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.”
Rehab groups call for pandemic-fuelled change
An influential group of rehab organisations has issued a set of recommendations to the Health and Social Care Select Committee (HSC) aout managing rehab amid COVID-19.
While the healthcare system rightly initially focused on saving lives and stopping the spread of the virus, there is an array of patients that remain with unmet needs which The Community Rehab Alliance, a consortium of 22 charities and professional bodies – has submitted a joint response addressing.
Having identified that many COVID-19 survivors are being discharged without any rehabilitation plan in place, the report gives a series of recommendations for services that support rehab across a range of conditions to aid getting the country back on its feet and back to work.
It has been argued that this is a time to learn from the pandemic to shape rehabilitation services for the future, as well as addressing the weaknesses within the arguably under-developed part of the current healthcare system.
Rehabilitation is the process of assessment, treatment and management of a patient’s condition, within which they are supported to reach their maximum potential for physical, cognitive, social and physical participation in society and quality of living. Rehab needs to empower people to recover and build up resilience at their own pace which, for COVID-19 survivors is wide-ranging.
While there are some excellent examples of regional and local responses and pathway development, overall planning and guidance on COVID-19-related rehabilitation appears inconsistent and disjointed. The Rehab alliances recommends a national, strategic approach including integrated care systems carrying out audits, agreement on common rehab needs assessment frameworks and building up multi-disciplinary community rehab teams with the skills and staff required.
By redeploying the workforce – permanent and temporary – back into the community, it is more possible and likely to deliver commitments that will increase step-down rehab capacity.
During the crisis, it hasn’t been only coronavirus patients who have required healthcare. Throughout the pandemic, people are still having falls and fractures, strokes, heart attacks, preparing for cancer treatment or recovering from it, having accidents and illnesses that result in spinal cord and brain injuries and having exacerbations and acute episodes related to long term conditions, including cardiovascular, respiratory, musculoskeletal, rheumatology and neurological.
In all these situations, early, timely and sufficiently intensive rehabilitation will often be critical to people’s long-term recovery and the level of wellbeing and independence people regain or maintain. For older people timely rehabilitation is key to support people to prevent decline, optimise independence, prevent hospital admissions and the need for long-term care. Rehabilitation enables people (including key workers) to return to work and participate in society after lockdown.
During the pandemic, some essential and time-urgent elements of rehabilitation have continued, while supporting shielding and social distancing.
Local managers need consistent advice and time to assess when rehabilitation interventions are essential and on how community rehabilitation can recommence fully. National support and guidance for the provision of telehealth and digital rehabilitation options where appropriate is necessary, with professionals bodies needing to play a critical role in providing guidance on how practice might be adapted from face-to-face rehab from outpatients centres to home, as well as finding alternatives to clinic-based appointments and services.
As services recommence, there should be a positive risk approach, supporting ongoing guidance on social distancing, testing for professionals and carers, PPE at the appropriate level, and prioritisation on the phasing in of aspects of services.
The pandemic is shining a light on the poor state of community rehabilitation provision. While there are many excellent services, access to rehabilitation is a postcode lottery, with services being under- resourced and under-developed for decades. Planning and commissioning is inconsistent, and there is significant variation in standards.
There must be a plan to meet the wave of pent-up demand for health and care services that have been delayed due to the coronavirus outbreak, as well as meeting demand for additional mental health services.
As part of this plan, the Rehab Alliance recommends that there is a strategy to expand both community rehabilitation provision and, where necessary, retain planned additional capacity for step-down (bedded) rehabilitation units.
Through the forthcoming NHS People Plan, deliver an expanded rehabilitation workforce, including allied health professionals with advanced practice skills, support workers and care assistant trained to add capacity, sports and exercise professionals, postural stability instructors, coaches working in the voluntary sector and rehabilitation medicine doctors.
Because COVID-19 is a multi-systemic condition, with significant physical and mental health consequences, it illustrates very well the continued importance of shifting an approach to rehabilitation away from one that is based on neat medical specialisms and condition silos.
