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Rugby’s battle with concussion threat

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Addressing the challenge of concussion in rugby is like a skirmish with the marauding All Blacks. Hazards emerge from every angle and each advancing metre is hard fought.

Leading the line is Dr Simon Kemp, chief medical officer at English rugby’s governing body the RFU and a former physician to the England squad.

With his involvement, the game has made significant progress in improving its handling of concussion in recent years, but the battle is far from won.

“Concussion is just about the most difficult sports injury to diagnose and recognise because it can present in so many different ways,” he says.

“It can lead to two or three seconds of unconsciousness with no signs or symptoms afterwards – or can present with somebody who develops a headache over the course of four to 24 hours, for example.”

Custodians of the game are working on several fronts to better prevent, manage and understand concussion at every level, from schools and grassroots to the top tier.

Like football, American football and boxing, rugby must also answer difficult questions about its long-term impact on the brain.

This follows revelations about links between football and NFL to CTE, the progressive degenerative brain disease caused by repetitive brain trauma and associated with dementia.

Long term study

Kemp (pictured above) says: “Sport in general needs to answer the question of whether there is an association between playing sports
 and neurocognitive decline.

“It’s a difficult question to answer because, as we age, we all see neurocognitive decline, which is one of the reasons for the limited amount of evidence around to date. We acknowledge that there may be an association [between rugby and CTE] but the reality is that the available evidence is limited and conflicting.

“Unlike some other sports, we do actually have a long-term study underway, involving 205 ex-rugby players, most of whom were England internationals. Rugby has been pretty upfront about this issue.”

The RFU is working on the study with 
the London School of Hygiene & Tropical Medicine and researchers from Queen 
Mary University of London, The Institute
 of Occupational Medicine, University 
College London and Oxford University.

It is backed by £450,000 in funding from The Drake Foundation, which supports sports concussion research. Results are expected to be published next year.

Detection improving

At the last count in 2015/16, concussion accounted for 25 per cent of all match injuries in the English professional game, up from 17 per cent the year before.

But the sport is not necessarily becoming more dangerous – heights and weights of players have remained stable since 2002, after an initial surge when the game turned professional in 1996.

Rather, Kemp puts rising concussion rates down to greater recognition of the condition.

“In the professional game, reported concussions have been going up dramatically over the last five years but all other contact injuries have remained stable. We think
 the rise is because we are much better at recognising it.”

This surge in reported concussions corresponds with the establishment of World Rugby’s Head Injury Assessment 
(HIA) tool, which underpins concussion management in the elite game.

It consists of a three-step process of assessment for any player suspected of sustaining a concussion.

The first stage involves 11 immediate and permanent removal criteria relating to factors such
as consciousness, balance or behavioural changes.

“The player absolutely does not go back onto the pitch if any of these criteria
 are met,” says Kemp.

An off-field screening tool, pitch-side video review system and evaluation by an attending doctor are also involved at stage one.

Stages two and three cover tests and assessments for early signs of concussion, within three hours of the match, and delayed signs, after the player has had two night’s sleep.

The protocol was introduced in 2012 – a year in which an estimated 56 per cent of players later deemed to be concussed stayed on the field.

The latest available stats, from 2015/16, put that figure at nine per cent, with the fourth version of HIA now in play. 
As often happens at the intersection between much-loved sports and newly installed regulations, the HIA protocol has attracted some criticism.

And, despite its continual improvement via updated versions, it cannot protect against every concussive incident in every match.

Lessons to learn

Last year Northampton winger George North was allowed to return to the pitch at Leicester, despite having appeared to lose consciousness.

A review found there was enough evidence from footage of the incident, together with North’s history of concussion, to have kept him on the field.

It accepted that Northampton’s medical team acted in the best interests of the player, however, since it had not seen all the available video footage due to
 Wi-Fi problems.

Rugby’s response was swift. The Concussion Management Review Group drew up

nine recommendations, which were implemented by Premiership Rugby.

They included ensuring a pitch-side video reviewer remains in their allocated seat and has backup to make sure video feeds are monitored continually.

Various Wi-Fi protocols and a stipulation that medical rooms should have hard-wire video feeds were among other measures.

Former World Rugby medical adviser Dr Barry O’Driscoll said at the time that the episode showed: “The protocols are totally unfit for purpose. Time and again they are putting brain damaged players back on the field.”

O’Driscoll quit his role at World Rugby in 2012 in protest at the way concussion was being handled.

