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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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Stroke

Study reveals if body weight could increase the risk of stroke

Could body extra body weight have an effect on the brain? A new study investigates if it could have an increased risk of stroke or diabetes

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A blue measuring tape to mark a study on the effects of body weight on stroke and dementia

A new Australian study using UK data has shown that extra body fat could lead to brain atrophy which increases the risk of dementia and stroke.

Researchers found that increased body fat could lead to increased atrophy of grey matter and consequently the higher risk of declining brain health. They compiled the data from 336, 309 UK Biobank participants.

Stroke studies

The team analysed the genetic data of the participants within three metabolically different obesity types – unfavourable, neutral and favourable. This established if some bodyweight groups were more at risk than others.

The unfavourable and neutral adiposity subtypes were associated with lower grey matter volume. Metabolically favourable adiposity was tentatively associated with a higher grey matter volume.

The study was published in the journal Neurobiology of Ageing.

Read More: Investing in the future of rehab robotics

Results on body weight

The study did not find any conclusive evidence to link a specific obesity subtype with dementia or stroke. It did suggest that the possible role of inflammation and metabolic abnormalities and how they contribute to obesity and grey matter volume reduction.

The researchers highlighted that maintaining a healthy weight is key for public health. They stressed that there is a need to examine the type of obesity when assessing the impact on health.

Read more: Osteoarthritis: breaking the cycle

Further investigation

Dr. Anwar Mulugeta, a researcher in the Australian Centre for Precision Health at the University of South Australia said: “While the disease burden of obesity has increased over the past five decades, the complex nature of the disease means that not all obese individuals are metabolically unhealthy, which makes it difficult to pinpoint who is at risk of associated diseases, and who is not.”

He added: “Generally, the three obesity subtypes have a characteristic of higher body mass index, yet, each type varies in terms of body fat and visceral fat distribution, with a different risk of cardiometabolic diseases. We found that people with higher levels of obesity especially those with metabolically unfavourable and neutral adiposity subtypes had much lower levels of grey brain matter, indicating that these people may have compromised brain function which needed further investigation.”

Read more: New report reveals a higher number of people with a brain injury in the criminal justice system

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Police must be monitored for brain injury, argue researchers

Twenty-one police officers out of the 54 who took part in their study, all from the same police constabulary, reported having a traumatic brain injury (TBI).

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“Most of the head injuries were from general life experience, such as contact or extreme sports, and some officers were ex-armed forces,” says Huw Williams, associate professor of clinical neuropsychology at the University of Exeter.

Those with TBI were more likely to have experienced post‐concussion symptoms, which was associated with greater severity of PTSD, depression and drinking to cope.

The research supports findings that head injury can compound PTSD, which almost one in five officers have, and exacerbate drinking as a coping strategy.

The study is the first of its kind, and came about when researchers saw there was no data on the relationship between brain injury in police officers and their mental health.

“We did a brief scoping exercise of the literature, and were fascinated to see there was no research on brain injury in police officers, particularly in connection with brain injury and adverse mental health,” says Nick Smith, graduate research assistant at the University of Exeter.

Williams and Smith were surprised how many officers reported having a brain injury, although they expected there to be a relationship between TBI and adverse mental health.

We found that, when officers have a mild brain injury, where they were assaulted or in a car accident, they could have PTSD. When they have this with head injury it can be long lasting, and they can exacerbate each other,” says Williams.

“Despite being a relatively small group, the findings were robust enough to say head injury, in the mix with PTSD, depression and drinking to cope, might lead to negative long-term outcomes,” says Williams.

The findings, the researchers argue, highlights a need to tackle TBI and the consequences of post-concussion syndrome, which can cause irritably, poor concentration and memory issues.

The paper states that exploring TBI in the police could, identify a major factor contributing towards ongoing mental health difficulties in a population where, based on previous research, the implications of TBI should not be overlooked.’

“If it’s not properly treated, it could lead to greater absence from work, so it’s reasonable for police forces to pick up on these issues to mitigate risk of long term sickness,” says Williams.

“Otherwise, I can see it snowballing – chronic stresses increase over time and the weight of negative experiences become harder to carry.

“This leads us to think we need a better system in place to identify TBI, an alert system to allow people come back into operations or situations in a way that’s healthy so they’re not exposed to more risk,” Williams says.

In sports, for example, the protocol following a concussion is much clearer, Williams says, and helps to lower a player’s risk of having a second concussion while recovering from the first.

“England Rugby does a great job with concussion management protocols, they identify the problem then do something about it, ensuring people are in the right mindset to be doing a very demanding job,” Williams says.

Increased awareness of TBI in the police would be a natural progression from being aware of prisoners with TBIs, says Williams.

“I’ve worked in prisons looking at how common head injury is in people who end up in prison, and various police forces became interested in working with us in a trauma-informed manner, taking on a more broad view of the vulnerabilities of people they’re working with.

“But working from this perspective involves understanding trauma of people who provide services as well,” he says. “Sixty, 70 percent of the time, police are trying to manage and look after vulnerable people. It’s important to recognise how they can become vulnerable themselves.”

There needs to be a system and trauma-informed principles in place for police officers to manage their own vulnerability, Williams says – and he’s hopeful this will happen in the future.

“Initial conversations with forces indicate a healthy attitude towards trying to improve how can improve psychological wellbeing,” he says.

But this isn’t just up to forces themselves. It’s also important, Smith adds, to lessen divide between police and public.

“Police need help like us – it’s important to understand how trauma might affect them.”

