The debate: Brain injury in the workplace

NR Times recently brought experts around the table to discuss the challenges and opportunities for brain injury survivors in the workplace and the changes needed to achieve a level playing field.

The workplace can play an integral role on the post-injury path towards independence.

But often, misconceptions about hidden disability among employers, and a lack of opportunities for individuals affected by ABI, contribute to challenges and barriers. NR Times hosted a debate involving representatives of a range of disciplines in neuro-rehab to discuss how the positive impact of working life on brain injury survivors can be maximised.

The panel

Alastair MacColl: “The workplace can play an absolutely fundamental role in the post injury journey towards independence and a fulfilling life, but it can also represent challenges. I’d like to ask each panelist what the challenges and issues are.”

Elinor Jordan-Bennett: “There are a lot of challenges. To start with there is a lot of stigma after a brain injury. When you look at it in terms of the individual returning to the workplace they have a lot of deficit after their injury depending on the role; things impacting on their concentration, over-stimulation, fatigue, retention. Depending on the nature of the injury, their personality could be quite changed too. If you are working with a lot of different characters in your workplace and you are now a disinhibited individual, that could really impact on your relationships in the workplace. Depending on the support in your workplace, that could have a negative impact.”

Dr Jyoti Evans: “Within the workplace, it’s really tricky because people with brain injury can sometimes present as walking wounded. On the outside they look really well, they’re walking, they’re talking, they look their normal selves, but internally the mechanisms that were once there have been disrupted. In the workplace, the biggest challenge is that differential – ‘the person looks like they used to, so why aren’t they performing like they used to?’

“That’s a key thing I’ve seen for people who’ve gone back to work post brain injury. Also, taking into account fatigue levels and how quickly somebody gets tired; the need for a bespoke job description, if that’s the way you want to put it, taking into account periods for rest. It’s difficult because employers want you to be productive. They understand people need breaks, but sometimes with a brain injury, a person needs more breaks or adjusted hours, or they do better at certain times of the day than others. So it’s getting that understanding of what a brain injury looks like, and how that will then impact the person you see in front of you, who looks the same, but actually their brain may not be functioning in the same way as it did before.

“The role of occupational health is really important in that. One would hope that occupational health would be able to have the right professionals on board to be able to help the company or the employer to get that person back into the workspace. For a lot of people with brain injuries, their biggest concern is, ‘am I going to lose my independence?’ They want to be able to work and have that sense of purpose. So I think the biggest challenge is employers potentially having that understanding of what the brain injury looks like for that person, and then what they need to put in place to help the person to do their job to the best of their ability.”

Barry Lehane: “One of the biggest challenges we come across is that there are so many different types of brain injury, the subtle brain injuries, the post-concussion syndrome, it’s such a broad area. It’s difficult for employers to make the reasonable adjustments. We’ve worked with people who’ve had very complex physical disabilities. In getting somebody back to work who’s in a wheelchair, the reasonable adjustments can be relatively easily made. You can put ramps in place and [so on]. With somebody with a complex brain injury, it can be really, really difficult.

“Part of the challenge from our perspective is that it’s not just getting them into work, it’s sustaining them at work. Are they still in work in six months’ time, or six years’ time? That can be really challenging. Within the litigation sphere and within case management, it’s about working very slowly to get to those goals and it’s about supporting the individuals.

“People’s work is a huge part of their identity. I think for all of us sitting around this group, what we do for a living is one of the first things you mention in conversation. You tell them what you do for a living. If somebody has sustained a brain injury, whether that’s catastrophic or a minor brain injury, it can be really difficult. People can struggle with their identity if their work has been affected.”

Steven Akerman: “From a litigation perspective, it’s very important that people work if they can. They have to prove their claim, and there’s always allegations of them being malingerers. As Jyoti said about the walking wounded, they look okay, and then they’re not working. ‘Are you really injured?’ Of course they are, but they look okay, so there are allegations of them being dishonest and fraudulent, because a very, very small subset of people can tar everyone with the same brush.