In the absence of a proven and objective, single pitch-side test for concussion, Kemp insists the HIA system is performing well
in terms of protecting players.

Official data backs this up; in 2015/16, 98.5 per cent of head injury events in the Premiership were managed according to the protocol.

“HIA has evolved since 2012 and it really is pretty sophisticated now. The tools that we

have to identify concussion are of real
value, but they are, of course, subjective.”

Should an accurate, objective pitch-side 
test emerge, Kemp envisages it being embedded into HIA protocols, rather than replacing them. Such a test might be based on saliva samples, if trials taking place this season in the Premiership and Championship are successful.

Conclusive testing

The study, being carried out in collaboration with the RFU, Premiership Rugby and
 the Rugby Players’ Association, will run throughout the 2017/18 season and is the biggest of its kind in the history of UK sport.

Birmingham University, led by neurosurgeon Professor Tony Belli, has spent the last nine years working towards a test that measures biomarkers present in the saliva and urine of players.

If validated, it could be carried out on a hand-held device, which is currently under development.

Professor Belli says: “If these biomarkers are found to be reliable, we can continue our work with industrial partners with the hope of having a device available within the next two years that will instantaneously diagnose concussion on the pitch-side with the same accuracy as in the laboratory – a major step forward for both sport and medicine.”

While rugby works towards a fast, watertight pitch-side concussion test, what other interventions might minimise the risk 
of brain injuries in the game? NFL or amateur boxing-style head guards are often suggested, perhaps by those uninitiated with the medical implications of contact sports.

These, says Kemp, would be pointless in relation to head injuries.

“Rugby headgear can protect against head lacerations and cauliflower ears but there aren’t any helmets in sport that have been shown to protect against concussion.

“They can prevent skull fracture, but not the rotational, acceleration and deceleration injuries that are associated with concussion.”

One safety measure which has been adopted by the professional game recently is an increase in the sanctions players receive for tackles made over shoulder level.

In January 2017, the minimum on-field sanction for a reckless (high) tackle was upgraded to a yellow card with a maximum of red, while the minimum on-field sanction for an accidental (high) tackle is now a penalty.

“We are already starting to see more penalties and yellow cards as a result, so referees are definitely implementing it.”

Time will tell whether this heightened threat of an early bath or time in the sin-bin leads to a reduction in concussion rates.

Essential education

A longer-established part of rugby’s concussion prevention strategy is the

training course delivered to all players and backroom staff at every club in English rugby’s top two divisions.

The club doctor at each of the 24 clubs 
runs an hour-long concussion session, with mandatory attendance for every member
 of the playing, coaching and support staff.

Around 1,300 people have now been through the course since its launch in 2014.

“It has transformed the way players understand concussion. They are really well informed about what it looks like, what it feels like and why they need to come off.

“The course also talks them through what the potential consequences are.

“In the short term, if they stay on the field, they have an increased risk of further 
injury, their performance goes down and their symptoms are likely to last longer.
 We also talk about the potential long-term consequences.

“We don’t know exactly 
what they might be, which is why it is so important to get across to players why they need to be removed in order to recover and return safely.”

At amateur and age group levels of rugby, concussion education is not mandatory, but plays a crucial role in protecting players.

The RFU runs online courses and offers a wealth of resources to school and community teams through its Headcase initiative.

They include advice, assessment tools and changing room posters with the slogan “DON’T BE A HEADCASE, STOP! CHECK FOR CONCUSSION”.

Tens of thousands of people have undergone training via the scheme since it was launched in January 2013.

The grassroots campaign advises anyone involved in the game to; ‘Recognise, Remove, Recover, Return’ and Kemp says the message is hitting home.

“Evidence suggests that the simpler
 your message, the more likely it is to be remembered. We’ve been working hard around the Headcase resource to achieve this, including through the commissioning 
of a video animation which has gone down particularly well with teenage players.

“The message is getting through but it needs to reach millions of people and it hasn’t got to everybody yet. We also need to consider what is rugby’s responsibility and what is that of the departments of education and health.

“Our principle responsibility is to get the message to coaches, players and parents.

We can help in terms of getting the message out to GPs, emergency doctors and teachers but we do need support from government departments, which, in fact, we have very good relationships with.

“Also, concussion advice to teachers needs to be consistent across sport, which is why we’re working with other sports and our advice is aligned with soccer’s for example.”

