Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure greater primary care awareness and early identification of primary biliary cholangitis.
We remain committed to improving the lives of people living with rare diseases, such as primary biliary cholangitis. One of the four priorities of the UK Rare Diseases Framework is increasing awareness of rare diseases among healthcare professionals. Our fourth England action plan, published in February 2025, reports on progress.
GeNotes is an online resource for clinicians, providing educational information as needed. This year the specialty of gastro-hepatology was launched in GeNotes, and includes resources for clinicians on primary biliary cholangitis.
NHS England, through the Hepatobiliary and Pancreas Clinical Reference Group, is working with partners to raise awareness and understanding of primary biliary cholangitis and its treatments. Plans include production of a treatment algorithm for use by emergency departments, which may also be helpful for general practitioners.