The experience of Covid-19 recovery should provide an impetus to adopting a personalised, multi-condition, biopsychosocial approach that can respond to the needs of increasing numbers of people having multiple conditions impacted by multiple factors. This approach needs to support greater inclusion of vulnerable and hard-to-reach groups, who have the worst health outcomes and experience barriers to services. This includes people with learning difficulties, dementia and serious mental illness.
Services need to make reasonable adjustments to make them accessible – for example, adapting communication.
The pandemic has necessitated a shift at scale to online management systems in the community and tele-health. As services get back to normal, it is highly likely, this could be continued to make this a much more prominent option for people in how they access and receive services.
This must be appropriate, evidence based and result in increase choice and access, not in greater marginalization of some groups and increased health inequality.
Learning from the experience of the pandemic should be captured by robust research and shared so that evidence underpins the future shape of rehabilitation. These should include the perceptions of the patients, staff and carers as well as their clinical effectiveness.
So while there is a certain amount of support available, the necessity to address and reform the rehabilitation services available throughout the UK is significant and immediate.
The Rehab Alliance, which includes industry bodies and charities such as Age UK, the Royal College of Psychiatrists and the UK Acquired Brain Injury Forum, is working to see a change across all rehab services offered nationwide to combat the challenges faced as a result of COVID-19 and strengthen those survivors in the best possible way, setting a new standard and practice in services that will better serve residents across the board.
A 20-year adventure in rehab robotics
Tech pioneer Hocoma has long been pushing the boundaries of innovation in rehab. Now marking its 20th anniversary, it plans to step up its ability to drive better patient outcomes, as Deborah Johnson reports.
Back in 2000, the world was a very different place, particularly in terms of technology.
Many of the high-tech innovations we now accept as standard were not yet launched and healthcare remained one of the most traditional markets around.
Yet into this climate, Hocoma launched the prototype of its pioneering Lokomat, a robotic medical device which provides repetitive and highly physiological gait training to patients, enabling even some of the most impaired to learn to walk again.
While it has gone on to become one of the world’s leading robotic medical devices, in 2000, it was a significant and controversial disruption into a long- established and relatively low-tech rehab scene.
Clemens Muller, global head of clinical and scientific affairs at Hocoma, says: “Twenty years ago, gait rehabilitation was completely different.
Therapists had to physically move patients’ legs – a manual task that can be very tiring and requires huge effort, particularly when you are doing it many times a day.”
Gery Colombo, a trained electrical engineer with an interest in neural rehabilitation, founded Hocoma alongside Peter Hostettler, an economist, and Matthias Jörg, a biomedical engineer.
“The founders realised the need for a change to this way of doing things and to find a better solution,” says Clemens.
“They wanted to establish a venture which could use their specialist knowledge and go in a particular direction, with a purpose and intention.
“The goal was to change rehab as it was known. This was absolutely new; in fact so new and innovative that the world of healthcare rehabilitation wasn’t really ready for it.
“This was a challenging phase but one in which Hocoma needed to be really entrepreneurial with a very clear vision and focus and to keep on going.
“It did take a little while until it was accepted and it was a long journey for the founders.”
Despite the initial challenges of launching such a high- tech product, over the past two decades, the Lokomat has become one of the most widely used gait rehabilitation devices in the world.
It has helped to set an industry standard in rehab products for people with brain injury, stroke and other neurological disorders.
Hocoma recently installed its 1,000th Lokomat.
But it has also built on the success of its flagship product by launching an array of other devices.
Among its product portfolio is the Erigo, which assists with patient mobilisation in the earliest stages of rehabilitation; its Armeo range, which supports the recovery of arm and hand function; and its Valedo products that targets back pain.
The business is headquartered in Switzerland but works in 27 countries worldwide – and believes it is changing the lives of people in clinics across the globe.
Clemens says: “I think there are three drivers behind innovation in healthcare – social aspect, which includes demographic changes and the shift from using products which are based on evidence rather than just experience; the technology changes in the world as a whole; and the clinical changes, which are moving on quickly and have changed dramatically to encompass robotics and exploit the previously unused potential of this way of therapy.
“These drivers have changed, and continue to change, the landscape of the world in which we work. Hocoma has always been at the front pushing the boundaries and helping to change the resistance there was at the beginning of our journey.