Schools must adapt

An important element of the RFU’s work with schools is providing guidance on what happens after a concussion.

“If a pupil sustained a concussion on a Saturday and still had a headache on the Monday, they shouldn’t be back into a full school programme.

“We have been working with schools to help them understand that they may need to make some academic adjustments as the pupil recovers from the injury.

“This is a big task but schools are increasingly receptive. Some independent schools with big rugby programmes have even developed an approach to player recovery that looks very similar to that of professional clubs.”

In concussion prevention and management, the amateur and schools-levels of rugby take their lead from the professionals.

“Concussion is the same injury in professional, community and age group rugby. But the way it is managed varies because of the different resources you have. The principals are the same however and are consistent with the science [of concussion].

“How concussion is managed at the professional end drives how it is managed at the community end.

“So it is incredibly important in the professional game that we recognise and remove players with suspected concussion and do not leave them on the pitch. By doing so, we send a message to the community and age group levels.”

Further protection for young people comes via a lower threshold for leaving the pitch, and a slower return to play.

“Schools rugby doesn’t have video evidence, but does have the coaches, parents, teachers and other players all alert to the possibility of concussion and players coming off.”

Young players also experience a gradual increase in the level of contact permitted in their game as they get older. Full contact rugby is not played until players turn 15, a strategy which also protects players from head injuries, says Kemp.

Exercise may protect young people

New measures could further protect young players, meanwhile. Recent research 
from the University of Bath found that a 20-minute exercise programme for young rugby players to improve their strength and balance could help to reduce concussion injuries.

A study, involving 14 to 18-year-olds across 40 schools, found 59 per cent fewer concussions in schools that completed the exercises three times a week, compared to those that didn’t.

The exercises focused on increasing neck muscle strength, balance and movement. The RFU is rolling out the programme in schools in England
 this season.

Other researchers suggest the game should go even further to prevent concussion in school rugby.

A Newcastle University study, published in July in the British Journal of Sports Medicine, re-examined existing evidence on the rates and risks of injuries in sport.

It cited “strong evidence” from Canada that removing the “body check” from youth ice-hockey, where a player deliberately makes contact with an opposing player to separate them from the ice-puck, led to a 67 per cent reduction in concussion risk.

The report drew parallels with rugby and urged a ban on tackling in the youth game; although another recent study in the same journal suggested concussion risk in youth rugby is no higher than in other sports.

Kemp urges balance when considering the risks and rewards of young people playing rugby.

“You have to look at both the sport’s benefits and negative elements. The reality is, at a time when our children are becoming increasingly sedentary and heavy, the place for physical activity in sport is increasingly valued.

“One of the important points about rugby is that it’s a game for all shapes and sizes. The shorter or less mobile child who might not get a look in in soccer, may have a place on the rugby team.”

Yet, despite rugby’s obvious health benefits, is there a danger that officious head teachers might still be tempted to avoid any rugby-related risks completely?

In the US, where American football is
still reeling from revelations about links to early-onset dementia, non-contact, ‘flag football’ is reportedly replacing the pigskin in some schools.

Non-contact forms of rugby are already in existence here, but Kemp sees no signs of 
a drop in appetite for proper rugby among young people.

“Clearly as we become more aware of injury risks, it might change how schools review individual sports, but at the moment the uptake of rugby in schools is significantly growing,” he says.

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Interviews

We’ll be soaring again soon

It’ll take more than a global pandemic to stop Accessible Dreams drawing up plans for more empowering trips in the not-too-distant future, as NR Times reports.

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Two of the most powerful ingredients of Accessible Dreams’ work are the very things that are restricted right now.

Travelling to exciting horizons, and being able to hang out with friends new and old once there, are at the heart of the experiences the group creates.

And at the time of writing, one is currently impossible from the UK, while the other is enabled only in a world of separation, screens and clever apps.

But Nicola Cale, who runs Accessible Dreams, sounds surprisingly chipper when NR Times calls her.

Partly, she’s been bowled over by the enthusiasm and ingenuity shown by people in the group’s vast social ecosystem in staying connected and supporting each other.

But also, it’s given her a chance to reflect on the importance of the organisation’s work – and she can’t wait to help more clients onto the adventure trail with renewed vigour soon.

Accessible Dreams welcomes people with serious injuries and often complex disabilities into life-changing overseas experiences, like skiing, surfing and safaris.

