New vision for rare liver condition

Partner content: Ipsen UK Ltd worked with clinicians, patients and the PBC Foundation to arrange a meeting at the Scottish Parliament and develop a report on primary biliary cholangitis (PBC). This article was initiated and funded by Ipsen UK Ltd.

Patients and clinicians are urging policymakers to develop a national care pathway for a rare autoimmune liver disease, after uncovering the scale of disparity in the diagnosis, treatment and care of patients with the condition.

Research into the experiences of people living with primary biliary cholangitis (PBC) suggests a national framework could encourage uniformity in rates of diagnosis, treatment and care across Scotland.

The PBC Uncovered report, produced in collaboration with Scottish-based global charity the PBC Foundation with funding from biopharmaceutical company Ipsen, also recommends regional expert PBC teams be set up across Scotland to provide clinical services.

Researchers undertook a series of interviews for an interim report that was discussed at roundtable meeting of patients and healthcare professionals in the Scottish parliament. 

The final report suggests such a regional model, underpinned by a national PBC multi-disciplinary team forum to support consensus-based treatment decisions, could address current disparities in PBC care between larger and smaller hospitals.

Chief Executive of the PBC Foundation, Robert Mitchell-Thain, says engaging with patients and healthcare professionals has identified the lack of consistency in diagnosis and treatment faced by the around 1,900 people living in Scotland with PBC.

In his foreword to the report, he says:

“This report and its recommendations, based on interviews with patients, patient advocates and clinicians, reflect the unique challenges faced by individuals living with PBC, as well as their families, caregivers, and the healthcare professionals dedicated to supporting them.

“The findings and recommendations in this report align with our mission, reflecting the voices of the PBC community. We welcome the support of Ipsen in commissioning this report, and the interest of Scottish policymakers in working with us to take its recommendations forward.”

PBC uncovered

PBC is an autoimmune liver disease that primarily affects middle-aged women.

Common symptoms include fatigue, brain fog and debilitating itch, but the report highlights that many people living with PBC also deal with loneliness, anxiety and feelings of guilt and stigma even though this is not a condition brought on by anything people affected have done.

Patients at the Scottish parliament event convened by Gillian Mackay MSP spoke about sometimes-lengthy delays in receiving their diagnosis and about the lack of information available when they were finally diagnosed with PBC.

They highlighted from their personal experiences inconsistencies among GPs in their understanding of the condition, and challenges in both getting practices to collect the blood samples needed to monitor their condition and receiving the results.

The report recommends healthcare professionals make sure all people with PBC can access up-to-date, appropriate information about their condition at the point of diagnosis.

It also calls for steps to be taken to ensure PBC patients who may benefit from mental health support receive this, and for people to be encouraged to be co-partners in their care.

Liver doctors at the parliament meeting spoke about missed opportunities for diagnoses and best practice in treatment not always being followed, with as many as one third of patients being underdosed with medicines meant to prevent liver deterioration.

Dr Ruairi Lynch, a Dundee-based Consultant Hepatologist and Gastroenterologist, told the meeting that more than 20% of liver function tests checking for PBC and other liver conditions carried out in primary care are abnormal, but data suggests fewer than half of these are being followed up with further investigation.

The report recommends national roll out of what is known as the Intelligent Liver Function Test, which combines results from a liver function test with information about a person’s health, helping clinicians to make the right decisions about treatment.

Dundee University research shows the test increases diagnosis of all liver diseases by 43%, but it currently only used routinely in Tayside and Fife. 

Dr Lynch says there is a strong case for a national pathway to be rolled out to support the care of everyone diagnosed with PBC in Scotland:

“PBC is a disease that can be easily protocolised and standardised to improve PBC treatment in all hospitals across Scotland.

“Such a pathway would require GPs to be supported by labs to diagnose people in the community as soon as possible, ensuring patients receive consistent follow up and complex patients can be referred to the national multidisciplinary team forum to allow consensus to be reached on next steps in their treatment.”

You can read the full report here.

The article was initiated and funded by Ipsen UK Ltd.

Date of preparation April 2025                      ALLSC-GB-000926

Read more articles on PBC: PBC: A hidden women’s health issue; It may not be menopause, it could be PBC