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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

Taking time to look back – so the way ahead is clearer

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Reflective practice within healthcare settings is widely talked about, but not always so easy to implement in the workplace. NR Times speaks to one neurological centre about how it benefits patients and staff there.

Reflective practice and discussion in healthcare settings is a professional requirement for nurses, as laid out by the Royal College of Nursing revalidation requirements as part of their continuous professional development.

It allows professionals to take time to pause and reflect, communicate and plan, which undoubtedly leads to better outcomes for patients and staff.

But in reality, reflective practice can often be left to the bottom of the pile, underneath many of the competing responsibilities facing staff who are often pressed for time.

It could be argued that this is also why reflective practice is so important – healthcare staff are facing so many pressures that it actually makes less sense to neglect the important work of individual and team reflection.

The Royal College of Nursing defines reflective practice as: A conscious effort to think about an activity or incident that allows us to consider what was positive or challenging and if appropriate
plan how it might be enhanced, improved or done differently in the future.

Staff at Elysium St Neots Neurological Centre in Cambridgeshire started doing regular, weekly reflective practices when its new hospital director, Fiona Box, came into the role a few months ago.

The nurses and healthcare assistants from a ward are invited into the meetings and in their absence the therapy staff monitor patients and provide activities.

“We thought it would be helpful for team members to give them the opportunity to think, learn, and to hear their opinions,” says charge nurse Jemima Vincent.

“If we have an incident with a patient, we discuss it in the session” she says.

Sessions are led by the management team, with added input from psychology teams on each ward.

They will talk through any strengths, weaknesses and opportunities, and work through an analysis to learn from the incident and create an action plan.

They talk about the worst-case scenario in relation to an individual situation and discuss how staff would manage that, so they’re better prepared in the event of it happening.

While they focus on one patient at a time, issues arise during conversations that bring in their wider experiences.

In an article* published in the Nursing Times in 2019, Andrea Sutcliffe, chief executive of the Nursing and Midwifery Council said: “In these challenging times for health and social care, it’s so important that collectively we do all we can to support our health and care professionals, and their employers, in devoting time to individual, reflective, personal and honest thinking.”

Fiona has received encouraging feedback from staff, who say the meetings help the staff feel much more involved in a patient’s care and allow the team to increase their knowledge and understanding resulting in a more consistent way of working.

“Healthcare workers often don’t fully understand patients’ diagnoses or why they’re reacting in a certain way, for example,” Jemima says.

“They know a patient presents with certain behaviours and may be taking medicine to help them cope but they’re not aware why the patient is showing signs of aggression and the best response to deescalate the situation,” she says.

“It’s a learning opportunity for staff, because reflective practice means that they can understand a patient’s diagnosis and why they behave how they do,” Jemima says.

“Reflective practice answers their ‘why’ questions, and gives them a more open mind.”

Jemima also benefits from the meetings; it’s a way for her to get to know staff better, especially when it comes to learning opportunities.

“I’m able to understand what level of support each member of the team requires, including training needs and if they need more knowledge on a specific topic.”

In her final year as a mental health nurse student on extended clinical placement at Elysium St. Neots, Jo took part in a reflective practice session.

She had just finished her dissertation, in which she looked at how settings can increase the opportunities and variety of reflective practices within hospital settings.

The aim of Jo’s session was to reflect on the recent deterioration in a patient’s mental state and the resulting impact on their well-being to ensure staff had a consistent approach to support the patient.

The hospital’s director Fiona asked the team about the patient’s care plan, diagnoses and needs and wishes.

Where staff were unsure of the answers to questions, Jo says Fiona gave them answers and encouraged the team to share their knowledge of the patient, problem solve and come up with an agreed plan to move forward with.

Jo found the session helpful and was impressed with how the healthcare assistants were so involved in the discussions about all aspects of the patient’s care, including the more clinical elements.

Healthcare assistants told her they found the session helpful too and that it made them feel like they had a better understanding of the patient’s changing mental state, behaviours and needs.

Jo says having the opportunity to reflect on practice is a crucial skill for all healthcare workers to help them learn from their experiences and increase self-awareness, which, in turn, can improve individual professional standards, strengthen teams and enhance patient-centred care and clinical outcomes.

