Neuro patients are suffering “avoidable, unnecessary disabilities” through a lack of access to specialist rehabilitation during the COVID-19 pandemic, new findings have revealed.
With the country plunged into lockdown in March, therapists were redeployed into critical support roles across the NHS and tens of thousands of patients across the country saw the cancellation of sessions and appointments crucial to their ongoing recovery, with reports that many regressed due to the lapse in support.
Recent research from the Stroke Association revealed that through the lack of access to therapy resources during the lockdown period, “many could lose out on the opportunity to make their best possible recovery”, which neuro professionals have confirmed extends beyond stroke patients and affects their whole clientele.
Lack of rehabilitation, especially physiotherapy, could increase demand for care for several years, adding huge pressure to already stretched resources, confirmed the research.
Juliet Bouverie, the charity’s chief executive, said: “Despite the tireless efforts of frontline clinicians who have gone to herculean efforts to maintain services under extremely difficult conditions, some treatments still became unavailable and most stroke aftercare ground to a halt. This means more stroke survivors are now living with avoidable, unnecessary disability.”
Neurophysiotherapists have echoed these findings, with the restrictions on their ability to continue their usual support to clients having a potentially long-term impact.
“There was only so much we could all do during that time as NHS services were reprioritised to save lives. Access to therapy resources for many of my clients was massively impacted upon and we are now having to deal with the results of that,” says Deborah Harrison, group clinical lead and specialist neurophysiotherapist at Neural Pathways
“One of my clients, as well as having a brain injury, was due to have a new specialist neuro-orthotic fitted. This has been going on since last November.
“He has had appointments cancelled, we can’t progress his rehab as he isn’t yet able to get up and walk, so he can’t progress his life.
“People can’t progress until the equipment or resources they need become available, and that’s increasingly difficult to achieve as many NHS services are still on hold pending a potential second wave of COVID-19.
“For this client’s situation to have gone on for almost a year would have been unthinkable last November, but these are the circumstances we have to deal with, and that’s just one example.”
To enable a person’s recovery to at least be maintained, neurophysiotherapists are having to turn to a host of alternative measures, reports Deborah.
“I have one client who I do spasticity work with, and with that inevitably comes pain. He used to access a hydrotherapy pool three times a week, but that has been closed for the past six months so we’ve had to look at other ways to manage it, including neuro acupuncture,” she says.
“We have also delivered a huge amount of clinical oversight remotely and will continue to take a ‘remote first’ approach. However, as we have moved further into the pandemic, it is clear that clients are becoming physically worse and harm is occurring without hands-on therapy.
“With a very big gap in being able to see people face to face and usual therapy services still on hold, there is the risk that if people continue to not get the therapy they need, secondary complications can occur.
“This includes things like people getting pressure ulcers and contractures in joints from not being moved enough.
“Without a carefully planned 24-hour posture and positioning plan and other personalised rehab they will probably deteriorate, and that is very difficult to see happen when you are used to being able to help clients on their road to recovery.”
Due to the lack of availability of NHS resources, some patients have resorted to finding private rehabilitation, meaning that people with stroke and other neurological problems are using their own funds to top up their rehabilitation where NHS services are still on hold.
“One particular client has chosen to pay for more private therapy, which is the only way of ensuring they can continue to make progress without their usual NHS rehabilitation” says Deborah.
With COVID-19 cases rising again across the country, and local lockdowns being implemented around the country – with mounting speculation of another full national lockdown being enforced – neuro professionals are having to do all they can to prepare for such a scenario.
“In my team, we prepared quickly but very well for the first lockdown, and developed a comprehensive COVID risk assessment protocol before the restrictions were imposed.
“As we are classed as essential workers and had rapid access to PPE, we were still able to maintain our duty of care to our most clinically vulnerable clients – these were the clients who would have ended up in ITU if we couldn’t carry on seeing them,” she adds.
“Compared to the beginning of the pandemic, rehabilitation teams are far more prepared and can now safely see more clients face to face, with a fully reasoned risk assessment and correct PPE in place.
“We are hopeful that, alongside remote support, we will see the volume of safe face to face therapy resume nationally, allowing people who have missed months’ worth of essential treatment to be get back on with their recovery and back on with life once again.”
Study reveals undetected rare neurodegenerative disorder that looks like Parkinson’s disease
A joint study by the National Neuroscience Institute (NNI) and Singapore General Hospital (SGH) has revealed that patients who have been diagnosed with Parkinson’s disease might actually have NIID instead.
