Partner content: Ipsen UK Ltd has been working with clinicians, patients and the PBC Foundation to arrange a meeting at the Scottish Parliament as part of a disease awareness programme. The article was initiated and funded by Ipsen UK Ltd.

People who suffer from deep and often unbearable itch and fatigue should ask their doctor for advice, as they may have a condition affecting their liver.

Primary biliary cholangitis (PBC) is a rare autoimmune liver disease affecting some 1,900 people in Scotland. 90% of those diagnosed are women. Although people with PBC have done nothing to trigger the illness, those affected often feel stigma because other liver conditions are often brought on by alcohol or drug use.

Glasgow-based Consultant Gastroenterologist, Dr Stephen Barclay says he’s concerned that some people are living with PBC without knowing it:

“For some patients, their liver becomes so damaged that a liver transplant is needed – and a transplant is sometimes found to be the only way to address their symptoms. Others are diagnosed with few, or no, symptoms having been tested for something else.

“PBC is under-diagnosed, and my hope is that we can raise awareness of the condition in the hope that more people who do have symptoms come forward sooner.”

A meeting in the Scottish Parliament this evening will bring together MSPs with clinicians and patients to discuss the recommendations in a report into how PBC patients are looked after in Scotland – and discuss a possible national pathway for diagnosis and treatment.

The report weaves together the findings from a series of interviews with clinicians and people living with PBC. It was commissioned by biopharmaceutical company Ipsen as part of a disease awareness programme and carried out by researchers at consultancy, Ettrickburn.

The report finds that people have widely differing experiences depending on where they live in Scotland, and many feel stigma associated with having a liver condition even though it is not caused by anything they have done.

Patient Mo Christie has undergone two transplants to treat her PBC:  

"The itch was relentless. It was like bugs crawling underneath my skin. It felt like fire sometimes it was unbearably hot. My skin would always be broken and bruised.

“I think my diagnosis took about six to eight months which, in the scheme of things, is quite short compared with a lot of patients who go on for years with varying symptoms that they can't get to the bottom of.

“I hope, by increasing awareness of PBC, people can get the support they need sooner.”

Patients spoke to the researchers of their feelings of loneliness and being misunderstood. They said that their symptoms, which include itch, fatigue, brain fog, aches and dry eyes, were often put down to other factors, including menopause. Then, when they were told they had the liver condition primary biliary cholangitis – which until 2015 was called primary biliary cirrhosis – many felt shame and stigma assuming wrongly that that they had somehow brought the illness on themselves.

Robert Mitchell-Thain, CEO of the biggest global charity devoted to helping people with PBC, which is based in Scotland, says the findings of the report mirror much of what he hears every day from people with PBC:

“PBC is becoming more commonly diagnosed but it can take time for a person to realise or be told that their symptoms may be down to an illness, for their GP to refer then for the right tests, and for them to see the right specialist.

“This is a pernicious condition that we know far too little about, which sees the body attack its own cells. Many of those affected, whose symptoms can be unbearable and massively reduce their quality of life, feel they are misunderstood even by the health service.”

Tayside-based Consultant Hepatologist and Gastroenterologist, Dr Ruairi Lynch, says there is a strong case for a national diagnosis, treatment and care pathway that everyone can follow anywhere in Scotland:

“I think the pathway needs to consider itch and other symptoms associated with PBC. And it needs to include a system to refer complex patients to a forum like the Scottish autoimmune liver group that we have set up.

“What we need to avoid is patients getting referred to a transplant centre only when they need a transplant urgently when discussion in a wider forum could have altered their patient journey."

The report also recommends roll out of the Intelligent Liver Function Test, currently only used routinely to assess liver health for people in Tayside and Fife. It combines test results with information about a patient’s general health. Dundee University research shows the test increases diagnosis of all liver diseases by 43%*.

 

The full draft report – which will be finalised at the meeting in Parliament – can be read here.  

Read more: PBC: A hidden women’s health issue

 

Background

For more information on Primary Biliary Cholangitis, visit the PBC Foundation website.

The PBC Foundation was founded by Robert Mitchell-Thain’s mother Collette Thain MBE, a Scottish patient who lives with PBC. The charity continues to be based in Scotland, and serves over 16,000 patients in over 80 countries around the world.  It leads a number of global initiatives such as the annual PBC International Summit, hosted each year in Edinburgh, and Project 90/90- a campaign to ensure 90% of patients receive 90% of the care standards in care guidelines.

* More details of the Dundee University research can be found in their news release.

 

The article was initiated and funded by Ipsen UK Ltd.

ALLSC-GB-000753                                             Date of preparation October 2024