Official Report 1214KB pdf
The final item of business is a members’ business debate on motion S6M-19085, in the name of Marie McNair, on cholangiocarcinoma awareness. The debate will be concluded without any question being put.
Motion debated,
That the Parliament recognises that October 2025 is Liver Cancer Awareness Month, with cholangiocarcinoma (CCA), which is also known as bile duct cancer, considered to be the second most common primary liver cancer in the world; acknowledges that CCA has few symptoms in its early stages and that people who present with it tend to have quite vague symptoms, such as nausea and loss of appetite, which makes it difficult to diagnose and often managed too late, leading to it having among the worst survival rates of any cancer; notes with concern that, although most cases occur in people over 60, prevalence of the condition appears to be increasing across all age groups, including younger people; notes calls for a comprehensive genomic testing programme, which was approved by NHS Scotland in 2023, to be implemented; believes that this could identify over four-in-five potentially treatable gene faults in CCA patients; welcomes groups such as AMMF, the UK’s only charity solely dedicated to CCA, on providing information and support to people who need it, campaigning to raise awareness and funding research, and notes the view that more needs to be done to raise awareness of this type of cancer to improve outcomes for patients.
17:10
I am pleased to have secured this very important debate to raise awareness of cholangiocarcinoma, to coincide with liver cancer awareness month.
I am delighted to have Anne and Derek Winter from my Clydebank and Milngavie constituency in the chamber tonight, along with some supporters of the Alan Morement Memorial Fund—AMMF—which is the United Kingdom’s only dedicated cholangiocarcinoma charity. I know that members will join me in giving a sincere welcome to Anne and Derek from Milngavie, and Benjamin Carey and Stuart Finister, who are supporters of AMMF.
I also thank my colleague Ben Macpherson for hosting an AMMF event in June of this year, with calls for a fairer and faster deal for people who are diagnosed with cholangiocarcinoma in Scotland. It was a great event that confirmed the importance of taking the issue to the chamber.
I am holding the debate on behalf of my constituents Anne and Derek, in memory of their beloved son Barry. Barry Winter was born on 31 December 1970 and died of cholangiocarcinoma on 8 May 2008. Barry was a much-loved son, brother, husband, father and friend. He worked as a senior press officer in what was then the Scottish Executive.
Barry had attended his general practice for some time and had been diagnosed with irritable bowel syndrome. When he suddenly became very ill in April 2007, he was diagnosed with cholangiocarcinoma. He was told that the condition affected only older people. Sadly, Barry, who had been married for only two years and had a four-month-old baby daughter, was informed that his condition was terminal.
Barry died 11 months later, leaving a young widow and a child who would never experience the love that her father had for her. Since that time, my constituents have worked hard to raise awareness of this tragic disease, which is the second most common primary liver cancer in the world and is also known as bile duct cancer.
Cholangiocarcinoma causes few symptoms in its early stages, and those that do present tend to be quite vague, such as nausea and a loss of appetite. It is difficult to diagnose, which means that it is often missed or managed too late. More worryingly, cholangiocarcinoma has one of the worst survival rates of any cancer.
I thank AMMF for providing me with up-to-date figures on the disease, as I believe that they provide important context. Between 2021 and 2023, the age-standardised incidence rate of cholangiocarcinoma in the population of Scotland was 6.18 per 100,000 people. In the past 20 years, the age-standardised incidence rate has increased by more than 62 per cent. More concerningly, it has been confirmed that the latest incidence rates suggest that cholangiocarcinoma is no longer a rare cancer in Scotland. Typically, a cancer is considered rare if fewer than six in 100,000 people are diagnosed with it. That worrying development highlights the importance of raising greater awareness of the disease and pushing for earlier detection. Between 2020 and 2022, the age-standardised mortality rate for cholangiocarcinoma in Scotland was 6.21 per 100,000 people, which reflects the poor prognosis with cholangiocarcinoma.
Deprivation is also a factor. The age-standardised incidence of cholangiocarcinoma among the most socially and economically deprived groups has increased almost twice as much as it has among the least deprived groups.
There is no standard cholangiocarcinoma patient. Many patients do not have a history of liver disease, and the cancer often presents without any clearly identifiable symptoms until it has reached its advanced stages.
