognitive impairment, emotional lability, fatigue and sensory loss, but here services are struggling. Rehabilitation usually starts in hospital and continues in dedicated rehabilitation centres or at home.
The UK National Clinical Guidelines4 state that rehabilitation should be ‘needs-led’ not ‘time-limited’, but everyone who works in the field knows that is not possible because of lack of resources, in particular staffing levels. Patients can be discharged after several months, even though they may have potential to improve much further.
Work from the Stroke Association tells us that consequently nearly half of all people with stroke feel abandoned at the point of discharge from hospital, and this number likely rises as people are discharged from community teams who don’t have the capacity to keep on treating.
In early 2020, we knew that the Covid-19 pandemic was going to make this situation worse. We anticipated that people with stroke would be discharged from hospital earlier with even less chance of face-to-face visits from community rehabilitation teams.
Our response at The National Hospital for Neurology and Neurosurgery in Queen Square was to create a new way for our clinical teams to engage with people recently suffering from stroke. The programme, NROL, was commissioned and supported by the SameYou charity.
In brief, NROL stands for Neurorehabilitation Online, a group-based online telerehabilitation initiative allowing 1-2 clinicians to treat groups of anywhere between 2-15 patients at a time. We set up a wide range of groups to reflect the recommendations of NHS England – physical fitness, gait and balance, upper limb, SLT, cognitive rehab, mood groups, fatigue groups, carer groups and stroke/brain injury education groups.
NROL was effective in helping recovery5, but also gave people a sense of hope, of not being abandoned, and of belonging to something supportive (including peer-to-peer support). After the six-month pilot study at Queen Square, NROL is being trialled in East Lancashire under the leadership of Professor Louise Connell.
NROL started out as something to fill in during the Covid pandemic, but we have realised that this approach could counter, at least partially, the chronic shortage of rehabilitation services throughout the country. We believe that, in combination with conventional community rehabilitation, NROL could help to increase the amount of rehabilitation people receive after stroke, link them into crucial peer-to-peer support networks and provide some much needed to hope to improve long term recovery.
Nick Ward, Professor of Clinical Neurology and Neurorehabilitation at Queen Square
References
1. Licher, S. et al. Lifetime risk of common neurological diseases in the elderly population. J Neurol Neurosurg Psychiatry 90, 148–156 (2019).
2. Patel, A. et al. Estimated societal costs of stroke in the UK based on a discrete event simulation. Age Ageing 49, 270–276 (2020).
3. Feigin, V. L. et al. World Stroke Organization (WSO): Global Stroke Fact Sheet 2022. Int J Stroke 17, 18–29 (2022).
4. National Clinical Guideline for Stroke for the UK and Ireland. https://www.strokeguideline.org/.
5. Beare, B., Doogan, C. E., Douglass-Kirk, P., Leff, A. P. & Ward, N. Neuro-Rehabilitation OnLine (N-ROL): description and evaluation of a group-based telerehabilitation programme for acquired brain injury. J Neurol Neurosurg Psychiatry 92, 1354–1355 (2021).