For referrals to Elysium St Neots Neurological Centre or other Elysium centres visit: www.elysiumhealthcare.co.uk/neurological

Reference source: https://www.nursingtimes.net/news/ professional-regulation/nmc-highlights-importance-of-nurses- reflection-on-practice-18-06-2019/

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Robots and resilience at Askham Rehab

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NR Times reports on a new rehabilitation approach taking place in Cambridgeshire.

Despite a year of relentless change and upheaval for all involved in neuro-rehab, one provider in Cambridgeshire has been able to keep its ongoing development on track.

Askham Rehab, part of the Askham Village Community, is a recently-launched specialist rehabilitation service incorporating the latest in rehab robotics and sensor assisted technology.

While the firm has invested in state-of-the-art technology to do the heavy lifting, however, its rehab services remain person-centred, as director Aliyyah-Begum Nasser explains.

“We’re a specialist rehab centre in essence, and so, although the robotic technology helps us to get the most out of our patients and staff, we are very much family-focused.

The equipment is obviously fantastic but we know from experience that a person’s mindset, and their ability to sustain whatever improvements they make, comes down to the people who are supporting them – their family members.

“We’ve been on some real journeys with many of our family members who just didn’t understand the impact of a brain injury in terms of how it can impact behaviour or what it can do for cognition.

“Once they understand that, suddenly they become a lot more compassionate, and a lot more supportive; they become part of the recovery process, rather than being a frustrated observer.”

With recognition of the family’s paramount importance to recovery, Askham Rehab does everything within its power to harness this force – including by enabling families to stay together in specially-designed apartments on site.

Aliyyah-Begum says: “The flats are fully adapted, with cantilever cupboards, height-adjustable sinks in the bathroom and full wet room with turning spaces.

“We have the patients themselves participating in rehab, specifically to their programme, but relatives are also there from the beginning, seeing the improvement and being part of our process from the outset.

“We think of the centre as more of a rehab environment; it’s not a just care home with therapy as an added extra.

“So from the minute our patients wake up to the minute they go to bed, everything is based around their recovery goals, and everyone is working together towards achieving them.”

And robotics are an important tool in pursuing these goals through patient exercise. They help therapists to achieve the repetitions and intensity needed to progress their clients, as Aliyyah-Begum explains.

“The point of the robotics is that they respond to the patient. For example, if you set the machine on a left lower limb, but it senses that there is more pressure being exerted through the right limb than the left, it will automatically respond to make sure the patient is moving the correct part of their body.”

The centre’s head of rehab and nursing, Priscilla Masvipurwa, says: “This is a real a game changer in our approach to rehabilitation.

“Robotics help to bridge the gap, increasing the frequency and repetitiveness of treatment, something that’s an essential part of the process.

“We anticipate that this will enable us to support our patients in reaching their goals in a more efficient and sustainable way.

“The centre has so far invested in four items from robotic rehabilitation firm Tyromotion, but is looking to add more over time, as the benefit to both staff and patients becomes ever more evident.

Aliyyah-Begum says: “It’s really important to the team at the centre that the robotics aren’t just seen as an add on.

“There is a lot of nervousness about robots replacing therapists, but our service is still very much therapy-led.

“What this means in practice is that, where a resident would previously have had maybe an hour of therapy time in an afternoon, now you have an hour of therapy time, and then you can carry on exercising if you want to, or carry on playing games with other residents.

“For example, one of our machines, the Myro, enables patients to play games like bat and ball, or perform virtual tasks like sweeping leaves.

“However, because it is all sensor-assisted, if it senses that the patient needs to work a certain hand, it will alter what it is asking them to do accordingly, while they won’t even necessarily feel they’re having therapy – it’s all part of the game, and part of their socialising with other residents.”

Askham Rehab forms part of the Askham Village Community, on the edge of Doddington village, in Cambridgeshire.

It provides specialist care for people of all ages, offering day visits, respite care and continuing long-term support, both on-site or at home.

