After over 45 years in the spinal cord injury (SCI) field, Wagih El Masri is well placed to prescribe what’s needed to improve treatment of the condition; especially in Britain, where the Egyptian-born consultant has trained and worked since 1971.
He is former chairman of the British Association of Spinal Cord Injury Specialists (BASCIS), ex-president of the International Spinal Cord Society and has advised the World Health Organisation on SCIs.
Other achievements include fundraising £4.5m to rebuild the Midland Centre for Spinal Injuries, 136 publications and receiving commendations from the House of Lords for his spinal injuries work.
He was also the last doctor trained by Sir Ludwig Guttmann, the legendary pioneer of the Paralympics and spinal injury centres.
When he suggests ways that SCI could be better managed in the UK, therefore, he speaks with genuine authority built up through years of experience; and NHS decision-makers should perhaps take note, amid increasing annual spinal injury numbers.
Given a hypothetical pot of millions by NR Times to improve the treatment of SCI, his priorities would not only be to pump funds into emerging technologies or drug development.
In fact, at the very top of his agenda would be to invest in something far more basic – beds.
“Although the incidence of new injuries is small at 10 to 15 per million per year, I estimate that the prevalence of SCI has almost trebled in the last 30 years. Yet there hasn’t been a single bed for spinal injury patients added to the national stock in that time,” he says.
Some 40,000 people in the UK are living with an SCI, according to the Back Up Trust, with 1,000 people newly injured each year.
Globally, between 250,000 and 500,000 people per year injure their spinal cord. Such numbers have contributed to a creaking system in the UK, El Masri believes.
“Acutely injured patients and those with long-term paralysis who develop medical complications can no longer be admitted to spinal injury centres as quickly as they could in the past as they are almost always full.
“Patients are therefore spending weeks or months in hospitals or trauma centres which, although well geared to keeping patients alive, don’t have the necessary resources to meet the complex needs of these patients.
“They lack the full complement of trained healthcare professionals with the necessary knowledge, expertise and skills. The right equipment, processes and environment required to meet SCI needs and the challenges are also lacking.
“Although few patients die, a significant number develop complications that are preventable by the time they are admitted to a spinal injury centre, which in turn increases hospitalisation levels.”
As El Masri explains, these complications can be wide ranging, given the spinal cord’s role as the highway of traffic between the brain and all bodily systems.
“Damage causes poor communication or absence of communication between the brain and the various systems of the body. This not only leads to paralysis but also causes a multi-system malfunction affecting almost every system of the body.
“Each malfunctioning system adds to disability and remains vulnerable to further complications unless the patient fully recovers. Many of these complications are a risk to life and a potential source of a range of short and long-term problems. They can cause neurological deterioration and prevent neurological recovery.”
In many cases, patients lose the ability to feel pain, making diagnosis challenging for clinicians looking for signs and symptoms they may have been taught at medical school.
To prevent spinal injuries escalating into a multitude of possible complications – and to maximise recovery from them – El Masri considers ‘active physiological conservative management’ (APCM) as the optimum approach for patients.
From the early hours of the injury, this involves simultaneous scrupulous care of the injured spine and the effects of the injury on the respiratory, cardiovascular, urinary, gastrointestinal, dermatological, sexual and reproductive functions. Ideally, says El Masri, this is carried out in spinal injury centres where there is a critical mass of expertise and skills to deal with the spectrum of complex issues.
Unlike many hospitals and trauma centres, the spinal injury centres also have the sheer numbers of SCI cases to maintain their expertise and hone their skills.
“With traditional APCM of the injury and its wide-ranging effects in spinal injury centres, most patients make some degree of neurological recovery and a significant number regain the ability to walk.
“The great majority of those who did not recover to walk, nevertheless recovered enough to be able to live dignified, productive, enjoyable and o en competitive lives free of pain for decades following their discharge from the centres.
“Unfortunately the restricted bed capacity in the NHS spinal injury centres and the very limited capacity of a safety net for these patients in the private sector have, in my experience, resulted in a vicious circle of problems that have negatively affected both quality and cost of treatment.