“We have to be practical in terms of whether people are able to do it, but we tell people even if they can volunteer, even if it’s unpaid, to [do it].

“We see how it can help with their treatment, their recovery and in feeling better about themselves. We always tell them to speak to their doctor and make sure it won’t make things worse. But assuming you can do it, volunteer as it shows that you’re willing.

“Perhaps they can’t do paid work as they are a bit unreliable because of the injury, which isn’t their fault.

“Volunteering by its nature can be more flexible and they can come and go as they please, and they can feel more fulfilled, instead of sitting at home all day, thinking about things and turning them over in their head, which can be counterproductive.

“We tell the family members to help their [loved one] but don’t overdo it, because they need [some] independence…We’re trying to balance it out, to do the best that we can in conjunction with doctors, OTs and whoever else we’re speaking to.”

Alastair MacColl: “What are the misconceptions that employers suffer from and how can they be challenged? And what role does education play in challenging them?”

Dr Jyoti Evans: “It’s not that employers don’t want to help their employees; I don’t believe that’s the case. It’s the misunderstanding. The difficulty is
that brain injury might be a very small population of an employee base within a company, and it can be really difficult to tailor things to lots of different people with different needs. But the role of education is really important, because it helps an employer to help their employee get back to work, to get back to that independence.

“A lot of people I speak to will say ‘I don’t want to be on benefits, I don’t want to be living from week to week not knowing whether I am going to be able to pay my rent or heat [my home] because I’m on X amount of money under statutory sick pay’. They want to be able to get back to work. A lot of people will try to do that, perhaps sometimes a bit quicker than they should, because they feel like they don’t have a choice.

“A part of that choice is about access to services. For example, the waiting times for community neuro- rehab, for psychology, is two years plus. People don’t want to wait two years for assessments and it’s tricky. Companies depend on external agencies to help them, because they want the experts in the field to help them, to help their employee. A two-year wait is a really long time, and so companies are a bit stuck as well.

Worried construction worker man at work

“It’s a system thing [in terms of] the awareness of brain injury and what’s out there to help people. It’s knowing what’s out there, because you can Google things, and there are things out there, but they may only work in X area of the country. So companies face as many challenges. For example, I had a lady who worked within a bank and was making slight errors here and there because she was so fatigued.

“The employer thought it was more of a conduct route, that the person was not doing their job properly. But it was the sheer fact that she was sat behind a counter for four or five hours without a break, and then fatigue set in. Once they understood that if this person could take a break for 15 minutes every two hours, they would get more productivity, the problem resolved itself. That understanding for employers is really important, but it’s also the understanding for the person, because people often want to push themselves, but they have to understand the importance of rest and fatigue on what they do.”

Steven Akerman explained how his own experience of fatigue as a teenager gave him an insight into how challenging it must be for a serious injury survivor experiencing fatigue every day in the workplace: “When I was 16 or 17, I was knocked out playing baseball [and] woke up on the ambulance stretcher, and for a week afterwards, I couldn’t function properly. I was tired by four o’clock in the afternoon and couldn’t move at the end of the day, and I was getting very bad headaches. Thank God, it only lasted a week, but I can only imagine how it must be for people to have that constantly who don’t get better.”

Barry Lehane: “Another education piece is for people to understand when they’ve had a brain injury. I grew up playing a lot of different sports, rugby, football and cycling, where there are subtle brain injuries that we’re now learning more about. If you turn up for work on a Monday morning [after] being knocked out on a Friday night [and] you don’t acknowledge that you’ve had a brain injury, in three months’ time, you could be being performance managed out the door, effectively based on capability [although] you sustained a brain injury three months ago and never acknowledged subtle changes in personality.

“There is a lot more awareness now of the importance of getting checked out [after a head injury] with organisations like Headway doing a lot of education.

“If employers can learn these things too then it can only help them to understand. [For example] ‘Jeff was playing rugby on Saturday, and was knocked out for two minutes. He’s fine but maybe we keep an eye on him’. Headway has a fantastic page on its website about work which is a really good tool that I use a lot with my clients.

