Out of the room but in the room: How the digital age is giving Cystic Fibrosis a voice

Imagine never being able to be in the same room as your friends. Or your colleagues. Or simply other people like you. That’s the reality faced by anyone with Cystic Fibrosis. Why? Because they often carry bugs and infections in their lungs that, while rarely harmful to people without Cystic Fibrosis, can be extremely serious when transmitted to each other. As a result, they are advised to avoid meeting in person. For the Cystic Fibrosis Trust, a charity that supports people affected by the condition, this presents a considerable challenge. Enter a new era of digital communications and, in particular, Microsoft’s online collaboration technology.

“People can see each other and are, to all intents and purposes, in the same room. It’s led to a much better sense of energy and collaboration between us all.”
Earlier this month, the Trust used Skype for Business to run a virtual workshop on Digital Democracy as part of its efforts to help people with Cystic Fibrosis gain a collective voice and create a brighter future for themselves. Held in partnership with the lobbying advice group, Parliament Outreach, the session was attended by 23 people, ranging from those living with the condition to friends and family members. Hosting it via a Skype for Business video conference meant that although not physically in the same room, everyone could see each other, interact and ask questions in real-time.
“The danger of cross-infection as well as the risk from everyday germs found on the tube or in a coffee shop means many people with Cystic Fibrosis are restricted in terms of where they go and when,” explains the Trust’s Public Affairs Manager, Darren O’Keefe, organiser of the workshop. “It can leave them feeling extremely isolated, especially as unlike many other chronic diseases, they can’t get together at support groups to share experiences or meet up in person to talk about the issues they face. The technology we used for the Digital Democracy workshop gave attendees a chance to learn but also interact and discuss ideas as a group. That’s invaluable.” “Parliament Outreach exists to break down barriers between the public and parliament – whoever and wherever they are,” adds Senior Engagement Officer Lucinda Blaser, who helped run the session. “The main message was: ‘let’s all work together’. Whether it’s engaging a local MP over email or campaigning to improve levels of nationwide support, we wanted to show people with Cystic Fibrosis that speaking with a personal but combined voice is the best way to influence change at both a local and national level.” Yet while workshops like this one are an increasingly vital part of the Cystic Fibrosis Trust’s work, it’s not just the people the charity supports who are benefitting from its willingness to embrace the digital age. It also employs 10 people with Cystic Fibrosis and the introduction of Skype for Business has had a significant impact on their working life too. Three of those employees are part of O’Keefe’s public affairs team. Lynsey Beswick, Public Affairs Officer, explains: “Part of living with Cystic Fibrosis means that I need to be able to work remotely and communicate with my colleagues from home. Previously, this meant being dialled into meetings via the phone – where it was often hard to play an active part in the conversation – or relying on email. Skype for Business means that I can now collaborate much more easily with my team – as we can see one another while we communicate and work together” “Staff meetings and get-togethers used to be a nightmare,” Darren recalls. “We could never get the whole team together because of the risk of cross-infection. And as so many aspects of communication are non-verbal, it just wasn’t effective having people dialled in on the phone.” “Now things are a lot easier. We have weekly team meetings on Skype for Business and we also use Yammer to catch up quickly or share praise. People can see each other and are, to all intents and purposes, in the same room. It’s led to a much better sense of energy and collaboration between us all.”It even helped smooth the process of relocating the charity’s HQ from Bromley to central London, giving staff who previously lived locally a clear and viable mandate to work at home and manage their own work/life balance. Yet as well as the obvious logistical advantages, there has also been a deeper emotional benefit. CB3“I now feel much more included when it comes to meetings” explains Lynsey. “My colleagues can see me, I know who’s in the room and it’s much easier to speak up and have my voice heard. Thanks to Yammer, I also know more about my colleagues and what they are up to, as it provides a way for us to share updates and chat as a team”. “For the people in my team, this technology helps them feel part of things at work in a way that just wasn’t possible before,” O’Keefe adds. “No matter where they’re actually sitting, they’re never cut off and are ‘in the game’ in the same way you or I can be. All they need is a Wi-Fi connection.” And this, he says, is yet more evidence of the positive impact that online communications tools can have on the lives of people with Cystic Fibrosis – whether that’s inside or outside his own organisation. CB4“The digital age has been a massive bonus for people with the condition as it’s given them a way to interact, socialise and work without the risk of cross-infection. As a charity, our aim is to make a life with Cystic Fibrosis a life unlimited, so the workshop was about helping people extend their digital skills from a social level to being able to influence the issues that matter to them. “But, of course, we wouldn’t be doing our job properly if we weren’t making the most of the technology ourselves too.”