Supporting You Remotely: Covid19 has not stopped us!

The coronavirus pandemic has affected everyone associated with our MDS UK charity. We have a committed team of staff and committee members, working tirelessly on a virtual basis to provide excellent care to those who need us most.

Our office and headquarters are based at King’s College Hospital in South London, one of the largest hospitals in the country. In line with government recommendations, we opted to move all our staff to work from home. Social distancing in our tiny office would barely have worked for 2 people, let alone 4!

Therefore, our office staff faced some big changes as we temporarily vacated our office on March 19th. Closing the door on our ordinary working lives, we have been working from home since then; a challenging period as we strive to maintain the vital and life-changing work of MDS UK.

Sophie: "What has been difficult to manage is the amount calls and emails from understandably concerned and confused MDS patients"

Sophie Wintrich has been CEO of MDS UK for 10 years and never experienced times like this. “I started this job working in a tiny window-less ex-kitchen office, have worked on trains, planes, in hotels, and the odd few days at home, but always coming back to base.

Moving our entire (albeit small) team to a home setting, whilst training a fairly new staff member, and a brand new person we had only ever met in the interview has been an interesting challenge.
Technological hiccups aside, managing the team remotely has actually been a positive experience, as everyone focussed on making sure we stayed effective and connected whilst getting to know each other a bit better!
We already had some experience of working remotely with many people, such as our fantastic web-editor, Manuela, who moved to Israel 2 years ago. We miss meeting up with her but Zoom calls provide a nice connection.
We also have out talented Newsletter editor, Lorna, based in Scotland who we have never met face to face. Not forgetting our amazing website architects, Mariano and Eduardo – who we rarely see in person. Finally, we also work remotely with many of our group coordinators, our committee, and of course the clinical experts.
What has been difficult to manage is the amount of work, due to the many calls and emails from understandably concerned and confused MDS UK members, as well as new MDS patients. The pace at which information about COVID-19 changes has been hard to cope with.
Accepting that some normal projects were put on hold has been frustrating. Adapting to new ways of providing information has been challenging, but also very useful. We have had to learn fast about new communication options, such as hosting Zoom meetings and ensuring these are conducted safely and reliably.

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This new way of working has exploded, and my working day is overloaded with online meetings, webinars, and virtual conferences. There are more events than ever before – and all from the same seat and corner of my bedroom. I have days without moving much, with a headphone or earphones stuck to me constantly.

Many of my UK counterparts and those abroad have experienced the same issues of webinar Zoom fatigue – and all of us will need to learn a new equilibrium of work-life balance, until a vaccine is found. But one thing is sure, Covid has not stopped us – and it is clear that all involved in support for patients are a determined bunch.

Chaudian: “Updates are now conducted by email or phone and meetings via Zoom, providing a form of human contact”

“We haven’t had to deal with something like this before”, agrees Chaudian Morgan, Admin Officer. “It’s been very taxing, and I’ve struggled to accept the current reality. There’s construction next door and screaming children. I could usually go to a library, but they’re closed. Many are also dealing with the mental, emotional and financial impact of Covid19.”
As a small office team of five (two full timers, two part-timers and one volunteer), roles at MDS UK overlap. We work together, assisting with others’ often unenviable workloads and giving advice. We have meetings, updating colleagues on various projects and boosting team morale, ensuring the smooth day-to-day running of all MDS UK operations.
However, updates are now conducted by email or phone and meetings via Zoom (a video conference program.) Excluding technical problems, these have gone smoothly, providing a form of human contact. “Without my weekly Zoom calls, I would have felt very isolated so thank the world we have amazing technology”, says Caroline McGovern, Admin Officer.

Chris: "Thankfully, we are now able to access everything we could in the office, including MDS UK equipment"

Chris Charlwood, Finance Volunteer, echoes this: “The bad news for me is that I will now be doing more work! I usually do one day a week at King’s plus committee meetings. However, as the online working plan is now fully implemented, I can work anywhere. This is good, as I often had to leave things half finished, then remember where I got to a week later.”
There have been some practical issues setting ourselves up at home with laptops and adapting to the online systems. Thankfully, we are now able to access everything we could in the office, including MDS UK equipment (T-shirts etc) which Caroline kindly collected and posted to our amazing virtual fundraisers. We have slowly adapted.

Caroline: "Both my girls just want to see their nannies and give them big hugs"

“At first it was difficult for everyone to find a space to work and concentrate”, says Caroline. The worst part for my family has been not being able to see mine and my partner’s Mums. We are extremely close, and both my girls just want to see their nannies and give them big hugs. However, I think everyone is now settled and work has become easier.”

“My stepson moved in with me in February and we initially struggled to get into a routine” says Chris. “We now circle round the house settling in different spots depending on who’s working, conference calls, the need for space and who’s cooking dinner! However, we have quite a big house with a garden to escape to, so we fare better than others and feel lucky.”

Jan: "Everyone I’ve met online has been welcoming and supportive. It’s been tough mentally but I’m enjoying the challenge!"

MDS UK also welcomed its first Fundraising Officer, Jan Edwards on March 31st, shortly after lockdown began. This was an interesting time to start the role, with the postponement or cancellation of the events that MDS UK relies on heavily for income. Jan has not yet been physically introduced to his office colleagues since being interviewed by Sophie in February.
“It felt strange starting this job in isolation as I was supposed to work in the office until I’d settled”, says Jan. “However, everyone I’ve met online has been welcoming and supportive. I’ve had to be proactive and adaptable, familiarising myself with different systems and fundraising in these strange times. It’s been tough mentally but I’m enjoying the challenge!”
Indeed, maintaining good mental health is key for staff to work effectively. With many outdoor activities banned and all gyms closed, directed exercise is a lot less accessible. Humans are social animals and with social activities banned and remote working the new norm, loneliness can start to set in. We’ve all had to keep busy.
“Mental health is vital right now”, says Caroline. “My eight-year-old finally mastered her bike so we’ve been going on family bike rides. I’ve never enjoyed cooking or baking but I’ve mastered bread making and my cakes are now yummy. It’s all very therapeutic. The MDS Team may need to go on a diet when we return to the office and they sample my treats!”

At MDS UK, we always want our patients and their loved ones to remain calm and offer them some advice. “To everyone, I say take a deep breath, relax and we will all get past this”, says Caroline. “In the meantime, stay home, stay safe and stay connecting to those you love and make you laugh.” As Chaudian puts perfectly: “These days won’t last forever”.
The MDS UK team. (June 2020)

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