One in six people will have a stroke in their lifetime, according to Public Health England, while two thirds of stroke survivors leave hospital with a disability.
The road to recovering lost or damaged functions can be long and arduous; and is likely to involve a cast of healthcare professionals in a range of settings.
Optimising outcomes against the many complexities of post-stroke rehab – plus resource pressures and the disparate nature of some services – is a major UK healthcare challenge.
Stroke Active believes it has the tonic for smoother and more positive journeys from the immediate aftermath of a stroke back towards normality, or the closest possible point.
Its app, named Innovation of the Year Award at the 2019 European Neuro Convention, aims to improve patient self-management, as well as communication among stroke professionals.
It also empowers all parties with a clear set of tasks and supports remote monitoring of the patient’s progress.
Managing director Erika Pearce says: “My father-in-law suffered a severe stroke in April 2017.
“We moved him into a private rehab facility and he’s now recovered to the point where he’s living independently.
“It’s clear to us that without this intensive rehab he wouldn’t be leading the life he is now.
“While the in-patient rehab team were fantastic, they only have a certain amount of resource and the same is true of a lot of community teams.
“Stroke affects over a hundred thousand people in the UK each year and we wanted to tackle some of these long-standing issues.
“These include the need for patient self-management through a clear rehab program, the gap between in-patient and out-patient rehab, the difficulty in finding local therapists with neuro experience, the strain placed on family members and the absence of a readily available multi-disciplinary platform.
“The response thus far has been fantastic.”
Certainly self-management has been identified as an area of concern by the NHS.
In the stroke part of its Long Term Plan, announced in January, it states the need for “more support with self-management and navigation post-stroke for patients and carers”.
The Stroke Association’s landmark State of the Nation paper, meanwhile, points to some of the other issues Stroke Active has in its sights.
It reports that only three out of 10 stroke survivors who need a six month assessment of their health and social care needs receive one.
It also shows that four out of 10 hospitals in England, Wales and Northern Ireland have a shortage of stroke consultants – and that only around half of stroke survivors are discharged from hospital having being assessed for all appropriate therapies and with agreed goals for their rehabilitation.
Of course, the stroke survivor’s family can also face immense challenges – which Stroke Active is also aiming to alleviate.
Stroke Association data shows that 40 per cent of stroke carers feel exhausted, while as many as a third of them receive no emotional support following their loved one’s stroke.
Perhaps the connectedness Stroke Active potentially gives the carers to professionals, as well as the patient, may help to feel better supported.
The patient is able to choose up to two representatives, including family members or carers, to access the app and help to support their rehabilitation.
Users set themselves up as a patient/representative or as a therapist, with two different dashboards for each group. Therapists are required to enter their HCPC number when registering.
Patients or their representatives are given access to a directory of neuro physios, occupational therapists (OTs) and speech and language therapists (SLTs) closest to their postcode.
By pressing ‘Connect’, that patient will appear in the list of pending connection requests on that therapist’s dashboard.
Once connected and after an initial assessment, the therapist can set daily or weekly tasks for the patient to complete.
The patient can tick these off on their ‘Task Manager’ and the whole team can track their progress.
Each patient’s message board allows them and all team members to communicate with each other on that patient’s progress, ask questions and post web link.
“We’ve also included a video function which allows more complex exercises to be recorded and labelled on a patient’s device and played back at their leisure,” says Erika.
Several years of development preceded the launch Stroke Active in January 2019.
“We engaged a third party developer on the project two years ago.
“We spoke to a cross section of patients, family members, neuro physios, OTs and speech and SLTs throughout the development of Stroke Active and continue to do so with the intention of continually improving the platform.
“Stroke Active has been entirely self funded and we placed huge emphasis on GDPR compliance… We are in the process of formally announcing NHS trials with several Trusts.
“The aim of these trials is to quantify the benefits of using Stroke Active through empirical as well as anecdotal evidence.
“We’re engaged with many other national organisations who have been enthusiastic and supportive.
“Aside from the problems we’re already addressing, there may be other ancillary benefits to using Stroke Active.
“We’ll be looking for evidence of this during the NHS Trials too. Patient’s mental health has only recently begun to be discussed.
“Having a support network of qualified therapists and family members who can all respond remotely and efficiently would seem to be helpful.”
Erika believes there is also scope to expand the app beyond stroke care for use with other conditions.
“It’s become clear that the problems we’re trying to address through Stroke Active are common to other conditions requiring neuro-rehab.
“There’s been substantial interest from the field of acquired brain injury.
“Any lack of organisation during the first few months of a brain injury occurs at the worst possible time. We don’t pretend that Stroke Active is for every neuro-rehab patient.
“We’ve tried to make the app as intuitive as possible; my father in law accepts he’s useless with all forms of technology and he finds Stroke Active very easy to use.
“The therapists we’ve spoken to also find the patient dashboard very user friendly.
“Ultimately, the funding pressures on the NHS are significant and the provision of patient care varies dramatically from Trust to Trust.
“Many patients turn to private practitioners for help. Stroke Active can be used by both NHS and private therapists.”
See more at www.strokeactive.com.
More retired rugby players report concussion than any other injury
Concussion is the most common injury among retired rugby athletes, according to new research.
Researchers from Durham University and Auckland University of Technology compared the injuries of retired rugby athletes with retired non-contact athletes.
