Life in Lockdown: How your healthcare has been affected

21 October 2020

Our Life in Lockdown survey gave us an insight into how health services have been impacted by the pandemic. Thank you to the 7,666 people with Crohn’s and Colitis who completed the survey and helped us to build this picture.

You told us that your health services have been disrupted by the coronavirus pandemic and there’s been a big impact on your care – we’ll continue to highlight the need for NHS services to run as fully and safely as possible.

The results of our Life in Lockdown survey have highlighted huge challenges, but also opportunities. And we are so grateful for all the support and care that healthcare professionals are giving to people with Crohn’s and Colitis in very difficult circumstances – it really is appreciated.

Lack of access to specialists, medicines and tests and procedures have led to flares, complications and poorer mental health for people with Crohn’s and Colitis.

  • Almost half of people with Crohn’s and Colitis (43%) could not access tests and procedures as usual. In England (42%) and Northern Ireland (44%), it was slightly more likely for tests and procedures to have gone ahead as planned, with people in Scotland (49%) and Wales (49%) reporting the most disruption
  • Almost 1 in 5 people (18%) with Crohn’s and Colitis reported that they had a flare because they could not access the health services they needed
  • 147 people with Crohn’s and Colitis said that they had planned surgery cancelled, with nearly 9 in 10 people (89%) not knowing when this would now take place
  • Just over a quarter of people (26%) with Crohn’s and Colitis who needed to speak to their IBD team have either not been able to at all, or it has taken longer than usual during the coronavirus pandemic
  • People who have had delays to starting treatments are more likely to report that they need mental health support

I have found this has had a massive impact on my mental health where I withdraw into myself, this ends up in me missing medication as I find it really difficult to speak to anyone on the phone or face to face. I started with a flare-up as we went into lockdown and have found it extremely difficult to access help.

However, understanding hospital IBD teams have kept up communication with people living with Crohn’s and Colitis during this difficult time and the pandemic could lead to changes for the better.

  • 4 in 5 (79%) people with Crohn’s and Colitis think that hospital IBD teams have understood and accommodated their needs during the coronavirus pandemic
  • 65% of people with Crohn’s and Colitis who needed to contact their IBD team said they had been able to reach their IBD team as usual and some people have reported that their teams have been more responsive (9%)
  • Of the 6,777 of people with Crohn’s and Colitis who said they were on medication for their condition, 89% have been able to keep taking their medication as usual
  • 49% of people with Crohn’s or Colitis who needed an appointment were offered virtual appointments, and 58% of people would like the choice of virtual or face-to-face appointments in the future. Virtual consultations can be more accessible and convenient, although they are not right for every individual or situation. Read our new blog on top tips on making the most out of virtual consultations. 

 

 

 

 

 

What are we doing about these results?

  • Sharing the results of this survey with doctors and nurses in IBD services, so they can understand the challenges you have been facing and think about these when providing your care
  • Encouraging NHS services to use these results alongside their IBD UK Benchmarking reports as they refocus, adapt, and redesign for the future
  • Developing information and resources, such as our new Appointment Guide, to support you to get the best from your healthcare services now and in the future
  • Using the results to raise awareness of Crohn’s and Colitis with policy makers and politicians, to inform decisions that affect your care

What can you do?

  • If you have any concerns about your health or appointments, please contact your IBD team
  • Check out the information available on the Crohn’s & Colitis UK website, including our new Appointment Guide and what to do if you think that you are having a flare.
  • Sign up to our campaigner newsletter, so you can help us use the results to campaign and move Crohn’s and Colitis up the policy agenda
  • Share your story with us. To help make our messages stronger, we need to tell the real stories of how people with Crohn’s and Colitis have been affected by the coronavirus pandemic. We would like to hear from people whose condition has worsened due to issues with accessing health care services. In particular, those who had investigations or surgery delayed and those who have received a delayed diagnosis due to coronavirus

For more detailed survey results, find out what we’re saying to healthcare professionals here.