Chamber and committees

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 Ann 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 Ann and Derek from Milngavie, and Benjamin Carey and Stewart Phimister, 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 Ann 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, Ann 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.

Good morning, cabinet secretary and your officials. Sticking with the withdrawal rates, we have heard concerns that this withdrawal bill may cause additional pressure for schools. We have heard that withdrawal rates are low; some schools have no withdrawals. What are your thoughts on how we move forward, if the bill is passed? Do you foresee the changes placing additional pressures on schools?

That was helpful—thank you.

Cabinet secretary, many of the responses to the committee’s call for views missed out the question on part 2 of the bill. Do you have any additional thoughts on whether the proposals in part 2 are easy enough to understand? It is important that guidance is provided, because it is vital that children, parents and public authorities understand the impact of part 2 of the bill.

Thank you. It is a very technical bill, so the more guidance we can get, the better.

On a point of order, Presiding Officer. My app froze. I would have voted no.

Do you have any views on whether there is a need for a commissioner for future generations in Scotland? I will pop that to you, Professor Reid, as you are in the room.

Thank you. Professor Jones, do you have any thoughts?

Professor Jones, do you have any thoughts on that before I hand back to the deputy convener?

Thank you.