“Over the last two decades, we have also witnessed the increasing fragmentation of the service with patients being operated in general hospitals before being transferred to spinal injury centres – or to a rehabilitation centre before reaching a spinal injury centre.
“This is despite the fact that almost all complications can be prevented in spinal injury centres and most patients make a good neurological recovery.
“Surprisingly neither the added human cost nor the monetary cost of such fragmentation leading to the deterioration of outcomes has to-date attracted interest or attention.
“ One criticism of APCM among some rehab professionals is that patients are required to spend four to six weeks lying down in a ‘recumbent’ state until full spinal cord reflex activity returns. This period is essential, however, according to El Masri.
“Recumbence ensures rest to injured tissue and prevents hypotension, a drop in vital capacity, drop in oxygen saturation, pneumonia, generalised sepsis from pressure sores or urinary infections, all of which can cause neurological deterioration or prevent neurological recovery. Rest to injured tissues until natural healing is achieved ensures a pain-free, almost fully flexible spine in the short, medium and long term.
“This pain free flexibility of the spine is required to achieve the best level of independence in personal care, hygiene and activities of daily living. Other purposes are to minimise the risk of pressure sores when skin perfusion is most vulnerable because of the absence of sympathetic drive.
“Moreover, during the period of spinal shock, nursing procedures such as assisted coughing, pressure relief, intermittent catheterisation, bladder and bowel care and management of incontinence, can all be carried out more effectively and safely in patients who are recumbent than in those sitting in a wheelchair.”
A major source of pressure on capacity in the UK is the growing number of injuries among older people. Looking after the country’s ageing population is one of the biggest challenges facing the NHS today.
Like so many areas of healthcare, spinal injury treatment faces its own battle in adapting to the gradual upward trajectory of life expectancy.
“We are seeing more and more elderly patients sustaining all sorts of falls. Many UK homes have narrow, steep and potentially dangerous staircases, which don’t help.
“Also, as soon as the sun comes out, increasingly active octogenarians decide to clean the gutters or x the roof. Some patients continue to cycle while in their sixties and seventies and are involved in collisions.”
Statistically, males are most at risk of spinal cord injury at 70+ and also in young adulthood (20-29 years). For females 60+ is a when most injuries occur, as well as in adolescence (15-19).
Studies report male-to-female ratios of up to 4:1 among adults. The World Health Organisation puts mortality risk at its highest in the first year after injury and remains high compared to the general population.
People with SCI are two to five times more likely to die prematurely than people without. With such high stakes facing people at the severe end of the scale, the clamour for the next breakthrough that could restore functions and preserve life is understandably strong.
Yet all too often patients are left disappointed, says El Masri. “There are many exciting experiments and research projects aimed at improving the neurological outcome of SCI. These are to be commended and encouraged.
“But evidence of equality or indeed superiority in all relevant outcomes including cost-efficiency of any new treatment over the traditional APCM treatment is essential if real progress is to be made and resources are not to be wasted.
“Unfortunately in 46 years of working with the condition, I haven’t seen anything that produces better neurological outcomes than APCM for the majority of the patients.
“It creates a great deal of unhappiness and frustration for patients when, every few months, they read in the media that someone has discovered the next miracle cure for spinal injury. People have gone to other countries for stem cell treatment or access to new equipment, only to come back at best, as well as they were before.
“It’s understandable that people will do whatever it takes, if they are paralysed. But solutions that are often experimental are portrayed as being the answer and the patients are not well versed in the field enough to be able to see them for what they are.
“Patients in the first few years after their injury are the most vulnerable to this. Patients who are five or six years down the tend to have adjusted and don’t swallow these claims.”
Of course, there is plenty of ground-breaking work underway to encourage spinal injury patients and their families. Nanotechnology, stem cells, sophisticated orthotic devices and brain computer interfaces are just some of the areas that could improve the outlook for SCI cases in future .
For now, though, El Masri believes there is no evidence that any SCI interventions deliver equal or superior outcomes to APCM.
