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.”
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.”
Stepping up the fight against alcohol-related brain injury
Alcohol-related brain injury (ARBI) is becoming more widely recognised, but specific rehab services for the condition are surprisingly rare.
With few dedicated units for patients with ARBI, many patients in need of specialist care instead find themselves in a hospital or even an elderly care home.
ARBI is characterised by prolonged cognitive impairment and changes in the brain due to chronic alcohol consumption.
The average age of diagnosis in men is 55, and only 45 for women – following at least five years of excessive alcohol consumption, of around 50 units per week in men and 35 for women.
ARBI is not a degenerative condition, with up to 75 per cent of patients recovering to some degree with the correct support; and the first three months following diagnosis are recognised as key in a person’s recovery. Access to appropriate provision, therefore, is even more crucial at this time.
In February, UK-wide charity Leonard Cheshire opened a residential unit in Northern Ireland to help some of the many patients in need in the country. It is the first facility of its kind on the island of Ireland.
The 14-bed unit, near Belfast, opened inconveniently – after years of planning – just as the COVID-19 crisis was emerging.
Its work goes on, however, with the centre taking patients from across the country, though initially from the capital and surrounding areas.
The residential centre aims to support residents over a two to three-year period, although that can be shorter for some patients. It helps them to live independently, by building the life skills and confidence to do so.
Naomi Brown, clinical lead at the centre, joined Leonard Cheshire late last year to oversee the opening of the facility, following an extensive career in brain injury work and in being part of multidisciplinary teams.
She says: “The background here in Northern Ireland is that the acquired brain injury (ABI) service is really well structured and established but for ARBI, often the person wouldn’t meet the criteria for addiction services, but their needs would not be such that they needed to be admitted to hospital, or even fulfil the criteria for ABI services, so they would fall through the cracks.
“The provision they receive would often come from the care sector, but to end up in a care home at what could be a very young age is not appropriate either.
“There is a real lack of options. Their care managers recognise they aren’t in the appropriate setting for them, but through a lack of alternatives, it is very difficult.
“A lot of symptoms are very similar to those under the influence of alcohol, difficulty with balance and memory for example, which can make ARBI difficult to diagnose.
“Often it can be something like liver failure that gets them into hospital, but then it becomes obvious there are cognitive issues there too.
“Our centre only has 14 beds, which we don’t pretend is going to answer the scale of the problem, but the decision to restrict it to that number is that we don’t want quantity over quality. To try and accommodate huge numbers would risk the patient-centred approach that we are really proud of, so we wanted to keep it on a small scale.
“But there are 14 places here at any one time for people to get access to the specialist rehabilitation they need, so we are really pleased to be able to offer this.”
With the centre’s goal being the independent living of its patients, a resident-led rehab plan is created for each individual, based around their individual goals and aspirations.
It is delivered by Leonard Cheshire’s team of rehab assistants, supported by clinicians, occupational therapists, physiotherapists, speech and language therapists and neuropsychologists who come in to hold sessions with the residents, and overseen by Naomi.
“From the minute someone is admitted to us, we are already planning for their discharge, even though that may be a long time and a lot of work away.
“From the very start, it’s about the individual, it’s absolutely not a generic approach, even though the ultimate outcome for everyone may be the same. Most people who move in do want to live independently, so if that’s their goal and we will do all we can to help them achieve that, with a plan individualised for them.
“Some people will come to us and we realise they won’t be here very long as they do very well very quickly, but for others, they are going to be with us for two or three years.
“Some people arrive and love it here and say they don’t want to leave, which is a great reflection on the work we do and the centre we’ve created, but the ambition is that the point will come where they realise they don’t need us anymore.
“Through the work we do and our interventions, we can make very good progress. We’ve had some people here already who have been in quite an acute state but the progress they make brings joy into my heart.”
One such patient is David* who, despite only being with the centre for a matter of weeks, has made significant progress in his recovery.