Many individuals it works with would otherwise have given up on the possibility of such adventures because of the challenges created by their condition or injury. In reversing this, magical things can happen.

Nicola, who runs the organisation alongside fellow director William Sargent, says: “Going out and being in a different environment stimulates the brain differently. Being on the mountains, for example, already changes your outlook, so if you have a brain injury or disability and your world’s become a lot smaller, to change your environment is really important.

“So too are the opportunities to socialise with others in a group which looks beyond disability.

“Making friends with other people who may be struggling with different challenges in life can be empowering and help clients to better deal with their own difficulties.”

​Through its annual trips, Accessible Dreams enables people to rediscover, or even discover for the first time, the social benefits of group travel and exploring the world alongside the challenge of the physical activity.

“The main thinking behind it is to show them that life can be good again. While a person might not be able to ski or surf in the same way they used to, we want to help them discover they can still do it.

“We’re not focusing on disability, we’re looking at what we can do, what can be possible. We want to show people that their dream is accessible and make adventures which are often assumed to be beyond reach become reality.”

Coronavirus travel restrictions unfortunately led to the group’s annual safari trip being postponed, although Nicola is hoping surfing can still take place later in
the year.

And, with skiing still scheduled for February and March 2021, planning and the search for new opportunities behind the scenes is in full flow.

The three services offered by Accessible Dreams – organised trips, helping people to plan their own holiday and supplying a crew member ‘chaperone’ to join a holiday – are still proving as in-demand as ever.

Despite all future travel being clouded in uncertainty, Nicola believes the current enforced isolation has only galvanised people in their desire to see more of the world.

“I have a theory, I can’t prove it, but it’s a theory of mine, that good brain chemistry can build new neural pathways. If you’re stressed and your daily routine
is the same all the time, you’re not making new connections in your brain, whereas if you’re going out doing new things, your senses are heightened.

“So it’s important that we continue to focus on that huge difference travelling can make and look to the future to get our plans back on track for later this year and next year onwards.

“Taking people on holiday, or using our resources and connections to help is absolutely something to look forward to and be excited about.”

Over the course of the many trips organised so far, Nicole has witnessed a steady stream of success stories from people who have fulfilled personal dreams, while changing their outlook on life.

On the most recent skiing trip, which saw 66 people visiting a French ski resort, a man who suffered a brain injury several years ago, which left him with very limited powers of communication, went skiing for the first time since his injury.

That huge achievement was compounded by the fact his support worker and friend was also able to join him.

“This particular guy used to be in the Army and we knew he was an adrenaline junkie before his brain injury.

“So we arranged for him to ski down the mountain in a sit ski. We found out that his support worker used to be in the military with him, so we arranged for him to go in a sit ski too.

“That was a special moment. It’s a cliché but you could see him light up, he was visibly brighter in his eyes, and also more upbeat afterwards.

“We also have a blind man who has now been on four ski trips with us and has learned to ski standing up. It’s incredible that he’s learned this new skill.

“That feeling of exhilaration, the speed and perception of danger – even though in reality it’s the safest it could be – has a really special impact on people.”

While the trips are primarily for the benefit of the person with the serious injury or disability, they can be equally important for family members and support workers too, says Nicola.

“You can see sometimes they’re a bit nervous about going on trips, so that’s why we offer the range of services we do, either arranging the holiday, helping to arrange someone’s own holiday, or having someone to send with you.

“Seeing a loved one being able to ski or surf and seeing the difference that makes to them, can be very emotional.

“I had one lady recently tell me that going on one of our trips with her son helped her to let go a little bit as a mother and to realise that people really did care – and that it was OK for her to take a step back. I thought that was brilliant.

“Her son also said about travelling as a group, ‘We went as strangers and came back as friends’ and that’s exactly what we want to achieve.

“We see it as building a community of people who have mutual experiences and common loves, and we have set up a WhatsApp group for people who are travelling so they can keep in touch afterwards. That’s been a really nice more recent addition to what we do.”

Each trip organised by Accessible Dreams is meticulously planned according to the bespoke needs of the participants.

“We want to take people to places that are unusual and appealing, but on a practical level, we make sure that whichever adventure we go on, there is a great hospital or medical centre nearby, and of course make sure the resort we go to meets our needs exactly.

“The ski resort in France we visit now knows us. They’ve got great resources, but we’ve also made sure their ski instructors are clued up on brain injury and have taught them about brain injury awareness.

