People living with a brain injury or neurological condition should have more access to employment than ever before.
But experts in the field paint a very different picture; in which individuals are struggling to find employment, withdrawing from work all together and experiencing discrimination.
In July 2019, the Neurological Alliance published the most comprehensive survey undertaken of people living with neurological conditions.
It found that one in three respondents have been discriminated against as a result of their condition, and almost a third (29 per cent) have had their contract of employment terminated.
The report came a week after the Scottish National Party MP, Martyn Day, called on the UK government to address the employability gap between those living with an acquired brain injury (ABI) and the rest of the population in parliament.
In Scotland – where it is estimated that ABI is the most significant cause of disablement for people of working age – only around 40 per cent of working-age disabled adults are in employment, compared with more than 80 per cent of those without a disability.
Since the introduction of the Equality Act 2010, those who are disabled should have more access to paid work than ever, yet the disability employment gap remains high and disabled people continue to be paid less on average than the general population, says the Neurological Alliance report. Employment discrimination appears to be rife, despite the legislation.
“People with a brain injury experience discrimination in all areas of their lives and work, sadly, is one of them,” says occupational psychologist Suzanne Guest, who has helped hundreds of people with neurological conditions back into employment, through her support service, Work in Mind.
The group helps individuals who have suffered a brain injury to find meaningful employment, either with their previous employer, or through supporting them to find new work or undertake volunteering.
The recent findings come as no surprise to Suzanne. She has worked with clients who have been dismissed on competency grounds, as well as those who have felt forced to resign themselves because the workplace hasn’t been tolerable for them.
One of the key provisions of the Equality Act is that employers are legally obliged to make ‘reasonable adjustments’ for employees.
However, in Suzanne’s experience, some employers have been reluctant out of concern that it would be discriminating against other members of staff.
“If it’s things like getting a desk or a special chair, they’re happy for that, but something like restructuring someone’s breaks, or giving them a bit of feedback, that doesn’t seem to be as well-received,” she says.
Often, individuals don’t want to put themselves through the turmoil of an employment tribunal, which would be required to establish whether those adjustments had been put in place and the employer was breaching the Act.
Also, until recently, many couldn’t afford it, with fees of up to £1,200 for such cases, which were ruled unlawful in 2017.
What really saddens Suzanne though, is that many of her clients have felt discriminated against before they’ve even made it into the workplace.
“A lot of my clients will volunteer before they go back to work, and I’ve seen more discrimination in the voluntary sector,” she says.
One of Suzanne’s clients was stopped from volunteering because of his epilepsy.
Another, whose employer was initially supportive after his accident, returned to work on a voluntary basis but was dismissed within a month because he was struggling to relearn his job.
“These are people who either wanted to have some meaningful occupation of their time or to build themselves back up to getting into paid work,” she says.
“Those bars are hitting them before they’ve even got to the workplace, because the charities aren’t being supportive either.”
Suzanne would like to see work taken more seriously as an important element of rehabilitation.
“It would be good to see work classed as part of the neuro-rehab package. I see work as being the last step to gaining independence. Often the NHS does a great job of saving your life – and of course it has to prioritise daily living skills – but work doesn’t tend to be covered in statutory services.”
This is something David Martin, chief executive of multiple sclerosis charity the MS Trust, would agree with. The trust has found that many people diagnosed with the condition are advised by health workers to give up work much earlier than they would like, or need to.
“We’ve heard time and time again that when people are diagnosed they’re encouraged by health professionals to give up or reign back on work,” David says.
Figures show that only 36 per cent of individuals with MS are in full-time employment, compared to the national average of 75 per cent.
“Some of that might be down to the discrimination mentioned in the Neurological Alliance report, but I think some of it is down to the attitude of the health services as well,” he says.
“I’ve got anecdotal evidence that there are people in the [NHS] who have encouraged people with MS to stop working, or cut down.
“That can sometimes be good advice but certainly, in our experience, there are many people with MS who are actually stopping or cutting back on work much earlier than they need to.
“For some people, the condition might impact them so significantly and severely that they are simply not able to work and, yes, you do need to preserve your energy, but it’s that health and wellbeing aspect.
“Your brain activation is going to be better if you’re doing some sort of work, if you’re able to.”
It’s not only the individuals themselves who are losing out, David says: “From an employers’ point of view there’s a lot of wasted resources. A lot of people with skills, energy and passion are not getting the fulfilment of work and they’re not giving something back to society.”