Prior to moving to Leonard Cheshire, he lived in a nursing home for two years.
Before his arrival, Naomi remembers he had low mood, minimal spontaneous conversation and spent long periods of time in his bed sleeping.
He had no clear weekly routine and lacked any scheduled therapeutic or recreational activities.
Naomi says: “David initially required a significant amount of support to initiate activities, engage with others or even leave his room. He has slowly adjusted to the active therapeutic programme in the unit and his mood has improved significantly.
“His mobility and exercise tolerance has greatly increased, he participates in group activities, is now more spontaneous in conversation and has developed facial expressions. David has been able to self-identify rehabilitation goals and discovered a new love for playing the drums and guitar.
“He is in the very early stages of his rehabilitation but having spent three months in the ARBI unit, the change is his quality of life is already dramatic.
“He engages in an individual, weekly timetable which includes activities of daily living, physical, cognitive and social activities, and is reportedly very happy in his current placement. Once the COVID-19 restrictions are lifted, we very much hope to begin reintegrating David to the local community and making future plans for his discharge.”
David’s experience is one which the unit is keen to replicate, by engaging patients from the earliest stages of their arrival at Leonard Cheshire in building a new and healthier daily routine.
“We are always keen to introduce routine, as that is so important in the longer-term. Where some people have maybe traditionally watched TV all night then get up into the afternoon, we try to create a new routine with lots of support services available in the morning. A healthy routine is what we want them to have when they go back home,” says Naomi.
“We encourage people to do things for themselves – to get up, make yourself breakfast, maybe do some gardening or help with the cleaning, all things which promote the ability to do things independently.
“If they put the washer on, they’ll need to go back to it when it’s finished. We have rehab assistants on-hand to support them, but we do actively encourage independence.”
Everyone has an individual timetable for the week based on their own interests, combined with their clinical requirements, which centres on promoting reintegration into the community.
“It’s very individualised, so if someone wants to do an online course or learn how to cook for themselves, or learn a musical instrument, we’ll focus on that. We have a fantastic team here who will turn their hand to anything for the benefit of our residents,” says Naomi.
“As well as activities in the centre, we do a lot in the community, or rather we did before COVID-19, but that will resume when it’s safe to do so. We did sports activities, yoga classes, bowling, it’s not just your classic physio. We want people to be engaged and comfortable with the world outside.
“We will always ensure residents have support once they leave us, and are setting that up long before they go.
“If there was someone who was with us who wasn’t from Belfast, we would use resources we knew were transferable to where they lived, so they didn’t leave us and not know how to access support.
“We build up these links with community services in the relevant discharge areas, so ideally the person will already be confident at being independent and will have the added assurance of knowing they continue to be supported.”
The Leonard Cheshire centre’s launch came amid changes to Northern Ireland’s legislative backdrop with the implementation of the Mental Capacity Act (NI) 2016. This has new deprivation of liberty regulations, a significant new introduction for the country and its approach to capacity and consent.
Naomi says: “When planning for the opening of a new centre, a global pandemic wasn’t on the radar, and for it also to coincide with the new mental capacity legislation meant it was a really busy time for us in the early stages, the COVID-19 aspect of which we could not have foreseen.
“The pandemic did present challenges for our residents, many have a certain level of confusion so it’s difficult for them to always remember that they can’t be close to someone else, they have to regularly wash their hands. There is a lot of prompting which leads to a certain amount of frustration. While they are watching these things on TV about how COVID is affecting the world, it’s hard to relate that to everyday life.”
New referrals continue to arrive during the pandemic, from both hospital discharge and moving from a care home environment, although happily the Leonard Cheshire unit has remained COVID-19 free.
“We were keen to admit new residents and take referrals from hospitals and care homes, subject to extra measures being in place to protect ourselves and our residents.
“We wanted to continue to support hospitals and free up beds, but also to offer the appropriate care to people whose specific needs through their ARBI diagnosis meant they would be better in our centre than a hospital environment or care home.
