Official Report 978KB pdf
The final item of business is a members’ business debate on motion S6M-19043, in the name of Emma Harper, on supporting people living with secondary breast cancer in Scotland. The debate will be concluded without any question being put.
Motion debated,
That the Parliament recognises that October 2025 is Breast Cancer Awareness Month; welcomes the raising of awareness of secondary (metastatic) breast cancer, which, it understands, is an incurable disease that affects an estimated 61,000 people across the UK, including around 4,000 in Scotland; acknowledges that this condition occurs when cancer cells spread from the breast to other parts of the body; understands that it is one of the leading causes of death among women under 50 in the UK; believes with concern that many people are unaware of the condition and its symptoms, and that misconceptions persist around its nature and terminology; understands that Public Health Scotland does not currently collect comprehensive data on metastatic cancer, particularly in cases where it is a recurrence of primary breast cancer; notes commitments made in the Scottish Government’s 2016 strategy, Beating Cancer: Ambition and Action, and the 2023-2026 Cancer Action Plan, to progress data collection; further notes calls from charities such as Make 2nds Count and Breast Cancer Now for improved national data collection, better access to specialist care and increased investment in research and support services; commends the work of these organisations in supporting patients and families, raising awareness and advocating for change, and notes requests for the Scottish Government to ensure that the commitment to improve data collection on metastatic cancers is fulfilled by March 2026, and that people living with the condition are better supported, counted and empowered.
17:23
I am grateful to colleagues across the parties in the chamber for supporting my motion, and I thank Make 2nds Count and Breast Cancer Now for their support ahead of the debate.
I declare an interest, as a registered nurse. If I went back to January 1988 and told the newly qualified Emma Harper RGN about the advances in the diagnosis and treatment of cancer that have taken place since then, the young Emma would have been amazed and chuffed wi all that progress.
The risk of dying from cancer is at its lowest level on record. Public health campaigns have helped to change lifestyles and tackle risk factors, while treatment and diagnosis have advanced hugely over the decades. We should acknowledge that, along with the fact that we are doing some incredible work in treating primary cancers with surgery, chemotherapy, radiotherapy, endocrine therapy and medication such as trastuzumab—I had to write that down twice so that I could make sure that I said it properly. Trastuzumab is a type of targeted therapy drug, known as a monoclonal antibody, for breast and stomach cancers. It is used if tests show that the cancer cells have too much of a protein called HER2. Those life-changing and life-saving leaps forward in prevention and treatment are all welcome, and we all hope that there is more progress to come.
However, we should and must do better with regard to metastatic cancers in particular. We can go back through years of mortality statistics for primary cancer because Public Health Scotland and its predecessor bodies have been collecting that data for decades. Unfortunately, however, that is not yet the case for secondary and metastatic cancers, including secondary breast cancer.
At best estimates, around 4,000 people across the country are affected by metastatic breast cancer, but the numbers alone cannot convey the human impact of living with a condition that you know cannot be cured. Until we know accurately the scale of the challenge that we face, it makes meeting that challenge harder than it needs to be. Improvements in care and research would benefit hugely if we had a better data collection and analysis service and knew for certain how many people in our country are affected.
I hope that the Minister for Public Health and Women’s Health will be able to update us on progress on making that happen. However, as I said, the numbers are just that—numbers—and they do not convey what the individual impact is, not just on those who are living with secondary breast cancer but on their friends, family and loved ones.
Secondary cancers are often misunderstood. People often assume that they are a further, separate condition, when in fact they have metastasised from primary breast cancer or another cancer. The original condition may have been treated successfully but, unfortunately, cells from the original tumour break away and seed in other tissues and organs of the body. That is one of the biggest tragedies of secondary breast cancer: people may think that they are clear, but they face further heartbreak down the line.
We have a job to do in educating the public and spreading awareness of the facts about secondary breast cancer, not just so that people know about the symptoms for their own health but so that the people around those who are diagnosed with metastatic cancer are prepared and equipped for that diagnosis and are as ready as they can be to give the love and support that their loved one needs.
I know that there are treatments for secondary breast cancer, using a combination of chemotherapy, radiotherapy and other targeted and immunotherapy treatments. I am also aware of the recent denial of two specific medications by the Scottish Medicines Consortium. Both Make 2nds Count and Breast Cancer Now have responded to that decision, and I know that there are many disappointed people voicing their concerns.
I welcome to the public gallery women who are living with secondary breast cancer, whom I and other members met earlier today in Parliament. I thank the minister for also taking the time to meet them. It was a dreich day outside, and folk got a bit soaked, so it was welcome to meet them in the Parliament cafe. We covered issues such as needing specialist nurses or other healthcare practitioners for secondary cancers, and the challenges that people who live in rural areas such as Dumfries and Galloway and the Scottish Borders face in being able to see specialists.
I acknowledge that digital technology can be part of the engagement with, and care for, people with secondary breast cancers. I am, however, looking forward to progress being made to establish a Maggie’s centre in Dumfries, which was announced in August this year.
