Chamber and committees

The loss of a baby, no matter at what stage of pregnancy, has a profound and lasting impact on women and their families, so I offer my deepest sympathy to anyone who has experienced baby loss.

Care and support should be tailored to individual circumstances. For most people, that will come via health boards or third sector organisations, but a small number of people might require specialist mental health services via maternity and neonatal psychological intervention services. Our continued investment since 2019 has resulted in a substantial increase in the number of services that are available. In addition, national health service boards are implementing the national bereavement care pathway for pregnancy and baby loss.

We have to be clear that the reports that we rely on illustrate the growing complexities around birth and the changing demographics across the UK, which means that it is more important than ever to ensure that all the women receive care and support that is tailored to their changing needs and that our services adapt and evolve to meet them.

I want to say a little more about the Scottish maternity—

I thank Emma Roddick for raising the issue in the chamber. I recently attended a round table in the Parliament led by the baby loss charity Held In Our Hearts. It was attended by those who had experienced baby loss, by researchers and, importantly, by health boards. It was a very powerful event. To enable the best support for those families, a combination of all those stakeholders, working together, is needed. Earlier this year, I was pleased to announce the delivery framework for miscarriage care in Scotland, which is supported by £1.5 million in funding. The framework sets the expectation that NHS boards ensure that all staff receive training in providing compassionate, culturally competent care after miscarriage and other early pregnancy complications.

I have been clear in what I have said. Through the task force, we will work towards how we start to look at an investigation.

I, too, thank Jackie Baillie for bringing the debate to the chamber, and I am hugely grateful for the thoughtful and heartfelt contributions from members across the chamber. This subject goes above party politics.

Please allow me to echo the cabinet secretary’s opening remarks. I do not underestimate how difficult today’s debate will have been for the families in attendance who have been affected by the issues. I thank them, too, for so powerfully sharing their experiences in the “Disclosure” documentary in order to enable change. I extend my deepest condolences to you personally and to anyone affected by those issues.

There is no doubt that we all agree that delivering safe, high-quality maternity care for all mothers, babies and families in Scotland must be a priority.

I would like to continue.

I want to say a little more about the Scottish maternity and neonatal task force, which I will chair. As the cabinet secretary identified last week, it will provide strategic national leadership and will include senior figures from across our health system and independent bodies, as well as third sector and advocacy organisations. I have also made it clear that I want the voices of women and families—as well as those of front-line midwives, nurses and doctors—and their experiences of maternity services to be heard by the task force. Their voices will be at the heart of the group.

I thank Patrick Harvie for his speech. He was correct in suggesting that the work that is being progressed by Healthcare Improvement Scotland in its inspections and by the task force are first steps. I also agree with Stephen Kerr that culture is at the centre of how any organisation operates.

Mr Harvie asked specifically how the Government will ensure that a national review is not only about the design and delivery of services but also about the wider issues that have been raised. I listened carefully to his points about important issues such as culture, staffing and the need to ensure that the scoping of what is part of a national review is designed by experts. I can confirm to him and others on the record that, as chair of the new task force, I will seek to define—from the task force—how an investigation can take place.

My view is that the findings of the HIS inspections of all maternity units must form part of the task force’s consideration. For example, we know that the inspections will bring to light similar emerging themes across Scotland, so it would be right for the task force to consider what should be the specific focus of a national investigation. Mr Harvie and others have my assurance that I will take that work forward, and I will be happy to update the Parliament on the specific work of the task force as it progresses.

As the cabinet secretary’s amendment makes clear, no neonatal intensive care units are closing. All local neonatal units in Scotland will continue to offer neonatal intensive care for their populations.

I have only one minute left.

The new model of neonatal intensive care was recommended by the “Best Start” report in 2017, and the impact that that will have on babies is clear, as members have said in their contributions. The 2017 report says that

“three to five neonatal intensive care units should be the immediate model for Scotland, progressing to three units within five years.”

As our amendment notes, Bliss, the UK’s leading charity for supporting families with premature or sick babies, has reassured families that the model in Scotland is the safest and best possible one for sick babies. It is also important to recognise that, as soon as babies are well enough, they will be repatriated to their local neonatal unit. I know that there is no place for complacency when it comes to the care of women and babies in our maternity services.

The Scottish Government is committed to timely and continuous improvement. We will hold boards to account to ensure that every woman, baby and family across Scotland receives the high-quality care that they deserve.

I want to make some progress.

I reiterate the assurance that we gave to women and families last week that maternity and neonatal services are safe. As others have noted, the vast majority of the women and their families have very good experiences of their maternity care and have high praise for the caring, compassionate and professional staff and those who look after them.

Over the past two years, I have had the privilege of visiting maternity and neonatal services across Scotland, from some of our largest units to our smallest, and of meeting the staff, service users and service leaders. I have seen at first hand the tremendous work that is delivered by our maternity and neonatal service staff. However, there is room for improvement—there always will be.

Our approach to maternity and neonatal services is firmly grounded in evidence. Together with the other UK nations, we commissioned the national maternity and neonatal audit programmes and the MBRRACE-UK—mothers and babies: reducing risk through audits and confidential enquiries across the UK—confidential inquiries, which have given us rich data about our services and have allowed us to benchmark.

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.