Chamber and committees

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 would like to spend a wee bit of time thinking about data. This morning, we have heard a lot about data gaps and the work that is being done to understand those in every local area. I understand the robustness of the child and adolescent mental health services waiting times data and how that is assessed and presented by Public Health Scotland. I am interested in understanding—and I think that the committee would benefit from understanding—the impact that the national specification implementation and the focus on CAMHS waiting times has on neurodevelopmental waiting lists and what that looks like at the local level. That is very different from the CAMHS waiting lists as we understand them. It would be helpful if you could set out for us, as you understand it, what impact that has had on CAMHS neuro waiting lists.

Where it becomes tricky for individuals at a local level is the fact that, for some people, it will be CAMHS that does the assessments once they get there. That feels a bit confusing. It will be confusing for someone whose child has come off the list that it is perhaps still CAMHS that eventually delivers that service.

My final question on data is on whether the Scottish Government would commit not only to collecting and publishing data on neurodevelopmental waiting times but to understanding the need in that respect. I am thinking of missing data sets such as gendered data and information on co-occurring conditions that it might be useful for, say, a GP to understand. They might have a patient who has been diagnosed as being autistic or as having ADHD, so they might ask, “What other things should I, as their general practitioner, be looking at? What other conditions are they presenting with?”

It is all about understanding what data we do not have. For example, we do not publish sex-disaggregated data in this space, and I think that we really need to start looking at that. Is the Scottish Government looking at that data issue as something that the task force could address?

Good morning, minister and your officials.

I want to explore that area a bit further—I thank Patrick Harvie for starting us off. I am thinking specifically about an individual constituent of mine: a young person who has had no access to any waiting list, despite repeated referrals by his GP. He finds himself in a situation in which he does not have the co-occurring mental health issues that are required in order to access, in Ayrshire and Arran, the services that are set out in the national specification. His family have the means to seek a private diagnosis, but his local GP practice has a blanket ban on undertaking any such shared care arrangements.

How does the Government envisage a system in which that type of situation can be addressed in a way that I think the Royal College of Psychiatrists has set out in its paper, which talks about the fact that no one agency or model will be able to do all the work that we need it to do? In some situations, we have seemingly blanket bans in GP practices not to undertake any shared care. That is not based on an individual or clinical assessment of the patient—the practice is just not entertaining that, yet the patient is not meeting the practice’s referral thresholds to get on to a list. That leaves some young people who are essentially hidden in the system and whose needs are not being met. How do we address that type of situation?

Thank you.

Following on from that, it would be helpful to understand the impact on lists of implementing the national specification. We have heard from organisations and individuals in their written submissions that, once that was implemented, their young person—or they themselves—came off a list but did not go on to any other list. There is a direct impact for people on the ground that we do not yet have the data to understand. Is the work that you are doing as part of the task force—with boards and local authorities and their partnerships in schools—about understanding what implementation looks like on the ground for individuals in each of those areas? What does that data tell us about what the need is?

In the specific instance that I mentioned, the school has been proactive and supportive of the family and it has put information forward to support the need for an assessment.

I have one other question about shared care. At our previous evidence session, we heard certain comments and the phrase “wild west” was used. I felt compelled to come back in at the end of that session to ask about the value of private providers, especially when they are based in Scotland, regulated by Healthcare Improvement Scotland and partnered with many local areas to deliver assessments. Is there a value in that sector if it is based in Scotland, is conducting online assessments and is subject to all the same checks and balances as any other practitioner in Scotland that might be rooted in the NHS?

Thank you for putting that colourful and helpful analogy on the public record. Having been a member of a community planning partnership for years, I will not say what animals I thought were accompanying me round that table.

That is very helpful and reassuring.