The New World of Work

With lockdown bringing changes to many people’s employment, our new campaign couldn’t have come at a more important time

WORDS: CAROLINE ROBERTS; LEAD IMAGE: MAX ROBERTS BY DARREN CASEY

Are You IN? is the work-focused phase of our Not Every Disability is Visible campaign. Launched in May, it calls on companies to pledge their commitment to inclusivity, and take positive steps to provide a supportive environment for employees with invisible disabilities and health conditions.

Our campaign comes at an opportune time. For some, changes to the way we work have been a lifeline, with more flexibility and support to manage their long-term condition.

However, the pandemic has worsened employment-related issues faced by many people with chronic illnesses. It's been particularly difficult for key workers and others in public-facing roles, for whom working at home isn’t an option. Guidance has not always been clear, and not all employers have been sympathetic to those needing to shield and others with vulnerabilities.

Research carried out last year by employee healthcare provider Reframe found that almost half of employees surveyed would feel uncomfortable about disclosing a health issue to their employer during the pandemic, and one in 10 were concerned they might lose their job should they talk openly about it. But we know that looking after employee wellbeing can bring massive benefits for employers.

More time to spend together: Andy Kumar and his dog, Scruffles

Image supplied

Flexible working

The good news is that the pandemic has encouraged a re-evaluation of long-standing working practices. Lockdown has shown that office-based employees can work from home successfully, opening up the possibility of a better work-life balance, and employee surveys have shown that many people would favour a mix of home and office working in the future.

Last summer, our Life in Lockdown survey found that over 50% of people living with Crohn’s or Colitis were benefiting from more time to rest and manage their condition, and almost half felt positive that the pandemic could help change working life for the better.

As we start to emerge from the pandemic, many organisations are thinking of adopting a ‘blended’ model in which employees will have more choice about how and where they do their jobs.

Having the flexibility to work from home has significantly improved my health over the past year

Being able to spend at least part of the time working from home has obvious advantages for Andy Kumar, an intelligence analyst with the Metropolitan Police. His employer has always been supportive in offering flexible and home working, as well as time off for hospital appointments.

Then, at the start of the pandemic, Andy moved to full-time home-working because of his need to shield. Although his condition is well managed, he still has minor flares. “This can make commuting a little tricky and working from home does help alleviate some of the pressures of standing on a cramped train with abdominal pain and discomfort,” says Andy.

“Fatigue is also a marked feature of my disease and having the flexibility to work from home helps conserve energy. There’s also ready access to the toilet. Working from home has improved my diet too, with the availability of fresh, home-cooked foods that suit me. In short, having that flexibility has significantly improved my health over the past year.”

Mental health awareness

The pandemic has also brought about a renewed focus on employee wellbeing in some sectors. Working in isolation while juggling other pressures, such as home schooling, has been hard for many, and this was apparent from our Life in Lockdown survey, which showed 56% of people felt their current working environment was having a negative impact on their mental health.

There’s been a lot of discussion in the media about the psychological effects of these changes in lifestyle, and it’s something some employers are taking on board.

Bethan Emerson, who has Crohn’s and works in human resources at the NHS Health and Social Care Trust in Belfast, knows what a difference an understanding and supportive employer can make.

“Having to shield since March 2020 has been really difficult at times, and at the beginning I was really anxious about being clinically vulnerable to coronavirus,” she explains. “However, my manager has made working from home really easy, and she’s helped me to manage my increased anxiety.

Shielding: Bethan Emerson has worked from home during the pandemic

Nicola Ross

“She always encourages me to take regular breaks and emphasises the importance of properly switching off after work. Although they’re dealing with a global pandemic too, I’ve never felt that my manager was too busy to check in on me. It’s so reassuring in what has been a really stressful time for all.”

Supporting employees with chronic conditions has huge benefits for the organisations they work in too. Max Horton was very nervous about mentioning his Crohn’s during the hiring process for his role in regulatory affairs at medical devices company Smith+Nephew. But, he says, “I had nothing to worry about. My manager was so sympathetic and understanding, and assured me they would help however they could.”

My manager was so sympathetic and understanding, and assured me they would help however they could

“Max’s Crohn’s experience has given him a number of critical skills that are impossible to teach: strength, resilience, optimism, perspective and calmness in stressful situations,” says his manager, Sam Greenhalgh.

“By understanding, accepting and working together with Max, we have minimised the difficulties caused by his Crohn’s and unlocked the massive potential that comes with it. And he brings a great sense of enthusiasm and perspective to our team, having used our products as part of his own recovery.”

Andy Kumar’s manager at the Metropolitan Police, director of intelligence Lindsey Chiswick, agrees that by supporting staff you make the most of their talents.

“Keeping London safe is a challenge that requires the best efforts of everyone working together. I want to provide a well-supported and flexible workplace to enable our staff to do the best job they possibly can. Making adjustments for Andy has proved to me the value of listening and adapting to individual needs. He’s a real asset to the Met, and we’re lucky to have him!”

Teamwork makes the dream work

Glen Neilson’s story also shows how much a culture of openness and acceptance around invisible health conditions can benefit team cohesion. When the pandemic hit, Glen, who lives with Colitis and has an ileostomy, was forced to shut down his events business. This prompted him to act on a long-held ambition to become a firefighter.

“The fire service didn’t know I was an ostomate until I got right through to the final day of recruitment, which was the medical,” he says. “They asked why I hadn’t mentioned it and I said I didn’t need to as it’s not a problem for me so I don’t see why it should be a problem for anybody else. When I told the other firefighters I had an ileostomy and asked if I could keep some ostomy bags on the truck, they didn’t raise an eyebrow.

A fresh start: Glen Neilson joined the fire service last year

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“People at work have asked lots of questions about my condition but they couldn’t be more accommodating. Although once someone did ask me if I was okay climbing ladders with my ostomy. I just said that I’d climbed mountains with it so it shouldn’t be a problem!”

Glen’s confidence to talk about his condition is amazing, but not everyone feels comfortable talking about their health and companies could be doing much more to support people in the workplace. That’s where Are You IN? comes in. Our pledges will help put more support systems and policies in place for people with invisible disabilities and conditions, and promote better awareness and understanding of Crohn’s and Colitis and invisible conditions in general.

Get involved

www.noteverydisabilityisvisible.org.uk/areyouin