Members know what it is like to lose a colleague and friend to secondary breast cancer. Ahead of the debate, I have reflected much on the mentoring and advice, and the friendship, that I had from Christina McKelvie MSP. Christina was an amazing person, an amazing MSP and a fabulous minister. It was Christina, through Keith Brown, who asked me to take forward the motion and debate today. It will be a short debate, in fact, because I am aware of the time.
Let us all leave here today resolving to do better and to look at data, care and treatment for people in rural areas. We need to improve the lives of those who are living with secondary breast cancer and secondary cancer and metastatic disease. We need to improve their chances so that their life lasts much longer, as long as possible. I look forward to hearing colleagues’ contributions and the minister’s response.
Thank you, Ms Harper—looking at the number of colleagues who want to participate, I am not sure that I agree that it is going to be a short debate.
17:29
I am pleased to speak in the debate and I thank Emma Harper for bringing this important issue to the chamber. I also thank Breast Cancer Now and Make 2nds Count for their helpful briefings for the debate. Those organisations have worked tirelessly, alongside many fantastic organisations in the third sector, to highlight the issue of secondary breast cancer. I hope that colleagues can join me in paying tribute to some of those organisations and the important work that they do, which includes funding vital research, pushing for better access to specialist care and supporting patients and their families. That work reminds us that, although research and data are crucial, compassion and care are just as important to so many people.
October marked breast cancer awareness month, which was an opportunity to pause and recognise all those who have been affected by the condition in the past, and all those who are presently living with breast cancer. As Emma Harper’s motion highlights, it is also an opportunity to raise awareness of secondary breast cancer. Despite the condition’s serious nature, awareness and understanding of secondary breast cancer remain far too low. For example, many people are unaware that breast cancer can return and spread to other parts of the body, and there are many misconceptions around the symptoms that occur. Just as with many types of cancer, raising public awareness of secondary breast cancer is vital, and breast cancer awareness month is a huge opportunity for us to do that.
For many people, living with the condition can mean a continuous cycle of hospital visits, treatment and much uncertainty. All too often, the experience is made even harder by a lack of recognition. The truth is that no accurate data exists on how many people are suffering from secondary breast cancer in Scotland. Public Health Scotland data shows that around 4,200 patients were living with secondary breast cancer in 2023. However, that does not include those who were diagnosed following a recurrence or spread of the disease.
For our national health service, and for the many important third sector organisations that work alongside it, the lack of data means that it can be very difficult to tackle the issue. Without that data, we do not know how many people are living with the condition or are being treated, and we do not know how we can ensure improved outcomes for the future. That means that there are potentially thousands of people across Scotland who are not getting the treatment and support that they require.
It is now nearly 10 years since the Scottish Government first committed to collecting data on those with secondary breast cancer in Scotland. It is time that we finally see real progress on the issue, and I hope that the minister will make that assertion in summing up.
We also know that access to specialist nurses and palliative care is not consistent across health boards in Scotland. Patients deserve better than a postcode lottery in dealing with cancer treatment, and better links between oncology services and palliative care are required.
I hope that the Scottish Government can commit to delivering on its “Cancer Action Plan for Scotland 2023-2026” and ensure that no one who is living with secondary breast cancer is ever made to feel invisible or forgotten again because, at the moment, they are.
17:33
I am wearing my secondary cancer pin this evening to mark the particular circumstances of those who are diagnosed with secondary breast cancer. It is a group of people who are too often unseen, living with secondary, or metastatic, breast cancer.
Secondary breast cancer occurs when the cancer cells spread from the breast to other parts of the body. It can develop months, or even years, after an initial diagnosis. Although it is currently incurable, it is treatable, and with the right care, people can live well for longer. It is estimated that 4,202 people in Scotland were living with the condition at the end of 2023.
However, we count only those whose first diagnosis was metastatic; the figure does not include people whose cancer returned after a primary diagnosis. That means many people who are living with the disease are not fully captured in the data sets. We live in a world of data now. Artificial intelligence is taking over the whole planet, and our health services have to do better at collecting the data that is important for scientific research in order to improve the lives of people with breast cancer and secondary breast cancer.
Having the data is essential, as it helps to ensure that people have access to the treatment, support and specialist care that they need. Without that data, we cannot fully understand the impact of secondary breast cancer, or why and how it happens, plan services effectively or ensure access to innovative treatments—as Emma Harper mentioned—that rely on genomic testing.
Around 1,000 people in Scotland die from breast cancer each year, almost all of them from secondary breast cancer. The impact reaches far beyond the individual, touching families, friends and communities. I hope that members do not mind me saying that I am just off the phone to my sister, who was diagnosed with breast cancer last year and who was attending the hospital with the thought that she might have had a secondary breast cancer. Fortunately for our family and for her, that was not the case.
