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Unequal opportunities

A third of people with a brain condition face workplace discrimination. Sarah Sinclair reports on the challenge of getting into employment – and staying there.

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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.”

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Insight

How mental health impacts physical rehabilitation

Breakthrough Case Management discuss how a client’s physical rehabilitation is inextricably linked with their mental wellbeing

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Mental health issues are all too common, with the numbers of people impacted by mental ill health rising significantly, particularly as the effects of the pandemic continue to be realised. 

And while the true extent of such problems is probably yet to be fully understood, research is continually uncovering the power of the connection between the body and mind. 

For those of us working with individuals who have experienced a life changing injury, the impact of mental health on physical rehabilitation is clear to see – in both positive and negative ways. 

With around one in four people in the UK experiencing a mental health problem every year, it’s possible that someone living with life-changing injury faced mental health challenges before their accident – which only amplifies the situation they now face.  

But even if someone has no pre-existing mental health concerns, such injury will most probably adversely affect their wellbeing. 

This can manifest in feelings of overwhelming distress, confusion, anger, fear, hopelessness, anxiety and depression or the development of phobias, panic disorder, catastrophisation or post-traumatic stress disorder (PTSD).

Awareness of mental health and its implications is vital knowledge for any case manager. Because of the close connection between the health of the body and mind, and the potential for mental struggles to impact on physical recovery, mental health support is an important element of nearly all our rehabilitation programmes.

From a Breakthrough Case Management perspective, our rehabilitation programmes will almost always bring in a qualified psychologist. We understand the impact mental turmoil can have on a client, and we work with a team of psychologists who we match with a client depending on their requirements and their injury or situation.

Mental health support should always be considered as part of a holistic approach to rehabilitation, so we work collaboratively with the entire multi-disciplinary team, to understand the challenges our clients are facing and deliver the support they need to move beyond them. 

There is so much going on for someone who has experienced a life changing injury, which might include anything from sleep problems and financial difficulties to relationship issues. We understand that when we ask someone to be motivated and push themselves physically, it’s going to be even harder if they aren’t feeling well mentally.

But while many people struggle badly with significant mental health issues, the situation can vary greatly from person to person. It doesn’t need to be a mental health crisis or severe depression to require attention and action, the symptoms can be less severe. 

Feeling overwhelmed and fearful is common after a traumatic injury, which can lead to lower motivation, reduced engagement or a wish to isolate. All of these factors can cause great distress to a person (and their family), which can also delay or impact the success of physical rehabilitation.

We see clients who sometimes feel the effort required may not be worth it. This might be because the gains don’t seem big enough, the status quo feels more comfortable, or they are frightened they will injure themselves further. 

They can withdraw, feel helpless and become anxious – but staying in that place limits potential. We’re here to help our clients take back control and look towards a more positive future.

So, what can we do when a client is struggling to cope with their mental health? The psychologist’s role in the multi-disciplinary team is vital, to identify the problem and develop a plan to address it. But every member of the team needs to be involved if a client is going to reach their goals, whether that’s getting themselves out of bed in the morning or walking a mile.

At Breakthrough, our case managers work with each client as an individual to find out exactly what they need to reach their goals and then bring together the best possible team to support them. 

This might involve a personal trainer, occupational therapist, neuro-physiotherapist, vocational therapist and psychologist for example. They will also identify any other issues that might be interacting to affect ongoing rehabilitation – such as sleep, appetite or medication – and organise professional, practical or financial help to address them.

Even before establishing a team, the starting point is to set realistic SMART goals broken down into achievable milestones, which a client can get behind and truly believe they are able to achieve. 

These goals must be backed up by trust – in the case manager, team and whole rehabilitation process. Developing this trust starts from the very first time we meet a client, where we start to build their confidence in our professional expertise and experience.

When someone has been traumatised, rehabilitation can take a long time and it is, of course, not always easy. But with a plan and the right support it is possible to overcome obstacles that might have previously felt insurmountable.

The more people push themselves forward and see the benefits of the work they put in, the more resilient they become.

A positive attitude is also important. At Breakthrough Case Management, we are naturally optimistic, and this positivity, alongside our tenacity, supports our clients. 

We won’t ever give people false hope – we never promise that everything is going to be all right when it isn’t. But what we will always do is work together to find out what is possible, set realistic goals and make the most of a client’s potential to reach those goals.

Through our own experience, we know the physical, mental and practical challenges our clients face are inextricably linked. 

We know we can support their mental health, and in turn physical rehabilitation, by taking some of the anxiety away. 

This might be something as simple as organising payment of bills or sorting out basic house maintenance, and while these practicalities are peripheral to the main problem, they are often the straw that breaks the camel’s back.