All of that is why I feel that it is so important that we push forward with comprehensive molecular profiling tests for cholangiocarcinoma patients in Scotland. Molecular profiling—also known as molecular testing or genomic testing—is used to determine which gene faults might present in an individual tumour. That information can be used to select the most appropriate treatment options for cholangiocarcinoma patients. According to AMMF, one of the tests that is currently provided by the national health service is being funded only temporarily and will expire by the end of 2025. Without that test, cholangiocarcinoma patients with the IDH1 gene fault will not be identified and will be unable to access the Scottish Medicines Consortium-approved treatment, ivosidenib, which can extend survival.
I welcome the fact that a comprehensive testing programme that was approved by NHS Scotland in 2023 would identify more than four in five potentially treatable gene faults in cholangiocarcinoma patients. I hope to see that implemented as soon as possible. It would stop NHS Scotland from missing opportunities to offer treatments and clinical trials for some cholangiocarcinoma patients, potentially extending their lives with loved ones, which is the most important thing.
I also welcome the fact that the Minister for Public Health and Women’s Health, Jenni Minto, agreed to consider a business case for molecular profiling tests for cholangiocarcinoma. I would be grateful if the minister could comment on that in her closing speech and advise whether the Scottish Government can expedite the process to ensure that comprehensive molecular profiling tests for cholangiocarcinoma patients in Scotland are implemented without delay.
We owe so much to AMMF, to its supporters and to my constituents, Anne and Derek, for their tireless campaigning. Benjamin, whom I mentioned at the start of my speech and who is in the gallery, was diagnosed in 2023, six months after being misdiagnosed with pancreatic cancer. He is now travelling the world and is helping AMMF to raise awareness in the Scottish Parliament about NHS patient inequalities. I am grateful for his work.
It is up to us, as parliamentarians, to work with those who have been affected and impacted and to listen to what they are asking for. The fact that the disease is no longer considered to be a rare cancer must be a wake-up call for us all. We must urgently raise awareness of the symptoms and, crucially, push ahead with molecular profiling to ensure that those who are diagnosed with cholangiocarcinoma receive timely and appropriate care, better outcomes and, crucially, more time with their loved ones.
17:17
Having lost a much-loved family member to aggressive liver cancer at the start of the year, just as he entered his 60s, I thank Marie McNair for securing this debate. She has my strong support as we recognise October 2025 as liver cancer awareness month and, in particular, as we shine a light on cholangiocarcinoma, which is the second most common primary liver cancer worldwide. Cholangiocarcinoma, or CCA, is a condition that far too many people have never heard of—how many people in here ever think of their bile duct?—yet its impact on those who are diagnosed and on their families is absolutely devastating.
As we have heard, one of the greatest challenges with CCA is that it tends to hide in plain sight. In its early stages, it rarely presents with clear or specific symptoms. People might experience fatigue, nausea or a loss of appetite—symptoms that could easily be mistaken for minor or unrelated conditions. As a result, by the time that most people receive a diagnosis, the cancer has already progressed to a stage at which treatment options are limited. That delay in diagnosis contributes to what is, tragically, one of the poorest survival rates of any cancer. It is for precisely that reason that raising awareness among the public and healthcare professionals is so critical.
I, too, want to take a moment to recognise the incredible work that is being done by AMMF, which is the UK’s only charity that is dedicated solely to CCA. AMMF provides vital information and support to patients and their loved ones, funds groundbreaking research and works tirelessly to ensure that CCA is no longer a cancer that slips under the radar. Its commitment is nothing short of inspiring, and I know that colleagues across the chamber will join me in thanking it for everything that it does.
Although CCA is most common in people over the age of 60, it is deeply concerning that we are now seeing an increase in cases among younger people. The reasons for that trend are rightly and urgently being investigated, but it reminds us that cancer does not discriminate by age, background or lifestyle. We must ensure that awareness-raising campaigns, screening tools and support networks reflect that reality.
Early detection saves lives. That is the case for many cancers. For CCA, of which early symptoms are so subtle, our best opportunity lies in science, research, innovation and access to genomic testing. In 2023, NHS Scotland approved a comprehensive genomic testing programme, which is a decision that represents a major step forward in cancer care. If fully implemented, the programme could identify more than four in five of the potentially treatable gene faults in CCA patients. That is not just a statistic; it is hope. It is the hope that personalised medicine—the ability to tailor treatment to the individual genetic make-up of a tumour—can offer people more time, better quality of life and a genuine chance at recovery. I urge the Scottish Government and NHS boards to continue to prioritise the roll-out of the programme and ensure equitable access for all patients across Scotland, regardless of postcode or circumstance.