I also want to speak about a person who is close to all our hearts: Christina McKelvie, who was a friend and a passionate advocate for women’s health, for fairness and for dignity in care. She worked tirelessly to ensure that the voices of those who are often overlooked were brought to the forefront in the Parliament. We miss her deeply, and we miss her compassion, energy and unwavering belief in a Scotland where no one should be left behind.
I am very honoured to have taken up the mantle of hosting the wear it pink event in the Parliament on behalf of Breast Cancer Now. It was at that event this year that I was able to talk to several women who were living with secondary breast cancer, and I heard their plea that more needs to be done to understand and support those who are living with the condition in Scotland. Along with better data, access to the right treatments is critical. Genomic testing can determine eligibility for new targeted therapies, helping to slow disease progression and improve quality of life. Expanding access to those tests across Scotland will ensure that patients can benefit from the treatments that are best suited to them.
People who are living with secondary breast cancer and their families deserve to be seen, counted and supported. Accurate data, timely access to treatments and specialist care are all essential in achieving that. We have to work together to improve the situation, in particular with regard to data collection and consistency across health boards.
I pay tribute to everyone who is in the public gallery, whose voices have been heard today—it is so brave and important that you have come to speak to us, and I thank you very much for doing so.
17:38
I thank Emma Harper for bringing this important debate to the chamber. I also take a moment to thank Christina McKelvie and note the incredible work that she, too, did for breast cancer awareness. I thank the women from Breast Cancer Now and the Make 2nds Count campaign who took time to speak with us today, many of whom are in the public gallery.
In my region of Glasgow, NHS Greater Glasgow and Clyde has one of the highest rates of cancer incidence in Scotland, so this matter is deeply personal for my constituents. Secondary breast cancer is one of the leading causes of death among women under 50 in the United Kingdom. It affects around 4,000 people in Scotland, but gaps in data collection mean that we do not yet have the full picture. Without that data, people with incurable secondary breast cancer are not properly planned for and are not guaranteed to be able to get the treatment that they require. That is the message that I heard when I spoke to women in the Parliament cafe this afternoon.
I agree whole-heartedly with the women who spoke to us today that improved national data collection is crucial so that we can detect and support people who are living with the condition. I ask the minister to reflect on the importance of that, and on the likelihood of fulfilling the Government commitment on data collection and the importance of doing so by March 2026.
Organisations such as Make 2nds Count, Breast Cancer Now, Maggie’s, Marie Curie and the Beatson West of Scotland Cancer Centre in Glasgow work tirelessly to support women, and some men, who are living with breast cancer, and I put on record my thanks to those organisations. They support patients and families such as two of my constituents who have recently come through their breast cancer journey: a mum and daughter in the same family. Cancer rocks families to the core, as it did that family—it was no different for those two brave women. Its weight puts a strain on families and on their resilience and recovery. For my constituents, that strain was eased hugely by family and friends, and—crucially—as a result of the work of organisations such as those that I mentioned.
Much of that strain was health related, as one would expect, but it was also financial. Attending appointments, taking time off work, spending money on travel to and from healthcare and support centres and lower take-home pay as a result of time off work all affected my constituents’ finances, and still do. That is why I believe that, in addition to ensuring that social security supports people, employers must be supported to ensure that their processes, policies and sick-pay schemes are appropriate for someone with a terminal diagnosis.
When someone is living with cancer, tight finances affect not just day-to-day life—sadly, all too often, they affect treatment choices, too. The women I spoke to today told me that there are drugs available on the NHS for free in England that they cannot access in Scotland. Those drugs target cells and can improve outcomes for women, yet the Scottish Medicines Consortium has rejected them for use on the NHS here, leaving a situation in which only women with money can afford to access them. Those drugs are used elsewhere, and women are rightly wondering, “Why not here?” I ask the minister whether she can set out why that is the case and what she might do to try to ensure that women in Scotland can access the same life-changing therapy as women elsewhere.
I hear what Pam Duncan-Glancy says, but would she acknowledge that there are significant medications in Scotland that are not available elsewhere? It is a mixed picture across the UK, with HER2 treatment, for example, being available in Scotland but not elsewhere. I suppose that it is a challenge for every authority to find out what they can and cannot afford.
I can give you the time back, Ms Duncan-Glancy.
I thank the member for that intervention, and it is all too real for people to hear that this issue comes down to money. I acknowledge that there are some drugs available in Scotland that are not available elsewhere. Nonetheless, it is still the case that women in Scotland really would like to be able to access some of the life-changing drugs that are available elsewhere, just as women elsewhere might want to access some of the drugs that are available here.
The mum and daughter I mentioned are not alone in experiencing financial hardship as a result of cancer. We heard much about that in last week’s debate, which was led by Paul Sweeney, on the research that found that people are dying in the margins and dying in poverty.
I turn briefly to one other health inequality and risk factor that is associated with breast cancer. It concerns the experience of disabled women, in particular wheelchair users. I put on record my huge thanks to the staff at Gartnavel breast clinic in Glasgow for the way in which they helped me and my chair to navigate a mammogram machine. That was, I have to say, no easy task, and those staff were, and are, exemplary. However, they are working to provide such a good service in a system that could, I think, make some improvements for disabled women.