The site consists of five homes, three of which are specialist neurological facilities. In total, the neuro-rehab team can look after up to 52 patients at any one time, with 120 staff made up of rehab professionals and specialists.

The team comprises carers nurses, physiotherapists, occupational therapists, speech and language therapists and psychologists.

Aliyyah- Begum believes that the introduction of the robotic rehab services, combined with the patient-led therapy the group has been offering for 30 years, can only enhance the centre’s outcomes.

She adds: “We know that there is an increasing number of care homes that offer specialist therapy, but the difference with Askham Rehab is that we have embedded it into the whole culture of our setting – and the outcomes really speak for themselves.

“We often discharge people earlier than planned, and that’s a testament to the fact that the patients are really working hard with the team throughout their stay with us to achieve their goals – and that is the key.”

For more information about Askham Rehab, visit www.askhamrehab.com

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Astrocytes identified as master ‘conductors’ of the brain

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In the orchestra of the brain, the firing of each neuron is controlled by two notes – excitatory and inhibitory – that come from two distinct forms of a cellular structure called synapses.

Synapses are essentially the connections between neurons, transmitting information from one cell to the other. The synaptic harmonies come together to create the most exquisite music–at least most of the time.

When the music becomes discordant and a person is diagnosed with a brain disease, scientists typically look to the synapses between neurons to determine what went wrong. But a new study from Duke University neuroscientists suggests that it would be more useful to look at the white-gloved conductor of the orchestra – the astrocyte.

Astrocytes are star-shaped cells that form the glue-like framework of the brain. They are one kind of cell called glia, which is Greek for “glue.” Previously found to be involved in controlling excitatory synapses, a team of Duke scientists also found that astrocytes are involved in regulating inhibitory synapses by binding to neurons through an adhesion molecule called NrCAM. The astrocytes reach out thin, fine tentacles to the inhibitory synapse, and when they touch, the adhesion is formed by NrCAM. Their findings were published in Nature on November 11.

“We really discovered that the astrocytes are the conductors that orchestrate the notes that make up the music of the brain,” said Scott Soderling, PhD, chair of the Department of Cell Biology in the School of Medicine and senior author on the paper.

Excitatory synapses — the brain’s accelerator — and inhibitory synapses — the brain’s brakes — were previously thought to be the most important instruments in the brain. Too much excitation can lead to epilepsy, too much inhibition can lead to schizophrenia, and an imbalance either way can lead to autism.

However, this study shows that astrocytes are running the show in overall brain function, and could be important targets for brain therapies, said co-senior author Cagla Eroglu, PhD, associate professor of cell biology and neurobiology in the School of Medicine. Eroglu is a world expert in astrocytes and her lab discovered how astrocytes send their tentacles and connect to synapses in 2017.

“A lot of the time, studies that investigate molecular aspects of brain development and disease study gene function or molecular function in neurons, or they only consider neurons to be the primary cells that are affected,” said Eroglu. “However, here we were able to show that by simply changing the interaction between astrocytes and neurons — specifically by manipulating the astrocytes — we were able to dramatically alter the wiring of the neurons as well.”

Soderling and Eroglu collaborate often scientifically, and they hashed out the plan for the project over coffee and pastries. The plan was to apply a proteomic method developed in Soderling’s lab that was further developed by his postdoctoral associate Tetsuya Takano, who is the paper’s lead author.

Takano designed a new method that allowed scientists to use a virus to insert an enzyme into the brain of a mouse that labeled the proteins connecting astrocytes and neurons. Once tagged with this label, the scientists could pluck the tagged proteins from the brain tissue and use Duke’s mass spectrometry facility to identify the adhesion molecule NrCAM.

Then, Takano teamed up with Katie Baldwin, a postdoctoral associate in Eroglu’s lab, to run assays to determine how the adhesion molecule NrCAM plays a role in the connection between astrocyte and inhibitory synapses. Together the labs discovered NrCAM was a missing link that controlled how astrocytes influence inhibitory synapses, demonstrating they influence all of the ‘notes’ of the brain.

“We were very lucky that we had really cooperative team members,” said Eroglu. “They worked very hard and they were open to crazy ideas. I would call this a crazy idea.”

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