Can you help to shape new guidelines for Crohn’s and Colitis care?

What are the BSG guidelines?

Clinical guidelines are recommendations for healthcare professionals that aim to make sure people receive the best possible care for their condition. The BSG guidelines cover the management of Crohn's and Colitis, often referred to as Inflammatory Bowel Disease (IBD), and include detailed recommendations on: 

• Testing and diagnosis 
• Medical treatments 
• Surgery 
• Diet and nutrition 
• Anxiety and depression 
• Pain and fatigue 

They also tell us which health professionals should be involved in looking after people with Crohn's and Colitis, and the way GPs and hospital specialists should work together. 

The current guidelines were published in 2019, based on the evidence available at the time. So, they are now due to be updated to include the latest evidence. 

What is our role in the development of the guidelines?

We want you to have the information you need to make informed decisions about your care, in a format that suits you. So, we are also planning to develop a version of the guidelines with you that can be easily accessed and understood by everyone who they may affect. 

Why is it important for people living with Crohn's and Colitis to take part?

You are the only people who really know what it's like to live with Crohn's and Colitis.  

Gastroenterologists, IBD nurses and other specialists are experts in the medical side of Crohn's and Colitis. But they may not fully appreciate the impact of Crohn's and Colitis on your day-to-day life. The things they think are important are not necessarily the same things you think are important. You might have come across issues that healthcare professionals have not thought of or have concerns they have not considered. It's essential that your experiences and opinions are included.  

By helping us develop the revised guidelines, you can make sure the voice of people with Crohn's and Colitis is heard. This will help make sure the guidelines are relevant, and future research targets the things that are most important to you. 

What would people need to do, if they got involved?

You'd be part of a group of about 10 people reviewing a section of the IBD Guidelines in a virtual meeting. The groups will be made up of gastroenterologists, IBD nurses and other relevant specialists, such as dietitians, radiologists, and surgeons. There will be a staff member from Crohn's & Colitis UK on each group, the meetings will last 1 hour, and they will be held monthly from now until 2024. 

Your role would be to help steer the group on what is important to people living with Crohn's and Colitis and help the group make recommendations that are beneficial to patients. You can get involved as little or as much as your time permits. 

What next?

If you'd like more information or want to get involved, please email Ana-Maria.Darie@nuh.nhs.uk. 

You do not need to have been involved in a similar process before, we'll support you and help you contribute fully to the discussions.