The current advice from Public Health Scotland on “Breast screening for wheelchair users” says that a mammogram is suitable only if women can
“attend in a manual wheelchair with removable sides ... hold themselves upright ... lean forward to allow their breasts to be positioned in the X-ray machine ... hold their arms clear of their chest and the X-ray machine”
and
“hold the position”.
The guidance goes on to say that
“Mammography is not suitable without all of the above”
and advises women instead
“to remain breast aware and speak to their GP”.
It states that a woman who has symptoms
“should be referred for assessment”.
That is all crucial but, given that the logistics are tricky, I wonder whether there may now be an opportunity for us to reflect on that guidance and see whether we can improve it, and perhaps put in place something more proactive to support women in those circumstances who are experiencing breast cancer.
I will end my remarks on the contribution of research to improving and saving lives. World-class research in precision medicine is taking place right now in Scotland, in Glasgow, and I am incredibly proud of that. It is providing hope to millions of people around the world that one day, breast cancer, including secondary breast cancer, will indeed be curable. The experience is worrying, painful and hard, but it is incumbent on us all to ensure that our constituents who are living with the condition are empowered and have access to world-class care, and can live with the hope that it will, one day, be curable.
17:45
I am grateful to Emma Harper and, of course, Christina McKelvie, for bringing the debate to the chamber and giving us the opportunity to discuss an important issue that touches every constituency, every community and, perhaps, every person in Scotland—certainly every person in the chamber.
It feels weird to speak for Christina because she never needed anyone to do that but, thankfully, this is an issue that she was consistent and clear on, so I have no need to make any assumptions when I say this. She was determined to help those around her, consistently encouraging women to check themselves regularly and, crucially, to attend all their screening appointments. A constituent of mine recently had a clash between an event and a breast screening, and she said to me, “I know which one Christina would have told me to go to.” Over and above those repeated calls to action, what sticks in my mind from our conversations was her fear of getting that diagnosis. From thoughtful poetry to a quick passing comment in the middle of dinner, it was always on her mind. I know that many people are living with that fear today and they need support with it.
The motion rightly commends the work of charities such as Make 2nds Count and Breast Cancer Now. I have engaged with Breast Cancer Now on a number of occasions, not only when it is in the Parliament offering us pink feather boas, hats and sunglasses at its photo booth but specifically on looking at what policy changes should be prioritised if we are to improve the diagnosis, treatment, support and awareness of secondary breast cancer. Its campaign to improve the collection of data on how many people are living with secondary breast cancer is absolutely necessary if we are to look at what more is needed in terms of resources, advice and support for those patients. I have also been grateful for its interest in looking at local situations and taking that approach of deep diving into what is happening in all health boards, including the five in my region, not just the national picture.
Those organisations provide a critical safety net of emotional, practical and social support that is vital for people who are living with an incurable diagnosis such as metastatic breast cancer.
I also want to mention Maggie’s Highlands. I have had the pleasure of visiting the charity’s premises next to Raigmore hospital and meeting the hard-working, passionate and friendly team, seeing for myself as I enjoyed a cup of coffee that folk of all ages were coming in and out, maybe following an appointment at the hospital, maybe because a loved one had just received news and maybe just because they were having a bad day. They were all welcomed to a safe space with a supportive environment and people.
That is particularly important when we consider that many of my constituents are travelling vast distances to get to the hospital and it is important for them to know that respite is waiting for them just to the side of the hospital building. Maggie’s helps to mitigate the isolation that is felt by patients who are often far from home when they receive difficult news. It offers a point of connection and a sense of community. Its services, including support groups and workshops on things such as managing stress and living with on-going cancer, are exactly what is needed to empower patients and help them to navigate the continuous nature of secondary breast cancer.
The Maggie’s centre in Dumfries is in progress. Does the member agree that it would be absolutely fitting that a Maggie’s centre is located in Dumfries, because it is the home toon of Maggie Keswick?
I was not aware of that until just now, but it certainly sounds fitting. Personally, I would love to see a Maggie’s being made available to everyone, because the strength and support that I have seen people get from that charity is deserved, no matter where they live. The success of the model is a demonstration of partnership working done well. As Parliament calls on the Scottish Government to better support people living with the condition, we must ensure that that vital partnership is not just maintained but robustly funded and integrated into the overall cancer strategy.
We have heard from many members this evening about how personal the issue is to them. I know that they have that in common with many of those whom I represent in the Highlands and Islands. I will continue to work with Breast Cancer Now, Maggie’s Highlands and any constituent who reaches out for support in dealing with services to get the best possible help and progress for those who are at risk of or are living with secondary breast cancer.
17:49
I thank my colleague Emma Harper for bringing this debate to the chamber. Secondary breast cancer occurs when cancer cells spread beyond the breast, often months or years after the primary diagnosis. It can also be found at the same time or even before the primary cancer. By the end of 2023, for 4,202 patients in Scotland, it was their initial diagnosis.