We are here to help and ensure our clients feel cared for physically and mentally, because effective physical rehabilitation isn’t possible without good mental health support.

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Are we neurological time travellers?

Lisa Beaumont looks at the similarities between young stroke survivors and people living with Young Onset Parkinson’s Disease

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Advocating for Neuro ProActive has provided many introductions to numerous neuro visionaries.

For example, my response to a recent LinkedIn message from the national charity Spotlight YOPD, representing those with Young Onset Parkinson’s, saw CEO Gaynor Edwards pop in for a socially distanced cuppa. She brought fellow YOPDer and former neuroscientist Dr Jon Stamford with her. 

Therefore, since I am always keen to talk to the best brains in the sector I was happy to host – they brought cake to make the meeting all the sweeter. Rapidly, I discovered that young ‘strokies’ and young ‘Parkies’ have a lot in common – the conversation was easy and animated.

In both cases we were living with conditions more commonly associated with the elderly than those in midlife – as the three of us are.

Sitting round the kitchen table we all had hope – and a belief that as advocates for our conditions we could and would make a difference. As the generation of personal computers and mobile phones, we will probably be using AI to make some of that difference. Three smartphones sat alongside the mugs of tea and cake plates on the table. 

Health technology apps like Neuro ProActive in the hands of the right people – those impacted neurologically – is a potential game changer. 

I was  fascinated to hear from them about how much they feel an affinity with young stroke survivors, like me.

Three reasons for affinity between stroke survivors and YOPD 

1. We defy expectations

Most importantly, both groups, ‘Strokies’ and ‘Parkies’ face a shared challenge in that our conditions are popularly associated with elderly patients not mid-life people, like us.

2. Digitally capable

Thanks to our relative youthfulness, we are a tech savvy patient community and have the confidence to ask questions and demand attention from medics and peers.

Both our charities, West Kent Different Strokes Peer Support Group and Spotlight YOPD are so excited about the roll-out of Neuro ProActive nationally and internationally.  We both support cohorts of  young patients who will welcome the opportunity to have some agency in their treatment programme by being empowered to self-manage their condition digitally.

3. Multi-disciplinary teams

Despite the clear difference between stroke rehab’s management of rehabilitation and YOPD’s need to manage its degenerative symptoms, both groups share the need of input from a range of AHPs.  

Access to neuroproactive.com will give us an easy platform to reach those practitioners with whom we will be able to communicate, record progress and set goals in one place.

The identification of these three similarities between stroke survivors and YOPD reminded me of this quotation from Shakespeare: “Misery acquaints a man with strange bed-fellows”.( Tempest Act 2, scene ii).

Neither group feels miserable. By contrast, we feel excited. We are happy to promote the possibilities for improved care for our conditions in future.

I have discovered a new empathy for those who are diagnosed with Young Onset Parkinson’s Disease, and those who remain undiagnosed. It is significant that reliable data is hard to find for this condition.

It is a game-changer for Neuro ProActive that Ian Pearce tweeted  news in December 2021:

Delighted to announce that, following a public tender, ⁦@NeuroProActive⁩ will be adopted by the South Wales Trauma Network. This will involve integration with EPRs and an independent research study on 500+ patients funded by The World Economic Forum. 

Value Based Healthcare Wales. Likewise the news of its adoption by Leeds Children’s Hospital. 

More patients and data will deliver better outcomes for all neurological conditions, which like Shakespeare’s themes can apply to any age. Strokies and Parkies feel old and young simultaneously.

Therefore, we feel like time-travellers.

You can get your own glimpse of the future by visiting www.NeuroProActive.com

And follow @neuroproactive on Twitter for the latest news.

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Insight

The desire for discharge home

Renovo Care Group share a case study of delivering the rehabilitation and goals to help achieve the return home

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One of the most common patient goals we work towards in acute neurorehabilitation is often the one to be discharged home or to an alternative placement.

We recently had a patient admitted for a six-week assessment period to determine whether an escalation of distress was psychologically driven, neurologically driven or a mixture of the two. To give a bit of context to this situation, this gentleman had cerebral metastasis in his right frontal lobe secondary to lung cancer and had been sectioned several times over the past year due to risky behaviours towards self and others. Whilst he had a few goals that he wanted to achieve during his time with us, the main one was to go home to his family after rehabilitation.

Given that we had a short assessment period, the first question we asked ourselves was how were we going to work with him to achieve his goal?

Upon his inpatient admission, the gentleman was seen twice a week by physiotherapy and two to three times a week by neuropsychology for assessment. Physiotherapists and neuropsychologists are guided by evidence-based practice in their professions and use their knowledge from practice to develop the evidence.