As well as providing information online, the MS Trust facilitates a Facebook group of 10,000 people living with MS, where they can exchange advice and support for each other about working life with the condition.
“What we’re trying to do is provide information so that in an ideal world, if people are able to continue working, then they can do. There
has got to be a choice for the individual from a health and wellbeing point of view.”
But David believes much more needs to be done in educating employers, and other colleagues in the workplace, about MS and neurological conditions.
“About a third of people being discriminated against and forced out of work because of their condition is truly shocking and shows how much ignorance there is in the workplace at the moment,” he says.
On a charity bike ride last year, David met a company chief executive who had hidden his MS diagnosis for 30 years for fear of being discriminated against.
He adds: “It’s about educating employers and colleagues at work so they understand what MS is and what reasonable adjustments they might be able to make to improve things for the organisation and the individual.”
For brain injury survivors, however, returning to work can be immensely challenging, and it often requires a commitment from both the individual and the employer.
Remploy, the UK-based disability recruitment specialist, provides employment and skills support for disabled people and those with health conditions. It also helps employers to become more “disability confident”.
Vocational rehabilitation consultant at Remploy, Sarah Pearson, sets out guidelines for returning to work with a brain injury.
“There are benefits for the patient, the workplace, and society to finding factors that facilitate a successful return to work,” she says.
“The vocational rehabilitation process is a balancing act in individualised planning and support, as a partnership with the employer, needs to be developed, motivation needs to be generated and awareness built of abilities that facilitate return to work.
“With improved rehabilitation and greater awareness of the impact of ABI, it makes good business sense to ensure that the employee has the tools and support to be able to return to work successfully.”
Michelle Munt resigned from her job “out of guilt” after suffering a diffuse axonal brain injury in a freak traffic accident in 2014.
“I was working for a small employer and they didn’t necessarily do anything wrong, but it was the guilt that I was carrying around, that the company would financially struggle without being able to fill my role properly, which made me resign,” she says.
“I don’t think my situation is unique. There’s probably a large number who will end up giving up careers because they just don’t know what else to do.”
A previous career in recruitment led Michelle to set up Jumbled Brain, a coaching service which helps brain injury survivors back into the workplace.
It informs them about what reasonable adjustments they can ask for and assists with CV writing and interview preparation.
Applying for a job is a stressful situation for anyone, but particularly so for someone with a brain injury, she says: “You have the worry of having the employment gap in the first place, and then there’s what you actually put on your CV, which can be an issue for anybody, but particularly if your memory or concentration is not as good as it was.”
Michelle finds that the fear and guilt brain injury survivors may be dealing with also leaves them at a disadvantage in job interviews.
“In my own experience, we can be self- perpetuating,” she says. “Instead of putting our best foot forward as you are supposed to do in interviews, we make it harder for ourselves.”
While there are always times when it is appropriate to disclose information to a prospective employer, such as if reasonable adjustments need to be made, some survivors find themselves oversharing unnecessary information about their condition, which can lead to employers ruling them out.
“The other person may not have noticed anything they feel would be relevant to the role, but out of fear of what’s going to happen, they start divulging things that perhaps they don’t need to.
“It’s a frightening thing for anyone to hear, when you’re talking about an impairment, so employers tend to err on the side of caution.”
And yet, it doesn’t take a lot to accommodate someone with a brain injury, just a bit of care and creativity, according to Suzanne Guest. “Sometimes good brain injury management is just good management, as it involves giving clear instructions,” she explains.
“Systems that can be put in place can be simple and low tech, such as checklists and notice boards.
“These can be helpful for everyone. Other strategies, such as minimising distractions and letting people know that you check emails at certain times of day, are often recommended by business coaches as ways of being more productive.”
She adds: “It really doesn’t have to be expensive to include someone, and often people with brain injury can make really good employees.”
The key is to be able to look past the challenges, and focus on an individuals’ strengths, believes Michelle.
“Most of us struggle with brain fog or forgetfulness and therefore we worry about it a lot, but none of these are things that stop anybody going for the job that they want.
“We focus so much on our limitations – or what we perceive to be our limitations – we actually stop ourselves from going forward
for something. Just because you forget a word from time to time, doesn’t mean you’re not the right person for the job.”
Now is the time to embrace better ways of working
By Merryn Dowson, assistant psychologist and part of the team behind rehab goal-setting platform Goal Manager
A stitch in time saves nine. Rome wasn’t built in a day. The best things take time.