“It’s [about] educating the individual and the employer.

“We also haven’t mentioned what happens if the head injury happened at work and you’re trying to achieve a return to work in the place where the injury occurred with all this other stuff going on from a litigation point of view.

“There’s a lot to think about and take on board.”

Steven Akerman: “If the serious injury happened at work it’s very difficult to return to work, just from a psychological perspective. There’s no bad faith on anyone’s part and employers do try but the individual just often finds it too mentally challenging.

“Say they’ve been there for 20 years, and then there’s a claim and the insurance companies get involved and defend it. The employee thinks ‘how can they defend it when they injured me?’ Obviously it’s not personal but they are asking for a lot of money, and they have to prove it, so it’s a very ugly process.

“It’s not personal but I understand why [the employee] can take it personally. Almost always, they will find work elsewhere, that’s just the way it is. If the injury happened outside of work, that tension isn’t there.

“Generally [employers] want to help but they may have other employees to take care of. If too many other employees have to pick up for the employee that has been injured, they’re certainly willing to help for a few months to let them get back on the feet and most people are generous.

“But there are so many other things to juggle [as an employer] not just this individual. Sometimes it doesn’t work out because the role needs something specific.”

Elinor Jordan-Bennett: “Echoing what everyone else has said, we have so many policies and procedures that when it comes to something out to the ordinary, it’s really difficult to manage that.

“When we’re looking at adjustments to returning to work, it can be quite unusual then for a brain injury survivor, and it’s about knowing what practices to put in place. Someone explained it to me that it’s like building a house of playing cards, because it’s such a fine balance. You can be going along and managing quite well for a while, once all these things have been put in place.

“But then something changes – the person’s job might change a bit, or the work becomes a bit too heavy, and then the house of cards falls down and you have to rebuild it again. That’s a really good analogy that someone explained to me [which] I use with some of my clients.”

Alastair MacColl: “What more can and should be done to support brain injury survivors at work? How can the situation be improved for both employers and those seeking to return to work?”

Dr Jyoti Evans: “From my point of view, the key element is vocational rehab. That’s a key thing for anybody who wishes to return to work. They can emulate the sort of stuff they might do at work and to see how you can do it and how best adjustments are made. But again, that’s accessing professionals in a timely manner.

“At the moment, the brain injury pathway out in the community, helping people to get their independence back, to get back to work, is difficult. It is dependent on major trauma centres and acute hospitals and the education people get there. It’s dependent on whether somebody is entitled to, or is in the right postcode area for, neuro-rehab treatment. So there are a lot of different systems and variables at play.

“Some of it comes from the government in terms of commissioning services, and some from the voluntary sectors who identify those gaps in the services to be able to help people to get back to work. If we’re thinking about how to best support people to get back into the workplace, because it’s so important to do that, we are talking about services like vocational rehab, community, neuro- rehab teams [and] the voluntary sectors where possible.

“There are different associations for different [conditions] and all of these associations provide a system-based treatment that allows the person to think about their work, their illness and how to move forward. Some parts of the country are rich in brain injury services, and some aren’t. People may not have the means and ability to travel 100 miles down the road to their nearest centre to be able to engage in rehab twice a week. It’s costly if you’re not working and have a brain injury. And so there are all these blocks in place for community support.

“This is something I am passionate about because from everybody I have spoken to in the last 15 years of being qualified, nobody wants to sit around. Everybody wants their independence back and to get back into work, they just don’t know how to do it. As professionals, sometimes our hands are tied, because we can suggest and recommend things, but if they are not available in that person’s locality, how do we then source [it].

“That shouldn’t be a block. There should be services and bespoke packages that are arranged for people, but in reality, how often does that happen? It makes me really sad that people aren’t able to get back into something that really gives them a sense of purpose and their identity and independence back. It’s not because they don’t want to, it’s because the services and the means just aren’t available.”