Despite the Scottish Government’s commitment in its 2016 strategy, “Beating Cancer: Ambition and Action”, and in its “Cancer Action Plan for Scotland 2023-2026” to improve data collection on secondary and metastatic cancers, data for secondary breast cancer is currently not routinely or consistently collected across Scotland. Public Health Scotland’s estimates only count people who had secondary breast cancer as their initial diagnosis and do not count diagnosis following a recurrence or spread of the disease. That is concerning, because breast cancer is one of the leading causes of death for women under 50.
We could reduce that statistic if data was collated both from those who were initially diagnosed with secondary breast cancer and from those who developed secondary breast cancer after an initial breast cancer diagnosis. That would help us to understand which populations see a recurrence of breast cancer and why, which treatments both sets of patients are accessing, what is working, which patients could try new treatments and whether both types of patients are getting the support that they need to cope with their diagnosis. Without knowing how many secondary breast cancer patients Scotland really has, how can the Scottish Government recruit enough specialists or properly workforce plan for tailored cancer services and support? Could screening and preventative health measures have reduced the risk?
I acknowledge that the debate is focused on supporting people living with secondary breast cancer but, predictably, I turn my thoughts to what we can do more of before that diagnosis. Artificial intelligence is transforming breast cancer imaging across multiple modalities, such as mammography, ultrasound, MRI and tomosynthesis. Recent studies show that AI can match—or, dare I say, outperform—radiologists in image reporting, which helps to reduce human error. However, its strength lies in amplification—doing more—and not in automation. AI gives health professionals more time with their patients and allows them to offer more personalised care and better patient choices. We need to invest in healthcare technology in Scotland’s NHS to make that the standard and give our NHS professionals the tools that they need to make a difference.
Alongside screening sits prevention. The European prospective investigation into cancer and nutrition—EPIC-Europe—which is co-funded by Cancer Research UK, is one of the biggest studies into the links between diet, lifestyle and cancer. Thirteen years ago, it found that those who were most physically active were 13 per cent less likely to develop breast cancer and that those who were moderately active had an 8 per cent lower chance of developing breast cancer. It is thought that physical activity may lower certain hormones and inflammation, helping to reduce the risk of breast cancer developing or progressing. We knew that 13 years ago but, according to the latest Scottish health survey, in 2024, only six in 10 adults in Scotland met the recommended levels of physical activity. The data has not significantly moved since 2012. Thirteen years ago, Sara Hiom, director of information at Cancer Research UK, said that we would be pleased to hear that
“You don’t have to train like an Olympic athlete”.
I am pleased to hear that. Exercise can include anything that leaves us slightly out of breath, such as doing the garden, walking the dog or housework. That is the whole point, but somehow that message is not getting to the communities that it needs to reach, and it is that lack of awareness that we need to address.
17:53
I am grateful to my colleague Emma Harper for securing this incredibly important debate. I also thank those who have joined us tonight in the public gallery for their support. It is very much appreciated.
Last month, I spoke in my colleague Clare Adamson’s debate for breast cancer awareness month. In my speech, I called for more to be done to beat secondary breast cancer, for which there is currently no cure. As I mentioned, approximately 1,000 women in the UK die each month due to secondary breast cancer, with an estimated 4,000 people in Scotland impacted by it. I agree with Breast Cancer Now that this is a matter of urgency and that we must dramatically improve outcomes for those whose cancer has spread.
Of course, it would be remiss of me to speak today without mentioning my dear colleague Christina McKelvie, who we sadly lost to metastatic breast cancer. Christina was strong and passionate about tackling inequality and injustice. After seeing her battle, we must all strive for greater awareness and for more effective research for those affected by this cruel disease. We cannot accept anyone else losing their life to breast cancer.
I recently met one of my constituents, who is a breast cancer nurse, to discuss breast cancer awareness and to push for more to be done. During our discussion, my constituent urged me to call for better data collection for those who live with incurable secondary breast cancer. As noted by Breast Cancer Now, without proper data, thousands of people are missing from and not counted in statistics, not planned for by NHS Scotland and not guaranteed to get the treatment and care that they need. That is crucial—without the data, we will always be limited in how we can improve things. According to Breast Cancer Now, by not counting them, we leave people with secondary breast cancer feeling that they just do not count.
Breast Cancer Now is joined by Make 2nds Count in calling for improved national data collection, better access to specialist care and increased investment in research and support services. I thank both groups for their work to support patients and families in pushing for change. I back their calls for the Scottish Government to ensure that it fulfils its commitment to improve data collection on metastatic cancers, given that breast cancer is one of the leading causes of death in women under 50. It is vital that we do everything that we can to beat the disease, and that includes collecting the data that is needed.