We are all too aware that some of the most important parts of our lives have been crafted, carved and developed over months and years. Consider your education, for example: you may well have been to primary school, secondary school and then sixth form college. Perhaps you went on to do an undergraduate degree.
You may even have taken another leap and completed a Master’s degree or a Doctorate. This took years. You learned, revised, sat exams, sat resits, applied for places, got results, got rejected, got accepted, and made it here.
One thing is certain: compared to all of this expertise, someone who completed a two-hour online course on the same topic does not come close. We know that putting time and effort into something gives us better results than if we tried a quick approach.
We do not always lead by this example though. Despite the knowledge that great results are only achieved through hard work and perseverance, sometimes we decide just not to bother. Often, a room in our home might look cluttered, worn down and unloved and it could be made to look incredible.
The walls could be painted, clutter cleared, carpet cleaned, furniture patched up, curtains updated, but it is so much effort. We see the effort it would take and keep living with it. It does the job. It’s fine.
We heard this a lot when we began to develop our software. Goal Manager was designed from within a clinical neuropsychology service with young people with acquired brain injury, and we recognised how goal setting was becoming an intimidating concept within our service and our colleagues across the field.
To combat this, we developed an online goal-setting platform which streamlines the key processes of goal setting into one system and allows members of multi- disciplinary teams (MDTs) to collaborate on goal data remotely.
Crucially, it was designed to fill a hole. The more daunting goal setting became, the more it was shied away from, and the guidelines for goal setting that had emerged from the literature were falling to the wayside.
While we designed our platform to save time on completing all of the gold-standard processes of goal setting compared to doing them manually, we found that people had often not been completing them at all. It was all too complicated.
As a result, we recognise that adopting a software solution like Goal Manager can come with its own problems to solve. It requires relearning a lot of
what we know about a concept like goal setting, understanding properly how these key processes work and how they can be applied clinically to benefit clients.
It is only then that you can start to think of ways to make it more efficient. To help with this, our users are offered bespoke demonstrations, guided MDTs through meetings to help with the clinical application of the data, and training on assessments and goal attainment.
This takes time. Our users are often throwing out their previous guide and writing a new one. When surveyed, however, every single one who responded said that it was worth it.
This brings us back to where we started: the best things take time; Rome was not built in a day; a stitch in time saves nine. By taking time to develop an understanding of goal setting and being able to apply it to a software solution, users experience all of the benefits of best-practice goal setting outlined in the literature both for their clients and for their teams.
Clients are motivated, rehabilitation is meaningful, important areas to address are highlighted, MDTs are focussed, clinical practice is evidenced – the list continues. None of this would have been possible without the initial investment of time.
While simple enough to read, this is no doubt overwhelming to apply to your service or practice and, with this in mind, there are some key points to remember. The most significant is that there is no better time than now.
The world is slowly opening its eyes, sitting up in bed and having a good stretch after the darkness of the Covid-19 lockdown. It is not yet certain if we are going back to snooze or if we are leaping out of bed afresh.
What we do know, however, is that we are heading into a brand new day. Even for those of us who continued in practice throughout the pandemic, services have been slightly paused in one way or another, whether that be refraining from home visits or having fewer people in the office.
We are all very aware that we are heading into the “new normal” rather than our old ways. Use this time to bring new and innovative ways of working into your practice. You might completely change your filing system, consider how you approach your waiting lists, or change how you approach MDT meetings.
Whatever you have been wanting to do for you and your service for so long, now is that time.
Perhaps you decide that you are going to welcome change but not all at once. That works too! For users of Goal Manager, we often suggest that starting with one or two clients might feel more manageable than a whole caseload.
This can help get to grips with the new concepts and ways of working without feeling like everything is completely disrupted. This applies elsewhere too. If you are wary of integrating a system into your whole service, start with one corner of it, evaluate, take what you have learned and then look to apply it more widely.
Finally, remember that all time taken to improve and grow impacts more than just what you set out to do. When people lose weight, they rarely conclude
by saying they just lost weight: they often enthuse about how they feel more energised or move easier or feel more positive or experience less anxiety.
This applies to any time you invest in developing your clinical practice or your service.
While time spent learning how to use Goal Manager and establishing it within a caseload is designed to improve goal setting, that investment also leads to improved assessment processes, more effective meetings, improved digital literacy, increased patient involvement and so much more.
The potential is enormous. To motivate you to start the process, look at what you want to achieve and how that might trigger other improvements.