NIID is a disabling neurodegenerative condition due to a gene mutation and has no effective treatment. Symptoms of NIID include dementia, Parkinsonism, poor balance, as well as numbness and weakness in the limbs.
A patient with NIID may or may not experience symptoms, depending on age and stage of disease. The severe form of NIID is usually seen in older patients, where the disease has progressed to an advanced stage.
The team studied more than 2,000 study participants, comprising healthy individuals and those with Parkinson’s disease (PD), over more than a decade. They were surprised to find NIID-causing mutations in those diagnosed with PD.
Dr Ma Dongrui, first author of the study, says: “To our knowledge, this is the first study reporting PD patients with NOTCH2NLC gene mutations as seen in NIID patients. Thankfully, they responded to PD medications better than most PD patients do. This suggests that there must be factors that can influence why some develop PD while many others develop the more severe form of NIID.”
While analysing the NIID gene, the team found a group of healthy participants who had a “milder” form of mutation. Such mutation in the NIID gene could indicate that they are at risk of developing NIID or PD. Since NIID can go undetected, a high index of suspicion may be needed even in PD patients.
Professor Tan Eng King, deputy medical director and director of research, NNI, says: “With what we know now, it might be beneficial for clinicians to be watchful of early cognitive impairment or imaging evidence that may suggest NIID in patients diagnosed with PD. As NIID is caused by a genetic mutation, it also may be worth looking out for family members of PD patients who may show signs of NIID.
“Our findings suggest that many neurodegenerative diseases overlap and may share a common etiology. Finding a common link and uncovering the reason why a similar gene mutation leads to both mild PD and a severe form of NIID can help identify new drugs for these conditions.”
Following this study, the team plans to conduct more studies to better understand the mechanism behind NIID and identify new drugs for this condition.
More research is needed to understand if the broad clinical phenotype of NIID is related to the subtle genetic differences at the NOTCH2NLC gene locus, race or other factors. Long-term follow-up of carriers of the gene mutation with PD phenotype may provide additional clues.
Stroke survivor takes on ambassador role with rehab tech company
Rehab technology firm GripAble has appointed stroke survivor Kate Allatt as an ambassador.
Kate suffered a rare, massive brain stem stroke at the age of 39, and then went on to develop locked-in syndrome. Doctors said she’d never walk, talk or be able to use her arms again.
But the mother of three defied all predictions, and today, she is a credible and trusted peer mentor, global influencer, and voice for stroke and locked-in syndrome survivors.
The internationally published author of three books, including the acclaimed ‘Running Free – Breaking Out from Locked-in Syndrome’, says that her role as GripAble ambassador is founded in partnership and collaboration.
“As GripAble ambassador, I am working closely with the GripAble team, to inspire fellow stroke survivors to be the best version of themselves, and support the occupational and physical therapists and healthcare professionals working with them.
“GripAble is a smart mobile assessment and training device that helps people with weak or weakened movement in their arms and hands after suffering a stroke. I have used and been shown lots of very expensive and inaccessible tech and robotic machines and gizmos that have been developed to support therapists and patients with their rehab, but GripAble is entirely different. It takes down the barriers, is simple to use – including at home – affordable and accessible.
“It adds the fun to rehab and recovery after suffering a stroke and the life changes that go with it. But beyond that, GripAble really cares about the holistic health of stroke survivors and through my role as ambassador, hopes to inspire motivation in every stroke survivor – especially as we know dopamine levels, which control our motivation levels, can be affected after stroke – and encourage more and more peer mentoring.”
Kate adds: “As well as collaborating with the GripAble team, therapists, healthcare professionals and the stroke survivors too, we will be launching a number of initiatives to enhance physical, emotional and mental support. This ‘Stroke Buddy’ campaign will include regular live coaching webchats, where I will talk openly about the wider issues that affect stroke survivors, live Twitter chats, social media groups and forums, and a Stroke Buddy Group for peer mentoring and support from other stroke survivors.
“I know from my own rehabilitation and recovery following a catastrophic stroke, just how hard it is to remain motivated and focussed, and how critical the relationship between survivors and their therapists is to achieving the very best outcomes, so that stroke survivors can be the best versions of themselves, emotionally, mentally and of course physically.
“I am driven by the desire to inform, motivate, signpost and connect stroke survivors to enable them to be the best they can be, and by collaborating with GripAble as its ambassador, I can take this commitment to a whole new level, especially for people affected by weakened arms and hands following a stroke.”
GripAble has been developed over the last seven years in consultation with thousands of occupational and physical therapists and patients across multiple clinical conditions and leading academic institutions including Imperial College London and Imperial Healthcare NHS Trust.