“If a patient presents to a spinal injury centre within 48 hours of injury with no flicker of movement in their legs, but can feel pinpricks in their seating area, they have a 75 per cent chance of walking again with APCM.
“Patients who present with more than a flicker of movement will do even better. The great majority of patients with less neurological sparing on presentation when treated with APCM will improve neurologically but not necessarily walk.
“Unless you can manage every system of the body affected by the spinal cord damage – as well as is done through APCM – such neurological recovery may not occur.”
El Masri’s stoic belief in APCM comes from years of working with the approach and seeing its results, while also witnessing numerous false dawns of supposed cures. Yet, one underlying factor in the UK continues to hinder its ability to affect change in some patients; attitudes towards post-injury surgery.
Patients with intact neurology but a biomechanically unstable spine can bene t from surgical stabilisation of the spine, enabling them to be discharged from hospital within a few days of surgery.
Surgical decompression of the spinal cord is also common. In the backdrop, there is a widely-held belief that early surgery of patients with traumatic SCI has advantageous outcomes over late surgery.
This has fuelled the assumption that early surgery must also give better outcomes than APCM. As El Masri noted in a white paper published earlier this year, consequently, most patients with traumatic SCI are surgically managed before transfer to the spinal injury centre.
This is despite limited evidence of the equality or superiority of outcomes, or of cost benefits, over APCM.
He says: “Surgery is necessary in some cases. The majority of the spinal injury centres have the surgical skills in their host hospital. They are able to manage patients who have been surgically treated while ensuring the simultaneous management of the range of effects of cord damage. This prevents complications and maximises neurological recovery.”
A recent Cochrane review states that “the current evidence is insufficient to enable the author to comment on the bene ts or harms of spinal fixation surgery in patients with traumatic SCI”.
APCM’s results, meanwhile, are irrespective of the mechanism of injury, biomechanical instability or the presence of cord compression.
El Masri urges more research to test whether the role of early surgery after SCI can match or eclipse the outcomes of APCM, to justify how commonly it is currently being carried out.
“The current standard of care is surgery, perhaps on the back of the emergence of CT and MRI scans, which enabled us to see things we couldn’t previously. Clinicians without the experience of the APCM or of its outcomes who see spinal canal encroachment or compression, understandably assume that these things are harmful to neurological function. Over time, the great majority have continued to operate on this assumption, rather than evidenced assertions.
“The assumptions are logical but, if science didn’t challenge logic, we’d be stuck in the 18th Century. By all means, if people who undergo early surgery do better than they were expected to with APCM, then continue, but in my experience, they don’t. We need more evidence to support both options.
“Until we establish what works best for the individual patient, we need a safety network of beds with supportive t-for-purpose resources to manage the patient holistically, humanely and cost effectively. Regardless of which organisations take responsibility for this extra capacity, it must be managed ethically and follow good governance.”
A final item on El Masri’s hypothetical SCI shopping list is funding for more collaborative studies into exactly what happens in the first few hours after injury.
“We also need to know more about why spinal cord tissue does not regenerate, unlike every other tissue of the body,” he says.
Making the shift from victim to survivor
After having a stroke two years ago at the age of 39, former international swimmer Craig Pankhurst founded the charity Stroke of Luck to support stroke survivors through activity and exercise. Jessica Brown reports.
“Stroke survivors are in one of two places – they either see themselves as a victim, with a not very positive outlook,” Pankhurst says.
“Or they see their stroke as a bump in the road, but that no one will stop them from having a fulfilled life, just one that’s different to the one they were leading before.
“We put in a halfway line to move people from the victim to survivor mentality.”
Pankhurst wanted to build the charity’s website to enable interaction between stroke survivors and experts in neuropsychology and personal trainers trained to work with special population groups.
When the coronavirus pandemic hit the UK in March, Pankhurst decided to do live sessions on social media, where he brought in guests and spoke about his experience and the charity he’s set up – and says he got good interaction with viewers.
