Scottish Parliament debates cholangiocarcinoma awareness
On Thursday 30 October 2025, the Scottish Parliament hosted its first ever debate specifically about cholangiocarcinoma (bile duct cancer) in recognition of Liver Cancer Awareness Month.
The debate was secured by Marie McNair, MSP for Clydebank and Milngavie, following her attendance at AMMF’s Scottish Parliament (Holyrood) reception in June 2025, and in support of her constituents Anne and Derek Winter, whose son, Barry, died of cholangiocarcinoma on 8 May 2008.
Marie McNair’s motion about cholangiocarcinoma awareness, which formed the basis of the debate, achieved cross-party support from 35 MSPs and can be read here: S6M-19085 | Scottish Parliament Website.
The debate had contributions from the following Members of Scottish Parliament (MSPs):
- Marie McNair, MSP for Clydebank and Milngavie (SNP)
- Elena Whitham, MSP for Carrick, Cumnock and Doon Valley (SNP)
- Dr Sandesh Gulhane, MSP for Glasgow (Conservative)
- Carol Mochan, MSP for South Scotland (Labour)
- Jeremy Balfour, MSP for Lothian (Independent)
- Jackie Dunbar, MSP for Aberdeen Donside (SNP)
Response from:
- Jenni Minto, Minister for Public Health and Women’s Health (SNP)
Molecular profiling for cholangiocarcinoma patients in Scotland
In addition to raising awareness about cholangiocarcinoma, a common theme throughout the debate was the need to implement a comprehensive molecular profiling testing programme for cholangiocarcinoma patients in Scotland.
Benjamin Carey, who was diagnosed with cholangiocarcinoma in 2023, first raised the lack of molecular profiling tests for Scottish cholangiocarcinoma patients with his MSP, Ben Macpherson in October 2024. On Benjamin’s behalf, Ben Macpherson raised the issue during a parliamentary debate on liver disease on 8 October 2024. The issue was also raised in a motion by Stuart McMillan, MSP for Greenock and Inverclyde, to recognise Cholangiocarcinoma Awareness Month 2025.
AMMF has been calling on the Scottish Government to fund and implement a comprehensive molecular profiling programme for cholangiocarcinoma, which was approved by NHS Scotland in 2023. Implementation of this testing programme will enable more people diagnosed with cholangiocarcinoma in Scotland to access potentially life-extending targeted treatments.
In her closing speech during the debate, The Minister for Public Health and Women’s Health, Jenni Minto, advised that she has asked the commissioner of genomic testing in Scotland to implement the molecular profiling testing programme for cholangiocarcinoma ahead of wider reform and that she would provide an update before the end of 2025.
How to watch the debate
A recording of the full debate is available to watch below:
Alternatively, you can read a full transcript of the debate, here.
Reflections on the debate
Helen Morement, CEO and Founder of AMMF said:
“I am extremely grateful to Marie McNair MSP for securing this important debate about cholangiocarcinoma awareness during Liver Cancer Awareness Month. I would also like to thank all the MSPs who contributed during the debate. It was particularly encouraging to hear from some MSPs who admitted they had not heard of cholangiocarcinoma before but learned about it for the debate. This emphasises the importance of opportunities like this to raise awareness about the impact of this challenging cancer.
“Cholangiocarcinoma is a growing problem in Scotland, with the latest incidence rates indicating that it is no longer a rare cancer there. With early diagnosis being so challenging, it is essential that when patients are diagnosed, they are offered the most effective treatment options. Approximately 40% of cholangiocarcinoma patients’ tumours have gene faults which mean they could potentially benefit from life-extending targeted therapies, but the comprehensive molecular profiling tests to find these gene faults are not available to all patients in Scotland.
“We welcome the Minister’s efforts to prioritise funding and implementation of the molecular profiling testing programme for cholangiocarcinoma patients in Scotland. We hope for a positive update before the end of this year, so that these essential tests are made available to cholangiocarcinoma patients without further delay.”
Benjamin Carey said:
“It was great to attend yesterday’s Holyrood debate led by Marie McNair, with broad cross-party support shining a light on the woeful gap between Scotland and England in NHS care for cholangiocarcinoma patients.
“When half of patients won’t survive 12 months post-diagnosis, it’s tragic that, despite the Scottish Government having set out a genomic testing strategy in 2023, it still hasn’t been implemented, and since October 2024 there have been assurances that this would be progressed for Scottish cholangiocarcinoma patients ‘as soon as possible’.
“Yesterday there was the promise of an implementation update before Christmas with cholangiocarcinoma patients being prioritised, which is welcome, but until we have clarity, that still leaves many Scottish cholangiocarcinoma patients faced with anxiety and uncertainty.”
A note on incidence of cholangiocarcinoma in Scotland
Earlier this week, AMMF received an update from the Scottish Cancer Registry with the latest data about cholangiocarcinoma incidence.
For the period 2021-2023, 6.18 people per 100,000 in the Scottish population were diagnosed with cholangiocarcinoma each year. The compares with 3.81 per 100,000 people each year in the period 2001-2003.
This means that in the past 20 years, the incidence rate of cholangiocarcinoma in Scotland has increased by over 62%.
AMMF is extremely grateful to all our supporters who wrote to their MSPs, asking them to sign Marie McNair’s motion and participate in the debate. Your efforts helped raise awareness of cholangiocarcinoma in the Scottish Parliament.