Barry Lehane: “The importance of vocational rehab cannot be overstated. It is so essential. I’m coming from the perspective of a case management company. We generally deal with people with a personal injury case, so that funds a lot of the vocational rehab.

“When I started in case management 12 or 13 years ago, one of the big struggles was talking to people about work. People were more likely to ask a question about their sex lives than they were to talk about their employment, which was really strange, thankfully that’s moved on.

“The importance of vocational specialist case managers is really important; there are some fantastic people doing great things and some amazing, experienced vocational case managers who specialise in brain injury work. Once you get to the level where there are new jobs or new training requirements, if you bring in specialist vocational rehab, you can spin gold really.

“You can achieve great things. A lot if it has to do with the fact that people are surviving brain injuries that five years ago they weren’t. That’s brilliant but it brings challenges.

“There has been such a huge tie between working and benefits that has been almost conditioned into us as a society.

“If someone isn’t working, they’re drawing benefits and that can have a detrimental impact on their wellbeing and self-worth.

“When you talk to people who are getting back to work, it’s about getting across the importance of work to them. I’m sure we all have bills to pay, and that’s quite important.”

Alastair MacColl: “It’s great to hear your passion for this topic and for improving things Barry and Jyoti. Are there any more things that can and should be done to help people with brain injuries in the workplace?”

Elinor Jordan-Bennett: “As an occupational therapist, I couldn’t advocate any more for vocational rehab. Giving a person that sense of purpose and identity and finding some meaning is so important. We have clients with a range of abilities and potential for rehab within our service. One gentleman that stood out to us had been plastering when he fell off some scaffolding.

“As soon as he was able to, we had him helping our maintenance team. In the end, he was seeking out jobs, and he was probably a bit of a team lead for them. He eventually went back to work self- employed. He went from not being very motivated day-to-day to finding that purpose. Finding those opportunities for people is so important. As Jyoti said, there is a vast difference in different areas
and it is very much a post-code lottery. Sometimes we have to be very creative in how we can find these opportunities.

“Across Elysium we have different services making job descriptions for our clients. If we can’t have someone going out to work, we will create those opportunities here. Even if it’s something such as making a newsletter or working as a gardener, we’ll find those opportunities and get them out to somewhere like Headway as well.

“It can have a detrimental impact on their wellbeing and self-worth”

Alastair MacColl: “Steven, is legislation and jurisprudence keeping up with the needs of brain injury survivors in the workplace?”

Steven Akerman: “The new government’s Employment Bill will be helpful in the sense that people have more protection from day one, in terms of flexible working and unfair dismissal. While not addressing brain injury specifically, this will be a good unintentional consequence. If people start a job and they realise they can’t cope, and they fully disclose their condition, they may need flexible working.

“They want to work and carry out their responsibilities and aren’t trying to get out of what they signed up to do, but they just want to make it work – and so [the new bill] could be very positive if utilised in the right way.

“As solicitors we just step in where unfortunately there is a shortfall with government agencies. We try to get private funding to fill those gaps as part of the claim. It’s not always easy because different doctors and occupational therapists will say you need different amounts of help. There is a ceiling even in the private sector. They are not going to fund things forever with a blank cheque, but we try to fill the gap where we can. It’s in the interest of the insurance companies to get treatment early as the earlier the treatment, the better the prognosis and the more likelihood of an improvement.

“We try to pull at that string and say to the insurance companies, ‘give this person £100,000 so they can get a very expensive treatment, that in the long run will save you multiples of that’.

“If the person gets better, there’s less loss of earnings and future care claim. I always tell people I hate talking about them like a number, but sometimes that’s the best way to deal with insurance companies for the best results.”

Alastair MacColl: “Are there any examples of innovation in terms of supporting the brain injury community in the workplace, whether that’s technology related or through new approaches?”

Barry Lehane: “Industry has changed so much since March 2020 in every one of our sectors in terms of working from home. Flexible working, which is in the new government legislation, opens up a lot of opportunities for people. Our company is in Derby and I live in Northumberland and our case managers are all over the UK.