While the world is still trying to drag its head off the pillow to open up the lockdown curtains, look to invest in addressing those needs you have always been aware of but never felt like you could justify the time.
Walk around your “house” and look into each room: is this the best it can be or could I give it a lick of paint?
Is now the time to bring meaningful solutions into my practice? Maybe grab a tester pot and try a new shade on the walls. Sign up for a free trial. Plan to grow and improve. Start building Rome.
To invest in improving your goal setting, visit www.goalmanager.co.uk to register for a live demonstration, sign up for a free trial or request a bespoke tour through the platform and its features.
Researchers unlock key prognostic tool for brain injured patients
In 1974, leading neuroscientist Graham Teasdale co-created the Glasgow Coma Scale (GCS) while at the Institute of Neurological Sciences in Glasgow. This scale has since been used to assess coma and impaired consciousness in patients who have had a brain injury.
The scale is used to describe variations in a patient’s eye, motor, and verbal responses. Each feature is assigned numerical scores depending on the quality of the response, and total scores range from three, which is a deep coma, to 15, which is full consciousness.
The GCS is used in clinics all around the world by physicians, nurses, and emergency medical technicians; and is also applied more widely in other, more complex systems that are used in assessing acute brain damage.
However, all three features of the GCS can’t always be determined in patients. Most commonly, the verbal response can’t be tested, as it’s not possible to determine this response in patients with severe brain injury who are intubated.
When the verbal score cannot be measured, the GCS can still be used in routine assessment and communication about a patient’s condition.
“The GCS should be reported in its component parts, so there is still useful information in the motor and eye components, and the verbal score can simply be reported as not testable,” Paul Brenan, senior clinical lecturer in neurosurgery at the University of Edinburgh says.
“The missing verbal score is problematic, though ,when determining the GCS sum score (eyes + verbal + motor). The sum score is used in clinical prognostic tools, such as the GCS -pupils score, so until now, missing verbal data has prevented clinicians from using these tools.”
But now, Teasdale and Brennan, along with Gordon Murray at the University of Edinburgh, have created a tool to use to assess impaired consciousness when the verbal component of the GCS is missing.
The researchers first examined a database of GCS assessments, and found that the verbal component of GCS was missing in 12,000 patients with traumatic brain injury (TBI), which made up 11 per cent of GCS assessments. These verbal scores were most often missing in patients with low eye and motor scores.
Using GCS data recorded in a database of 54,000 patients, the researchers calculated the distribution of verbal scores for each combination of eye score and motor score. They then combined GCS eye and motor scores into EM scores, and determined the distribution of verbal scores for each EM score. Based on this, they identified a verbal score that clinicians could impute for every EM score.
“Without the verbal component of the GCS, the GCS sum score (eyes + Verbal + motor) cannot be determined, so we developed this imputation tool to enable clinicians to benefit from these prognostic tools for decision making in patients with the most severe brain injuries, where the verbal score is not testable,” Brennan says.
To test these imputed verbal scores, the researchers substituted imputed verbal scores for actual verbal scores within the framework of prognostic charts, which the authors had previously developed.
These charts take into account the total GCS score, pupil response, age of the patient, and findings of abnormalities. The charts provide predictions about patient outcomes, and are designed to help clinicians make decisions and communicate across teams.
The authors outline in their paper, ‘A practical method for dealing with missing Glasgow Coma Scale verbal component scores,’ published in the Journal of Neurosurgery, that they found that the information gleaned from imputing verbal scores according to each EM score was similar to the variations between precise eye and motor scores, and from full information on verbal, eye, and motor responses.
Imputing verbal scores doesn’t add new information, but allows clinicians to use prediction and prognostic models by filling in verbal data needed for those systems to work.
“We have developed several tools related to the GCS that enhance its ease of use and clinical application, including the GCS Aid, the GCS-pupils score and the GCS pupils Age CT prognostic charts,” Brennan tells NR Times.
“These have been designed to address specific needs. For example, the GCS Aid was developed to support training in assessment of the GCS and to enhance reproducibility of assessment. The GCS pupils score and prognostic charts provide a simple but robust prognostic tool that can be used in the clinic.”
“Prognostic scores are helpful for clinicians to get a reliable prediction of patient outcome, to inform clinical decision-making and to support communication with a patient’s family.
“We know from previous research that clinicians can tend to predict overly pessimistic outcomes for patients, particularly those with severe brain injuries, so these prediction models are designed to prevent that. With our imputation tool, the sum score can be determined and prognostic models used in real-time in the clinic.”
