Why the updated NICE guidelines matter

30 July 2019

The National Institute for Health and Clinical Excellence (NICE) has updated sections of their guidelines on Crohn’s Disease and Ulcerative Colitis. These guidelines help outline the recommended treatment and care healthcare professionals  should give to people with Crohn’s and Colitis living in England and Wales (Scotland operates a separate system).

The guidelines cover the management of Crohn’s and Colitis in children, young people and adults, and set out steps that should be in place throughout the NHS to reduce symptoms and maintain or improve quality of life. The guidelines are produced by experts working collaboratively and open to input from patient and professional organisations before the final versions are published.  

Crohn’s Disease Guideline

The changes made to the Crohn’s Disease guideline focus on new recommendations on maintaining remission after surgery. These supplement the existing recommendations on a number of areas including: providing information and support, inducing remission, maintaining remission, surgery, monitoring for osteopenia and assessing fracture risk and conception and pregnancy

Ulcerative Colitis Guideline

The changes made to the Ulcerative Colitis guideline include new recommendations on inducing remission in mild-to-moderate Ulcerative Colitis. These supplement the existing recommendations on patient information and support, treating acute severe ulcerative colitis, providing information about surgery, maintaining remission, pregnancy and monitoring bone health, growth and pubertal development.

Both guidelines should be read alongside the IBD Quality Standard which sets out what NHS health services should provide to people living with Crohn’s and Colitis. There are also number of additional NICE guidelines, relevant to Crohn's and Colitis, including guidelines on specific treatments, pathways and screening.

Our response

As part of the NICE guidelines process, organisations with a link to Crohn’s and Colitis, including Crohn’s & Colitis UK and the British Society of Gastroenterology were given the opportunity to look at the updates and feedback before the new guidelines were published.  

We are disappointed that a number of our recommendations were not reflected in the final versions of each guideline. It is important that NICE guidelines align with our work, as part of IBD UK on the 2019 IBD Standards, as well as the new British Society of Gastroenterology (BSG) guidelines, and therefore we believe that a full and more detailed review of both NICE guidelines is timely and necessary.

We recommend that NICE strengthen recommendations around supported self-management, shared decision-making, preventing and managing a flare and personalised care planning.We would very much welcome the opportunity to work with NICE to ensure future guidance focuses on what matters to patients and empowers them with the information and skills to live as well as possible. 

Sarah Berry,
Health Service Project Manager, Crohn’s & Colitis UK

For more information on the IBD Standards or to take part in the first ever UK-wide IBD patient survey and make your voice heard, click here.

 You can read the consultation response on Ulcerative Colitis here

► You can read the consultation response on Crohn's Disease here