It is also essential that those who are impacted have good access to clinical trials. Research that was carried out by Make 2nds Count and Professor Janet Dunn, head of cancer trials at Warwick clinical trials unit, found that the majority of secondary breast cancer patients have never had a conversation with their clinician about clinical trials. However, the metastatic and secondary breast cancer survey also demonstrated that patients are keen to be involved in research but face barriers to inclusion. Therefore, it is welcome to note that, following that research, Make 2nds Count launched a UK clinical trial registry, which is a one-stop shop for trials that are suitable for breast cancer patients.
My sincere thanks go again to Breast Cancer Now and Make 2nds Count for all their outstanding work, and to my constituent for taking the time to meet me and to explain the importance of collecting data for secondary breast cancer.
In memory of those we have lost too soon, we must continue to work together and strive to improve outcomes and survival rates for those living with metastatic breast cancer.
17:57
I, too, thank Emma Harper for securing this important debate and for acknowledging the powerful work of Make 2nds Count and Breast Cancer Now in giving a voice to those who live with incurable secondary breast cancer.
Behind every statistic, there are real people—mothers, daughters, sisters and friends. There are people such as Rhoda, one of my constituents, who bravely shared her story with me by email. Rhoda was first diagnosed with secondary breast cancer back in 2012. She told me that, by the time she had found the lump, the cancer had already spread to her lymph nodes and bones. With surgery, radiotherapy and on-going hormone treatment, she was stable for many years and was able to continue to work full time and volunteer in her community. However, earlier this year, sadly, her cancer recurred and spread further.
Despite her courage and determination, Rhoda told me that what troubles her most is not her illness but the lack of progress in recording how many people in Scotland are living with advanced breast cancer. She asked me how we can plan cancer services when we do not even know how many people are affected. It is a simple but profound question, which gets to the heart of the debate.
As others have mentioned, we do not know how many people in Scotland are living with secondary breast cancer. Although new diagnoses are recorded, cases where breast cancer has returned or spread are not consistently tracked or published. As a result, thousands of people such as Rhoda are in effect missing from our health data. They are not reflected in official numbers, NHS Scotland does not plan consistently for them and, without being properly counted, they cannot receive the care and support that they need and deserve.
Almost 10 years ago, the Scottish Government committed to changing that. That commitment was renewed in the cancer action plan for 2023 to 2026. However, here we are, nearing the end of that plan period and the promise remains unfulfilled. As other members have done tonight, I therefore ask the minister to give us more information on that. Without comprehensive data, we cannot plan services, target resources or make fair and informed decisions about access to treatment. As Rhoda rightly pointed out, how can we decide which new cancer drugs to fund or negotiate fair prices with the companies if we do not even know how many people might benefit?
It is not just about data; it is about dignity and treatment. People who are living with secondary breast cancer deserve to be recognised, counted and properly cared for. We should have confidence that decisions about their treatment are built on real understanding, not on guesswork or gaps in information. We need to make sure that those who are living bravely with secondary breast cancer, like my constituent and many others across Scotland, are no longer invisible to the system. It should be there for them and we should know who they are.
I am conscious that a couple of colleagues still want to participate in the debate. In order to have sufficient time to allow them to do so, I am minded to accept a motion under rule 8.14.3 of standing orders to extend the debate by up to 30 minutes. I invite Emma Harper to move such a motion.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Emma Harper]
Motion agreed to.
18:02
I congratulate the member and colleagues on their contributions to date, but it would not be possible to contribute without speaking of our late colleague Christina McKelvie, who died earlier this year from metastatic breast cancer. That cancer spreads to another part of the body when cells break away from the original tumours in the breast and travel to other parts of the body. It can come back months or years after the original diagnosis and treatment, and almost 30 per cent of women who are diagnosed with early-stage breast cancer develop metastatic disease.
I understand that Christina attended a breast screening programme in December 2020. In February 2021, she announced a short medical leave, and another short period of leave followed in September, after which she told us that she had completed treatment for breast cancer. She was also told then that she was in remission, and back came the old cheery, breezy Christina—her worry, her fears and her tears, she kept to herself and her nearest and dearest. In June 2022, when the breast cancer charity moonwalk event was held in Edinburgh for the first time in three years, she participated as part of a cross-party team of women and also sponsored the wear it pink campaign.
However, last year, Christina was diagnosed with metastatic breast cancer and went on leave in August 2024 to focus on her treatment. I remember her coming shortly before that to tell a wee group of us, with our coffee, that they had found a large lump on her neck. We feared for her but, of course, said nothing, because there was nothing to be said. She died earlier this year, aged only 57.
Within a few years, she had coped with breast cancer, rung the bell and got back to her smiley, stylish self—her hair had grown back—only to find that this cruel disease had returned.
Christina was unlucky, if I may put it like that, but she tried many treatments. That said, many people live long, productive lives with stage 4 breast cancer, with a variety of treatment options and new medicines being tested every day. If one treatment stops working, there is almost always another one to try.
Support is key at any time, but perhaps especially when cancer returns, after all the treatment, side effects, hair loss and remission—it is cruel. I hope that many have support from family and friends, as Christina had, particularly in her partner, Keith Brown. However, the family, too, will need support. There are professionals and charities such as Macmillan Cancer Support and Breast Cancer Now, community nursing teams, general practitioners and specialists, and even Citizens Advice can help with benefits and other financial or legal issues. It is bad enough coping with the disease without money worries.