However, we cannot leave it to science alone. We must work hand in hand with charities, researchers, clinicians and, most important, people with lived experience. Charities such as AMMF, Cancer Research UK and the British Liver Trust play an essential role in not only funding research but breaking down the stigma and the silence that can so often surround liver diseases. Their campaigns throughout liver cancer awareness month bring colour, compassion and community to an issue that can otherwise feel isolating and bleak. As a family, we know how stigma can affect individuals who deal with such cancers.
Awareness is not a small thing. It is the first step towards earlier diagnosis, fairer treatment and better outcomes. We must do all that we can to ensure that people recognise the early warning signs, that general practitioners and other clinicians have the tools and training that they need to spot CCA sooner, and that CCA’s effects are met with understanding and support instead of confusion and delay.
Finally, as we mark liver cancer awareness month, let us recommit ourselves collectively to shining a light on this rare—although, as we heard from Marie McNair, not as rare as it once was—and often misunderstood disease. We need to back the charities, the scientists and the families who refuse to give up. Let us ensure that no one in Scotland faces CCA in silence or without hope.
I call Dr Sandesh Gulhane, who joins us remotely.
17:22
I declare an interest as a practising NHS general practitioner. I congratulate Marie McNair on securing this members’ business debate and raising vital awareness of cholangiocarcinoma, or bile duct cancer.
For GPs, cholangiocarcinoma is one of the most challenging diseases to detect. The symptoms are subtle and, often, non-specific: a bit of nausea, fatigue, loss of appetite or some discomfort under the rib—signs that could be almost anything. Sadly, by the time the symptoms add up to something more concerning, it is often too late for curative treatment.
The motion for the debate recognises liver cancer awareness month and draws attention to the shocking fact that cholangiocarcinoma has one of the poorest survival rates of any cancer. It most often affects people over 60, but, unfortunately, we are seeing it appear in younger patients, too. As a GP, I know full well that early diagnosis saves lives, but early diagnosis requires the right tools and systems, which is why the debate matters so much.
The old saying goes that prevention is better than cure, but, for cancers such as cholangiocarcinoma, where prevention is difficult, precision medicine gives us our best chance to improve outcomes. No two tumours are the same; each one carries its own genetic fingerprint, influencing how it grows and how it responds to treatment.
Through molecular profiling—basically, analysing the tumour’s DNA—doctors can identify specific mutations and target them with precision therapies. That is not science fiction; it is already changing lives.
For example, changes in genes called IDH1 and FGFR2 are found in one in seven people with this type of bile duct cancer. The good news is that there is now a drug labelled Pemazyre that is designed to target those specific changes. It is the first treatment made specifically for this cancer, and it is already approved for patients in England and Wales. For those who are eligible, it offers real hope and the chance of a longer and better-quality life than chemotherapy alone can provide.
However, in Scotland, access to such treatment depends on the implementation of a comprehensive genomic testing programme. The programme was approved by NHS Scotland in 2023, but it is yet to be fully funded and embedded into clinical practice.
Implementing that testing would allow more patients with cholangiocarcinoma to benefit from life-extending, targeted therapies. It would also strengthen our cancer intelligence, ensuring that we understand who might benefit most from emerging treatments that are very expensive.
The UK’s only charity dedicated solely to cholangiocarcinoma, AMMF, has led the way in supporting research, raising awareness and providing patient support. Its advocacy reminds us that, although cholangiocarcinoma is rare, its impact is profound and patients deserve access to modern, evidence-based care.
Scotland has a proud record in medical innovation. We were among the first to embrace precision oncology for other cancers. We must do the same here. By funding and implementing the genomic testing programme that is already approved, we can give clinicians the tools to act earlier, treat smarter and give patients and their families something invaluable: hope.
17:25
I, too, thank Marie McNair for securing this debate in the chamber. I also thank AMMF for all the work that it does to support research on cholangiocarcinoma, raise awareness and support those who have been diagnosed. Its campaign and Marie McNair’s call to ensure the funding for testing are so important, and I look forward to the minister’s response to them.