Dr Paul Rinne, CEO and co-founder of GripAble, says: “Kate and GripAble’s aims are totally aligned. There is an obvious connection and shared objectives, visions and goals. Kate’s passion, energy, resilience and drive are compelling and irresistible, and we are motivated by the same thing – helping people to be the best that they can be.
“In particular, our mutual vision is to make rehab tech accessible and fun for the patients and their therapists too. We are keen to learn as much as we can from Kate to feed our hunger for insights and understanding of the emotional and physical challenges of stroke recovery. Kate is very goal-centred, which matches the tech and focus of GripAble, along with our commitment to tracking and recognising even the tiniest progress.
“Studies show that the more repetition and strength training a person performs, the greater their chance of restoring movement, and ultimately their independence,” adds Paul. “Physical rehabilitation is critical for patients to restore quality of life after stroke and other neurological, orthopaedic and paediatric conditions.
“In some senses, the challenge is as much mental as physical. Keeping up with a rehabilitation regime, no matter how willing you are, is a grind. It can seem as though all of that sweat and the understandable tears, may leave you thinking that it’s all for nothing and that the future is bleak. But GripAble really does have the potential to help stroke survivors – and also people living with other neurological conditions – to monitor how even the smallest steps are all contributing to their journey of restored ability.”
Kate adds: “Physical rehabilitation is critical for people to restore quality of life after suffering a stroke. GripAble is at the cutting edge of occupational and physical therapy. A smart mobile assessment and training device that connects to an app, it supports people with loss of movement in their arms and hands to train movement and grip strength that are critical to restoring their independence. At the current time, it also supports therapists who need to engage their patients in rehab remotely.”
GripAble has launched to early adopters, with a predominantly UK-based distribution, with GripAble devices currently in use in both NHS and private hospitals, clinics, and homes.
“GripAble has the unique opportunity to be used by every single person coming into contact with the healthcare system globally, measuring and recording strength from early childhood until end of life care,” adds Paul. “This gives us the ability to not only change the face of physical rehabilitation, but also of healthcare in general.”
Vital rehab spaces being used for storage in Scotland
Patients are missing out on physiotherapy and rehabilitation services because vital spaces are being de-prioritised by Scottish health boards, the Chartered Society of Physiotherapy has warned.
Reports from across Scotland reveal that rehabilitation facilities are being used for storage space and meeting rooms while the pace of re-opening and re-starting services remains slow.
During this second wave of the pandemic, physiotherapy will be critical to Covid-19 rehabilitation. Physiotherapists assist Covid and “Long Covid” patients recovering from fatigue, ongoing respiratory problems, deconditioning and poor mental health. In addition, the closure of rehabilitation services means that many non-Covid patients with long-term conditions have deteriorated, and now require more rehabilitation, alongside the ongoing needs of cardiac, stroke and respiratory referrals in the community.
Despite this huge need, rehabilitation spaces in various health boards are being moved out without relocation plans and gymnasiums are being requisitioned for other purposes such as storage and meeting rooms. In a recent survey, 47% of CSP members in Scotland said reported that a loss of rehabilitation space is why services have been unable to resume. Relocation and redesign is taking place without risk assessments, with poor planning and a lack of consultation.
Kenryck Lloyd-Jones, CSP Public Affairs and Policy Manager for Scotland, said: “The reports we are receiving from across Scotland are deeply concerning. It seems that not only are physiotherapy and rehabilitation services being slow to restart, they are being moved without relocation plans, downgraded or undervalued. We recognise the challenges in health settings and the need to re-organise, but it is essential that rehabilitation services are prioritised.
“Changes require proper consultation, risk assessment and planning. It is critical that the rehabilitation needs of people are not forgotten.”
A number of patient groups are also warning of a lack of investment and undervaluing of rehabilitation. While some rehabilitation is taking place virtually, physiotherapists still need enough space and equipment to run sessions effectively.
The CSP wrote to all regional health boards last month to urge them to prioritise rehabilitation as services are re-started, stating: “The CSP is strongly advising action to address this lag in progress, not least because the post-Covid rehabilitation needs of Scotland’s communities are pressing. Local authorities and Integrated Joint Boards also need to ensure that where rehabilitation is required in community settings, that health professionals can resume services.
“With the publication of the Scottish government’s rehabilitation framework, the emphasis must return to early intervention, reducing hospital admission, early supported discharge and improved outcomes. Musculoskeletal and community rehabilitation services are essential to this.”
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