I thank my colleague for securing the motion for this sensitive debate in the chamber and for the opportunity that we have had to remember our colleague. As we are, she would, at the very least, have been looking to improve treatments and slow the progress of the disease while seeking a cure, and she would have urged there to be better access to support and care, all of which require, as colleagues have said, better and accurate data.
18:06
I, too, thank Emma Harper for securing the debate, and I welcome and thank those who have joined us in the public gallery. As I outlined in a previous debate that Emma Harper led, there cannot be anyone in the chamber who has not been touched by cancer and who does not have either their own cancer story to tell or that of a loved one, family or friend. In this session of the Parliament, we have been impacted by the death of our friend and colleague Christina McKelvie, as well as the cancer journeys of other colleagues—Edward Mountain and Ruth Maguire—as we were in the previous session by the situation of our friend and former colleague John Scott. It is important to acknowledge those things in any workplace. In my maiden speech, I shared my story of losing my mum to breast cancer when I was seven and she was 44. I remember the loving story that Emma Harper told about her sister, Buffy, in a previous debate. It is important that we take the opportunities to share such stories.
Yesterday, alongside Jackie Baillie, I chaired the Scottish cancer conference at the University of Strathclyde in Glasgow. Yet again, it was a successful conference that got me thinking about the amazing people who I have had the honour to meet as an MSP over the past decade serving in the Parliament.
Two individuals who I take the opportunity to pay tribute to are Lisa Fleming and Jen Hardy. Both were at the heart of Make 2nds Count, which was founded in Edinburgh and has gone on to become a UK-wide charity that focuses on giving hope to women and men who are living with secondary metastatic breast cancer. Both have done so much remarkable work to continue to meet the needs of people who are living with breast cancer.
Jen Hardy went on to form and found Cancer Card, which is a cancer support directory that provides personalised support services. Lisa Fleming founded the House of Hope, which recently opened in the capital and is Scotland’s first bespoke support and wellbeing centre specifically for those who are affected by breast cancer.
There is something remarkable about women in Edinburgh using their personal experience to drive change and improve the lives of others who are living with cancer. Jen Hardy and Lisa Fleming, like Maggie Keswick Jencks before them, have used their cancer diagnosis to help to improve the lives of other people. Clare Adamson eloquently outlined the need for better data to help to achieve that. Make 2nds Count and Breast Cancer Now are clear that we need to see further progress in that key area, and I agree.
I do not think that men who are living with secondary breast cancer have been discussed in the chamber very often. Approximately 40 men in Scotland are diagnosed with breast cancer each year. It is interesting to note that, according to research by the University of Aberdeen, the incidence of male breast cancer in Scotland increased between 1992 and 2017. That rising trend was most pronounced in the north of Scotland and in rural areas. We need to understand the data to help us to analyse why that is happening.
For many people who are living with secondary breast cancer, there has been significant and—I think that we need to say this—welcome progress to help them to access drug trials and plan for the next steps of their treatment. It has been remarkable to see how those whom I have known for the past 10 years while serving in Parliament have carried out research on and talked to their advisers about the medical advice in order to push forward for better and kinder treatments.
The final word in Emma Harper’s motion is “empowered”, and my final word is on empowerment. The debate, I hope, is about empowerment and for Parliament again to hear about the need not only to carry out more work to raise awareness but to advocate for change and investment in the data that can help to drive that—our research communities are desperate to be part of that work. The Scottish Government needs to take more action to ensure that we continue to improve data collection on metastatic cancers and that people who live with the condition are better supported, counted and empowered.
18:10
I begin by expressing my sincere thanks not only to Emma Harper for bringing this important motion to the Parliament today but to my other fellow MSPs, who have all provided meaningful and thought-provoking contributions to our discussion. I also thank Emma Harper, Clare Adamson, Emma Roddick, Marie McNair and Christine Grahame for all bringing the name of Christina McKelvie back to the chamber. Her passion for and focus on ensuring that breast cancer and secondary breast cancer were kept at the forefront of people’s minds were such a great representation of how an MSP and minister can be. I thank them all for bringing a smile to my face, because when Christina is mentioned, that is what I do—I smile. She also gave me so much support.
I, too, associate myself with the motion’s commendation of the work of the charities Make 2nds Count and Breast Cancer Now. Thankfully, both charities are active members of the Scottish Cancer Coalition, and I gratefully appreciate their contribution to the national conversation on breast cancer issues. I value their vital work to support women living with secondary breast cancer in Scotland. I have met both charities on several occasions since I became Minister for Public Health and Women’s Health and look forward to continuing that important collaboration.
Breast Cancer Now published its five-year strategy at the end of September. I was pleased to note that we continue to be aligned on our priorities for cancer in the coming years and that its three key themes of earlier diagnosis, care and support, and new treatment echo the ambitions of our 10-year cancer strategy for Scotland, which we published in 2023.
