We are all too accustomed to television images of refugees and asylum seekers. We often hear their stories; of persecution and suffering in their home countries and their struggles to reach the relative safety of the West.
What we do not hear – because it has until now been a largely unexamined problem – is how many of them have suffered traumatic head injuries and have sustained brain damage.
Now, however, a team of medical experts in Glasgow have conducted research among asylum seekers and refugees in the city and have uncovered the problem, which not only adds to the suffering of vulnerable people, but which can also – potentially – harm their chances of a successful asylum application.
The result was a report published in Global Mental Health. The research was conducted using 115 asylum seekers and refugees in Glasgow who had been referred to a community psychological trauma service with moderate to severe mental health problems associated with psychological trauma. Using interpreters where required, the subjects were screened for a history of head injury.
One of the report’s authors, Professor Tom McMillan, explains: “Given their background and the reason why they are seeking
asylum, there’s a likelihood they may have sustained a head injury in a circumstance where it has gone undetected.
“They have not attended hospital, not been detected and on average the head injury was 10 years earlier, so they themselves would not necessarily attribute their current difficulties to brain damage.
He adds: “We had to be careful about going too much into symptom areas because sometimes they were undergoing treatment or were about to undergo treatment for other issues. So, we asked more generally if they thought the head injury had had a long lasting effect.”
Head injuries can result in long term impairments in attention, pre-existing memory and ability to form new memories, word finding and executive function. The Glasgow study revealed similar problems among the refugees. “The kinds of problems were related to cognitive function,” says Prof McMillan.
“Typically people’s memory is poor for new events, for things that have happened recently, and they can’t concentrate or attend as well, while they also can have difficulty with judgement, solving problems and integrating cognitive information.
“Sometimes there can be changes in personality where they can be more irritable, aggressive, more fatigued and tired or just lacking energy and the ability to get up and do things.
“You can see how all of these factors might be difficult for people seeking asylum in the UK who have come here from another country.”
The overall average age of those studied was in the 30s. For those believed to have suffered head injuries, it was about 35; with 59% of the sample being female.
Previous studies had indicated that asylum seekers and refugees are more likely than the general population to have experienced physical assault and injury in their country of origin; and to have been victims of torture, including blows to the head and asphyxiation, which can result in brain damage.
Research revealed that more than three quarters (78%) of Vietnamese ex-political detainees resettled in Boston reported a history of head injury.
The Glasgow study found that the overall prevalence of head injury was 51% and at least 38% of those had a moderate to severe head injury that could cause persisting disability.
The prevalence of head injury of a severity likely to cause persisting disability is estimated to be about 2% in the general population in Western countries. The causes of the original trauma were also different.
“The head injury was certainly different from what you would expect from the general population,’’ says Prof McMillan.
“Among the general population in Glasgow, the most common cause of head injury is fall, then assault, then road tragic accident.
“You would expect an accidental cause, like a fall or a road traffic accident in about 70% of people. Whereas in the asylum seekers it’s the other way around.
“Accidental injuries accounted for a third, with assault in two thirds. The assault was associated with causes you wouldn’t normally find in Western countries – they were domestic violence, torture, violence through sexual trafficking, so a different kind of grouping of causes from what you’d commonly find in the general population.”
One conclusion that might be drawn from this is that, assuming those who make it to the West as refugees and asylum seekers tend to be the fittest and most able, then head injury sufferers among the asylum seekers and refugees would be under-represented and the prevalence of head injury in their home countries would be even greater.
“Logic would tell you that it is,” concedes Prof McMillan, but he points out that many of those suffering head injuries might only have made it to the UK with the help of family members or others.
Another serious potential implication is that the injuries sustained by these people might endanger their chances of getting asylum.
“That’s the hypothesis arising from this study; that they might not be able to form a credible evidence provider because their evidence is unreliable and they can’t remember information that people think they should be able to remember.
“It could be that they had a significant head injury at some point during that time period.” He would like to see a greater awareness of the risk of brain injury in such cases.
He adds: “This could be significant in some cases where an individual may be seen to be being a bit di cult or not remembering things or remembering things differently between interviews.
“Perhaps there should be some consideration as to whether there’s any biological basis to this, like traumatic brain injury.”
Furthermore, head injuries can cause emotional problems which can lead to the breakup of relationships, social isolation and unemployment. This can further complicate the fallout of psychological trauma.
There is also the possibility that clinicians may not be alert to the likelihood of head injuries when recording symptom complaints among vulnerable and often traumatised groups, such as asylum seekers, where there is already a high incidence of mental health problems, including post-traumatic stress disorder and depression.
“At a very basic level, NHS services, and particularly mental health services that deal with asylum seekers and refugees, should be screening for head injury when they are assessing people. Therefore, they could, if necessary, carry out a more detailed assessment and take into account any persisting disability when they are working with them.”
Prof McMillan would also like to see greater liaison between those services which deal with asylum seekers and refugees and the brain injury services which could provide advice.
“I’m not suggesting they should be swamped with referrals but at least they can advise in cases where there might be a concern on how to carry out a screening assessment, a kind of link in the NHS care pathways to brain injury services for any cases that require more detailed investigation.”
People referred onto mental health services would be seen by people qualified to identify brain injury, but those being dealt with at an earlier point in the process could still be identified as potentially having a problem.
“I think just having a link with brain injury services could provide them with some education and some simple screening tools so that, if they had a concern, they could perhaps triage a bit and link through.
“Even these fairly simple contacts could be quite important,” says Prof McMillan. In terms of how screening for head injury might be carried out, he says: “There are some formal tools you can use, but you routinely need to identify whether they’ve been in situations where there have been knocks to the head.
“You’re wanting to know how often this is happening, because it can be fairly mild, but if it’s repeated enough it has a cumulative effect.
“We need to know if it resulted in loss of consciousness and, if so, how long that loss was for and whether they were confused for a time afterwards – and how long that was for. By finding that information you can get a reasonably good idea of how severe the injury was. It can be difficult, especially if somebody was drunk at the time or were tortured and can’t actually remember.”
Now the report has been published, the Glasgow team behind the research is trying to make its findings and implications more widely known both in the UK and in other countries taking in refugees and asylum seekers. It has already made a difference in the city where the research was done.
Prof McMillan says: “In Glasgow the mental health team are now routinely assessing and screening for head injury, so there has been a local impact.”
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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