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MSWA Bulletin Magazine Winter 2022

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  • Shapland
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  • Neurological
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Farewell Sue Shapland | Pain and pain management series: Part 5 | MSWA's Employment Support Service | Tips for staying motivated over winter

EMPLOYMENT SUPPORT

EMPLOYMENT SUPPORT WORKING TOWARDS HIS RECOVERY Ben Chenery outside the new Nautica Residences by Seashells, a shortstay accommodation concept started and now managed by Ben. “People give up on their job because they don’t want to be a burden on other people. They don’t realise that employment support is an option.” Ben Chenery’s life changed overnight when he woke up paralysed on his whole left side on 1 April 2018. “April Fools Day,” remarks Ben. “I spent four months in and out of ICU and state rehab. They thought I’d had a stroke.” But nine weeks into his stay in hospital, Ben was diagnosed with tumefactive MS – a rare type of MS where the ‘tumour-like’ lesions are greater than 2.0 cm in the brain. It was the beginning of a long road of rehabilitation for Ben, who loved kickboxing training, exploring new areas on weekends, and was a busy professional with a career he was passionate about. After discharge from hospital, Ben went back to work as General Manager of Seashells Mandurah. “I worked a few hours a day at first. Luckily, 75% of my job is done on a computer. But the thing was, I couldn’t type. I’d lost my sense of grammar. That’s when Leigh came in to help me sort out my work and my life.” CONNECTING WITH EMPLOYMENT SUPPORT Employment Support Manager Leigh McCaffrey has provided Ben with support for nearly four years – initially under the banner of Coact, which has recently transitioned into MSWA’s Employment Support Service. “Leigh came down to the office and started assisting me. He organised ergonomic chairs, Dragon software, special noise cancelling headphones. He was hands-on with my boss and answered all his questions about how he could support my recovery. And he reduced the financial burden of my employer to keep me in the workforce.” Ben’s boss, Gareth Thomas, CEO of Seashells Hospitality Group, explains, “Knowing that Ben was supported independently of his work environment by someone like Leigh who could work with both of us to ensure his continued success, was vital to how we approached the challenges that were presented for Ben at work. As an employer, this was a totally new situation for us, and we had no idea as to the support Ben would need. It gets right down to the chairs he sits on, the mouse and keyboard he uses, the software that may help him. Having someone independently guide Ben also meant that they were independently guiding us on what we needed to do to assist Ben. It helped us to understand the challenges that were ahead for Ben.” Ben affirms, “An employment support worker is someone you can turn to who’s not your boss. I met Leigh for a coffee once a week. He got me a healthcare card to make my medication cheaper. He started the process for NDIS planning.” Ben’s application to the NDIS was initially rejected so Leigh secured other funding to cover 80% of Ben’s remedial physiotherapy costs. “It made a big difference,” says Ben. Leigh explains, “Most Clients we see are newly diagnosed and we can access funding for early intervention. They get support through us and, over time, they qualify for an NDIS plan. Then they can use other services concurrently. There’s a gap in the early intervention support that we try to fill.” This was exactly the situation for Ben. In December 2019, Leigh messaged Ben saying, “Merry Christmas – check your emails!” Unknown to Ben, his NDIS application had been appealed and gone through. 20

“By mid-January I had a formal planning meeting, just like that!” explains Ben. “It suddenly opened up funding to services like exercise physiology, MS groups, remedial massage, a cleaner. “I had the support I needed to recover and to keep working.” FROM STRENGTH TO STRENGTH IN HIS CAREER Over the next 16 months Ben was promoted to Area General Manager (Perth) running Seashells Scarborough Apartments and assisting two other locations. Then COVID hit. “Leigh stepped in again, helped me set up my home office so I could work remotely. After that, if I had a bad day, I could work from home and still be very functional.” Once again, his boss was nothing but supportive. “Gareth never changed the way he treated me. I held on to that. I’d ask if I got stuck. And he made efforts to double check my grammar and my writing if required. “Looking back, I know that keeping my mind engaged with work was a massive part of my recovery.” In March 2021, Ben helped Seashells to further develop and improve a new short-stay accommodation business model called ‘Nautica Residences by Seashells’. Ben was given full autonomy to grow and run the new brand. “I started working on that project from home to build the new company. Then we took full management rights of Hillary’s Harbour Resort and turned them into a managed apartment service. Gareth gave me free reign – from building the website to the computer systems. He trusted me to build a new brand and launch it.” STAYING CONSISTENT AND STAYING POSITIVE Today, Ben’s main lesions are dormant. Regular Ocrevus injections – together with physical therapy – have been of great benefit. “Late afternoon I get tired, and my fingers double tap the keyboard. I take modafinil to help concentration. There’s less bad days if I keep up the training regimen. “My left leg gives me trouble when I’m walking – the muscles around my hips lock from the training I need to do. “The last four years have been about just getting to where I am now. I’m at that point in my rehab now that I can do most things.” Ben reveals that a previous relationship broke down soon after his MS diagnosis. “They didn’t think I’d walk again correctly because of the MS. Some relationships survive a life-altering event, some don’t. But none of that matters because I’m with the most amazing woman right now.” Ben grins as he speaks about his partner Bliss, who he first met in late 2019. “Half the time she forgets I even have MS! She never makes me feel funny about it. She jokes that I’m more functional than most of the men she’s met!” He attributes this somewhat to the fact that he’s a keen home cook – “Preparing food is like physical therapy for your hands.” ADVICE TO THOSE NEWLY DIAGNOSED Ben says his attitude is what got him through the tough times. “Don’t give up. Try your hardest. Your own personal positivity will open doors for you. “A lot of people who are newly diagnosed think they’ll end up in a wheelchair, but with the right training you can improve your strength and be very functional. “I can’t do kickboxing any more, but I can still train and do boxercise and other things that are good for my health. It’s good if you can train with like-minded people who understand, like at MSWA. You don’t have to fake it if you’re having a bad day.” Ben explains that he’s had bad moments where he’s felt broken, but that it’s how he chooses to act afterwards that’s important. “Stop being so proud. Ask for help, or how will people know you’re struggling? People will stand up if they know what they need to do to help you.” As well as Employment Support, Ben accesses Physiotherapy and Support Coordination services at MSWA. “Not knowing where to get support was the biggest hurdle I faced in the first 6 – 12 months. If it wasn’t for Leigh, I probably would have given up on a few things. “I’ve got my things in place and the right people around me.” BEN’S MESSAGE TO EMPLOYERS Ben is clear when it comes to the difference that support from his employer has made to his recovery and his sense of self. “My boss Gareth never treated me any different. That pushed me on.” Gareth elaborates, “Nothing should change. If you valued your employee prior to a diagnosis, why should a diagnosis of a neurological condition change anything? There are support services immediately available to not only assist your employee in all facets of their life, but to assist you too as their employer. Keeping a flexible workplace to allow for attendance at treatments etc is vital, but your employee will appreciate this and will reward you by maximising their productivity at other times. Be flexible, treat your employee as you always did, work with them to ensure they remain active, productive and a valued employee, and the rewards far outweigh the issues.” Ben adds, “Don’t write off your most loyal, brilliant staff members by not working with them to keep them in the workforce.” If you’re living with MS and think you may benefit from MSWA’s new Employment Support Service, please contact employment.services@mswa.org.au or phone 1300 865 209. 21