“When you went to a rehab conference 15 or 20 years ago, there was only one tech provider there, which was us.
“But if you compare that to now, there can be anything up to 20 companies at an event, including start-ups that are working in technology fields like robotics or sensor-based equipment, offering products for inpatients and outpatients, for acute needs. So there is a huge selection now available.
“There is also the demand from the market to integrate technology. The key for us has always been how to integrate this technology into a routine of therapy to use it to its full potential.
“It is about not only being engineering-driven but understanding how to use that to make a bridge to the rehab world and understand the link to the human world – bringing the know-how and capability and opening that up for the needs of patients.
“As a market, we do need to do more homework in that area.
“Lots of clinics already have integrated the technology they are using very successfully, and with our products it makes us proud to see how the patient is being supported to the highest level.
“I have seen this happening in many clinics around the world and it gives me goosebumps to see how happy patients are with how it is working for them. It also makes a huge difference to the work and demands placed on the therapist, and that is something that also makes us so proud.”
Now celebrating its 20th anniversary, Hocoma’s ambition for the future is to continue changing lives and reaching out to millions more around the world.
A strategic move in achieving this came in 2017 when Hocoma joined its now-parent company DIH – bringing it under the same roof as other rehab technology developers including Motek.
“We have always been a pioneer since we were established so we will continue this with new and better solutions to benefit people’s lives.
“Our focus is on bringing solutions which are innovative, high quality, effective and efficient.
“The future for us will of course be affected by the healthcare market in general. We are seeing a rapid demographic change around the world and this will mean a change in the healthcare approach.
“There will be a search for solutions.
“With the huge move towards digitalisation through the Industrial Revolution 4.0, there will be a greater role played by artificial intelligence and virtual reality.
We will continue to develop as a business so we can continue to be at the front of what is happening.
“Traditionally, we have come up with a new innovation every year, which could be a new product launch, or else new features or a new version of an existing product, but we are always developing what we have to make it the best it can be.
“We are always learning by doing and have a network of research and academic partners all over the world and this enables us to come up with great products which deliver solutions.
“We are planning heavily in our development team and are continuing to develop our launch plan and product road map.
“We hope the global coronavirus outbreak and the shutdown we are seeing around the world does not affect our plans too much in the short-term, but we will have to see how that develops and adapt to that as we need to.”
As a business which has helped to change traditional practices and approaches in rehab globally, one area in which Hocoma would like to push for further change is in widening patient access to its own products, and other high-tech solutions.
“At the moment, it is not a given that all patients and all clinics will have access to our products. Of course technology has its price, but we need to address that at some point.
“We need to work with clinics and insurance companies to try and find a solution here and to shape the future of rehabilitation.
“It is important to find optimal solutions which increase access to technology, to improve the quality of rehab, while looking at the cost effectiveness of such products.
“Over the next five to 10 years, there are going to be more stroke, cerebral palsy and traumatic brain injury patients who are needing innovative solutions and our goal is to develop more solutions which will benefit them and the therapists.
“When money and costs are involved it can often be a long journey, but we believe if all stakeholders got together to find a way of best dealing with this, together we could deliver the best rehab to patients, and this is something we would like to be involved in delivering.”
Nutrition and its unsung role in stroke recovery
Food and nutrition support is the fuel that can drive post-stroke rehab in many different ways, as Emily Stuart, a dietitian at Wiltshire Farm Foods, explains.
The work of dietitians in post-stroke rehab is heavily built on relationships. First and foremost, we must build up a good relationship with the patient and their loved ones at an immensely difficult time for them.
Where the patient has dysphagia (swallowing difficulties), for example, they may suddenly have been advised by a Speech and Language Therapist to switch to a completely different texture of food, and potentially fluid, from what they’ve known throughout their life.
Whether it’s pureed, minced or soft and bite sized, this is obviously a huge shift for somebody used to eating regularly textured food.
Our role is to support them in this change while ensuring they’re meeting the nutritional requirements necessary to help them with their rehabilitation.
Our work is frequently underpinned by the principles of ‘food first’ – an approach to treating inadequate nutrition and unintentional weight loss via nourishing foods and drink.