“Also, we add in other aspects which are tailored for the group, such as having a rest day after a travel day.

“These are the sorts of things that package holidays don’t really factor in. So we might make a holiday for ten days instead of seven to allow some extra time getting over fatigue.”

Plans are also underway for trips, including those within the UK, that provide a more relaxing alternative to adrenaline-packed holidays.

Nicola is also hoping to arrange high-octane day trips as soon as the COVID-19 restrictions are lifted.

“If someone wanted to do a skydive, for example, we could look at that.

“There are also opportunities for cycling or walking holidays closer to home and we’ve got links to some adapted properties in the UK which could help with that.

“Also, we ran a fantastic ‘sensation’ vacation to France, with some alternative therapists joining us.

“We had good food, aromatic essential oils and all kinds of other things that indulged the senses of taste, touch and smell. That’s something we could look at doing in the UK once we’re allowed to move around again.”

Accessible Dreams has long been in the business of overcoming seemingly unscalable barriers. It looks like the current crisis will be just another challenge it rises to and ultimately leaves for dust on the road to another adventure.

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Interviews

The MS secret that sparked a movement

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“It’s not the cards you’re dealt that matters, it’s how you play them that counts.”

For Jessie Ace, this is a mantra that inspires her every day.

It has helped her overcome her career dreams and confidence being shattered by her multiple sclerosis (MS) diagnosis, and underpins the positivity that now enables her to inspire so many others with chronic illness around the world.

Through her DISabled to ENabled podcast, Jessie has built a global following of people who turn to her for inspiration, after turning around her life and outlook since being told she had MS at 22.

When the news was delivered, she had just graduated from university, was embarking on a career as an illustrator and had even clinched a book deal.

“I suddenly felt I had lost my purpose,” she says. “I had a degree that meant nothing, the business I’d spent two years painstakingly building up was gone, and I couldn’t be an illustrator which was my dream and what I had loved doing since I was a little girl.

“At first I woke up one morning paralysed down my left side, completely out of the blue, but then later I lost use of my right hand too.

“It was the worst time of my life. As a student, I had these ideas that great things were going to happen, but then it was all over.”

Then came the bewildering search for answers.

“The worst part was not knowing where to turn, or who to turn to. The lack of information about MS in general was really bad, but there was nothing for young people, nothing for a young person to relate to who had just been given this devastating news.

“I knew nothing about MS and the doctor who gave me my diagnosis just told me to Google it.

“There wasn’t even a leaflet, or any advice, recommendations on who to speak to, nothing.

“As you can imagine, I found every negative story there was through my searches online and it was very scary.”

Finding other young people experiencing what she was going through also seemed impossible.

“There are local MS support groups out there, but that did not feel like the place for a 22-year-old to be.

“Everyone else there was much further along in their MS journey, people were in their 50s and some were in wheelchairs, and the outlook immediately became really scary.

“The idea of what I thought my future would be really freaked me out and I became really depressed about it.”

Determined to get on with her life, Jessie took a job as a glass collector in a local club, then went back to university as a student ambassador, before finding a job as a graphic designer in fashion. But all the while, she kept her MS totally to herself.

​“I didn’t tell anyone. You would look at me and think there’s nothing wrong with me as I don’t look ill. That is the thing with hidden illnesses like mine.

“I didn’t want to be pitied, or for people to make judgements, or to say ‘don’t lift that chair’. I just wanted to be me.

“I realised that the five people closest to you can shape your outlook and those around me gave me the support I needed.

“When you have a bad day, to have people close to you telling you that you can do this, you can get through it, tomorrow will be better, is so important.

“I also came across a book called ‘The Miracle Morning’, which helped me to build a positive mindset. My whole perspective on life began to shift.”

Spurred on by her wish to help support young people in her position, and with her new-found positive approach, Jessie began to share her experiences online.

“The way I got started building my confidence was by sharing my story on Facebook Live videos about four years after my diagnosis, while working on a wedding business. I’d never told anyone really about my diagnosis, so that was a scary thing for me.

“I mentioned on a video one day that I had MS and the response astounded me.

“Brides-to-be started asking for my advice for how they could navigate their wedding day with an invisible illness, how they could ‘pretty up’ their wheelchair or even how they could disguise their oxygen tank into their wedding dress.

“Before I knew it, people began reaching out to tell me about their illnesses.

“They said they had not shared their stories with anyone before, because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illnesses.