“We can have daily or weekly meetings with no problem.

“This opens up opportunities for people with brain injury. They can rest in their home environment if they need to, whereas that might not be possible in a chaotic office environment. It’s about embracing this opportunity and making sure it works for them. Are you working from home or living at work? It’s important to get that balance right.

“In terms of innovation, Zoom and all these other platforms have made a huge difference.”

Dr Jyoti Evans: “Hybrid working is quite helpful too. The ability to work from home is important, but then there are the social elements of being out at work with your colleagues, even if it’s for half a day or a day. We don’t want to live in a bubble of just being at home and not around other people, because that social interaction we have with our colleagues is really important.

“We don’t want to live in a bubble, always at home and not around other people. But working from home certainly has made a massive difference.

“If you can’t drive because you’ve had a head injury, working from home is perfect; but it’s also important to recognise from a psychology point of view the [importance of] the connections, interactions and relationships we build with our work colleagues.

“A lot of companies have their own platforms they work on with their own secure servers where you can access everything you need to.

“That’s really innovative because once upon a time, even in the NHS, you would have to go to work to do some things, whereas now, if you just need access to the note system to write a report, you can do that in the peace and quiet of your own home.

“Within the brain injury environment, there’s a lot of new technology coming through. RehaCom [a cognitive therapy system] is one I’ve used. It does a full assessment of a person’s cognition.

“It’s very intuitive and devises a programme that recognises deficits – and the person can do that from home, they don’t need to necessarily come into a unit or a hospital to have their treatment.

“Once upon a time, I would only be able to do cognitive assessments face-to-face.

“Now, a lot of the new assessments we use and buy as part of their gold standard can be administered remotely. That’s really helpful for those people who can’t get to you, so the advancements are there, we just need to keep going with them, but to not forget the social element as well.”

As the debate nears its conclusion Steven Akerman summarises optimistically: “I think people are becoming more aware [of brain injury in the workplace] and the key is to just try to work with employers, not against them. Most people are amenable. If it can work, they’re going to make it work.”

Alastair MacColl: “If you could change one or two things to make the workplace experience more positive for people with brain injuries wanting to return to work, what would they be?”

Elinor Jordan-Bennett: “Flexibility is one of the key things. And for myself as a clinician, when the person is coming through their pathway from the acute phase to the rehab phase, to always be mindful within the referrals that that person might want to return to work and that it might be a realistic goal. So always having that at the forefront of people’s minds.”

Dr Jyoti Evans: “For me the key thing is being able to access the appropriate services in a timely manner; being able to access community rehab and vocational rehab is really important. This is hopefully something the government is working on. I know they are working on a new brain injury document so I am hopeful that they’ll recognise that there are gaps within services that are provided. A second thing that would also help is educating employers on misconceptions. For example, that a phased return for brain injury is similar to other conditions – sometimes it’s not.

“It’s about taking into account the cognitive element and not thinking ‘once that phased return is done, we’ve done our job’. But sometimes people need that little bit more adjustment over time, because other things crop up. So working with companies, getting them to understand, but then on the other part, working to get services there, I think those are two important things.”

Barry Lehane: “Waving a magic wand, it would be to have greater awareness within communities about brain injury. We don’t have many celebrity endorsements for brain injury and it is still very much a hidden disability.

“It’s obviously a very binary thing – ‘they’ve had a brain injury, but they’ve survived, and that’s fine’. Whereas, if we had more of an awareness of the impact of brain injuries and individuals across society, that would definitely pour down into workplaces.

“There’s some amazing work going on to educate and on public awareness, but it’s not there yet. I think if we had a greater understanding, people would be more understanding of their co-workers and employees.”

Steven Akerman: “I think it would be to have a clear document about how people are affected, and what things employers or people helping them can do to ease their transition back into a more mainstream life.

“I’m not talking about a booklet, just something concise with a page or two with the bullet points that will help them ease back into society. One central document with the NHS on it so people know it’s legitimate and carries weight, would hopefully help.” •