I will touch on what Miles Briggs commented on. It is right to say that we are hugely privileged when we meet those living with cancer. They explain to us the way in which we can try to improve people’s lives not only in Edinburgh but more widely across Scotland. I feel very strongly about that.
At lunch time today, I was pleased to meet charities that support those with secondary breast cancer and campaigners who are living with the condition. I, too, very much welcome them all to our Parliament today. I thank them for their time, and I acknowledge the variety of experiences that they shared with me. I assure them that my officials meet health boards’ cancer management teams monthly to identify challenges, explore solutions and share best practice. I have specifically asked that they reflect on the conversation that I had with those who I met earlier today.
I am aware that the Cabinet Secretary for Health and Social Care is due to meet Breast Cancer Now and the campaigners Jen Hardy and Alison Tait in January 2026 to further discuss how we can support women living with secondary breast cancer.
We know that one in nine women living in Scotland will develop breast cancer at some stage in their life. Breast cancer is the second most common cancer in Scotland and the most common cancer detected in females. Miles Briggs was right to talk about men living with breast cancer and secondary breast cancer.
We know that early diagnosis is vital, and we continue to fund our detect cancer earlier campaign “Be the Early Bird”. Urgent suspicion of cancer referrals continue to be prioritised, and we are treating more patients with cancer on time within both standards compared with the same quarter six years ago. We have specifically invested in driving up productivity and tackling waiting lists, with support from the national centre for sustainable delivery. Together, our actions will further enable NHS Scotland to maximise capacity, build greater resilience and deliver year-on-year reductions in the number of patients who have waited too long for treatment.
Moreover, we are committed to ensuring that those who are diagnosed with secondary breast cancer receive the best possible treatment and support to live well. Our strategy has a range of measures that are aimed at benefiting all those who live with cancer, including the implementation of a single point of contact to support patients throughout their journey and after discharge. That approach ensures that people who are recently diagnosed with cancer have person-centred support and can discuss their specific circumstances.
We are working in partnership with Macmillan Cancer Support to improve the service that we offer patients with cancer through the transforming cancer care programme. That joint partnership, which is worth £27 million, is the first of its kind in the UK, and it ensures that people who are affected by cancer in Scotland have access to a specialist key support worker who can provide, and signpost them to, emotional, financial and practical support. As Pam Duncan-Glancy mentioned, that financial support is very important, and we are already seeing the positive impact of that work.
However, we do understand that there are still areas in which we can improve—indeed, I heard as much earlier—and that is why we are continuing to invest in initiatives that support earlier and faster diagnosis and drive person-centred holistic care. We will continue to work with Macmillan, other third sector partners and health boards to determine any new actions that are required to further improve the experience of people who are diagnosed with cancer. I noted Pam Duncan-Glancy’s comments about support for people living with disabilities, and I am happy to look at the points that she has raised with the screening team.
With regard to Alexander Stewart’s comments on palliative care, I agree that such care is very important. I was pleased to launch the “Palliative Care Matters for All” framework earlier this year, and I was also pleased that a palliative care doctor won doctor of the year award at the NHS Scotland health awards last week.
There has been a lot of comment on access to medicines and, as I said earlier, I met campaigners today, who shared their concerns about the Scottish Medicines Consortium’s decision not to recommend the drug elacestrant on the NHS in Scotland. The SMC operates independently of Government and must base its decisions on the best possible evidence. I know that it continues to keep access to new and emerging medicines under review, and the Scottish Government continues to work with the NHS and the SMC on improving access to new medicines. I assure members and those to whom I spoke earlier that doctors can still request to use elacestrant on a case-by-case basis, if they consider that it meets a person’s clinical needs, and I also state that the Scottish Government would encourage the pharmaceutical company to make a resubmission to the SMC.
Clare Adamson recognised the importance of genomics. The Scottish Government is improving the diagnosis and targeted treatment of disease through continued investment in genomics, and we recognise the importance of genomic testing.
I will make a final point on data collection. I, too, recognise the importance of data, and I know that it is an important issue for Breast Cancer Now and Make 2nds Count, as well as for patients, including those whom I had the pleasure of meeting earlier today. I appreciated the open and honest discussion that was recently held in Parliament, and I have heard clearly the requests from members across the chamber.
In our cancer action plan, we committed to improving data collection for metastatic cancers, starting with metastatic breast cancer, and my officials are working closely with Public Health Scotland on a thorough review of our options in relation to the collection of data on secondary breast cancer. That review will consider the clinical time that is required to do that work and how it can improve services and outcomes for patients as a priority. We will agree the best method of data collection by the end of the current cancer action plan period in 2026.
I finish by thanking Emma Harper and her colleagues for their contributions, as well as Breast Cancer Now, Make 2nds Count and other organisations that provide vital support and empowerment to people living with secondary breast cancer in Scotland.
That concludes the debate.
Meeting closed at 18:19.