Blog: Keeping up with the crisis

09 April 2020

With a 600% surge in site visits and more Helpline calls than ever before, we have had to change the way we work to keep up with the ever-changing situation.

Today, IBD teams all over the UK are pointing patients in our direction for Coronavirus information.

What we usually do

The Knowledge and Evidence team is responsible for all the information the charity provides about Crohn’s and Colitis. From medicines and surgery to relationships, diet and coping at school, it’s our job to make sure that you have the information you need to confidently manage your situation.

It’s a wonderfully varied and creative role that allows us to work on all kinds of things like podcasts, Connect magazine, animations, as well as printed and web content. Just this year we launched the charity’s first ever children’s book to explain Crohn’s and Colitis to kids! We’re always working on new ways to present our information so that it reaches as many people as possible.

We create everything together with healthcare professionals and people affected by Crohn’s and Colitis. Our production process is really thorough to make sure that everything we produce is accurate, evidence-based, unbiased and trustworthy.

How coronavirus changed our roles

We work to a schedule to regularly review the evidence base for all our information, but we had to put that to one side once coronavirus hit. It became clear that your needs were changing very quickly and within days our Helpline was receiving four times the number of queries they normally receive. There was clearly a need for immediate, detailed information. Now, all our team’s time is exclusively dedicated to researching and writing information about coronavirus.

This is a new situation for everyone, and we understand how confused and concerned many of you are. We’re doing everything we can to process the ever-changing information and keep everyone informed in a way that’s clear and reassuring.

Knowledge and Evidence Manager

Things are moving quickly. Every day brings new information from the Government, the NHS, specialist doctors and researchers about what the crisis means for the Crohn’s and Colitis community. It’s down to us to digest and decipher all the available knowledge, and turn it into easily understandable information within hours, working evenings and weekends to make sure that you have the information you need as quickly as possible. For example when the British Society of Gastroenterology released the categories for assessing risk of complications from coronavirus, our team turned this into a decision tree – a visual tool that helps you easily figure out where you stand. This decision tree is now being used in hospitals across the country.

The new normal

Every day is now spent finding out as much as we can about how coronavirus will affect our community and telling you what you need to know. The Frequently Asked Questions and other information on our website are written by our team and are constantly being refined and updated. The answers are not provided to us by external bodies - they are the result of us constantly monitoring the latest research, recommendations from the British Society of Gastroenterology and guidance from the NHS to ensure our advice is the most accurate and up to date.

Knowing what you need

We identify themes which allow us to prepare and edit the information on our website. For example, when the Helplines team told us about the huge volume of calls they were getting about working and benefits, we created a webpage with answers to the most common questions, and drafted a letter of support people could use to talk to their employers.

Our Helplines team let us know what they are being asked about so we can continue to provide them with the knowledge they need to answer your questions.

Knowledge and Evidence Editor

We also work with the Digital team to develop accurate messaging about key updates for social media and monitor the comments coming through so that we’re up to speed on what’s most concerning you there. As well as the Helplines team and social media comments, we use website analysis software to see what is being clicked the most on a page. By dedicating time every day to look at this information we know the most important questions at the time and can make sure we focus on these.

This information isn’t just important to us. We pass on this patient perspective to the British Society of Gastroenterology to help shape their guidance and were heavily involved in the testing for the web tool which assesses your risk level and informs your IBD team.

Biggest challenges

Like many others across the UK, all Crohn’s & Colitis UK staff have been following the government guidance to stay and work at home. We’re used to sitting together in the office and being able to quickly chat through any conflicting research or information we find, with each other and with our Helpline colleagues. We’ve had to instead get used to keeping in touch virtually with messaging and video calls.

Regular wellbeing tips and good news stories from the charity are helping us stay in touch and keep positive at this time.

Knowledge and Evidence Editor

We’re already a small team, equivalent to just two and a half full time staff; but we’ll now be working on further reduced capacity. Our income has dropped significantly, and Crohn’s & Colitis UK has had to take actions to protect the financial security of the charity. Our team is moving to short time working – meaning we’ll only be able to work 80% of the time we’re normally contracted to. We’ll continue to do everything we can to ensure our supporters have all the information they need during this difficult time – but we need your support. If you can, please donate now to ensure we can continue to get vital information to those who need it most.

It’s a frightening time for everybody, especially if you are at higher risk of serious complications from coronavirus. There’s a lot of confusion and misinformation out there, but our advice has been developed from extensive analysis of the research, and consultation with experts such as the British Society of Gastroenterology and Royal College of Physicians. So you can be confident that our website is the most accurate place to get information on how coronavirus may affect you.

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