His efforts caught the attention of the World Stroke Organisation, which partnered with Pankhurst to create videos for stroke survivors for what they can do to aid their recovery safely at home, with the help of specialist physiotherapists.
The videos are uploaded by both Stroke of Luck and the World Stroke Organisation.
“I spoke to the World Stroke Organisation over a number of weeks and we agreed to collaborate to create story-specific exercise and activity videos for stroke survivors, to start releasing over 12 weeks, to see if they get good engagement.
“Then we’ll carry on, and do some more,” he says.
The videos are now organised into a library, colour-coordinated into red, amber and green, depending on the viewer’s ability. The library also includes specific videos for carers.
The man who couldn’t see numbers
The unusual case of a man who can’t see numbers has led researchers to argue that the brain can process things without a person being aware of what they’re looking at.
Researchers from Johns Hopkins University studied a 60-year-old man known as RFS, who has a rare degenerative brain disease that prevents him from seeing numbers two to nine.
He would describe seeing one of these numbers as a tangle of black lines that changed every time he looked at it. He had otherwise normal vision, and had no problem identifying letters and other symbols.
The problem would happen before he knew which number he was looking at, which meant his brain had to at least know that numbers were in the same category before something could then go wrong; study author Mike McCloskey tells NR Times.
“It didn’t matter how we presented digits to him, they were always distorted,” says McCloskey, a researcher in the Cognitive Science Department at Johns Hopkins University.
The researchers didn’t know what they were looking for when they started working with RFS, as this specific pattern has never been recorded before. The closest recorded cases are of patients who see distorted faces.
The researchers, whose findings were published in the journal, ‘Proceedings of the National Academy of Sciences,’ also found that RFS couldn’t recognise anything placed near or on top of a number.
They recorded RFS’s brainwaves while he looked at a number with a face embedded on it, and found that his brain detected the face, even though he was unaware of it.
“In one experiment, we showed him a big digit with a face on top of it and recorded EEG signals to see how his brain responded to the face.
“Even though he couldn’t see the face at all, we could pick up a response in the brain 170 milliseconds after the face was presented.
“We saw a perfectly normal brain response to the face, which told us his brain unconsciously identified the face as a face, even though he wasn’t aware of it at all.”
In another experiment, they put words next to the numbers and told him a target word. When he saw the target word, his brain had a bigger response even though he said he couldn’t see the word. They also did tests where they placed a number in front of RFS and asked him to guess what a number was, to test implicit knowledge.
“Sometimes, blind people say they can’t see a light, but can often point to it accurately when forced to make a guess,” McCloskey says.
“We did that with him and saw absolutely no indication he had any implicit knowledge. He couldn’t tell us if numbers were the same or different, odd or even – yet the EEG showed his brain was responding.
The reason it could just be numbers that are affected, he says, is because evidence suggests the brain treats categories of things differently.
“Furniture, fruit and vegetables, for example, may be treated separately, so it’s possible for some areas to be affected and some not.”
The findings demonstrated that the complex processing needed to detect words, numbers and other visual stimuli isn’t enough to make a person aware of what they’re seeing.
“We can draw conclusions about what’s necessary for you to be aware of what you’re seeing. You’d think that, if the brain has done enough work on something to know it’s a face or a particular word, you’d be aware of it.
“These results tell us the brain can do an awful lot of processing on something you’re looking at without you being aware of it at all,” McCloskey says.
“Something else needs to happen after the brain has identified what it’s looking at before you become aware of it at all. ”
And the reason these findings apply to everyone else is because the researchers assumed RFS’s brain was the same as anyone else’s, except for this one thing that went wrong.
“In order to become aware of something, you have to do more than processing to allow you to identify what you see – we think this is true for everyone.”
As for RFS, who was a geological engineer, the story has a happy ending.
“Because RFS couldn’t see regular digits, this was a real problem for him. We created a new set of symbols for him for digits, to see if he could use those,” McCloskey says, as well as a calculator on his phone using the digits.