“That was when I realised that my story was bigger than me and that my experiences could help people.” From there, Jessie’s podcast was born, alongside a Facebook group inspirationally-titled ENabled Warriors, which helps newly diagnosed people and provides a forum for those who don’t feel like they fit in with traditional groups.

Through its uplifting approach, thought-provoking content and often celebrity guests, the DISabled to ENabled podcast has become a hugely popular outlet for people young and old, with a loyal and growing following across the world.

“It absolutely makes my day to hear from someone that the podcast has helped them. I have been where many of them are, where they feel it is the end of everything, but sometimes it is just knowing that someone understands, and is there, that can make all the difference.

“Most podcasts like this are American, and I know a lot of people like that we are in the UK.

“Changing the support available for young people with MS is something I feel very strongly about, and we do have a lot of young people who interact with
us, but also a lot of older people too.

“I think for older people they perhaps haven’t had the chance to access something like this, so I know it has been welcomed.

“I want to help people have the confidence and the voice to share their experiences and their stories in the right way, as I know from my own experience how much this can help.”

Jessie, 29, is also teaching people how to make their own podcasts and plans to create a course which helps people to express themselves through writing, social media and the global online community.

She is also about to launch a book for people to use as a diary and planner, to keep a record of relevant information for themselves and medical professionals.

“I’ve created this for people to keep track of how they feel, their medication, hydration and the exercise they’ve done and there are daily sheets to complete.

“This can be really valuable to take to hospital appointments or your healthcare practitioner, instead of having to remember what you did on this specific date, you can have a record of it. It will hopefully lead to more productive appointments and outcomes,” she says.

“I have also taken inspiration from the book that helped me so much, The Miracle Morning. You can visualise how you want your day to go and the person you want to be.

“There are a series of ‘I am’ statements which can help shape your whole outlook for the day – to keep in mind that ‘I am confident’ or ‘I am full of energy’ can help you adapt mentality and give you a renewed focus, instead of thinking you are tired or today isn’t quite what you’d hoped.”

Having established herself as a prominent MS campaigner, Jessie has also become a writer and illustrator – reviving the dream she thought was lost – for many of the world’s biggest MS charities including the National MS Society, MS Society UK, Shift.MS and MS-UK.

She has also illustrated for Momentum magazine, MS Matters and New Pathways. From the dark days of her diagnosis, for Jessie, the future is full of positivity.

“When I was first diagnosed, I didn’t cope. I believed my life was gone. But now, it does feel great to be able to share my experiences with people who are just as scared as I was, and show them there is a way through, you can do this.

“Anyone who knows me will tell you I love quotes, and one that really resonates is ‘It’s not the cards you’re dealt that matters, it’s how you play them that counts.’ I think that’s really important.

“Having MS is not the end of anything, although it may seem it, and you are still capable of doing absolutely anything in life. Sometimes you just have to be a little more creative to learn how to do it. Once you get past that, don’t take ‘no’ for an answer.

“Never let anything stop you from what you want to do.”

Listen to Jessie’s podcasts at https://mmini.me/dtepodcast. Her book and planner will also be available via the website https://mmini.me/blog following its launch in April.

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Interviews

Working your way back after injury

Returning to work after a brain injury can be a long and daunting road. Here brain injury survivor Dean Harding discusses his own experiences with Irwin Mitchell employment lawyer Emilie Cole and occupational therapist Mandy Richmond.

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After being assaulted in 1998, Dean Harding’s life was turned upside down. Years of rehabilitation followed to help him cope with his traumatic brain injury. But the world of work seemed a place he would never return to, believing that he “wasn’t capable”.

However, the birth of his son 17 years later changed his whole outlook on life.

“I didn’t want him growing up thinking, ‘why isn’t my dad working?’,” remembers Dean.

“Most people work, or they’re supposed to. It gives me a sense of feeling like a ‘normal’ person, although I’ve still got my disabilities.”

Dean was given a job as a peer support worker with Headway London; helping other people whose lives had been affected by brain injury.

The fact he was now in employment also enabled the purchase of his first house. For Dean, providing for his family in this way, and overcoming his own personal battles, were huge achievements.

“Because of the disabilities, it’s portrayed that you’re useless, you can’t do anything. I don’t know if he was trying to kickstart me into doing something, but my neurologist said I would never have a meaningful job. To me I’ve now got a meaningful life, so I sort of blew him out of the water,” he says.