For each stroke patient, where able, we strive to maintain an oral diet for as long as possible before, in some cases, having to supplement with or rely on oral nutritional supplements (ONS) and/or enteral tube feeding.
Good nutrition after stroke matters for several important reasons, not least because it has a proven impact in shortening the length of hospital stay (LOS) and improving patient outcomes.
Numerous studies from around the world have evidenced the correlation between nutrition and faster discharges and better outcomes.
For example, researchers at the University of Western Ontario (Finestone et al, 1996) investigated associations between the nutritional status of inpatient rehab unit stroke patients and LOS and functional outcome.
It found a significant relationship between LOS and overall malnutrition and identified malnutrition as the most potentially modifiable variable relating to LOS and functional outcome.
It concluded: “Close attention to nutrition status may help to optimise stroke patients’ rehab potential and use of health care resources.”
A more general study, involving 324 adult surgical patients in Ethiopia (Abrha et al, 2016) found that “nutritional status” was one of three indicators for LOS in hospital, alongside duration of the disease and history of surgery.
There are multiple reasons why good nutrition is vitally important post-stroke which perhaps contribute to its effect in shortening LOS and boosting progress in rehab.
Of course, it helps to maintain energy levels and muscle mass and supports a healthy immune system in the recovery period; but also supports the individual’s wellbeing and mental health.
Helping patients to eat in a way that is as close to normality as possible maintains that connection with something they’ve always done, at a time of great change in their life.
There is also a social element. If the individual can maintain eating with other people, that can be incredibly helpful for their morale and outlook.
As well as forging relationships with patients and the people in their lives, dietitians must also work closely with fellow members of the multidisciplinary team (MDT).
Among all of the interventions that make up the collective effort of the MDT, the dietitian is the voice which speaks up for the value of nutrition.
Although others in my field may have had a different experience, I have always felt that this voice is listened to and respected in stroke rehab.
Where it is not can perhaps be partly attributed to the fact that we dietitians are a rarer breed in rehab than physiotherapists and occupational therapists, for example.
Also, we might work with the patient less frequently than some other rehab professionals. We may see the individual a few times a week or even once per week depending on the complexity, while a physio working with a stroke patient could be having sessions with them every day. Therefore we may be less visible in certain settings.
But from my point of view over several years of working on stroke wards, nutrition as a factor in improving outcomes has never been marginalised.
This has been enabled through continuous and close liaison with other members of the MDT, and practicing in an empathetic and evidence-based way. Having a full view and understanding of the rehab schedule allows the dietitian to adapt the person’s eating pattern to it.
For instance, if the patient is on a physio-intensive rehab timetable, this could mean providing small, frequent meals, snacks and drinks rather than focusing on their standard meal pattern. Patients may find eating larger meals too daunting and tiring, whilst they may manage better with smaller portions. Care must be taken to ensure that these smaller portions are nourishing and well accepted by the patient. For those patients unable to eat orally, this may mean adapting their enteral tube feeding regime to ensure they don’t miss out on valuable nutrition during their physical rehab sessions.
So, while other MDT members are regularly updating us on the rehab regime, we are maintaining focus on the importance of nutrition and how it could support the patient.
An important development around stroke in recent years, meanwhile, is the roll-out of the International Dysphagia Diet Standardisation Initiative (IDDSI).
This is a global standard for the use of texture modified foods and thickened fluids in dysphagia.
The IDDSI framework has eight levels each with standardised descriptors and testing methods that support consistent production and easy testing of thickened liquids and texture modified foods.
This helps to shape our research and development at Wiltshire Farm Foods as we continue creating a wider choice for patients.
We work tirelessly to support dining with dignity, which means that when people have modified food, their meal looks and tastes as close to the non-modified alternative as possible.
Being able to enjoy food and sitting down for a meal with friends and loved ones are hugely important parts of life; and needn’t be given up due to a stroke or other health challenge.
Emily Stuart is a dietitian at Wiltshire Farm Foods, which delivers meals to UK households, care homes and healthcare settings, including neuro-rehab facilities and wards.
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