After understanding the cause of an injury, they work to ease physical and psychological symptoms using a variety of techniques. Assessments using outcome measures and formulations are conducted to gain a holistic view to help to determine the best course of treatment for a patient. 

The main goal of physiotherapy sessions for this individual was to improve his endurance, strength, and participation in activities that he enjoyed. He was measured for his upper/lower limb strength using the Oxford scale. ROM (Range of Motion) and MAS (Modified Ashworth Scale) were also used to identity that he had a normal passive and active range of motion over all joints, and no muscle spasms were evident.

Finally, we assessed using the Berg Balance Scale, which is an objective way of determining how well a patient can safely balance during a series of predetermined tasks. He scored 55/56 which indicated a low risk of falls.

Initially the main goal of neuropsychology was to assess the gentleman’s cognition, behaviour, and emotions to hypothesis whether the distress he displayed was neurologically driven.

Maja Kreninger, physiotherapy assistant

Whilst he was previously screened using a brief cognitive test several years earlier, there did not appear to be a reassessment since the cerebral metastasis diagnosis. Therefore a comprehensive baseline to measure any further changes was required.

During inpatient sessions, the gentleman completed a battery of psychometric assessments to measure his current level of cognition. This included a test of premorbid functioning to find out an estimate for intellectual level before diagnosis, a current level of cognitive functioning (after diagnosis), language, attention, memory, and executive functions (higher-level thinking skills such as planning, cognitive flexibility, decision-making etc).

His behaviour and emotions were tracked over time using a mood/ behaviour diary filled out by ward staff. Mood and quality of life measures were also completed.

Our second question then became, how ethical is it to just provide an assessment when an intervention may also prove effective?

The simple answer is that it is not ethical. What is the point of putting a person through intensive assessment that may evoke anxiety or frustration if you aren’t going to provide them with the tools or strategies to support the areas of difficulty? It was obvious that this individual wanted to go home after his assessment period, but it was likely that he would still benefit from having neuropsychology and physiotherapy input.

The model we jointly decided on with him was for him to come in as an outpatient one day per week. With input from his family, he concluded that Wednesdays were a good day for him to travel to the hospital, engage in his sessions and travel back home. That way his preference of living at home and receiving neurorehabilitation could be adhered to.

Initially he was scheduled in for two neuropsychology sessions and one physiotherapy session with rest breaks in between. However, it became apparent after the first outpatient appointment that he was unable to cope with the high cognitive and physical demands placed on him in his sessions and catching the bus all in one day.

In order to manage his fatigue levels neuropsychology sessions would reduce to once a week to and the number of weeks that he would be an outpatient would be extended to ensure that he received the intervention required. 

As part of the physiotherapy intervention, the gentleman commenced a personalised strength training program using multiple gym machines. He was given a booklet with details about the exercises, correct methods, resistance, and repetitions so that he could access the gym on his own.

Joint sessions with Occupational Therapy were completed to ensure he could access the community, and exercises helped increase aerobic tolerance. This proved to be successful as he was able to independently go into town to complete activities of daily living, e.g., buying presents, going to the hairdressers etc.

As fatigue was one of the challenges encountered during sessions, physiotherapy focused on gradually increasing the amount of activity completed in a graded, flexible way that was monitored continuously. 

Similarly, neuropsychology also created an individualised intervention to help build his awareness into his brain injury. The intervention consisted of six sessions to improve knowledge of the structure and function of the brain, neuroplasticity, fatigue, and cognitive and emotional changes after brain tumour.

The sessions highlighted strengths and weaknesses of his cognitive, behavioural and emotional profile providing feedback from the neuropsychological assessments. It also included strategies which could be implemented to support the gentleman at home. He was given his

Ellie Knight, assistant psychologist

own folder with all of the session information to use as a memory aid and to share with family. 

Over time, he began to recognise his limitations in relation to fatigue and understood that he could take breaks, complete tasks when he was less tired and show self-compassion.

He reported that his brain injury awareness improved, and he felt much steadier on his feet. He started to engage in community activities such as going to the cinema and regularly walking near his home. After seven weeks as an outpatient the gentleman was discharged from our neurorehabilitation service – his main goal achieved. 

Upon reflection, the first step of his rehabilitation was setting SMART (specific, measurable, attainable, realistic, and time-related) goals that were tailored to his needs and wishes. This improved his motivation and confidence to participate in sessions knowing that we were all working with him to achieve discharge home.

Developing a sense of strength is a personal journey for every patient, whether it is physical, mental or in an everyday setting. As rehabilitation practitioners it should be our duty to assist them in this journey which will lead to improving their wellbeing and quality of life.

  • Written by Maja Kreninger (physiotherapy assistant) and Ellie Knight (assistant psychologist) of Renovo Care Group

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