Emilie Cole, (pictured above, to the left) an employment specialist with Irwin Mitchell, says the ability of someone with a brain injury to secure a job which also takes into account their needs and requirements, is a huge boost.

“The psychological element is probably more important than anything else, that sense of being purposeful, productive and contributing towards society,” she says.

Dean agrees. “I feel more normal. I feel like a member of society. So I can join in conversations where people are talking about work. I just used to sit there and I couldn’t get involved in the conversation because I didn’t work. And now I can get involved.”

Through her role as an occupational therapist, Mandy Richmond works with many people with disabilities to encourage them to return to some form of vocation.  

“I think the best is if there’s a fit between the individual with a disability and the work itself.

“So to me, if there’s a right fit, the psychological benefits would be amazing. If there’s the wrong fit however, if the hours are too long, if their start time is too early, that person with a disability can actually feel under pressure.”

Emilie believes being honest with a potential employer from the first dealings with them is an important place to start.

“I always advise clients to be open and honest and disclose their disability from the outset, then you can talk about what reasonable adjustments you need to support you in the interview and application processes, because legally under the Equality Act you’re covered as an applicant. 

“So not just once you’ve got the job, but also if there were things that need to happen in the interview and with the way the application form is set up to make it easier for you to have a successful potential application, then you should communicate that. And luckily most employers seem to be quite good at that initial stage, in my experience.”  

Once a person with a disability has secured employment, their employer, through the Equality Act, has a duty to make reasonable adjustments to support them in the workplace, to remove any substantial disadvantage they face.    

Emilie says: “Often it’s essentially an objective decision. What tends to happen is that occupational health will be involved, medical professionals will be involved, but it will unfortunately come down to the employer to look at what those adjustments are and whether they can reasonably action them in terms of the workplace.

For example, things like a staged return, later start time, earlier finish, breaks, all of that. That should be reasonable in any workplace, quite frankly. The difficulty is sometimes the mismatch between an employer understanding or taking on their responsibilities under the Equality Act and actually doing them to the benefit of that individual.

“Legally once an employer is on notice of your disability, then they have to make reasonable adjustments. But in real life, employers actually expect you to tell them what you need. So if you put it in writing and make it very clear to them what changes need to be made, they’re going to then look really bad if, in six months’ time, they haven’t made those changes.

“And unfortunately that’s where I will frequently come in and try and persuade them as best I can, and often we are able to do that. Sadly in some circumstances we can’t, and that’s where we end up going to the Employment Tribunal.”  

Dean can understand such a situation from his own personal experience.

“From a brain injury perspective, you don’t want to be told you can’t do something. There are many people who have just come out of hospital. They don’t realise the impact of what their brain injury is going to have on them but they want to go back to work full time,” he says.

“They just want to go back to the life they had before, because they can’t come to terms with their new life, that changed forever in 30 seconds, and they’re not willing to accept.

“They can end up in a vicious cycle where the mental health deteriorates, then it has an impact on their family life, and the family life then becomes fragile and broken.”

Mandy agrees. “The individual has to be aware of their own limitations before they can put themselves into that workplace environment. But you get lots of people with post injury who are desperate to get back to work.  

“Very often [brain injured] people I work with have their accident and immediately want to return to work and will actually do that, [but then] cannot cope.”  

Emilie says: “We do have this culture now where a lot of jobs are very stressful, very demanding, and if you can’t cut it, it’s ‘if you can’t take the heat, get out of the kitchen’. I think a lot needs to be done to educate people that actually with someone with a disability, you need to work with and support them in doing that job and not just sort of discard them.”

Mandy adds: “Over the course of my career, of about 25 years, there has been a very positive shift in the UK, towards having a greater understanding of people with disability. I wonder if that also came through from the Paralympic sports and the growth within that industry and people’s attention drawn to that. Although things are not perfect, it’s certainly moving in the right direction.”

For Dean, his life was completely transformed through securing employment, and particularly in such a rewarding role.

“The role I’ve got as a peer support worker as part of the casework team, was made for me. I love it. I go into hospitals and support the families and the person, when they’re tearful I can give them hope. They think, ‘oh, so there is light at the end of the tunnel’. It took me years to get where I got, 17 years to get a job. So never say never.”

Dean, Emilie and Mandy’s discussion was part of a podcast series from Irwin Mitchell. Let’s Talk About It, podcasts for people living with disability – https://www.irwinmitchell.com/letstalkaboutit

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