“This has certainly been a challenging period in which to start our ARBI unit, but we have come through it well together so far and we look forward to continuing to develop ourselves as we come out of the pandemic and go into the future.”
*Name changed for anonymity.
Neurobehavioural rehab in aggression management after TBI
Changes in personality following TBIs are often more problematic than neurocognitive, functional deficits or even physical disabilities. Dr Grzegorz Grzegorzak, consultant neuropsychiatrist at St Peter’s Hospital, South Wales, explains why taking a neurobehavioural approach to treating TBI can be highly effective.
Personality changes are sometimes referred to as neurobehavioural disability (ND), especially when associated with social difficulties.
The concept of ND involves impairments of numerous aspects of functioning including the abilities to self- monitor and self-regulate, to control frustration, anger and aggression, to tolerate delay in gratification, and to self-motivate.
These impairments can lead to a sense of being overwhelmed when facing situations requiring control and management of internal impulses or coping with social situations or tasks.
Impulsivity, disinhibition and aggression all have significant potential to interfere with rehabilitation efforts, jeopardize recovery and become a major obstacle to successful functioning in social roles.
Research estimates the prevalence of aggression in survivors of TBI as being as high as 33.7 per cent.
Addressing aggression as soon as it arises is critical to the individual’s recovery.
Sometimes aggressive behaviour is so intense and frequent that its management takes priority over all other aspects of care and rehabilitation.
Neurobehavioural rehabilitation (NR) was introduced in the late 1970‘s as an attempt to improve functional abilities of TBI patients.
NR stems from recognising that people who survive TBI can still learn new skills to self-regulate and to modify their behaviour.
The basis of NR is embedded in learning theory and thus the success of NR is reliant on the patient’s ability to make use of new information and experiences.
Therefore, NR is only suitable for the post-acute phase of recovery from TBI, and in fact is intended as a medium to long term rehabilitation programme.
NR interventions are composed of comprehensive and multidisciplinary efforts to create a user-friendly, supportive and encouraging social environment which facilitates therapeutic interactions and activities.
Specific goals and detailed routines are constructed for each patient individually, based on structured collection of data informed by behavioural analysis.
The process of designing and implementing the interventions puts emphasis on personal autonomy.
Clinical formulation is preferred over medical diagnosis. The attitude of the MDT should always be positive, embracing a strong belief in the patient’s ability to achieve their goals, improve and recover.
Carefully managed feedback and positive reinforcement are an essential part of NR.
Consistent interactions with every member of the team are of utmost importance, given that neurobehavioural intervention should not be limited to scheduled activities but in fact incorporated in every interaction.
Over the last forty years the model has been implemented by many neurorehabilitation services worldwide.
Several case studies describing recovery pathways through NR paint a very positive picture, and our own experience at St Peter’s of adopting a neurobehavioural approach has demonstrated it can produce real and measurable outcomes for both our patients andtheir families.
Case Study: Mehmet
On admission to St Peter’s Hospital, Mehmet presented with extreme challenging behaviours including serious assaults on staff, destruction of environment, verbal abuse and shouting.
Mehmet has frontal lobe dysfunction as a result of a head injury he sustained. For the previous 18 months he had been in a general hospital.
At St Peter’s a bespoke positive behaviour support plan and activity plan were developed with Mehmet’s input and reflecting his cultural needs which, under the supervision of his MDT, promoted positive changes to his social interactions, routines and activities.
Over nine months Mehmet’s challenging behaviours reduced significantly and he now enjoys a wide range of activities including regular community visits and has strengthened his relationship with his family.
Dr Grzegorz Grzegorzak is one of the consultant neuropsychiatrists at St Peter’s Hospital a specialist 39-bed Neuropsychiatric facility in Newport, South Wales run by the Ludlow Street Healthcare Group. www.saintpetershospital.co.uk
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