Although it has often been documented that cholangiocarcinoma is rare, I was really interested in Marie McNair’s point about the changing reality of that rarity—I had not picked up on that, so I was glad to hear about it in the debate. Bile duct cancer is aggressive and it is on the rise: it is considered to be the second most common primary liver cancer in the world. As we have heard from others, the incidence is higher in Scotland than in England; we must seek to understand why that is and what we can do about it.
The debate will help to highlight the causes of and risk factors for bile duct cancer, as well as to increase awareness. That is why it is so important that debates such as this are secured. Marie McNair is excellent at using her members’ business debates to do that.
We have already heard that timely diagnosis and treatment are crucial, and we also know that the diagnosis of bile duct cancer can often come late, resulting in poorer outcomes. I want to highlight—as I often do—the health inequalities that others have mentioned. People in more deprived areas have higher rates of preventable cancers and are more likely to be diagnosed at later stages. When we are speaking about bile duct cancer, which tends to be diagnosed at a late stage, it is important to have that in our minds. We must always seek ways to ensure that the cancer inequality gap is closed. I know that the minister has spoken about that in the chamber; she might mention it again in her closing speech.
As we read in the motion, bile duct cancer symptoms are difficult to spot, particularly at an early stage. The risk factors are largely unknown and it is believed that the cause of bile duct cancer is likely to be a combination of factors, including other illnesses that cause chronic damage to the liver and bile ducts. Although it is most common in people over the age of 60, incidence of the cancer is increasing across all age groups, including among younger people, which emphasises the need to increase public awareness of symptoms, risk factors and treatment options.
Although there is no guaranteed way to avoid bile duct cancer, people can take proactive steps to reduce their chances of developing the disease. When I was researching this, I looked at information from NHS Inform, which suggests that healthy lifestyle factors such as quitting smoking would also have positive impacts on people’s health in that way. Smoking is a leading and silent killer. When smoking rates reduce across Scotland, people’s health, lifestyles and outcomes improve. It is important that the Parliament commits to funding for smoking cessation and other health-improvement measures.
In relation to the link to liver damage, other measures that have come to light are reducing alcohol intake and minimising exposure to hepatitis B and hepatitis C viruses. Doing those will, we think, help with this cancer and others.
We know that there should be a greater focus on Scotland’s relationship with alcohol and its culture of binge drinking. Through targeted interventions to lower excessive drinking rates, we will reduce people’s chances not only of developing cancers such as cholangiocarcinoma, but of developing other diseases.
I repeat my appreciation to Marie McNair for bringing the issue to the chamber. Awareness of the condition is so important, and I know that the minister will give a good response to the debate.
17:30
I add my congratulations and thanks to Marie McNair for securing the debate. I must confess that I knew nothing about bile duct cancer. I have learned a lot just from listening to other members. The reason that I am speaking in the debate is that one of my constituents emailed me and asked whether I would briefly tell her story. It is my honour and privilege to do so. She wrote:
“I hadn’t heard of it until it changed the course of my family’s life in 2023. My beloved Mum, Valerie, was diagnosed with it in April 2023, after feeling a pain in her side. I couldn’t begin to put into words how shocked and devastated we were when she was diagnosed with terminal cancer after minimal symptoms and still being at work up until very close to the diagnosis. The worst thing was being told that there was absolutely nothing they could do, despite symptoms only showing a few days before. From here, things escalated at a terrifying pace. Mum passed away just 33 days after her diagnosis aged just 63. I went from everything being fine, to planning a funeral for my Mum at the age of 25 only 33 days later.”
I am sure that everyone would want to pass on their best regards and sympathy to my constituent.
Sadly, my constituent’s story is not unique. It is a story that other people have told me since hearing about the debate. As other members have said, cholangiocarcinoma is very difficult to diagnose and, even when it is diagnosed, it is very difficult to treat. I think that we all agree that it is a cancer on which specialised research needs to be undertaken. We need to find ways of enabling people to receive an earlier diagnosis, and we need to find an effective treatment for dealing with a horrible disease.
As other members have said, bile duct cancer is a cancer that affects more people who are perhaps older, but it is becoming more common in younger people. I fully understand that there are budgetary pressures on every Government and that, in almost every members’ business debate, members will ask the Government to find more money to fund the issue that has been raised, but I genuinely ask, on behalf of my constituent and all those who have gone through the same thing, for money to be found to put into specialised research, so that we can give hope to people who will face the condition in the future.