“He learned them very easily – we wondered if they’d get distorted for him but fortunately, they didn’t. He says he’s been using the symbols ever since – he uses them in his daily life and stayed in his job two years longer than he would’ve otherwise, because of them.”
“Assume brain injury” after domestic violence, researcher urges
Domestic violence survivors in hospital should automatically be tested for traumatic brain injury (TBI) because they, and doctors, may not be aware of the symptoms.
That is according to researcher Jonathan Lifshitz, director of the Translational Neurotrauma Research Programme at the University of Arizona’s college of medicine.
When a patient goes to the doctor with a cough, they’re tested for numerous diseases to rule them out, but with intimate partner violence (IPV), Lifshitz says, we should “flip the script”.
He tells NR Times: “If the individual doesn’t have encyclopaedic knowledge of what TBI is, they may not offer all the symptoms up to their healthcare provider.”
Similarly, the brain injury itself may prevent the patient from being able to detect their symptoms.
Instead, practitioners should suspect that victims of IPV have a head injury, so they can be tested.
“If we tested all people experiencing intimate partner violence for TBI, and are able to screen them using objective tests, we’re going to have far fewer people who experienced intimate partner violence and go untreated,” he says.
In one study, Lifshitz found that 62 per cent of people subject to IPV and diagnosed with TBI were unaware of their TBI when they sought treatment.
While it’s a challenge to determine that someone has TBI, the risk of missing something, Lifshitz says, is much greater. And while increased testing would incur more cost, due to additional testing, Lifshitz says it would save money.
“An individual may be able to hold down a job better, be less dependent on services and won’t need healthcare services as much in the long run,” he says.
Lifshitz is involved in the Maricopa County Collaboration on Concussion from Domestic Violence (MC3DV), a county-wide collaboration in Arizona. It aims to increase the suspicion of head injury by analysing health data for patterns and problems that can be targeted with a county-wide approach.
It educates police officers to recognise symptoms, social workers to better identify abusive relationships, emergency services to profile forensic evidence and clinical partners to assess and treat symptoms of TBI and concussion.
Also, prosecutors through the Maricopa Country attorney’s office are supported in being able to build their case against the assailant; while scientists and process developers also help to bring everything together.
Meanwhile, social workers and nurses are educated on the signs and symptoms of TBI, proposing an objective measure where head injury is implied.
Hospitals are a key area of focus for MC3DV, where one challenge is rebuilding trust between medical practitioners and patients who have previously suffered discrimination, and as a result have a lack of trust.
“It would be easier to implement this change in one crisis shelter or emergency department, when we have the opportunity to regulate and control the organisation we’re working with and we can put in new policies and procedures,” Lifshitz says.
“When trying to coordinate multiple systems in multiple organisations, it’s much more challenging.
“While everyone is receptive to the topic, the problem is having enough resources to do it.”
MC3DV is also hoping to replicate state-wide efforts made in 2012 to better detect evidence of strangulation.
As a result, Maricopa County prosecutors attributed the rise in domestic violence prosecution and decrease in domestic violence deaths to this change.
“Arizona recently changed the way the legal system deals with strangulation, in terms of how it sees evidence,” Lifshitz says.
“Prosecution is much more rapid and severe; it’s unburdened the legal system because many more cases are starting as guilty.”
Lifshitz hopes better testing and evidence gathering will act as a deterrent for abusers, and provide additional motivation for victims to step forward, although, he concedes, psychological, emotional and financial controls an intimate partner has over their victim complicates this scenario.
“A patient wanting to seek treatment is very different from the ability to seek treatment,” he says.
Lifshitz hopes there will be some real changes to come out of the research programme.
“I’ve always needed a bigger social driving force to keep me motivated. It’s unconscionable to know about this and not do anything about it.
“This programme helps to bridge the gap between social work, police work and biomedical research, to attack this problem from multiple angles.
“The majority of the work we do is stepping back, looking at what healthcare data we might have, and asking very specific questions.
“We sit around the table not necessarily with the smartest people, but with the most passionate people. It’s not any one person doing the work, but relying on a community of providers to support the victims and warn abusers.”
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