Williams says police are often portrayed negatively in the media, and it’s important that the public is aware of why they make the decisions they make and the laws they have that could lead to them suffering trauma. 

PTSD, he says, is more likely to occur when officers don’t feel like society is backing them and the public doesn’t understand why they do what they do.

“It’s important for police to be understood as operating as people for people,” Williams says.

This will also require efforts from across probation, healthcare and education, Williams says, to better understand people from different backgrounds and how to build up empathy across society and reduce violence, as well as educating on the importance of identifying brain injuries when they occur.

Ultimately, Williams is hopeful that police forces want to give officers better protection from the consequences of TBI.

“Police officers need to think about myriad factors at same time, and we want them to be optimum capacity to do that,” Williams says.

This study was a pilot, and Smith hopes to do a much larger study in other police forces across the UK that controls for PTSD and depression to see if increases in post-concussion syndrome are due to head injury and not any other factors.

The first step, Smith says, is finding out the rate of TBI in the police force, then developing a tool to measure and monitor brain injury over time. The research, he says, will be done to help rehabilitate people with TBI, with the aim to help police understand the people they’re meeting, and vice versa.

Williams argues that this work is very relevant to public protection, and it’s important it continues.

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How two community services are making tentative steps to normality

As pandemic restrictions lift, brain injury services are starting to come back out of hibernation. Jessica Brown speaks to two Headway groups across the country to see how they’re resuming support offline.

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In Portsmouth, the local Headway has had a difficult time in recent months. Two service users have died from Covid-19, and another has been sectioned and taken to a secure facility after their mental health took a downturn.

There’s been a huge spike in mental health problems, and a few service users, who wouldn’t have done so under normal circumstances, have got in trouble with the police.

Most service users are gradually building their contact with the outside world again, with Headway’s help.

When lockdown began in March, service manager Deborah Robinson decided the best course of action was to identify the most vulnerable users and make sure she and her team maintained regular contact with them. The next challenge was gradually exposing them to more contact as restrictions began to ease.

“We regard it as a graduation – first is phone contact, then sitting in the garden with them, then inviting them on a walk once they’ve got confident enough to come out of their homes with us, then eventually we’ll suggest they come to a session with the group,” she says.

“Some people are too frail or anxious, so they won’t come out,” she says, “So we’ll have to carry on popping in to see them.”

This approach has proven particularly helpful in some ways, Robinson says. Before the virus, staff members hoped service users would speak up in sessions when they had a problem, but visiting people at home has allowed staff and volunteers to pick up on issues faster and get to know them better.

“One staff member met a service user in his garden, and noticed that the recycling bin was overflowing with alcohol. We knew he’d been a drinker in the past, so the staff member talked to him about his drinking, teasing information out,” Robinson says.

“He said he was drinking a lot, so we’ve been able to put in place goals to help him cut down on his drinking and put him in touch with AA, as well as various other things to help with a problem that reared its head in lockdown.”

Employees and volunteers, she adds, are also getting better at texting group members and touching base.

“It’s a mix of phoning people regularly and picking up the ones where there are issues. We’re getting more adept at that because it wasn’t something we did, and we’ve also picked up almost everyone’s carers because we’ve been talking to them to hear their concerns, too.”

Forty miles west in Salisbury, Headway arranged Zoom groups every week, but recognised that this option wasn’t suited to everyone.

“We were conscious to get actual face-to-face contact again, so as the guidelines have changed, we’ve thought about how we can work with that,” says Sarah Allen, service manager.

In recent weeks, online groups have continued, but staff members have started arranging small group meet-ups in various locations, including the outdoor café at Salisbury Museum, which Allen says provided a good learning opportunity.

One of Robinson’s major concerns in Portsmouth is how service users will react when they see other people not wearing masks or standing too close, and are told they have to adhere to guidelines themselves.

Allen, however, hopes meeting up in public places will help service users slowly accustom to these new ways of life.

“Some people coming to the groups haven’t been outside during the pandemic because all their activities have stopped, so it’s really important to model social distancing and hygiene behaviours,” Allen says.

“Somewhere like an outdoor café has been really useful because it’s about giving group members social contact in a setting where they can see people all around them modelling social distancing, staff wearing face masks and putting on hand sanitiser,” she says. “Then, when group members do go out and about more, it’ll be more familiar for them.”

In recent weeks, groups in Salisbury have also met up in a park, where they were able to socially distance.

Allen says coming out of lockdown and resuming services has been a learning curve for her, and she is realising that it’s sometimes more beneficial to have smaller groups than the maximum allowed by government guidelines. 

She knows she will have to continue to adapt in unknown ways as government guidelines change.

But the future remains uncertain. Headway Salisbury doesn’t have its own centre, so rents community rooms to host sessions instead – and none have reopened yet. Allen plans on continuing outdoor activities for as long as possible, but is uncertain of what will happen as temperatures cool.

“Going into autumn and winter poses a new challenge,” she says. “I’m not sure how we’re going to meet if the government guidelines if the maximum number of people who can meet indoors stays the same,” she says.

Meanwhile in Portsmouth, premises have been locked up for the duration of lockdown. Robinson has seen an increase in demand for services, so as things resume back to pre-Covid 19, she says here’s a lot of thinking to be done about how the service is going to expand to accommodate increased need. She anticipates the service will need to expand by a third.

Both Portsmouth and Salisbury Headway services adapted quickly when the lockdown came in March. Adapting back to how things were before looks like it will be a longer, more difficult path – but while Allen and Robinson have faced slightly different challenges over the last few months, there’s no doubt they’ve both found silver linings in the challenges thrown at them so far.

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