17:33
I thank my friend and colleague Marie McNair for securing this evening’s debate on cholangiocarcinoma awareness, the motion for which recognises that October is liver cancer awareness month. Sadly, incidence of the condition seems to be increasing. However, it was not until my colleague submitted the motion that I realised that there is more than one type of liver cancer. I simply did not know that, which is why it is so important that members’ motions are debated in the chamber. As well as educating other MSPs, it serves to raise awareness among the public.
I had written down that, as the final speaker in the open debate, I was probably going to repeat facts, but the truth is that I will almost certainly repeat everything that everyone has already said. However, when it comes to a subject as important as folk’s health and raising awareness, I am not going to apologise for repeating such information, because it is no bad thing to do so.
Cholangiocarcinoma is also known as bile duct cancer, and it seems to be increasing across all age groups, not just among the over-60s. Still, like me, most folk have never heard of it, yet it has the worst survival rates of any cancer. With that in mind, and with this month being liver cancer awareness month, let us change that and get the message out.
Although cholangiocarcinoma, or bile duct cancer, is considered to be rare worldwide, it is the second most common primary liver cancer. It is not only difficult to diagnose accurately; it is difficult to diagnose early. By the time it is diagnosed, it is often too advanced for surgery, which is currently the only potential cure.
Why is it difficult to diagnose it early? The early symptoms of it are very vague. Nausea and appetite loss are two of the symptoms. Let us be honest. Whose first thought would be to go and get checked if those were their only symptoms? I know that my first thought would be that I had eaten something dodgy or had some sort of bug.
In later stages, the symptoms can include jaundice—the yellowing of the skin and the whites of the eyes—itchy skin, pale stools, dark-coloured urine, unintentional weight loss and abdominal pain. I urge folk to speak to their GP if they have any of those signs or are worried about any of the symptoms. Although it is unlikely that they will have bile duct cancer, it is best to get it checked.
I am aware that the Scottish Government is committed to raising awareness of possible cancer symptoms through its primary care cancer education platform, GatewayC, which provides tools to support early diagnosis efforts and decision making at the point of referral. I am also aware that the Scottish Government has recognised that significant work was needed to develop the necessary genomic testing. I would therefore appreciate it if the minister could give an update on the work that has been undertaken with that, if at all possible.
I thank Marie McNair for the debate this evening. I and others look forward to hearing the minister’s reply.
17:37
I, too, thank my colleague Marie McNair for bringing the motion to the chamber, and I welcome the opportunity to close today’s debate on cholangiocarcinoma. I also acknowledge the valuable contributions that my colleagues have made tonight, especially as this is liver cancer awareness month.
Even though it is estimated that one in two people will develop cancer in their lifetime, the reality of receiving a diagnosis of cancer can still come as a complete shock, especially for the rarer cancers such as cholangiocarcinoma.
Liver cancers continue to have a devastating impact on far too many individuals and families across Scotland. As members will be aware, the Scottish Government published our ambitious 10-year cancer strategy in June 2023. We remain determined to improve cancer survival rates and to provide excellent and equitable care for all people who face cancer. At the forefront of that strategy is a dedicated focus on the less survivable cancers, including liver cancer, and improving outcomes for people who are affected.
Earlier this year, I had the privilege of speaking at the rethink liver cancer reception, which was hosted by AMMF and sponsored by my colleague Ben Macpherson MSP. As other members have done, I welcome Benjamin Carey to the gallery, as well as Anne and Derek. It was a deeply moving experience to meet them and families affected by cholangiocarcinoma. I heard at first hand about the challenges that they face. I also thank Jeremy Balfour for sharing his constituent’s experience and I ask Mr Balfour to pass on my thoughts to his constituent, as I am sure that everybody else in the chamber would wish to do.
Cholangiocarcinoma is a lesser-known and rarer cancer, so taking the opportunity in the chamber today to raise awareness of its common symptoms is vital to improving outcomes. I am thankful to my colleagues who have done that so eloquently.