The researchers believe that being able to add verbal scores will help clinicians quickly determine the severity of acute brain injury and estimate patient outcomes.
“We know from the enquires we get and from the number of downloads of materials from our website, that these are very popular and are having a positive impact on clinical care around the world.
“We are confident this missing verbal score imputation tool will be just as positively received,” Brennan says.
Update:concussion in sport
A run through the latest developments in concussion in sport research and protocols.
A study published in the May 27 in the medical journal of the American Academy of Neurology, looked at a biomarker called neurofilament light chain, a nerve protein that can be detected in the blood when nerve cells are injured or die.
Levels of the protein in the blood were measured and it was found that those with three or more concussions had an average blood levels of neurofilament light 33 per cent higher than those who had never had a concussion.
“The main finding in the study is that people with multiple concussions have more of these proteins in their blood, even years after the last injury,” said study author Kimbra L. Kenney, M.D of the National Intrepid Center of Excellence.
“Additionally, these proteins may help predict who will experience more severe symptoms such as PTSD and depression. That’s exciting because we may be able to intervene earlier to help lessen the overall effects of concussions over time.”
Following on from our article on the game changing tests into concussion in children it has been found that concussions sustained by high school athletes continues to increase.
Injury data collected from 100 high schools for sports including football, volleyball and wrestling found that, between the academic years 2015 and 2017, the average amount of concussions annually increased 1.012-fold compared to the previous four academic years.
Approximately 300,000 teens suffer concussions or mild traumatic brain injuries each year while playing high school sports.
Wellington Hsu, M.D, professor of orthopedics at Northwestern University’s Feinberg School of Medicine said: “It’s understandable to think that with increased awareness among practitioners who diagnose concussions, the incidence would naturally rise; however because we’ve studied and reported on concussions for a number of years now, I feel that enough time has passed and I would have expected to see the numbers start to level out.
“What we found was that the overall average proportion of concussions reported annually in all sports increased significantly, as did the overall rate of concussions.”
The data also revealed that in gender-matched sports, girls seemingly sustain concussions at a higher rate than boys.
The effects of concussion in young people continues to be a key concern, with links between concussion and football, specifically when heading the ball leading to some big changes when it comes to training guidelines.
Coaches have been advised to update their rules connected to heading the ball in training, with no heading at all in the foundation phase for primary school children and a “graduated approach” to introduce heading training at under-12 to under-16 level. This guidance is expected to be issued across the continent later this year.
These new guidelines were recommended following a FIELD study, joint-funded by the English FA and the Professional Footballers’ Association, published in October last year, finding that professional footballers were three-and-a-half times more likely to die of a neurodegenerative disease than members of the general population of the same age.
The study did not identify a cause for this increased risk, but repeated heading of a ball and other head injuries have been identified as possible factors.
Dr Carol Routledge, director of research at Alzheimer’s Research UK, said: “Limiting unnecessary heading in children’s football is a practical step that minimises possible risks, ensuring that football remains as safe as possible in all forms.
“As such, measures to reduce exposure to unnecessary head impacts and risk of head injury in sport are a logical step. I would, however, like to see these proposals introduced as mandatory, rather than voluntary as present, and a similar approach to reduce heading burden adopted in the wider game of football, not just in youth football.”
A similar stance, that also includes restrictions during matches, has been in place in the US since 2015 after a number of coaches and parents took legal action against the US Soccer Federation.
There is clearly a need to educate coaches and athletes about the concussion recovery process while equipping physicians with quick diagnostic tools.
A partnership between Neurotechnology and brain health analytics player SyncThink and concussion education technology specialist TeachAids aims to offer the latest concussion education combined with mobile, objective measurement technology.
EYE-SYNC, which allows a clinician to use analysis to decipher between brain systems to determine whether a patient may be performing poorly or impaired, will create a brain health education and evaluation system based on the implementation of CrashCourse, an interactive educational module that teaches athletes, parents and coaches about concussions.
This implementation will be available to all SyncThink partners which include top athletic organisations and clinical partners providing medical care and education for over 10,000 high school and college athletes.
This implementation could make tracking those who receive concussion education easier while complying with sport governing bodies educational requirements.
SyncThink founder and medical advisor to TeachAids, Jamshid Ghajar said: “Using the SyncThink platform to feature the CrashCourse educational technology for athletes and coaches is brilliant.
“Now clinicians can use the Eye-Sync tests and metrics alongside CrashCourse’s latest evidence-based information on concussion.”
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