They found that retired elite rugby athletes reported up to seven times the number of injuries than those who played amateur rugby and non-contact sports, and concussion was the most commonly reported injury, and had the most common recurrence, for both groups of rugby players compared to non-contact athletes.
Among retired rugby athletes, 81 per cent of elite and 76 per cent of amateur players reported at least one concussion, and concussion injury had the highest recurrence.
The rugby athletes, who were all code athletes, which means they played rugby union or rugby league, were also up to 10 times more likely to report experiencing a lasting impact of previous concussion, among other injuries, including back and joint pain.
The researchers concluded that past participation in rugby union and rugby league, particularly at elite level, is linked to a higher risk of cumulative injuries and a continued impact of previous injuries after retiring from the game.
Retired elite rugby code players reported that previous concussions had a negative impact on their current health, the researchers found.
They urge that there should be more efforts to reduce injuries in rugby codes at all levels, given such a high number of concussions.
“The monitoring of injuries at the player level rather than at club level could be one approach to improving the management of injury for individualised player welfare,” the paper, published today in the journal Sports Medicine, states.
“This could include a system by which the individual player’s injury history can be followed as they move across professional club contracts, and specific strength and conditioning and sports therapy strategies prescribed to help prevent recurrence of injury.”
This is the first study to examine total injuries across entire careers of contact sport athletes, according to the researchers, and the reported effects on physical wellbeing post-retirement.
Half of brain injury survivors lost access to rehab
More than half of brain injury survivors have lost access to rehab due to lockdown measures, and fear for their futures, according to research by Headway.
Fifty-seven per cent of people surveyed, who had all sustained their injuries in the last two years, say their access to specialist treatment has been negatively impacted from lockdown measures.
Among those living with the long-term effects of brain injury, two thirds reported that their mental health has deteriorated due to government measures to control the spread of Covid-19, and the same number fear for their futures.
These findings highlight the importance of ensuring those affected by brain injury are provided with appropriate physical, psychological and social rehabilitation, says Headway.
Peter McCabe, the charity’s chief executive of Headway, says the findings are ‘deeply concerning’.
“The first two years following a brain injury are very important in terms of a patient’s long-term prognosis and any delay to receiving specialist rehabilitation can impact their ability to lead an independent life in the future,” he says.
“Of equal concern is the short-term impact of the lockdown on survivors and their families.
“The effects of brain injury, such as problems with memory, a lack of insight or difficulties controlling behaviour and emotions, can mean that survivors face significant challenges in understanding and coping with the necessary safeguards put in place to deal with the pandemic.
“This can lead to conflict with other members of public as a result of not remembering the rules around social distancing, or excess pressure and emotional toil being placed on carers and family members.
“With local authorities under increasing financial pressure, local charities are facing an uphill battle to survive, exacerbating survivors’ fears for the future.
“Unless the government provides local authorities with adequate funding for community-based rehabilitation services, thousands of brain injury survivors and carers will either be left without support or be forced to rely on more costly state-funded care.”
Delays in neurological treatment for seven in 10 patients
More than seven in 10 people with neurological conditions report delays to medical appointments due to Covid-19, according to new research.
This means people with long-term neurological conditions could be missing out on vital tests and treatment, according to the Neurological Alliance.
More than 70 per cent of those who replied to the Neurological Alliance’s survey between 9 and 20 June said their NHS appointments had been delayed, and four in 10 did not know when their appointment would be rescheduled.
Due to the risk of infection and many staff being redeployed, most face-to-face neurology appointments have been delayed or cancelled.
“For some people with a neurological condition,” the Neurological Alliance states, “missing out on the right treatment at the right time can have life-changing consequences.
“For example, advanced drug therapies for Parkinson’s only have a short window during which they can be effective, so some people could already have lost their opportunity to have a life-changing therapy.
“Certain disease modifying treatments for multiple sclerosis, which reduce relapses and slow the progression of the condition, have also been delayed or cancelled in some NHS clinics.”
Without improved capacity across neurological services, the charity warns that people with neurological conditions risk facing further, potentially life-changing, delays.
Many people with neurological conditions were advised to ‘shield’ during the pandemic, due to being high-risk. The government relaxed guidelines around shielding on 5 July, and plan to pause of from 1 August. The report, however, found that people with neurological conditions who were shielding are concerned about the risks of going out more.
Half of respondents reported finding the government’s advice on shielding to be unclear, almost a third had difficulty accessing their normal food supplies and almost a quarter had experienced difficulties getting their regular medication.
Almost one in four respondents reported feeling lonely, and one in 10 felt hopeless.
The Neurological Alliance is urging NHS England to set out plans to ensure an immediate restart of services as soon as it’s safe to do so. The charity is also calling for:
- Specialist neurology staff redeployed to COVID-19 wards to restore staffing in neurology departments to pre-Covid-19 levels
- Adequate support within NHS mental health services to deal with the immediate mental health needs of people with neurological conditions who have been shielding or self-isolating
- Patients discharged prematurely due to COVID-19 to be regularly reviewed to ensure their mobility and motor skills are not deteriorating
Georgina Carr, chief executive of the Neurological Alliance, says: “While health and care professionals have done all they can to retain some contact with people with neurological conditions during this crisis, our survey clearly shows that people with suspected and confirmed neurological conditions are being left in complete limbo while frontline services have been diverted to treat COVID-19 patients.
“This just isn’t acceptable and means thousands of people are not getting the life-changing treatment and support they so desperately need. People with neurological conditions must not be left in the dark any longer.”
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