We all know that the sooner cancer is detected and diagnosed, the better the outcome for the individual. Our earlier cancer diagnosis vision underpins our investment in a range of programmes aimed at supporting earlier diagnosis and ensuring that people receive timely and effective care. Our detect cancer earlier programme “be the early bird” continues, and the latest campaign, which was launched last month, encourages individuals aged 40 and over, particularly those in more deprived communities, to feel confident in seeking help with possible cancer symptoms. As Carol Mochan stated, we must ensure that we consider all groups in our society so that we avoid inequalities.
In August, we published the refreshed Scottish referral guidelines for suspected cancer, which are designed to support primary care clinicians in recognising symptoms that may indicate cancer and to ensure that people are on the right pathway at the right time. For the first time, those guidelines include criteria for non-specific symptoms. That update is especially important for rare or lesser-known cancers such as cholangiocarcinoma, where early signs, such as unexplained nausea or weight loss, can be subtle and easily missed. They are, as Elena Whitham described them, symptoms hiding in plain sight.
This year, we also launched Scotland’s sixth rapid cancer diagnosis service. Those services rule cancer in or out more quickly for those with non-specific symptoms. Additionally, a primary care cancer education platform called GatewayC was launched across NHS Scotland in April 2024. It provides innovative and tailored information to support earlier cancer diagnosis efforts and enable effective decision making. That free online platform is accessible to all primary care clinicians and includes information about liver cancers.
The Scottish Government has provided more than £14 million of funds in 2025-26 to reduce cancer waiting times across NHS Scotland, directing that work towards the most challenged pathways. We have also committed to additional funding for chemotherapy services that will reach up to £10 million a year by 2027, with £6.6 million being provided in 2025-26. By continuing to invest in cancer services and by reducing waiting times, we will detect cancer earlier and faster so that we can improve outcomes for people.
We have commissioned the Scottish HepatoPancreatoBiliary Network to lead the development of standardised pathways for HPB cancers. That work has been carried out in collaboration with the Scottish cancer network, the national centre for sustainable delivery and third sector partners, and includes reviewing existing clinical guidelines, identifying gaps and aligning best practice across Scotland. Tumour subtypes, such as bile duct cancers, will be included. That work is progressing at pace, and we expect the HPB network to work with the centre for sustainable delivery, which will separately be delivering the optimal diagnostic pathway for upper gastrointestinal cancers, including HPB, in 2026.
I understand the importance of expanded genomic testing for people with cholangiocarcinoma and the direct impact that that has on their care and their access to life-saving precision medicines. That was made very clear to me at the event in Parliament earlier this year.
Members will be aware that a wider programme of laboratory transformation and investment planning is under way to support a sustainable expansion of genomic testing. That is part of our long-term approach to deliver bold and ambitious action to reform and renew Scotland’s health and care systems.
However, recognising the importance of that test to cholangiocarcinoma patients and their families, I have asked the NHS National Services Scotland, as the commissioner of genomic testing, to bring that testing into service ahead of the wider reform programme. Implementation planning within the service is now progressing rapidly and I will be able to provide members with an update before the end of this year. Although I understand the impact of any further delay, I assure members that we are doing all that we can to bring that testing to the people who need it as quickly as possible.
I sincerely thank those who provide valuable information, help and support to anyone who is affected by cholangiocarcinoma or liver cancer. The Scottish Government and our NHS continue to work closely with third sector, community partners and social care partners to deliver our ambitious cancer strategy. We know that research is key to advancing how we prevent, diagnose and treat all forms of cancer and that it is of particular importance to cholangiocarcinoma.
I take this opportunity to recognise the significant investment that AMMF has made in both international and UK research institutions to fund research teams that are working to uncover the causes of cholangiocarcinoma, improve early diagnosis and develop more effective treatments. That includes nearly £150,000 that has been invested in Scottish institutions to fund cholangiocarcinoma-specific research, such as the trial in Glasgow that many of us have heard about today. I am pleased to learn that some patients have benefited from that trial, and it further reinforces our commitment to expanding genomic testing across Scotland, as I mentioned earlier.
I extend my thanks to all the third sector organisations, including AMMF, for supporting patients and families who are affected by cholangiocarcinoma, and to members for their contributions tonight. I look forward to working with them all to improve awareness, earlier diagnosis and outcomes for those who face less survivable cancers such as cholangiocarcinoma and to give those people hope.
Meeting closed at 17:45.Air ais
Decision Time