The annual EASL International Liver Congress brings together thousands of leading scientists, clinicians and researchers from around the world to showcase and discuss ground-breaking liver research.

This year, we are proud to present the results of a UKPSC audit of clinical care for PSC in the UK. Health records of 1,795 PSC patients cared for in 30 different hospitals around the UK were reviewed, revealing huge variation in PSC care.

• 44% of the patients had not had a review of their disease progression (known as disease staging or risk stratification).
• Nearly 1 in 3 were not being checked for signs of bile duct cancer, the risk for which is increased in people with PSC.
• 1 in 5 patients with colitis were undergoing a colonoscopy each year. Annual colonoscopies are recommended for people with PSC and IBD.
• 40% of the PSC patients who didn’t have IBD had not had their colon checked with a colonoscopy. All patients with PSC should have a colonoscopy with biopsies to check for colitis.

Martine Walmsley, volunteer and Chair of Trustees for PSC Support, said, “There are guidelines for the management of PSC in the UK and the results of this study demonstrate that they are not being followed. This is also apparent on our online forums and in the helpline calls I handle. Many PSC patients are not getting the care they need and that needs to change.

"Raising standards so everyone can get the right basic care, regardless of where they live is one of the key benefits I’d like to see the new PSC Support App bring. If the clinicians are not familiar with the guidelines, the patients will bring the recommendations to them in the app.”